What if your family history meant annual screenings and removal of various body parts?
Article Source: msnbc.com
from:msnbc.comA life in limbo: At risk for 12 cancers
Seeded on Mon Oct 18, 2010 9:02 AM EDT (msnbc.com)
- msnbc.com sites & shows:
- TODAY
- Rock Center
- Nightly News
- Meet the Press
- Dateline
- Morning Joe
- Hardball
- Ed
- Maddow
- Last Word
- msnbc tv
Leave a Comment:
It's unfortunate that the respected doctors did not mention to her the advantage of changing her diet to improve her chances of escaping colon cancer. Perhaps they never read The China Study by Colin Campbell, which cites study after study in which transitioning from an animal source based diet to a plant based diet greatly diminished the chances of developing many types of cancer. He explains and proves in various studies that eating fiber rich plant foods is especially effective in improving colon health.
Marilyn - a change in diet will not change ones genes. There is no diet that will transform mutated cells.
Now is probably not the time for your misguided vegan agenda.
Certainly diet and lifestyle are a factor in whether those genes get the better of you- they are not a guarantee but it would be naive to dismiss them. Read "The China Study" before you judge Marilyn's post, it is an important contribution to the literature of cancer prevention as is "Anticancer."
Everything we do in regard to maintaining good health is important. Knowledge is paramount. Certainly every consideration should be taken. It has been reported that people should not take personal DNA information as the gospel as far as their long term health goes. It doesn't always define our outcome. It just means that we MIGHT have the propensity to acquire these problems and certainly many other factors are involved including: Diet, exercise, stresses, and exposures to pollutants and of course the sun, to name a few.
Marilyn, a change to a plant-based diet will improve just about anyone's overall health. BUT, (and even putting that in bold and italics for emphasis isn't sufficient emphasis) there is no way to change someone's DNA. That is immutable, at least with our current medical knowledge. And it seems that this Lynch gene is no ordinary gene. It's going to wreak it's havoc no matter what.
That book may be applicable to most people, but not in this case. And there are a very few people who, from a very early age, were fed an almost entirely animal-based diet and whose bodies, therefore, have completely lost the ability to produce the enzymes necessary to digest and absorb the nutrients of a plant-based diet. For them, eschewing animal products makes them physically sick, and can lead to malnutrition, along with all of the illnesses that go along with malnutrition.
As with everything else, there is no one answer. And the writer did go to one of the world's foremost cancer centres. If changing her diet to an entirely plant-based one (which you probably understand is a change that must be done in stages) would be of any assistance to someone who carries the Lynch gene, she would have been advised to do just that.
And for the record, I am a vegan, and have been for 9 years.
Yeah, just like cardiologists advise their patients to adapt the diets of Ornish and Esseltyn, the diets that have been proven to reverse atherosclerosis. uh huh...
If I were this woman I'd be on a veg diet and have my biological progeny on it yesterday.
It may only be me but I fail to find the specific genetic mutaion that the author has inherited within the article. I carry a genetic mutation that increases the rick of cancer - a defective BRAC2 gene. It would be helpful if the author could identify the specific gene involved, assuming she knows it. I assume she knows it given the extent she is going to reduce the risks of cancer.
She did - Lynch syndrome. If you look it up, you'll find that it's more than one gene. And since anyone can look it up...
Mother had Clear Cell Renal Carcinoma, Father has Glioblastoma Multiforme primary bran cancer, his brother just went through his 3 occurance of Prostate cancer, my mother's sister just found out she has a tumor on her lower spine (path report not back yet for typing), paternal grandmother had skin cancer on nose, paternal great grandfather had colon cancer, and paternal great grandmother had some form of cancer in her abdomen. Found out all of this in the last year. Scared out of my mind that I'm at risk for getting some form myself, can't get any generic marker screenings. CANCER SUCKS!!!
What a wonderful and insightful article. I believe she's made the correct decision. Removing your colon is not a fun thing. I have a few friends who wear "the bag" because they had theirs removed. Cancer isn't prevalent in my family, but heart issues are. However, I'd hate to find out if I had it. As a Type II Diabetic, I am doing all I can to reduce my reliance on the medications needed to control through proper diet and weight control. It's a tough battle, but I'm winning it. I hope she is able to keep from getting any recurrences.
