Courage is not the absence of fear but rather the judgment that something else is more important than fear. ~Ambrose Redmoon
This section is for us, who are at high risk for Lynch cancers, as well as for those who care for us. These pages are intended as a road map, created by those who have been through the process and designed to assist others, who, hopefully, will pass the information on and continue paying it forward so families will be protected and lives can be saved.
Today's physicians are under more stress than ever before. With a shortage of general practitioners nationwide and demands upon their time, as well as a lack of awareness and education about Lynch syndrome, they don't have the time or the background knowledge to answer the numerous detailed questions of the affected individual. Lord knows we not only have a lot of questions and a considerable need for aggressive treatment by our medical professionals.
Most of us don't care about molecules interfacing with other molecules, the length of the strands of DNA within chromosones and the scientific factors of the specific mutations. Our needs are far more basic. In the world, there are enough languages, without us having to learn and understand medical and scientific terminology. Essentially, what we want to know is:
Do we have Lynch syndrome?
What is the effect upon my family members and my children?
Are we going to get the cancers?
What are the odds of survival?
Am we going to die?
At what age will we get the cancers, if we do?
What can we do to help deter cancers from occurring?
Is there affordable treatment for it?
What is that treatment?
Are there any long termed effects?
How do I find a good physician who knows how to care for us?
What do I do to prepare for treatment?
How can I protect ourselves and our family?
Will it affect our ability to get insurance?
Will our health insurance premiums increase?
Can we get life insurance?
Will we be discriminated against?
Does our specific mutation put us at a higher risk for a certain cancer?
How can we prepare emotionally for a lifetime of living with Lynch syndrome?
Are there resources for us to get assistance?
What annual tests do we need in order to stay alive?
How do we adapt and learn to live with this?
How do we tell my family about this inherited syndrome?
How will this change our lives?
This section is intended to assist one another through the myriad of processes, the hundreds of questions and the fears of the unknown encountered during the journey of traveling through life with Lynch syndrome.
Hopefully, many of these questions will be answered. If not, please don't hesitate to
We are here for one another. That is what Lynch Syndrome International is all about...caring for one another, protecting families and saving lives.
This diagnosis is a reminder that this is the life you’ve got. And you’re not getting another one. Whatever has happened, you have to take this life and treasure and protect it. ~Elizabeth Edwards
The Diagnosis Process
The first process toward diagnosis is to research and document a thorough family medical history. The Office of the United States Surgeon General has a computerized program for the convenience of individuals to complete. It can be printed and provided to our care providers for assessment of not only Lynch syndrome but all hereditary disorders. As well, the program has the capability to upload the documented family history directly to his/her medical record.
Be sure and take a thorough family history, asking detailed questions. Find out if there were any hysterectomies or any biopsies taken and from where. Were there any hospitalizations and for what? For those who passed away from cancers, see if you can get a copy of their medical records or death certificate.
If the family history reveals three family members who have sustained what appear to be Lynch cancers, (colon, ovarian, endometrial, prostate, gastric tract, pancreatic, ureter, heptobiliary tract, renal pelvic, skin and brain) two of the individuals which are directly related to the third, and one who is under the age of fifty years old, it is quite possible the family members may be at high risk for Lynch syndrome. This criteria is what is known as the Revised Amsterdam criteria.
This criteria is only accurate in less than fifty percent of all families that have Lynch syndrome and is also often not indicated with those who have the MSH-6. There are many families in which Lynch syndrome cancers evolve following the age of fifty and recent studies indicate an average age of 56 years when cancer occurs. There are small families in which it is difficult to find this pattern. Therefore, try to expand your family history as detailed and as far back as possible.
As stated above, in order to protect one's self and one's family, it is important to discuss Lynch syndrome with the family physician who may or may not prescribe consultation with a genetic counselor. A genetic counselor is a very valuable resource who can determine the appropriate test for an individual in the event the physician is uncertain about Lynch syndrome testing.
Dependent upon that assessment, blood may be drawn and collected for genetic testing or you may be asked to donate DNA by rubbing the inside of your check with a swab (saliva test) If genetic testing cannot be afforded, resources (see Menu for "Support") are available in many parts of the world to assist with costs. If a mutation is specifically identified with a family member, the cost of genetic testing is substantially reduced for that specific mutation.
If an individual has sustained colorectal, endometrial cancer or any other Lynch cancer and has been diagnosed with Lynch syndrome, that individual is referred to as a "Survivor." Prior to the diagnosis of Lynch syndrome, the tumor of the survivor may have been submitted for MSI testing or IHC testing. This process is basically a pathology test of the cancer to determine if characteristics of Lynch syndrome exist within it. If those characteristics are identified, guidelines dictate the physician will refer the survivor for genetic testing or consultation with a genetic counselor for consideration of genetic testing of Lynch syndrome. Several major medical associations are calling for universal MSI -IHC testing of ALL colon and endometrial cancer tumors as a basic standard of care.
If an individual has not sustained a Lynch cancer and has been diagnosed with Lynch syndrome, that person is referred to as a "Previvor." This means the diagnosed individual is at high risk for Lynch cancers and will need to participate in annual surveillance testing in the same manner as is afforded to survivors, in order to detect tumors before they become cancerous or metastasize into the body.
This annual surveillance and management for Lynch syndrome is a gift as early detection of cancers allows us to obtain early intervention through early treatment of the cancer or removal of polyps before they become cancerous and often before the cancer becomes life threatening. It is the closest thing to a cure, for us.
RECOMMENDED SCREENING FOR LYNCH SYNDROME CANCERS
Colonoscopy: Annually, beginning at age 20-25, or ten years younger than the earliest age of diagnosis in the family, whichever comes first. NCCN guidelines (NCCN Version 2.2011) state two to five years prior to the earliest age of diagnosis in the family, if under the age of 25 and to repeat every 1-2 years.
Endometrial Sampling: Annually, beginning between ages 30-35
NCCN Guidelines reflect despite no current scientific evidence, annual endometrial samplings may be useful in select patients. (NCCN Version 2/2011)
Transvaginal Ultrasound: For Endometrial and Ovarian Cancer: Annually beginning ages 30-35 NCCN guidelines determine this is at the clinician's discretion.
CA-125: For Ovarian Cancer. While there may be times screening can be helpful, NCCN has determined data does not support routine ovarian screening for LS. (NCCN Version 2/2011)
Ultrasonography With Cytology: Annually, beginning at age 25-35 (NCCN Guidelines, Version 2.2011 refer to an "annual urinalysis.")
Gastroscopy: Especially for individuals with family history of Lynch gastric cancers. NCCN guidelines recommends for consideration of gastric and small bowel cancer screening, an EGD with extended duodenoscopy (to distal duodenum or into the jejunum) and polypectomy every 2-3 years beginning at the age of 30-35.
Other screenings may be considered including baseline gastric biopsies to evaluate chronic inflammation, atrophic gastropathy, and intestinal metaplasia and consider shorter screening intervals in persons with normal histology. Evaluate for H. Pylori on the biopsies and by serology and treat those with evidence of infection. Consider enteroscopy at the time of the EGD to evaluate the distal duodenum and jejunum.
Consider capsule endoscopy for small bowel cancer at 2-3 year intervals beginning at age 30-35.
Examination and Review: Family History Review, Discussion of LS - Annually
Illustration Courtesy of Michael McCullough
Colon Resection: For individuals with active colon cancer that cannot be removed by colonoscopy. Subtotal colectomy favored with preferences of patient actively elicited. The National Comprehensive Cancer Center Guidelines recommend a total abdominal colectomy with ileorectal anastomosis in the event of adenomas not amenable to endoscopic rescection. (NCCN Guidelines Version 2.2011)
Hysterectomy and/or Oopherectomy: Discuss as an option after childbearing years to deter the high risk of gynecological cancers.
Dermatological Examination: For Muir-Torre (lesions of the skin including sebaceous adenomas, sebaceous epitheliomas, basal cell epithelioma with sebaceous differentiation, sebaceous carcinoma and squamous cell cancer (keratoacanthoma type.)
Other tests may be ordered at the discretion of the Clinician to include screenings for pancreatic cancer, CNS cancer, prostate cancer, liver cancer, gallbladder cancer and renal-pelvic cancer. Screening testing for H Pylori is often done. H Pylori is a bacterium which can enter the stomach lining. It triggers a release of cytokines which begin creating havoc by activating fibroblasts which rebuild infected tissue. The high concentration of reactive gasses released by the inflamed cells create mutations in the cell's DNA. The continued division of these cells creates cancer. Discuss with your gastroenterologist H Pylori bacterium and your risk..
The National Comprehensive Cancer Network sets guidelines for management of colorectal cancers and cancer syndromes. Access is free, however one must register. To locate the guidelines for Lynch syndrome, click under NCCN Guidelines for Detection, Prevention and Risk Reduction and then click on Colorectal Cancer Screening. There is an entire section on Lynch syndrome and the standard guidelines. Those mentioned above are a "patient desired standard" to minimize risk for the various cancers of Lynch syndrome.
