Colorectal cancer is one of the most common cancers and the second leading cause of cancer death in the United States. When detected in the early stages, colorectal cancer is usually curable. In addition, when precancerous polyps are detected, their removal prevents colorectal cancer from developing...Among racial/ethnic groups in the United States, African Americans have a higher risk of incident colorectal cancer and death than White Americans and are more likely to have their disease detected at a later stage. (Source: http://cebp.aacrjournals.org/content/14/1/182.full)
Colon cancer holds many different implications for different groups and some groups may attach a stigma to having a disease, such as colon cancer. For example, some in the African American community believe colon cancer to be the result of homosexual behavior, or that screening measures are painful; these false notions should give us pause and are cause for tremendous concern. Inaccurate social stigmas and information may be part of the reason why some in these groups are reluctant to have colonoscopies and therefore suffer a higher mortality rate from colon cancer in comparison to other groups. I suggest that advocacy efforts need to be specifically tailored to address the social stigmas within different groups and cultures; we cannot assume "a one size fits all" approach to colon cancer advocacy.
There are various cultural and socioeconomic factors and a plethora of important barriers which must be considered and addressed within various groups. Medical information and treatments can be misunderstood due to: patients feeling uncomfortable and embarrassed discussing bowel issues with their doctors, a patient's limited knowledge, misinformation about cancer, mistrust of the medical community, concerns about privacy, lack of insurance, religious beliefs, and emotional issues such as fear, and social stigmas associated with seeking emotional support. (Source:http://www.tandfonline.com/doi/abs/10.1080/10810730290088094#.UqDsXBYcg20)
I had the pleasure of meeting Mr. Samuels in Miami last October at the Colon Cancer's Alliances Annual Conference
(please go to: http://ccalliance.org
for more info on this fantastic organization). I have met a lot of people through my advocacy work and he is by far one of the more fascinating people to me. I wrote about him a few months and talked about why I believe him to be unique in the colon cancer advocacy world; he's never had colon cancer, has no family history of it, and yet, he uses his profession as a hair designer as a platform to educate his clients on it.
He is a stellar example of someone who is tailoring colon cancer advocacy to reach those who are mostly afflicted and most likely to die from colon cancer. He is an important figure in the African American community because he is educating them on colon cancer and is making a tremendous difference in where it is mostly needed. Knucks to Rod, I applaud him and his tremendous efforts!
Please find Rodrick's guest blog below...
Rodrick Samuels; Colon Cancer Advocate
African American barbers shops and beauty salons are at the cornerstone of our community. Women and men speak freely, beyond the topic of hairstyles…we talk about our lives and often confide in each other about our health, or of the health of our loved ones.
Colloboration between The South Carolina Cancer Alliance
, The American Cancer Society, the Center for Colon Cancer Research
, and The South Carolina Gastroenterology Association
created the program, Shop Talk.
These various organizations teamed up with local stylists and barbers statewide to implement an evidence-based health program in an effort to reach out to African-Americans; Anjee Davis of Go Fight Colorectal Cancer
spearheaded the initiative.
The Shop Talk
program promotes awareness within the African-American community by offering conversation and education about colon cancer during haircuts. The African-American population is targeted due to a 50% higher chance of dying from colon cancer than their peers.
Colon cancer often shows no warning signs in its early, most curable stages, making screening a necessity. The cancer always starts as a polyp in the colon and early detection of polyps through a colonoscopy can make colon cancer a preventable disease.
I have been named one of the directors for Shop Talk
. It is nothing for me to spend the day cutting hair and talking to men about colon health. When you have a relationship established with your client, you can pretty much talk about anything, so it makes it a little bit easier for us to talk to them to ensure sure they are taking the necessary precautions to prevent colorectal cancer.Shop Talk
has successfully thus far trained over 350 barbers and stylists from across South Carolina and also collected over 2000 promises from clients to be screened for colon cancer; barbers and stylists spread colon cancer awareness in hopes of improving the health and saving the lives of friends and family for many years to come.
For more information, please feel free to contact Rodrick at:
I'm a bit out of sorts again. My BFF Nausea has decided to return with a vengeance and I've been tossing my cookies for the past several mornings.
Went to see a couple of doctors yesterday and they both believe that my body is still adjusting to the hysterectomy/oophorectomy and that I just need more time and that perhaps my hormone therapy needs to be readjusted. Umm, it's been 2.5 years since the surgery...when will it get better? I was always considered a "type A woman" but now I feel like a type A personality trapped inside a type B woman's body. Very frustrating. I want to do things but my body is just refusing to cooperate these days. The nausea is debilitating, I just want to sleep all day.
The good doctors even gave me the nausea med for chemo patients - doesn't work. I suck on ginger lozenges, drink ginger tea, peppermint tea, chamomile tea, and eat bananas. All of these are supposed to help with the nausea - ya, not so much.
I want to know how long this is going to last and no one can give me any answers. How do other women do it? And why don't they talk about it? Are other previvors plagued with other issues which mask the effects of their oophorectomy? I don't know but this is dreadful. I was feeling better there for awhile - but it seems to run in cycles. I know I had to have the surgery because the screening for ovarian cancer is very poor, but I did not sign up for this and nobody bothered to forewarn me of what may become of me for having a hysterectomy at 40. I'm sick but then again I'm not. Highly perplexing if you ask me.