My older brother (then 65) had his colon removed 3 years ago - no bag - surgeons used his small intestine and attached to his rectum. While bowels evacuate faster - works like a charm. He has never been healthier.
Good luck to all - remain diligent and stay well-informed.
After three colon cancers from Lynch syndrome, I had my colon removed. Although modern surgery can do wonders in connecting the colon directly to the rectum and avoiding ostomy, I was not a candidate for that surgery.
However, I have learned to live very successfully with an ostomy. Fear of "the bag" shouldn't prevent people who carry on of the Lynch syndrome mutations from having life-saving surgery.
katemm - Great news for you.
While I don't at all make light of your circumstances - sometimes the removel of the organ - be it breast, uterus, colon, etc. is the only path to life. Thank God we have the means-medical knowledge-surgeons to do this.
As I wrote - my brother has never been healthier - enjoys life to it's fullest. Very best of wishes for your continued good health.
To willowbrook, even though the author has genetic mutations for certain types of cancer, a healthier diet and lifestyle will go a long way to whether or not those mutations develop into cancerous cells. For example, her earlier years of smoking may have increased her chances of developing the early colon cancer that she had removed. A genetic mutation is not a guarantee of cancer, but when combined with an unhealthy lifestyle, cancer is given a much greater way to succeed.
Me too - there are no guarantees. I grew up eating home grown food, rarely had sweets or processed foods. I was diagnosed with kidney cancer at age 47, (which is young for this type of cancer.) I lost a kidney, no chemo or radiation. No one ever talked about diet, except not to follow an Atkins-type diet as they are hard on kidneys. Obviously, after already being diagnosed, changing the diet will make no difference, (except for keeping as strong as possible when having chemo or radiation) and I had a healthy diet all along anyway. (Healthy by normal standards.) But, I do have some history of cancer in my Dad's side of the family, so I believe I have a genetic connection. BTW, they were mostly farmers, back before the days of all the fertilizers and pesticides.
My mother died of Multiple Myloma. My Grandmother died of Breast cancer. My Sister had uterine tumor which the had to do a hysterectomy and my brother had polyps removed on his colon exam. Today, I have to go in today to get a hard black spot on my lip removed and tested..Cancer is just everywhere... it is almost impossible to avoid totally. I have a real fear of ending my life in pain, as my poor mother did. That was just too much..
Terminal illnesses, even in their final stages, don't have to mean that you'll be in pain. This is why hospice care exists, and why there are pain clinics. With the correct, for you at any given stage meds, your pain would be manageable. In fact, you could be pain free.
If I had your family history, I'd be doing everything possible to be screened on a regular basis and I'd already be researching the concept of hospice care. Talking to your family doctor about that concept is what some people in the US refer to as a death panel. It's not. It's a quality of life thing, and it's available.
rpearlston - I actually think that when most people talk about "death panels" what they are REALLY talking about is the rationing of healthcare. It happens in every socialized country - and it is happening here and will get worse if the govenrment eventually completely takes over our healthcare. They are ALREADY making big cuts to Medicare. It's just a matter of not having unlimited resources. The government will HAVE to make rationing decisons - and the very sick and the elderly will absolutely take the brunt of it.
Oh please, FC, rationing of healthcare already happens in the US and it has nothing to do with medicare or the recent healthcare reform. Rationing already occurs when someone can't get health insurance, either due to pre-existing conditions or because it's to expensive and they can't afford it. Rationing also occurs when someone who has insurance is denied treatments because it isn't covered under the plan. Open up your eyes. If things don't change to something along the lines of what exists in other socio-democratic countries, the only people who will have access to health care in this country will be those that have the money to afford it - and that won't be very many.