It cannot be emphasized enough how very important annual surveillance is for those who are at high risk for Lynch cancers. Within the colon, the tumors of Lynch syndrome are often very small and flat, therefore, difficult for some gastroenterologists to view. Due to this small size, they can also become hidden within the folds of the colon. These tumors are extremely aggressive and it is not unusual to hear survivor stories of cancers growing and metastasizing earlier than two years, compared to the average dwell time of sporadic cancers which quite often take longer than five years.
Studies have revealed those with Lynch cancers experience a higher rate of survival than those with sporadic cancers. It is believed this may be due to the frequent surveillance testing and the detection of cancers before they become life threatening. Therefore, don't miss those annual examinations and if your physician attempts to talk you into examinations less frequently, stand firm in insisting on being monitored annually as several recent studies have indicated is the best professional practice.
There are many survivors who set a specific time each year, when their surveillance testing is scheduled. In some families, it is done after birthdays or important holidays. The psychological advantage is the distraction of the celebration of reaching another milestone or a big event, therefore alleviating anxiety. It allows entrance into the next phase of surveillance testing on a positive note.
“The most sacred place dwells within our heart, where dreams are born and secrets sleep, a mystical refuge of darkness and light, fear and conquest, adventure and discovery, challenge and transformation. Our heart speaks for our soul every moment while we are alive. Listen… as the whispering beat repeats: be…gin, be…gin, be…gin. It’s really that simple. Just begin… again.” –Royce Addington
Individuals with Lynch syndrome face a high predisposition to contract cancer. Cancer is the uncontrolled growth of abnormal cells. They follow their own form of development apart from the normal development of cell growth, division and death. They may travel to distant locations through the bloodstream or the lymphatic systems (metastases) or they may occur in adjacent cells.
Individuals with Lynch syndrome have an up to eighty two percent (82%) risk of contracting colon cancer during their lifetimes. If this occurs, treatment often involves prophylactic (preventative) surgeries, including:
Colon Resection: This procedure is ordinarily prescribed for individuals with Lynch syndrome and who have contracted active colon cancer which cannot be removed by colonoscopy. In most cases where the tumors are on the right, subtotal colectomy is favored with preferences of the patient actively elicited. This involves removal of most the colon, leaving a small amount to be reattached to the rectum.
The type of surgery one receives is dependent upon the location of the tumor and the advanced stage of the development of the cancer. There are many types of colectomies which are performed however the most common is the subtotal colectomy.
At first, living with a colectomy seems like an incredible challenge and can be frustrating, especially if one is undergoing chemotherapy shortly following the surgery. I can still hear my wonderful oncologist softly and reassuringly uttering, "Patience...time is your friend. It doesn't seem that way today, but trust me. It will get better."
As usual, the immense amount of wisdom she had, despite her age, was right...and it took about fifteen months for my colon to settle down and get into a routine that allowed me to do almost everything I was able to do before.
Each of us is different and some may not heal as well as others. However, what we need to realize is we DO heal and we do adjust to our life circumstances. There are ways that we can do almost anything we desire, even with an unpredictable colon!
Male Urinary and Reproductive Tract
As well, we may require treatment for many different cancers of the gastric system, the hepatobiliary system and the urinary tract system as well as the prostate, the skin, the brain, and women's cancers.
Female Urinary and Reproductive Tract
Women diagnosed with Lynch syndrome face an extremely high lifetime risk for endometrial (up to 60%) and ovarian (up to 12%) cancers. (According to recent studies this risk may be even higher.)
Unfortunately, the tests currently available for womens cancers are not totally accurate, though nonetheless, are still considered important procedures to undergo annually in hopes cancers will be detected.
Hysterectomy and or/Oopherectomy: This should be discussed as an option after childbearing years to deter the high risk of gynecological cancers. Most commonly, women with Lynch syndrome have the uterus and the ovaries removed as well as the cervix. This is an extremely common surgery conducted in the U.S. today and is believed to reduce the risk of Lynch syndrome induced womens cancers.
According to recent studies, the risk of alleviation from all cancers is not totally certain as there have been a few women who have contracted primary peritoneal cancer, despite having a hysterectomy.
The "peritoneum" is a thin, delicate layer of cells that lines the inside wall of the abdomen and covers the uterus, as well as extends over the bladder. Consisting of epithelial cells, the peritoneum produces a fluid which eases the movement of organs inside the abdomen. Cancer of this lining is known as “primary peritoneal cancer” (PPC) and treatment consists of much the same treatment as stage III ovarian cancer.
Though these cancers are rare, it is important to be alert to the symptoms which include
General abdominal discomfort and pain, such as gas, indigestion, pressure, swelling, bloating or cramps
Nausea, diarrhea, constipation and frequent urination
Loss of appetite
Feeling full even after a light meal
Weight gain or loss with no known reason
Abnormal bleeding from the vagina
Studies relating to recurrence of women's cancers following hysterectomy are ongoing at MD Anderson and being studied carefully. We urge everyone who has Lynch syndrome and who has undergone prophylactic surgery to participate in these studies in order to provide a better quality of life for those in the future.
Just recently, in Australia, teams of researchers are studying as to whether or not a component of Lynch syndrome exists, resulting in breast cancer. These studies have also been conducted in Finland, Spain, Lebanon and other countries. Early results indicate some Lynch syndrome survivors, with special subsets of Lynch syndrome, do contract breast cancer. There is far more research which needs to be completed to determine the specific extent of those cancers. To protect one's self, it is always best to perform regular self examinations and get an annual mammogram.
Those same researchers have discovered several cases of cervical cancer which appear to be Lynch syndrome cancers. This necessitates consideration of surgical removal of the cervix as a prophylactic measure, as well, when considering prophylactic surgery of women's organs.
Of note, sarcomas, thyroid cancer and prostate cancer have been discovered within the Lynch syndrome.
LYNCH SYNDROME AND THE FAMILY
Lynch syndrome is a family matter and is passed down through families. Following diagnosis of Lynch syndrome, the most loving thing any person can do is share that diagnosis with other members of their family. Its not just a loving act, its a moral act, especially since Lynch syndrome targets families and in most cases, there are ten to hundreds of other individuals who may be at risk and whose lives could be saved as a result of your diagnostic results.
There is no "how to manual" directing individuals in how to complete this process and it is often difficult and emotional and communication between each and every family is very different. Nonetheless, a gift of a diagnosis of Lynch syndrome is a gift of life. It affords individuals an opportunity to grasp control over one's cancers
and grants them a sense of empowerment in being involved in preventative measures in order to protect themselves and their families. No matter how you reveal the existence of Lynch syndrome, a diagnosis leads to prevention.
When advising children of the condition, its best to do so in small increments and in a confident and positive manner. Most individuals who grow up within a Lynch syndrome family are acutely aware of the family history of cancer, including children. Its a situation that is difficult to conceal from a child, so its best to simply be open about it. As time elapses, children become accustomed to its existence and both positive and negative future possibilities and are therefore open to genetic testing and ongoing surveillance, following adolescence. Finally, when they are of age, they will not only have the tools of being able to cope with it, but be able to make important decisions as to how to prepare for the future and living with Lynch syndrome.
Kids are amazingly resilient and adapt to situations quite easily. Their minds operate with an incredible sense of logic and understanding. With an open attitude and conversation, children become conditioned to prepare for testing when they become older. If hope is emphasized, there is little need for fear.
It's not denial. I'm just selective about the reality I accept.~Bill Watterson
Occasionally other adult family members, upon learning of the diagnosis, don't immediately wish to engage in testing. That response is often confusing to us, especially after what we, as Survivors, have experienced. However, it is important for us to remember an initial diagnosis of Lynch syndrome or cancer is often frightening and overwhelming.
Cancer is often harder to endure for those who love and care for us than it is for us. As a survival mechanism, we develop an early understanding with it and quickly find ways to adapt to fighting it. While chemotherapy is terribly difficult and others see the trials we experience with it, they really can't totally comprehend how we realize our "enemy," which causes us so much pain, can also be our friend in motivating a new attitude and revitalization of survival within us.
For many of us, cancer is a bittersweet experience and a brutal teacher. Through it, we learn how to appreciate and cherish life and relationships, as well as experience a new, intense desire, stronger than anything we have ever experienced before. We learn we have only two choices, to fight and to live or to give up and face the alternative. The world is no longer about "me and mine," its about "us and existence."
To those who care for us, what they see is cancer is a terrible unknown that devastates people. To us cancer is a terrible, familiar enemy that we understand and instinctively know to fight, while it tries to devastate us.
Finally, we, as humans, are predisposed to fight or flight, when confronted with fear or intense stress. Some of us fight and some of us run and thus attempt to escape the threat. Eventually, with time, and eventually seeing the alleviation of the threat, individuals often come around and submit to testing. It takes some longer than others and perhaps the message needs to be rebroadcasted in a different, nonthreatening manner, "Genetic testing is about life." rather than, "If you don't test, you will die."
Therefore, time is needed for others to adjust to the diagnosis. In that situation, its best not to push, but explain the facts in a calm, logical manner. Simply ask the individual what difference would occur in their lives if they determined to test and leave the decision up to them. As they see family member after family member test, they will eventually follow suit, hopefully.
The best thing that can happen from taking a test is one may be negative and the worry of the unknown timing of the almost certain impending cancers is alleviated as are the fears of the need to protect one's children from Lynch syndrome. The uncertainty is over.
The worst that can happen is not very different from the current situation with the exception of the positive factor that one will be able to receive yearly surveillance in order to apprehend and remove tumors before they become cancerous. In viewing it from that perspective, the uncertainty still exists as to when and where the cancers will come, if at all, however it is offset by the hope and the knowledge that with ongoing surveillance and early detection, the tumors are more easily and successfully treatable.
In both scenarios, uncertainty is lessened or removed from one's life. There is no more unknown and there is hope and empowerment in being afforded surveillance testing.
With time to digest the diagnosis, time to see what happens with individuals whom have been diagnosed, time to educate one's self and time to assess and reassess all the options, the individual will have the opportunity to make a choice, however comforting or however painful that choice may be to us.
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.
PREPARING FOR TREATMENT
Once diagnosed with cancer, a whirlwind feeling of being overwhelmed is not uncommon, as well as emotions of grief and loss. However, with so very much that needs to be done, there is seldom time to work through the emotional turmoil. Once diagnosed, we find everything moves very quickly. Actually, that's a good thing. It doesn't give us a lot of time to engage in negative thought and activity.
For a more rapid and comfortable recovery, a number of us have found advance planning dramatically helps to alleviate later anxiety and worry over what hasn't been done or what needs to be done, especially during recovery or during treatment. Not having these nagging concerns allows us to fully focus and concentrate on ourselves, in order to recover much more easily and to fully participate in treatment to annihilate the cancer.
Everything you can imagine is real. ~Pablo Picasso
Every one of us sees things through different eyes and the view in which we choose to see life and what occurs in life is often how we choose life to be, within our own realities. In example, if we view ourselves as alone and lonely, then we ARE alone and lonely and life isn't very happy or comfortable.
However, if we view being alone as our choice to indulge in peace and solitude, it then becomes a very comfortable and pleasant experience. Reality is subjective and the manner in which it exists is dependent upon how we view it to be and react to circumstances which may affect us.
Some people cherish antiques and view them as rich, heritage items. Others view them as used furniture. Some view spectator sports as a waste of time and others consider it to be pure pleasure. Some people view obstacles as "problems" and others view them as opportunities, making it easier to find a solution.
Cancer is definitely an obstacle and a challenge. It isn't for the weak of heart. It confronts us with a bold defiance in its desire to overpower and to conquer. How we choose to view it as well as view ourselves, is a very strong factor in how we choose whether or not to survive.
"Everybody needs beauty as well as bread, places to play in and pray in where nature may heal and cheer and give strength to the body and soul."
The same holds true of healing. The way we view ourselves and our health ailment is an important part of how we heal. When ill and while trying to recover, it is self defeating to over burden ourselves by allowing ourselves to be concerned over whether or not the house needs paint or the carpets need cleaning or the lawn needs mowing, especially if there is very little we are physically able to do about the situation.
That time could better be spent resting and revitalizing our strength following chemotherapy or spent engaging in visual imagery to obliterate the tumors or even spent reflecting upon the lives of our ancestors--considering what they endured and how they overcame almost impossible odds against them in a time when life was very difficult...and drawing from their strength.
It could be spent listening to music and allowing our bodies to heal, or catching up on reading that one book that caught our eye, or going through photo scrapbooks and thinking and sharing those important moments with those we love and those who love us. When we are ill, if at all possible, apart from medical treatment, our activities should be those for which we hold a passion, not those to which we are obligated. Positive activities and thoughts promote happiness. Happier people heal faster.
Finally, advance planning and removing potential problems and obstacles from our lives provides resolution and balance, allows us to relax and to listen to our bodies, thus giving us the psychological and physical strength required to fight cancer.
Below is a quick check list of things we felt may be helpful to complete prior to surgery and treatment. Think about them, consider them, delete some, add others...allow yourself to be fully prepared for concentrating solely upon RECOVERY! Therefore:
Spend a short period of time digesting the diagnosis and grieving--its normal, natural and necessary
Stand up and take action. Its empowering and strengthening.
Meet with your family and discuss the cancer and impending surgery.
Meet with the surgeon. Its your body and its your life. Ask him anything and everything you wish!
Submit to laboratory tests and collect your own blood if desired for surgery
Prepare legal documents including will and final directives (should always be done prior to ANY hospitalization)
Conduct a "spring cleaning" of home since surgery and chemotherapy may last six to eight months - wash those curtains, bedspreads, get the carpets cleaned and get the house smelling fresh, clean and welcoming for when you arrive home from surgery.
Perform necessary home maintenance to last until recovery and treatment is completed
Arrange for housekeeping
Stock home with food provisions
Arrange for home grocery delivery
Arrange for yard and garden service
Arrange for transportation to follow-up medical appointments and treatment.
Prepare room to be warm and comfortable for recovery. Nothing makes healing more comfortable than a well prepared room. Items you may wish to consider:
MP3 player or radio for music - music is soothing and healing.
Television with remote features.
Laptop with wireless capability.
Lots of comfortable pillows.
Telephone with intercom capability or mobile radios to summon assistance (so much easier than calling out for assistance and much less labor intensive for those who care for us.)
Corner shower seat (invaluable and wonderful for long, relaxing showers)
Rugs on tiled floor (to alleviate from cold if neuropathy occurs)
Night shirts (more comfortable to wear than pajamas or nightgowns)
Reading material and glasses
A good moisturizer hands, feet and dry body
Baby powder to alleviate irritation from linens.
Bed away from draft of window, but providing view of outdoors and sunshine
Beautiful, indoor, flowering plant
Bed pads to protect linens
Night lights to allow vision when getting up at night.
Ice Pack and Hot Pad...ice pack to reduce inflammation, hot pad to relax muscle contraction.
The final steps are to visit the anesthesiologist and, finally, prepare the day before surgery for the next morning.
Prior to surgery, it is important to stay clear of children and individuals who have been exposed to colds and viruses. With cancer, our immune systems are compromised and we have to be in the best condition possible, both emotionally and physically, at the time of surgery. A simple cold or virus affects us in the same manner it affects the elderly...and can quickly become a life threatening malady by developing into more severe complications such as pneumonia.
You may wish to dine at outdoor restaurants and watch DVDs rather than going to movie theaters and avoid crowded places before surgeries and while undergoing chemotherapy.
When entering areas with sick children and persons (labs, radiology clinics, hospital waiting rooms) its best to wear a mask. You may wish to keep one on you, when entering medical or other crowded areas, in order to protect yourself.
"Healing takes courage and we all have courage--even if we have to dig a little to find it."
LYNCH CANCERS AND THE TREATMENTS
If not detected early and treated or remove, cancers can metastasize within one to three years for those with Lynch syndrome. Metastasis is when the cancer cells may travel to distant parts of the body through blood or through the lymphatic system. As they spread, they detach from the primary tumor and they dig through the blood vessel wall to enter into the bloodstream. Again, they must exit the blood vessel wall to enter into the distant sites.
Unlike a "Previvor" who has been diagnosed with Lynch syndrome but has not sustained a cancer, the "Survivor" is an individual who has Lynch syndrome and has been diagnosed with a cancer. Dependent upon the extent of the cancer, treatment will vary. Many different treatments exist, both scientific and those involving complimentary alternative medicine.
The specific Lynch cancers and/or treatments for each of them include:
Other cancers of Lynch Syndrome include Brain Cancer and Muir Torre (a skin cancer consisting of sebaceous adenomas - gland tumors - keratoacanthomas)
The goal is to live a full, productive life even with all that ambiguity. No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived."- Gilda Radner
Ordinarily, one of two events occur which ultimately result in a diagnosis of Lynch syndrome. Either one gets the cancer and a Lynch syndrome diagnosis follows or a close loved one contracts cancer and family members are tested for Lynch syndrome. With Lynch syndrome, there is always a "sacrificial lamb" who opens the door so others may live.
If you ask any person who has been diagnosed with cancer or Lynch syndrome of their initial emotion experienced upon diagnosis, three words: overwhelmed, fearful and immense grief, consistently spill out as the description of their response to the devastating news.
Grief is very common to loss and a diagnosis of cancer or a syndrome predisposing one to inherited cancer is a loss--a loss of good health, a loss of control, perhaps a loss of a body organ, a loss of innocence, a loss of hope that the "family cancer thing" had eluded you, a loss of independence, a feeling of guilt and loss if one is negative for the syndrome while other family members are positive, etc. Working through that grief is a process.
Since I came to the White House, I got two hearing aids, a colon operation, skin cancer, a prostate operation, and I was shot. The damn thing is I've never felt better in my life."
First, we cry, and then, as SURVIVORS and PREVIVORS, we stand up and take care of business because we simply do not have the luxury of time to actively participate in the advanced stages of grief by focusing upon the anger and fear. There is too much to do and the stakes are far too high. We have to learn to pick our battles and save our energy for the highest priority of survival. Certainly, its only natural those emotions would arise on an intermittent basis but often they quickly drift away as moments fleetingly disappear as time flies past us. What is often misunderstood and interpreted as "courage" by others, is simply pure survival to us.