Anyways, this article had nothing to do with politics. I admire the author's strength to decide not to have her colon removed. I can imagine all the internal conflicts she must have gone through to come to her decision, and it couldn't have been easy.
fiscalconservative - some details would be helpful... how, exactly has healthcare been "rationed" in this country? Explain it to me. Other than those without insurance basically doing without care - at least until they end up in an emergency room and then have to be treated. Maybe you're talking about the rationing insurance companies do when they deny coverage based on a "pre-existing condition" clause? I'm interested in hearing your details.
Certainly cuts have to be made in reimbursement rates for doctors and hospitals because of limited resources. For a lot of years they had an open checkbook when it came to government payments. And we have to have a serious, grown-up, conversation about end-of-life issues. It's not just about the cost either - or "pulling the plug". It's about having as good a "death" as possible when the time comes and not dragging it out with unhelpful tests and treatments.
Here's the problem with your thesis - I live in Canada, where we have socialized medicine because it's the right thing to do. And we don't have "rationed" medical care. We also don't have people being bankrupted trying to pay off medical bills that no one can possibly be expected to be able to pay off over the course of their AND their children's lifetimes. That's because we regard universal health care as a right, as being as much a basic necessity of life as air and water.
So, the next time that you want to criticise "socialized medicine", keep what I've said in mind, and perhaps you'll be able to see the light.
In the meantime, remember that it's the traditional US model of health care that has been the one that rations care, and does so based on income only. Why is it that you think that that works?
We are kindred spirits, another Lynch family, with the fragile genetics associated. Some mutations turn on the cancers and others fail to turn off cancer cells when they begin to divide. Do not accept blame for this mutation, since as you know Lynch cancers are not your fault, not the fault of your diet, or your lifestyle. In my 40's and also the mother of 2 young daughters, I had my Stage IIIC Endometrial Cancer sneak in like a thief and steal my grasp on life. I had thought all the prayers and deals with God would work. I had already paid the price of losing my joyful childhood witnessing my father's three different and each miserable cancers. ( The last deadly one caused by the chemo itself meant to cure. He died at 54). Then, my sister who never smoked or drank or ate red meat and was herself a nurse died within one year at 31 of her cancer, a rare histiocytoma. No, we don't get the classy pink ribbon cancers with the foundations and the bumper stickers and the live survivors. We get the killers and the "I am so sorry we do not know any cures for 50% of cancers and yours are among those." I have seen experts at MSK, and Mayo and Mass General and I am so thankful for medical care. My younger brother, too, at 41 died of his stomach cancer after a mere 6 weeks beyond diagnosis. He and my sister were diagnosed at Stage IV. So, I am thankful I was caught through extreme vigilance at the last stop on Stage III. This after every 6 month endoscopies, and colonoscopies showed only the metaplasia, and not dysplasia. You see, the cancers race one another to get the chance to kill you. Your challenge is to stay one step ahead in the race. I certainly was offered surgery to remove parts of my stomach as well, and consider hooking up to a feeding tube at night, since if the stomach cancer comes, it kills quickly despite best medical attention. It doesn't matter what you eat or avoid. These are not happy words to read, and as I type them, they are my reality. My husband does not cope well, cannot take care of me, and blames me for my genetic shamefulness which may have "poisoned" our daughters. Even my doctors do not know what to do with that kind of attitude, which has isolated me and made my cancer survivorship thus far very difficult. Husband will not even hug me or comfort me in the least. This is the dark underbelly of having a rare and difficult cancer problem such as this; many do not discuss the husbands/family who never hold your hand or provide any solace through agony. No one wants to hear this, but you do when you are in the inner sanctum of treatment and health care workers admit they see it often. They just don't tell anybody because it is too much to bear. I am a healthcare professional myself and saw it too, before I had to see it in the mirror. We all like the magical thinking instead, that it will never happen to me, that if it does your spouse will be the knight in shining armor, that you will get better, and all will end well. Thankfully, we are in the minority of people dealing with these awful cancers stealing our families. I am educated, and wince at hearing people blame the patient for the cancers. True, many have lifestyle at the core, BUT not genetically based cancers. Be kind and do not judge us. We visit our beloved ones at Thanksgiving gathered around the family gravestone, not the dining table. Thank God if you do not have the kind of troubles which make conversations about which organs need to come out, which should come out, and which might stay for an extended visit. I have wonderful daughters who need research to help their generation find a way out of this darkness. I go on for them, through pain and scoping and radiation and all the conversations in a glance. Chin Up, stop complaining folks, and for God's sake, don't preach and blame to steel your fears or feel immune to cancer. I, for one, didn't ask for this.