We realize we may not have the luxury of time to involve ourselves within negativity, especially when it doesn't present positive results. We totally understand there are two options we have within our lives and we have to immediately commit to one or the other of those options. We can either commit to life or commit to denial though I've never known anyone who has been successful over the long term in exercising denial and live long enough to talk about it.
Once we commit to life, our priorities change, as do we. We transform, becoming grateful for life, grateful for our families and we recognize what we have missed along the road we've traveled. Through our eyes, the resolution of life becomes more enhanced. Things are funnier, relationships are more special, the grass is greener, the sky is bluer and little things don't bother us as much as before. One Lynch Survivor put it perfectly, "People with Lynch syndrome are the nicest people I know. They are kind, involved and love life."
One thing about Lynch syndrome survivors and previvors...very seldom do you ever hear, "Why me, why did it happen to me?" from an individual with Lynch syndrome. We understand why and how it occurred. We understand it is part of our legacy from our families and those who came before us were far worse off than us. They didn't have hope or technology to thwart the growth of a cancer. They simply were diagnosed with cancer and went to bed and died. Us? We live!
I am not afraid of tomorrow for I have seen yesterday and I love today.
~William Allen White
Most of us have spent our lives focusing on life and living life to the fullest as a result of being a part of a family in which cancers have struck. Most of us have been raised to appreciate life, no matter what it brings.
For many of us who have lived with a "family cancer thing" and have seen loved ones die of Lynch cancers, a diagnosis of Lynch syndrome is a blessing and brings with it a sense of finality from years of ongoing concerns and fears of the unknown. Most human beings have a tendency to fear that which is not known to us and to gravitate toward that which is familiar. The family fear is now defined with a name and is no longer an unknown anomaly, allowing us to take control and own our syndrome. We can be tested annually and, more often that not, Lynch cancers are highly treatable when discovered at an early stage, thus giving us the gift of enhanced longevity. As it has emerged from the shadows, we become aware of what we are battling. We become empowered in being able to protect our families and ourselves.
We learn we are not the only ones in the world with this syndrome and begin to realize Lynch syndrome is far more common than we thought. In the United States, alone, over 600,000 individuals are projected to have the mutated gene causing the predisposition to cancers. To put this into perspective, that is the size of the population of Boston, Massachusetts. Amazing, huh?
Aerial View, Boston, Massachusetts
Even more amazing is it is projected that less than five percent of that 600,000 persons have been diagnosed, to date. It is estimated one in every 440 people have Lynch syndrome.
Very few of us, thus far, have been the only ones who have been blessed with genetic testing. The rest are unaware and vulnerable to cancers. Perhaps that is why it is considered a rare disease?
In fact, having genetic mutations are extremely common. Almost everyone has some form of genetic mutation--ours just happens to be being predisposed to cancers and fortunately, with today's technology and knowledge about how environmental and lifestyle factors interplay with cancer, we can protect ourselves.
Therefore, due to the above, we often don't take the time to engage in the delayed stages of grief. Some of us have surgeries and treatments we need to undergo and busy ourselves making the necessary preparations and planning to keep our household running during our time of recovery.
Others, without the cancers, have priorities to reestablish, the need to develop a good medical team and readjust dreams, begin the process of annual surveillance testing, figure out the best way to prepare the children and how to live life, with this new and different perspective.
So, initially, we do grieve. Its good for us to release the emotion. Then, we stand up and we prepare. We prepare for life and move forward upon a course of action. We prepare for surgery or treatment. We prepare our bedrooms for comfortable and positive recovery.We prepare our home so there are no urgent maintenance issues during the time of recovery and treatment. We plan how our homes will operate while we are navigating through the process and we take care of business and make certain our legal matters are resolved and our final directives are made, not solely due to fear but of caution and because it is a good business practice and the most loving thing we can do for our families and those who care for us.
"This year for the first time, there was a drop in the reported number of actual cancer deaths in the U.S...Although we are winning the "war on cancer," there is a remarkable opportunity to save hundreds of thousands of lives and to reduce suffering from this disease with lifestyle changes and an increased use of proven screening strategies."
-Dr. Carolyn Runowicz
We learn more about our syndrome and we make lifestyle changes, realizing environment and lifestyle interplay with our predisposition toward inherited cancers. We may choose to exercise more, work with guided imagery and positive affirmations, make adjustments to our diet and become aware of environmental factors which can exacerbate our risk. Every positive choice we make enhances our quality of life and our chances for survival.
We sit down with our family members and alert them to the risk. If we have cancer, we prepare for the difficult road ahead. A transformation occurs instead of withering within a cocoon, we stretch our arms and we embrace life.
"Gratitude bestows reverence, allowing us to encounter everyday epiphanies, those transcendent moments of awe that change forever how we experience life and the world."
So, we go through surgeries and treatments, which come too soon for our hearts and our emotions and sometimes too late for some of us, having been easier if there had been an earlier diagnosis. But we do it, because, again, we only have two choices once we have contracted the cancer.
We drag ourselves to the Infusion Clinics and make ourselves walk through that door, playing the odds, fully realizing the effort required will likely pay off with more moments of wonder and beautiful days. We are acutely aware of every breath we take and the colors and the smells of the earth around us. We experience an awakening.
Each day, following the completion of treatment, comes a renewed feeling of strength and a time of immense appreciation as well as a gratitude for life. After diagnosis, many survivors focus on ways to make their lives count and on public awareness so more families can be protected and more lives saved. Many engage in clinical trials and studies or enroll in registries so research can learn more about Lynch syndrome and the generations to follow may obtain a cure. Almost all make substantial lifestyle changes and undergo a change in priorities.
Just remember...there is substantial hope, technology and treatment today that we can live a far better quality of life than those who came before us. One thing is for certain. With the knowledge of how fragile, wonderful and beautiful life is, each of the days, months and years to come, will be special and filled with a magical wonder for those of us with Lynch syndrome.
"If you don't ask the right questions, you do not get the right answers. A question asked in the right way often points to its own answer. Asking questions is the A-B-C of diagnosis. Only the inquiring mind solves problems.
-Edward Hodnett (1841-1920)
CHOOSING YOUR MEDICAL TEAM
The General Practitioner
Aside from family members, the most important people in the lives of a Lynch survivor and previvor are their physicians.The choice of caretakers can make an enormous difference in the quality and longevity of life and we need to be very careful in determining to whom we wish to entrust our lives.
First and primary is our general practitioner. He/she has to wear a lot of hats and requires special skills, including catching speeding bullets with his/her teeth, leaping over tall buildings, having X-Ray vision, hearing more confessions than the parish priest and providing as much advice on how to cope in life than a psychologist or a bartender. He/she is our first line of defense in any illness, including Lynch syndrome and holds an enormous responsibility.
Today's physicians need the above skills, especially due to the lightening fast developments of medical care, whereupon it is essential to know almost every disease imaginable, how to test for it, how to diagnose it, as well as address and document all the patient's problems within an average of fifteen minutes per visit. It is no wonder we see most physicians, today, choosing to be specialists. It is also no wonder we see a severe shortage of GPs today, due to the extremely high, varied demands and the required knowledge to be an effective general practitioner.
In light of the requirements of today, the best GPs are super heroes and if we find one that has an inkling about Lynch syndrome or the time to research it, we have ourselves a super star that we and our families will wish to keep for life.
The process of finding a good practitioner is simple, however, with our special needs, we simply don't want one that is "good." In fact, that is true for our selections of our entire medical team. We want the very best and to find them, we're going to have to search.
Photo Courtesy of Alex E. Proimos
The first place to begin our quest for an excellent general practitioner, gastroenterologist, oncological gynecologist, genetics counselor and oncologist, as well as other specialists dependent upon our inherited cancers, is through referral by those who work in the medical field. Interview them as to the positive and negative qualities of potential candidates and ask who they would recommend to care for themselves and their own families. They always know the best, most dedicated and passionate doctors.
However, don't stop at that. Check out and research the doctor. Verify the level of education and whether or not complaints exist at the State Medical Board level of your state and other states in which they practiced. Run a quick check of the courts to see if they have been involved in any litigation. Research what activities in which they are involved and learn more about their lifestyles. Conduct a "Google search" on them and see what turns up. Then assess what you find, very carefully.
If you find your physician spends his/her weekends running marathons, be reasonably prepared to accept part of your recovery program to include exercise. If he/she has an interest in nutrition, expect your diet to be in question and lifestyle changes to be a significant part of treatment. If the physician writes they are interested in the spiritual health of an individual, it means they expect you to take on the emotional aspects of your medical care and to participate in your treatment in a positive, effective manner. (Actually some pretty sage advice...)
The next step is to call the office of the physician who meets your criteria and ask the nurse to ask him/her if they have ever treated anyone with Lynch syndrome. If the nurse responds, "Just a minute. Let me check with the doctor." things are hopeful. It means if something serious occurs, the staff isn't going to "shine you on" as what occurred above and the physician will be consulted. If she returns on the line and advises the doctor has treated individuals with Lynch syndrome previously or even states he/she hasn't treated anyone for it but knows all the criteria for the surveillance and management of Lynch syndrome and the effects of cancer treatment, that doctor is a strong candidate.
The third step is to schedule an appointment. During the first visit, note whether or not the physician takes a family history. If he/she doesn't, scratch the physician from your list. The family history is important not only for hereditary cancers but any and all hereditary disorders, such as blood clots, allergies, heart problems and other matters which can arise or interfere with Lynch syndrome management. It is a very basic standard of care, taught in all medical schools. If the doctor doesn't take the family history, don't walk, but run out of his office. If he does and you click with one another, come to an understanding with one another.
Seeking medical care and advice and following medical care and advice is a two way street. Just as we have expectations upon our physicians, they have expectations upon us. Its important to discuss these with one another and make certain an understanding exists as they are the experts in their field. Sometimes that understanding can be as simple as, "You are the doctor and I am the patient and I am trusting you to know and learn all you can about Lynch syndrome and protect and treat me to the very best of your ability and I will do whatever you feel is best for me but I need you to communicate with me and tell me what I should do. I will commit to listening to and following your advice and learn more about my syndrome in order to become more empowered and to achieve a positive and successful recovery."
Our general practitioners will be with us for years and some will care for us during OUR entire lifetimes while others will be with our GPs for THEIR entire careers. A mutual environment of trust and confidence in one another is essential, due to the long term relationship and the nature of our disease. The choice of a physician is extremely important to us.
My general practitioner is excellent. He has a passion for people, for life and for what he does. With a military background, his training is outstanding. His skills are excellent. He is a wonderful listener, is positive and full of energy. He is always prepared and has reviewed my file prior to our appointment, knowing up to the minute what has occurred with treatment with other members of our medical team.
He knows my background, both professionally and personally. He is aware of the challenges faced in life, of my children, of my husband, of our home and where we have lived. He is aware of the challenges of treating an independent patient as me and we have an excellent understanding with one another. He is the expert and his job is to keep me alive. I am the patient and my job is to follow his instructions, make lifestyle changes and keep my attitude positive in order to allow my body to work within his efforts. I like and respect him as a person and have the utmost confidence in his abilities.
Life with Lynch syndrome is greatly eased when we are so very fortunate to have an excellent general practitioner-- and one that cares, is passionate, dedicated, committed. competent and blends with our lifestyles.
CHOOSING A SPECIALIST
As mentioned above, we, with Lynch syndrome, need a few specialists in order to survive and in some cases, those of us with Lynch II need more than just a few. We want the best and the most experienced. The type of specialist we need is dependent upon the type of cancer we sustain.
In looking for a surgeon or a gastroenterologist, don't look for "Mr. or Ms. Warm and Fuzzy." Look for someone who will tell you the "way it is," and exactly what needs to be done as well as the expectations of you. Seek out someone who loves their job and has a passion for being the best. Ask your general practitioner for his recommendation of the best specialist for YOU, not simply the "best specialist."
Bedside manner is not the first thing we are seeking or want from a specialist (except perhaps our oncologist, gynecologist and our genetic counselor.) What we need, with our syndrome, is someone with the the best knowledge and the best skills in detecting and removing cancer.
One of the primary specialists many of us will need is a surgeon who will "resect" or remove the cancer and threatened surrounding organs, if they can safely be removed. In major population centers with a large amount of resources, there are surgeons who are surgical specialists, who have an immense amount of knowledge of a specific organ as a result of their specialty. They are able to keep on top of the newest means of technology and research discoveries. Those are the ones we, with Lynch syndrome, need.
Prior to surgery, interview your surgeon. Verify his experience. It has been my experience the surgeons which are the best for the resection of gastric cancers are either those who were trained or work in the large cancer centers or, today, the ones who have military experience in the Middle East, treating our soldiers. The trajectory of IED injuries ordinarily arise from the ground upward, thereby damaging the bowels and the gastric system. Not only are these physicians adept in colon and gastric surgeries but they are adept in successfully treating trauma situations which may occur during these surgeries. They are the best. And when it gets down to it, when we get into surgery, we don't want the new kid on the block, despite all his training.
Too many individuals put too little emphasis or notice upon their gastroenterologist. One of the most important physicians in our lives, the gastroenterologist needs to be extremely proficient, with an adept eye to seek out polyps and other anomalies in the colon or the gastric area which are characteristic with Lynch cancers. The gastroenterologist will also assess the family history, which will determine which tests are necessary for annual surveillance. He will examine us annually and be consulted if there are any abnormal tests that indicate possible problems in the gastrointestinal areas of our body. Often our relationships with our gastroenterologist last for years, until the end of our lives or the end of the doctor's career.
Some individuals require an annual endoscopy as a result of a family history of gastric cancers and some have none because their cancers have solely been those of the colon. What is prescribed is dependent upon the family history so if the gastroenterologist doesn't take a family history or take the time to speak with you, find yourself another.
An excellent example of a follow up examination with a gastroenterologist is as follows:
"We met with our gastroenterologist in the morning as a result of referral from our general practitioner due to rising liver enzyme levels. (Surveillance following colon cancer mets, diagnosed 11/2007) My doctor had updated himself with my medical history the night before. A chart of the gastric system was affixed on the wall in front of me. We discussed the human body and predispositions, conditions and lifestyle choices which could contribute to rising liver enzyme levels, such as fatty liver, diabetes, etc. A review was conducted of current medications which could escalate the levels. Diet was discussed, which could aggravate inflammation. The colon's ability to function effectively was discussed. We discussed the panel of testing conducted by my GP to rule out factors which may cause the elevation of levels. Further testing was discussed, including a prescription for a sonogram and a urine cytology as well as additional testing to rule out one or two other lessor, likely factors. An appointment was set by the physician for the testing and advice given on how to resolve reflux issues. The physician listened to concerns and examined the abdominal area with palpitations and listening to gastric activity. One area of pain was attributed to diet creating gas and reflux. Two areas of pain appear to be unrelated to the first and are being explored with further testing. After being educated and advised of the treatment plan, we left feeling comfortable and confident that no matter what was found, it would be resolved and treated early."
Anyone who has a physician such as that is fortunate. It is the example of an excellent gastroenterologist who is involved, takes the time to listen to us and explains information to us, allowing us to work on controlling and owning our own cancers. This is the gastroenterologist one wants when they have Lynch syndrome.
Women will need a good gynecologist or gynecologic oncologist. There are many gynecologists who do not know about Lynch syndrome or its cancers, despite the very high risk of contracting female cancers. Speak to your general practitioner and ask him to recommend a good one...one that would be desired to treat either the physician herself or the physician's wife. If available, individuals at risk for Lynch syndrome may wish to seek out a women's cancer specialist, a gynecologic oncologist who should and will know the risks of the lynch cancers for women.
For those of us Survivors, one of the most important individuals in our lives is our oncologist who will work with us while treating our cancers and who will remain in our lives during the "follow up" stage, for several years after treatment. The oncologist comes into our life ordinarily following the surgery.
The oncologist is our life line as we go through treatment. They will order testing to determine if the cancers are being eradicated, prescribe and track our treatments such as chemotherapy and radiation and monitor us, often for many years, following a cancer diagnosis.
An oncologist with an excellent team of oncology professionals; oncological nurses, oncological nurse practitioners and a trained, sensitive staff, is a god send. Often, treatment time is spent with these individuals and they become a very important part of our lives and a very important part of our chances for survival. Find an oncological team with whom you are comfortable.
Muir-Torre is a variant of Lynch syndrome which is characterized by the development of sebaceous adenomas, epitheliomas and carcinomas as well as kercantothomas (Various tumors upon the skin) as well as the possibility of development of the other Lynch cancers. It is important to realize skin cancers are a part of Lynch syndrome and to discuss this with our physicians for screening for the presence of these tumors. It is important to have a good dermatologist who has a knowledge of Lynch syndrome and Lynch related tumors on our team.
A good dermatologist for us, is familiar with Lynch syndrome and Muir Torre, a specific cancer syndrome, consistent with Lynch syndrome. The dermatologist will assess your family history and scan the body for anything on the skin which appears unusual. Dependent upon the family history, one may see the dermatologist every six to twelve months.
The Genetic Counselor
This individual is very important in our life as he/she will work with us and assist us in preparing our families for their missions in protecting themselves and their families through diagnosis.
The genetic counselor will take a family history and determine which tests are necessary to be ordered. They will explain Lynch syndrome in detail and answer any questions a patient may have about the genetic details of Lynch syndrome, about anti-discrimination laws and be able to give accurate information and facts about Lynch syndrome.
The genetic counselor, most often, will be available to assist in how to notify the family members about Lynch syndrome and be there to answer important questions one may have.
Lynch syndrome encompasses so many different cancers that many various specialists may be needed, including pediatricians (for the younger survivors) endocrinologists, neurologists, gynecologic oncologists, urologists, specialized radiologists and others.
To find the best specialists who have a strong knowledge of Lynch syndrome, the best approach is to first speak with your GP and ask for his personal referral and with whom he would work best. With an excellent GP, you can pretty much be assured he will only be referring quality specialists who will focus on providing you with the best of care.