Diet can affect cancer. The field of nutri-genomics is all about how food affects how genes are expressed.
Fear induced wealth extraction and the US medical profession.
Too many friends and relatives have buckled into the promise of extended life at the expense of quality of life. And the promise of extended life has been on an average, only six months. The ones who decided to live with cancer and minimal treatment tended to live 4-8 times longer than that and didn't leave their families destitute, something that's really important to the survivors.
I am so sorry for all the au thor is going through and I think she is doing everything that she can. However, I think it is incredibly insensitive to say having a predisposition to cancer is worse than one to heart disease. As a person who watched thier father die at 34 from heart diesease and suffers from it myself, I think it is a very naive statement for her to make. Perhaps it seems worse because it is what she is suffering from, but she is comparing apples to oranges. I am a 25 year old runner and soccer player with high cholestorol but, doctors are unwilling to give me medicine to "fix" it because it is processed through the liver and the effects have not been studied long term. So, I stay on top of my screenings, to discredit one of America's biggest silent killers is a little stupid. Good article, but a little insensitive.
I have Type II diabetes and three different types of systemic arthritis, and one of them is inflammatory. I've heard too many stories about doctors who don't care enough about their patients to pay attention to those patients or to the needs of those patients. I've even had such doctors, including, at one point, a GP.
I keep telling people that having a doctor with such an attitude is more than sufficient reason to change doctors. That's something for you to consider, too. Do your own research on the meds involved, if you haven't already, so that you can have informed discussions with your doctors.
And the author didn't belittle cardiovascular disease or people with it. She simply said that the management tools for cardiovascular disease include meds, while there is no such option for Lynch Syndrome. That's a statement of fact, not a judgement.
What's also fact is that everything is processed through the liver and/or kidneys. They are the body's filters. And there are ways to help to protect your liver.
Its a very well written and I wish the author good luck down the road with her medical issues. I found it extremely difficult to deal with the idea of ones own mortality. There is that ever lingering thought - what if I had done things differently? Your article has accomplished one objective - let people know what's happening and keep them informed. The next step is the living will statement and the assurance that it will be respected. Take care.
My heart goes out to you and your daughters for having to not only deal with the horribleness of cancer, but to have to deal with such a miserable excuse for a husband/father. You need support and love. I hope you have other family/friends that can give that to you. If not, you certainly have support here. It doesn't matter what you have done or didn't do as far as your health, no one deserves cancer... Stay strong for your daughters and I hope you find some peace.
Read the book "The China Study"... you can influence what genes are "expressed" by what you eat! Even if you are predisposed to cancer, you have a really good chance to avoid getting it with a whole foods plant based diet! And some extra Vitamin D3 depending on your latitude, skin color, and sun exposure.
I am not saying a young person should not do ALL they can to ensure their survival. One thing, though, keeps plaguing me and that is that this country is under some ILLUSION. The illusion is that death is wrong. No, it's not wrong and sometimes it's very right. In a natural way one might think that illness and death are nature's way of weeding out bad genes. I heard some veterinary students on my local transit talking about that. For example, all the drugs we have to sustain life which before now would never have been sustained. Two come to mind: cholesterol, and diabetes. If one takes pills to right bad test results one does so prophylactically but the disease itself through the genes will be transmitted through DNA during procreation. The same is true for cancer treatments. Sometimes they work BUT they allow the one who is ill if they are young enough to transfer those genes to another generation keeping the disease alive.
I wanted to enter the conversation but I did not. I wanted to say well when it is YOUR mother or YOUR daughter or YOUR loved one no one wants to weed out those genes by the loved one dying prematurely. After I got off the train I thought it was an interesting dialogue and one I had NOT ever thought of.