Credit: CDC - Dawn Arlotta by Cade Martin 2009
"So if there is a purpose to the suffering that is cancer, I think it must be this: it’s meant to improve us." ~ Lance Armstrong
LETS TALK FOOD!
Many studies have been conducted as to defining a proper diet to deter the growth of cancer. Though Lynch syndrome is hereditary, environmental factors do play into the propensity to contract cancer. A diet to deter cancer is simply eating good nutritional foods. It isn't all that different from eating a normal, healthy diet. It's simply balance.
The reason diet is so significant and plays into creating a predisposition toward cancer is historical. Accumulating data in respect to cancer is fairly new, as good statistics on cancer incidence have only occurred since 1950, although the oldest cancer registry was established in 1932. Data on mortality, which goes back much earlier in the developed world indicates stomach cancer has decreased, taking second seat to lung cancer worldwide. However the rise of other cancers have increased, including breast cancer and colon cancers.
Cancer diagnostic technology vastly improved and became more sophisticated, progressing at higher and higher levels through the years. Today, mortality rates have decreased as a result of improved diagnostic knowledge, skill and technology, resulting in earlier diagnoses. The benefit we have seen from this is the improvement of survival.
Within the United States and the western world, general technology improved during the 1900s, as well, and the world became involved in mass industrialization which put emphasis over quantity of product and created an adverse effect upon the quality of environment, creating problems such as unclean air, mass fuel emissions, polluted waters, polluted soils, etc.
As the age of affluence approached, so developed the age of convenience. Vehicles became more readily available and less costly. Many families owned several and the family horses were put out to pasture. As a result, today, many people have stopped walking. Its not unusual to see them hop into the car and young moms and dads drive five or six blocks to the nearby elementary school several times a day in order to deliver or retrieve their children. As a result of technology, instead of an everyday necessary activity, as walking once was, exercise has become a "recreational activity" and a luxury only when it can be afforded or....desired.
As the consumer society developed, individuals purchased items that were convenient in nature, including processed foods, foods with chemical additives, non-stick coatings on cooking utensils, items made of plastics, etc. This love and desire for convenience extended to quick and different food preparation methods including use of the microwave, the outdoor gas barbecue and the creation of chemically improved wood chips to enhance food flavor. Meats became a staple in homes, used in large quantities, whereas in the past, it was only eaten in small amounts on occasion. The world developed a sweet tooth for items with sugar--sodas were no longer savored "treats" but an everyday drink, rich foods became part of the everyday diet as did artificial sweeteners. The people of the world took to excesses as competition and products became more and more available and more and more affordable.
We began to become a "feel good" nation which focused on the desires of the individual and not the needs of the person. The "me society" became one of entitlement and one that was prone to excess...anything, as long as it felt good. That is where we current are today, destroying ourselves, our environment, our communities and our families unless we find a balance.
During the 1900s, food production became more enhanced to meet the demand of the new consumer society which had developed. Methods were developed including hormone injections and controlled dietary feeding of animals instead of grazing upon natural forage. Pesticides, meat additives, artificial preservatives, soil additives, chemically enhanced flavors, water fluoridation and a host of other items were developed to feed into the gluttony of the world.
As a result, we humans began eating differently. Instead of coming in from the fields or going home for lunch and eating fresh, wholesome foods, we began commuting further distances to work and grabbing quick, convenience items--a bag of chips, processed marshmallow filled cupcakes and a can of soda for lunch or munching on a processed donut while drinking a cup of coffee on our way to work in the mornings.
Not only did food have to taste good but it had to look good. Dyes were used. Flours became processed and bleached, as did rice, to create a pleasing aesthetic appearance. Refined sugars were developed with a pretty, sparkling, crystal white appearance, rather than its natural state. The result was individuals were losing a considerable amount of nutrition required to stay healthy and had lost the natural balance of eating.
The world and the human being, in its ever constant pursuit to perfect itself had been poisoning itself. The result was a flurry of studies by medical researchers to find out why people were getting ill and contracting cancers. Study after study has determined outside influences, such as environment, diet, lifestayle and technology exacts a big effect upon whether or not one will get cancer and the more predisposed we are, the easier it will be to contract.
This becomes obvious with those of us who have Lynch syndrome. How is it that twenty percent of those who have the mutated gene don't get Lynch cancers while many acquire a myriad of cancers during their lifetimes? What is the difference between those who have survived a cancer or two and live to old age while others succumb while young? Clearly something occurs which increases the odds of survival for some and decreases the odds for others.
It appears cancers, including those of Lynch syndrome, may have possibly evolved as a result of the above mentioned factors.
Prior to 1913, a University of Ann Arbor, Michigan professor and pathologist, Dr. Aldred Scott Warthin noted and identified a family that had a "familial cancer." During treatment of a young woman within the family, he gleaned the members medical histories and in 1913 documented his findings of this fascinating German family.
Within that family, which had been researched back to before the Civil War, it was noted there had been a history of stomach cancer, colon cancer and uterine cancer. At the age of sixty (60) the first diagnosed died of colon cancer at the age of 56, leaving behind ten children. Three of his five sons and two of his five daughters died of a possible Lynch cancer, the men developing stomach cancers and the women, uterine cancers.
Warthin died by 1936 and had documented 17 individuals from the first two generations of that family had sustained cancers, with an introduction to intestinal cancer in the third generation. Upon his death, his associates Carl Weller and Jerome Hauser, continued his work, finding far more individuals within the family contracting similar cancers. There was little note of colon cancer.
The third generation, which consisted of seventy individuals indicated only two of those individuals died of stomach cancer, fifteen died of uterine/ endometrial cancer, seven died of colon cancer, three died of rectum cancer and one died of cancer of the intestines. It appeared the family had evolved during the 20th century and the incidence of stomach cancer had decreased and cancer of the colon had increased. Finally, in the last generation, Dr. Henry T. Lynch, who had followed this family, following Weller and Hauser, noted the incidence of stomach cancers had dramatically decreased and was almost nonexistent with many of the cancers sustained being replaced by cancers of the colon and the rectum.
We have to ask ourselves why and how the cancers evolved and changed. Dr. John Potter, MD, PhD, of the Fred Hutchinson Cancer Research Center studied this and published an opinion piece in 2001, entitled "At the interfaces of epidemiology genetics and genomics."
He determined based upon his experiences with Lynch syndrome and study of the family documented above, "High risk variant alleles, (forms of gene ordinarily arising as a result of mutation and causing hereditary variance ) such as MSH2 mutant alleles in HNPCC families, with pleiotropic (multiple) effects across generations of the same family, probably, as a result of changes in environmental exposures."
What environmental factors? Certainly smoking and diet has played a major role in the evolution of the cancers. In fact, individuals with Lynch syndrome may be at an increased risk for colorectal cancers. As a result of environmental factors, in the U.S., we have noted an increase in cancer. Interesting to note is this trend is being followed globally as the same sort of evolution of cancers which has occurred here is beginning to occur more widely in some European countries and elsewhere in the world.
It is important we ask ourselves why the risk of contracting cancer for the average male in India is one fifth of that for the average American male? Why has the rate of colon cancer in Japan become the highest in the world and much higher than within the United States? Why do the Chinese have lower rates of colorectal, breast and prostate cancers than we sustain in the U.S., and why are there rising occurrences of these cancers now being observed in their urban areas? Finally, why do those who consume a Mediterranean diet (lots of fruits, nuts and vegetables and very little red meat) have far less cancer than their American brothers and sisters?
So, what do we do to survive? We eat an anti-cancer diet, which is basically a balanced diet. We exercise and protect ourselves by using less chemicals around our homes and yards, engaging in healthy activities and avoiding unhealthy environments.
It has become clear to us that diet, exercise and attitude is a big factor for deterring cancer and perhaps growing and providing our own food sources are far more reliable than those commercially available to us. Gardening our own food is certainly healthy in it allows fresh air and activity for us.
What is also clear to us is, whether or not we have a predisposition to cancer or whether we get cancer, a big factor in contracting cancer and/or a specific cancer is likely a result of lifestyle, cultural and environmental impacts. The big question is whether or not we will recognize many cancers are a result of our love and desire for technology, self gratification and convenience and what choices we are going to make in the future in order to protect ourselves and our families.
Cancer came back into my life twice in order for me to understand something, and I guess I still wasn't getting it. And my husband wasn't getting it, either.~Mariel Hemingway
Cancer cells take up more sugar than any other cells in the body. Consuming sugar doesn't make cancer grow faster, but cancer does feed on glucose as do all tissues that use a lot of energy.
Being predisposed to cancer, we should consider reducing or eliminating refined sugar from the diet in order to deter cancer as well as avoid other disease such as diabetes, etc. The same is true to high carbohydrate foods, breads, snacks, etc., which revert to sugar in the body. Studies indicate an impaired glucose metabolism may contribute to pancreatic cancer. Its much healthier we break our dependence upon sugars and as one very astute Clinician has suggested, "Control the sweet tooth and keep sugar use to a minimum."
Dark chocolate has been considered to be good for us and a deterrent against cancer! The darker the chocolate, the more antioxidant it contains However caution is recommended. Only the dark chocolates are considered healthy and balance is the key. A good practice is indulgence in moderation...
Limit or eliminate red meats. (The World Cancer Research Fund recommends no more than 18 ounces per week.) Some studies indicate a reduction of 50% red meat may reduce cancer as much as 50%. Recommended individual meat portions are the size of a deck of cards (about three ounces.) Eating meat sparingly as an ingredient and taking it from the center of the plate, rather than as an entree, such as in a beef stroganoff or pastas or soups and stews can help reduce eating meat, painlessly. We seek organic beef from animals which graze, rather than are fed with filler foods such as corn, etc. Going vegetarian (pastas, rice dishes, vegetable casseroles, etc., several times a week can make an enormous difference and decrease in risk.
Colorful vegetables are not only pretty but a great addition to an anti-cancer diet. For maximum effectiveness, briefly cook broccoli, cauliflower and other high fiber vegetables rather than boiling. Prepare beans, peas, legumes, romaine lettuce, carrots, yams, pumpkins, squash, swiss chard, greens, parsley, celery, and shitake and other Asian mushrooms.
Omega 3's are healthy and include salmon, herring, mackerel and other fatty fish as well as walnuts, canola oil, broccoli, cantaloupe, kidney beans, spinach, grape leaves, Chinese cabbage, cauliflower and flax seed. These are essential for us to consume on a daily basis.
Rather than eating potatoes as a staple, consider substituting them with yams, sweet potatoes and brown rice more often than not. Potatoes are fine on occasion but all too often we eat them as french fries, or with butter or fatty sauces upon them. Recent studies have evidenced the preparation of the potato can be a problem for those at high risk for cancers and snacks, particularly chips, are particularly a problem. Moderation and balance are key words in respect to use of potatoes in the diet.
Further, you may wish to consider substituting multi-grain and sourdough breads for white bread and purchase range fed chicken and use butter instead of margarine. A recent study has determined dairy products do not put individuals at high risk for cancers, however there is still concern about the fat content within dairy products perhaps posing a risk.
Having Lynch syndrome and a predisposition to cancer, a low fat diet is essential. Again, this is an item one may wish to use with moderation. Its been recommended to avoid excess salt and saturated fats. Ir has been long recommended to cook with extra virgin olive oils and canola oils instead of corn oils.
Green tea, dark teas and coffee has been greatly studied and it has been found all of these have a similar set of interesting and possibly useful anti-cancer compounds in them. A study by Texas A&M conducted on the consumption of coffee indicates a compound known as trigonelline may reduce the risk of contracting colon cancer. However, there may be a dark side to it for some individuals. Researchers advise patients facing problems with estrogen dominance and other estrogen related conditions such as breast cancer may wish to avoid consuming the compound as it may increase their levels. Finally, just recently, a study from Finland of Finns appears contradictory to the study by Texas A&M indicating heavy coffee comsumption indicates no benefit for the Finns, whatsoever, from drinking coffee.
Strongly consider avoiding processed and prepared foods. Afterall, it only takes about two minutes more to prepare homemade salad dressings, mayonnaise, mustard, etc., and they taste so much better without the high amounts of sodium, the chemicals and the preservatives prepared items have. Recipes for homemade preparation of condiments are abundant on the internet.
Finally, a bit of diversity is always good for an open mind, open heart and cancer free life. Incorporate evening meals, each week, to include basic Mediterranean foods, Asian foods, food from India, seafood and simply homemade soups and salads. Experiencing diversity with foods is not only fun and wonderfully tasty, but could be life changing and life saving.
The internet is full of tips on how to protect one's self from cancer however before taking anything, be sure and discuss it with your physician to make certain it will not harm you or interfere with your treatment. Don't let that supplement sales person sell you anything until it is discussed with your doctor.
Studies have recently indicated the sun is great for us as a major contributor of Vitamin D within our body! A new study released January of 2010 indicated of 1248 patients, those with the highest blood levels of vitamin D had a 40% lessor risk of contracting cancer than those with lessor levels. Of course, more studies need to be completed. In respect to taking Vitamin D supplements, long termed adverse effects are not known if Vitamin D taken in high doses. However, it does appear Vitamin D, obtained from foods and the sun, is extremely good for us and may be a deterrent against cancer. Grab your sun screen and head outside every day to take in a few rays! However, while Vitamin D is helpful in alleviating some cancers, a recent study indicates it does little for lessor known cancers. So, sunshine may help alleviate colon cancer, however may do little for other cancers. One thing we do know...it does lift spirits and makes the day brighter!
Over the years, there's been a little secret few individuals have known about--a product called Sun's Soup, made of vegetables which may inhibit cancer growth. Studies have and are being conducted of it and its properties and it has been found to slow the growth of cancer tumors in mice. It may be something to think about after it has been closely studied.
We need to be cautious with what we read in "studies," taking into consideration the population studied, including lifestyles, environment, ethnic diversity and many other differences between culture and societies. Studies are simply a silhouette of conditions which exist in a specific place, at a specific time, with a specific group of people. A good place to find out if that food or supplement is good for us, check with the NIH first, who studies not only top technological treatments but natural treatments, foods and claims of cancer deterents. They have a great search engine, where you can simply put in the item and read the recent U.S. and internationally collaborated governmental research on it.
Bottom line is we know fresh foods are good for us...we know balance and moderation with eating, as well as in life, is important. If it looks healthy, tastes healthy and feels healthy...its probably healthy for us.
With gratitude to Dr. John Potter of the Fred Hutchinson Cancer Research Center, Seattle, Washington, for his very patient and lifesaving lessons in the importance of diet and exercise, "anti-cancer style" and MD Anderson Cancer Center for their terrific tips!
One must not forget that recovery is brought about not by the physician, but by the sick man himself. He heals himself, by his own power, exactly as he walks by means of his own power, or eats, or thinks, breathes or sleeps.
Cancer treatment can be devastating to the normal functions of our bodies, wasting muscles and weakening us. Exercise keeps the muscles working and the body flowing in rhythm with itself, much the same as the inner workings of a clock. Everything operates in sync with one another and we keep ticking!
When we exercise, it eliminates a number of the short and long term side effects from treatment and deters the growth of new cancers.
It helps us rest and sleep better, allowing our bodies to repair themselves without distraction.
It reduces fatigue.
It repairs muscular deficiencies.
It keeps us flexible and enhances dexterity and balance.
It cleanses our bodies of unwanted toxins.
It increases strength and muscle tone.
It supplies oxygen to the body, the brain, the cells and the blood, enabling them to ward off cancers and enhances resistance.
It reduces blood sugars upon which cancers thrive.
It makes us feel good!
Psychologically, exercise has its benefits:
It helps us relax and minimizes stress.
It elevates our moods.
It induces a sense of empowerment and reduces the feeling of vulnerability.
It makes us strong and confident, thus instilling hope.
Each of us could come up with several dozen excuses not to exercise but that takes as much energy as exercise takes. Rationalizing reasons not to exercise is pretty counter productive. Further, its conflicts with the rest of our character which advocates we CAN acheive anything we set our mind to acheive, including survival.
With that in mind, it basically comes down to "where do we start?" And the answer to that is very easy...all we have to do is look deep into ourselves, reflect to the past, think about applying it to the present and simply doing it, in the future.
Close your eyes and take yourself back to when you were eighteen years old. Its Saturday morning, the sun is shining and you were eager to leap out of bed and do.....what? Was it play tennis, go swimming, hike, walk around town with your friends, roller skate, ice skate, ski, run, dance? Did you go bowling, ride a horse, ride a bicycle, go sailing, canoe? Did you go to work and buck hay or stack boxes or ride the surf on a surfboard or boogie board? Was it sledding or enjoying the smells of autumn while raking leaves?
When did we lose our passions to do those things? Life is full of adventures and we'll only find them if we get up off our couches or easy chairs and get out into the world. Relive your youth and do all the things you loved doing.
Exercise doesn't have to be boring...it can be fun and educational. Grab a basketball andput the kids or the grand kids to shame by showing off your skills and tossing a few buckets! Listen to beautiful music and dance with a friend on the back lawn, under the stars. Dust off that mitt and race out to catch a few fly balls or attach that leash to the collar of the dog and take him to the park where you can play ball together.
Life is about people and relationships and exercise can be a lot of fun...in fact too much fun to do alone. Grab your friends, members of your family or fellow survivors and jump into it!
Almost everything in life involves exercise and activity...its just a matter of getting out there!
Oh, by the way, if you don't like this message, then go fly a kite, jump in a lake, take a hike. Just do something that gets you moving!
CHEMOTHERAPY AND SKIN
Chemotherapy often results in the flakiness, itchiness, drying, cracking and peeling of skin.
While undergoing chemotherapy, it is best to use a simple, high quality, gentle moisturizer on the face and neck, stay hydrated, drink lots of juices containing antioxidants and avoid prolonged exposure to extreme weather conditions (either too hot or too cold.)
When bathing, make certain water isn't too hot (or too cold.) Following bathing, it helps to dry off gently, patting one's self with a towel, rather than rubbing. Baby oil is excellent to rub into the skin to revive moisture. Use mild soaps and laundry detergents to avoid aggravating skin conditions and avoid perfumes with scents. If bathing becomes painful, sponge bathing is an option.