What is the goal of life? To be born, to live and to die while in between transferring part of your genes to another generation. IF you transfer bad genes your child will often suffer the malady. Taking drugs to cover up the malady does nothing to rectify the gene.
I can see how in this person's mind she chose eliminating the organ that is the source of the disease. It does not however eliminate the gene. The REAL breakthrough will be when science discovers TRUE GENETIC therapies. Changing one placement of one letter may be enough IN SOME CASES. In others it may be utterly complex as many genes and sequences are involved.
Interesting to think about ... very.
So touching and well written. I wish the author and her family all the best!
Overlooking the point!
Valerie's story is a tragically fascinating outlier. I'm sure we all wish Valerie speedy negative test results for many years to come and a long life with her family by her side, but the greater message is lost if the resulting dialog focuses on one particular holistic preventative measure.
I think most of us can agree there is little doubt a diet rich in fruits and vegetables, and low in processed food (animal or otherwise) is beneficial, and not simply in terms of the dreaded C word. Pick your aliment and proper diet may improve, if only slightly, the outcome. This question may very well comedown to a matter, not of eliminating processed food or carnivorous abstinence, rather simple portion selection. The truly substantial and relevant message applicable to a far great number of the general population is lost if the reader overlooks the first several paragraphs.
***The annual screens are the key to detecting cancer before it becomes a killer. *** This means calling your doctor, walking in the front door and taking the tests, no matter if you have White Coat Syndrome, are afraid of needles or the dreaded colonoscopy. The simple fact is the tests work. The tests, most very simple can prevent a range of issues, while the more invasive procedures are becoming less so every year. Valerie said herself she only discovered her condition after she took responsibility for her health a got screened.
"Get screened" is the message we should all take from this. If Valerie had not, her 3-centimeter polyp in her sigmoid colon could be eating her from the inside right now, but she made the brave choice and lives to tell the tale. She lives to give mothering advice to her children and lives to wake her husband up in the middle of the night, so he can soother back to sleep. Get screened. Be brave like Valerie and live because you got screened.
Let the simple science of detection and removal do it's part and many cancers would see a dramatic reduction in ocurance.
As a side note: We all owe Morgan Freeman and Jimmy Smits a special thank you for bring attention to the highly preventable Colo-rectal cancer by simple removal of precancerous polyps. This is not a sexy cause to get behind. It is not 9-11 or Kids getting sick. This is adult stuff. The stuff that saves parents, so kids don't grow up without the people who love them the most.
This is a taboo subject and it takes a special like of person to champion the screening and treatment of a cancer no one wants to talk about. We all fear the test, but ask yourself if you prefer a simple test, or missing you child getting married. After personally watching a father of 4 painfully die of colorectal cancer I implore you to be a grownup and get screened. Cancer can't kill you if you nip it in the bud (or polyp).
I wish the author the best. Personally, I think knowledge is the best weapon, and Valerie has that. She has the courage to face the truth, and that isn't any easy thing.
Variations in the MLH1, MSH2, MSH6, and PMS2 genes increase the risk of developing Lynch syndrome...Breast cancer is increasingly under the microscope as a Lynch Cancer. In My family 2 cousins and 1 aunt also had breast cancer.
I have lost 2 brothers, a sister and my dad to Lynch Syndrome
Variations in the MLH1, MSH2, MSH6, and PMS2 genes increase the risk of developing Lynch syndrome...Breast cancer is increasingly under the microscope as a Lynch Cancer. In My family 2 cousins and 1 aunt also had breast cancer.
I have lost 2 brothers, a sister and my dad to Lynch Syndrome
Lynch Syndrome International
www.lynchcancers.com
I feel very badly for her two daughters. At least this woman was past child bearing before she got this awful news and had her hysterectomy. I can't imagine being a teenager and thinking that I was at high risk for several types of cancer.
My family also has Lynch...I am a survivor of multiple cancers at an early (for cancer, under age 50) age: ovarian, endometrial, and bladder. One brother has died. another is on his third bout of cancer: colon, recurrence of colon, and now bladder. another brother, the luckiest so far, one bout of colon cancer at 60. The two other brothers were both diagnosed before age 40.