Lips often become chapped and chaffed and a good lip moisturizer is a Godsend. Add a good skin treatment moisturizer, such as Aveeno to a tepid bath to alleviate dryness and pain. Cool wet cloths can also be used to help alleviate pain.
Avoid tanning beds and don't use cosmetics or skin items that have alcohol as an active ingredient. Alcohol is a drying agent and can aggravate inflammation.
During chemotherapy, skin may appear more transparent and wrinkles and dark spots may appear. Most of this disappears following completion of chemotherapy, during the months following when the chemical effects dissipate from the body. Your doctor can prescribe ointments which will remove dark spotting.
Its at this time, that the skin is very sensitive to sunlight, so while undergoing chemotherapy, keep your body covered. It doesn't mean you can't go out into the sun...sunlight is vital and is an important source of very badly needed Vitamin D. Just remember the skin is very susceptible to burning, so make certain to protect it with sunscreen.
Neuropathy, a side effect from some chemotherapy treatments, causes damage to nerve endings and when serious, can cause sloughing of the skin from the hands, lower legs and the feet. Report this to your doctor immediately, if it occurs. Gently massage the effected area with creams. Keep feet clean and covered with warm socks.
Any major skin changes need to be reported to your doctor immediately as they could create lifelong damage.
CHEMOTHERAPY AND HAIR
Some chemotherapy treatments create a thinning to the hair and cause it to be dry and brittle.
Frequent shampooing is very hard on damaged hair. To compensate, use a gentle shampoo such as a baby shampoo and reduce of times you shampoo per week to no more than three. Allow the hair to dry by gently patting it with a towel and if at all possible don't use the blow dryer, hair straightener or curling iron. They are very harsh on hairs.
If the hair isn't falling out, then there is no problem using hair products, however if it is damaged, its not a good practice and only aggravates the problem.
Perms and hair coloring are not recommended during chemotherapy for at least six weeks following, because of potential scalp and skin irritations. Chemotherapy affects the root follicles and its not known what the results of perming or coloring of hair could be as the interaction of chemicals could create anything from hair loss to fried, brittle hair, to some interesting colors and waves.
If it appears you may lose your hair, it is easiest to cut the hair short during the process. You won't wake up in the morning with hair in your mouth or the devastation of seeing clumps of hair laying on the bottom of the shower or floating in the tub. For emotional sanity, cutting it short is sometimes best. If hair loss has occurred, when outdoors, its best to wear a head covering in the sun and to use sunscreen to avoid sun burn upon the scalp.
There are some interventions some individuals use to try to deter hair loss, while going through chemotherapy. Be sure and discuss these with your oncologist before attempting:
1. Some individuals place cold packs upon their head while taking chemotherapy to slow the flow of blood to the follicles so chemotherapy won't destroy the roots of the hair. The problem with this is the chemotherapy drugs may not reach all the cancers if they are in that specific area , so do not even attempt this without discussing it with your oncologist first.
2.Some individuals use medications marketed for male pattern baldness. There is no evidence these products work and the concern is they may interact in a negative manner with chemotherapy. Before considering this, be sure and speak with your oncologist.
Bottom line is we may just need to suck this up and view it as one of the little inconveniences we go through in our quest for life as we define and ask ourselves, "Which is really more important? Life and the temporary loss of hair or the alternative? In that context, it really isn't much of an issue, is it? So, in the grand scheme of it all, "Hair grows back...life goes on...life is good!"
Chemotherapy and Nails:
Chemotherapy plays havoc with nails. Often, while undergoing chemotherapy, they will be brittle, won't grow as long and surrounding skin will be dry. They may be discolored and break easily.
It is not a good idea to cover nails as it may result in creating an environment that may invite fungus or other problems. Its best to wait to have nail treatments such as wraps and acrylics done several months following chemotherapy, after it has dissipated from the body as they can often harbor and trap bacteria, leading to infection.
While undergoing chemotherapy, you may notice a line develop across the nail. This will disappear after chemo leaves your body, following treatment. If nails are not cracked or broken, its probably okay to paint your nails as long as the nail remover doesn't have acetone as an active ingredient. Acetone can be pretty harsh on fragile nails.
It is easiest to simply keep nails clean, trimmed and short and to use a good hand cream to retain moisture in the skin.
State and federal laws exist which prohibit discrimination against individuals with disabilities, including cancers, California having one of the strongest laws in the nation. Further, federal law has recently expanded to include anti-discrimination laws based upon one's genetic history with legislation known as GINA, the Genetic Information Nondiscrimination Act of 2008, signed into law by President George W. Bush. It is the first act of federal legislation to protect individuals from discrimination. Though imperfect, it is a start to resolve issues with insurance companies and employees which create barriers toward testing.
The basic rule is unless one actually has contracted a cancer, discrimination is prohibited by all except for life insurance companies, disability insurance carriers, long termed insurance carriers and the United States military.
There is no protection for individuals who have contracted a cancer, under GINA, however ADA laws may apply for discrimination in the workplace.
If you have questions regarding discrimination or sustain difficulties with insurance companies and coverage, there is help through the Cancer Legal Resource Center in Los Angeles.
The Cancer Legal Resource Center (CLRC) is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.
A cancer diagnosis can carry with it a variety of legal issues, including insurance coverage, employment discrimination, access to health care, and estate planning. These legal issues can cause people unnecessary worry, confusion, and stress, and can be overwhelming. When these legal issues are not addressed, people may find that although they have gotten through treatment, they have lost their homes, jobs or insurance.
The CLRC has a national, toll-free Telephone Assistance Line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of the CLRC's Professional Panel of volunteer attorneys, insurance agents, and accountants can provide more in-depth information and counsel to CLRC callers.
During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun, and suddenly you're out. You don't know how you'll answer the door when your groceries are delivered. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous.
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While going through chemotherapy, side effects often occur. It is important to keep our immune system strong so we don't catch illnesses and viruses which can affect us and our treatment.
Treatment Options (An excellent article which discusses chemotherapy, radiation and other types of treatment for cancer.
Managing Side Effects (A very comprehensive article with many tips on how to overcome the side effects of some treatments.)
Managing Neuropathy Neuropathy is a common side effect that is often included as part of today's chemotherapy treatments for colon cancer. With it comes temperature intolerance, pains in the hands, fingers, feet and legs, tingling sensations, numbing sensations, loss of balance and other possible effects. If it becomes difficult for you, be sure and discuss it with your oncologist who can adjust the dosage of chemotherapy or find an alternative treatment.
Eating Hints Excellent ideas and types of foods that help alleviate nausea. The biggest bit of advice we found valuable in dealing with nausea was to take the anti-nausea medication prescribed by the physician about two hours before arising, with a piece of toast and a few sips of tea, water or juice. This prepares the stomach for the daily activity and then when getting up, go ahead and eat. Again, take the medication about thirty to sixty minutes before dinner and do so at the same time every day. Scheduling is everything and can help many in a dramatic way for many, if effective planning is conducted.
Chemobrain Chemical brain is one of the most frustrating side effects for active individuals. This article helps explain what it is and why it happens alleviating fear and concern of its existence.
In order to attempt to control it, many of us play word games to keep the mind vital and busy and do our busy work in the mornings when we need to be fresh in thought. We don't know if this works, but it certainly does provide some reassurance.
The loss of memory can be frightening. Remember, much of the effects of "chemo brain" disappear within the first year following completion of treatment and almost all go away. If a lapse of memory occurs or you experience difficulty with navigation, comprehending directions, etc., simply stop, take a deep breath and relax. What it is you are searching for in your mind will come in most cases...for those of us with chemo brain it just takes a little longer than usual for the memory to function.
Sometimes its easy to set ourselves up for frustration. This is one of those situations where it is ripe to occur. So, try to find ways to lessen the opportunity. In example, when undergoing chemotherapy sometimes its difficult to follow a movie. So, watch a television show. The sequences are shorter and the plots aren't as complicated. Sometimes reading is difficult. Try reading a few paragraphs at a time and then take a rest, returning to it when the mind refreshes itself.
Don't let chemobrain embarrass you or feel uncomfortable about interacting with others as a result of it. Most people understand chemobrain, especially after it is explained as a temporary side of effect of chemotherapy. During conversation if you lose the conversation halfway through, apologize and explain you have chemobrain. They'll understand and most often, will help you find the words you need if you give them a definition.
Try and stay away from situations involving stress or conflict. Chemobrain can occur during those times and that is another time which is ripe for frustration. The last thing any of us, who are fighting cancers need, is undue stress, frustration or negativity in our lives. We have choices and the best choice is to stay away from it. There isn't time for it in our lives.
Prophylactic Surgery to Deter Cancer Surgery to remove tumors and to remove organs which have been attacked by cancers is a common treatment. It is suggested prophylactic surgery be conducted for the removal of the uterus and the ovaries, following childbearing years due to the extremely high risk of cancer for those who have Lynch syndrome. The Mayo Clinic has come up with a new surgery, for colon resection, which at the same time, can also remove the female organs, without having to make a major external incision. This is fascinating new technology which accelerates the rate of recovery for individuals, called natural orifice surgery.