Valerie: the good news about Lynch and colon cancer is that we have a higher "cure" rate and longer remission (one brother was in remission for 20 years) rate than the normal cancer population. They don't know if that has to do with the gene mutation itself or that we are more carefully watched.
I feel the recommendation given the writer in this story about taking the colon out is extremely drastic. Colonscopies on an annual basis should catch anything that happens soon enough, which is now the current recommendation for Lynch patients (every two years if no polyps/cancer are found; every year if a polyp is found until a "clean" colonoscopy).
However, I fully agree with the decision to have the complete hysterectomy. For years I told my gynecologist that what I was experiencing was not normal perimenopause, and she didn't believe me and didn't know the connection between Lynch and female cancers. Finally I went to another gyno. I ended up with Stage IIIC endometrial cancer.
For the rest of you -- in the blame the environment, diet, lifestyle game -- give it up. People love to point a finger at cancer patients to assauge their own fears: it must be what you ate, where you lived, how you lived -- if I live better I won't get cancer. Folks, It's a matter of genetics. It doesn't matter when you have Lynch, it really doesn't. EVER.
You and everybody on this thread can help actually speed up research on cures and treatments for all types of cancer.
The world community grid helped the Chiba institute in Japan to complete in just 2 years over 100 years of research if they did not have help . They went from very little data to having compounds ready for evaluation in just 2 years---this is staggering what we can do as a collective, not only that but by doing volunteer computing we free up the much needed funds for the actual lab work,staff and equipment that would other wise have to be spent on very expensive super computer run time.(we can beat the worlds best super computer-jaguar with two others helping it-we will be even more powerful if you would join us :).
Here are the links, please join us and pass it on. Tell others. YOU can make a difference.
http://www.worldcommunitygrid.org/also check out Youtube video for world community grid
You can go to the research tab and find the Chiba website that will verify the 2 year time table.http://www.m.chiba-u.ac.jp/class/bioinfor/wcg/e/hfcc_e/news.html
Just so you know I am also a member http://allprojectstats.com/showuser.php?id=177029
.
Hi Marilyn...it is believed, when dealing with cancers, whether or not they are hereditary, there is an interplay between a number of factors.
The specific genes of Lynch syndrome work in repairing mistakes made when DNA is copied in preparation for cell division. The mutations disallow the repair of DNA mistakes and as cells divide, uncontrollable cell growth may result in cancer.
Though our cancers are hereditary and caused by a mutated gene which is unable to correct the DNA, we CAN, in fact, help protect ourselves through diet. The gene doesn't cause cancer, it fails to protect us from cancers and leaves us predisposed to getting cancer--therefore, if our bodies are inhospitable hosts to cancer, our odds are better--thus diet is EXTREMELY important as an anticancer diet is important for everyone, especially those at high risk for cancers.
On the website www.lynchcancers.com, there is a section regarding diet and cancers...we just spent some time with our aunt, who is now 85 years old and who has Lynch syndrome and experienced two bouts of colon cancer!
She has been extremely careful with her diet and with her environmental lifestyle and lived longer than anyone in the family (who ordinarily died by the age of 55 of various Lynch cancers.) Diet is essential toward longevity and health especially in respect to cancer and the body's ability to fight cancers.
Best to you!
I cannot begin to state how wonderful it was to read this article and to see not only the public awareness of Lynch syndrome but to see the experience with a terrific physician who recognized the risk.
Lynch Syndrome is the result of one single mutated gene...These genes work in repairing mistakes made when DNA is copied in preparation for cell division. The mutations disallow the repair of DNA mistakes and as cells divide, uncontrollable cell growth may result in cancer. The genes, themselves, don't cause cancer...they predispose one to cancer.
Therefore, many of us with Lynch syndrome, can make life choices which can enhance longevity and reduce the cancer risks...such as changing diet, exercising, etc.
To learn more about Lynch syndrome, please join us at www.lynchcancers.com.