I speak to a lot of women who have been diagnosed with Lynch and many of them have recently had hyster/oophs. I try hard to be a beacon of hope and light for them, but I also feel a responsibility to be honest and candid about my experience. Everyone's experience is unique, for sure. Honestly, I'm becoming jaded, I can't sugarcoat things and pretend this Lynch diagnosis is the best thing that's ever happened to me, mostly because of the aftermath of the surgery. The diagnosis is hard to reconcile, especially if you have children who you may have to fret about. The other challenging issue is finding the right balance of those beautiful little biochemicals called hormones. So, my charming, adorable doctor is giving me some new estrogen and testosterone creams and has increased my progesterone. I will have to wait for several days to see the results but I have to remain optimistic. In the meantime, I will be praying to the Hormone God that this works. :P
Ovarian cancer. Two of the scariest words in any language for a woman with Lynch syndrome. It is what prompts many of us with Lynch syndrome to undergo a radical hysterectomy at an early age and force us into the abyss of forced menopausal hell. There are days when I emotionally flog myself for undergoing the hysterectomy because of the drastic negative changes it has had on my life; sometimes I need to recalibrate my thoughts and read about actual life histories where people have been tragically affected by things such as ovarian cancer. Reading other people's cancer stories gives me tremendous perspective and insight and makes me ponder about what I would do in their given situation. Mostly it brings things to my attention that I would not have thought of otherwise.
Susan Gubar, Phd, writes about her hellacious ordeal with ovarian cancer in the book: Memoir of a Debulked Woman; Enduring Ovarian Cancer
. It's a well-writing, courageous account of how she endured ovarian cancer and the various surgeries and treatments for it. She is "debulked" because the surgery she underwent for advanced ovarian cancer damaged other organs in the process. She discusses the chemotherapy involved, the multiple surgeries involved, the various difficulties she had to deal with as a result of the chemo and surgeries and the emotional and physical toll that having this horrific disease takes on her.
"Ovarian cancer is the leading cause of American women's death from gynecological cancers, ovarian cancer exhibits warning signs that are easily missed or dismissed...Doctors and nurse practitioners often attribute the muted or misunderstood signs of ovarian cancer to menopause, endometriosis, yeast infections, indigestion, aging with its aches and pains, gallbladder attacks, benign cysts, diverticulitis, irritable bowel syndrome, urinary tract infection, stress, depression, pulled muscles, etc. Misdiagnosis can also result from the unreliability of the CA-125 blood test (standing for cancer antigen 125) often used to measure levels of ovarian cancer. Many women exhibit high levels of this protein without having cancer (a level 35 is considered normal), and quite a few women with early stage ovarian cancer do not have elevated levels...no reliable screening for ovarian cancer exists
Furthermore,"prophylactic hysterectomy is not an absolute safeguard against ovarian cancer, because ovarian type cancers may manifest themselves in the peritoneal lining
; early surgical menopause has its litany of issues: risk of heart disease, high blood pressure, osteoporosis, cognitive problems, depression, inelastic skin, and weight gain. The most troubling aspect of ovarian cancer is that most people diagnosed with ovarian cancer, whether or not they are using advanced medical methods to contend with their disease, die of ovarian cancer, the process can be isolating as well as devastating
The most compelling part of the book for me was when Gubar writes, "Death is not experienced as bad by me simply because in death 'I' do not exist and therefore 'I' cannot experience death or anything else. True, the death decreed by ovarian cancer deprives me of a longer life, but a longer life under some circumstances may not be better than a shorter life."
Needless to say, Gubar raises all kinds of interesting philosophical issues and what it means to truly live
when one has cancer. "Despite their [doctors] best efforts, however, each procedure undertaken against the havoc wreaked by cancer -- debulking, draining, bagging, poisoning -- has produced its own woeful consequences on the psyche and the body. Medical interventions designed to control cancer often backfire, I have learned, and hurt some other aspect of the treatment...Patients are consistently offered decisions or choices with implications they cannot fully comprehend and consequences they rationally dread."
The bottom line: "there has been little substantial progress in medical approaches to ovarian cancer."
I read a lot of books but this one is exceptionally important to those of us with Lynch syndrome. I highly recommend you read it - it was so fascinating and absorbing that I managed to read it in one night. It helped me understand ovarian cancer and many of the issues which may present themselves as a result of having it, the surgeries, the chemotherapy, and the plethora of other challenges which may follow suit. It gave me clarity and made me think about what I would do in this situation. I was surprised to read about her experience and to discover how ovarian cancer affected her in so many unimaginable ways. I greatly appreciate her honesty and courage to write about this. I wish doctors and genetic counselors would read it, too, because often times, they forget about the humanity behind the disease and the treatments.
It's easy to make recommendations when you're not the one having to experience the negative consequences of them. There is so much more to life than just surviving and she illustrates this point perfectly and articulately.
Susan Gunbar is pictured below. You may find her blog at: http://well.blogs.nytimes.com/author/susan-gubar/
I came across this article in the NYT and wanted to share it with you. It's about a woman who had a tumor removed with part of her pituitary gland and her struggles with hormone replacement therapy. I have italicized the similarities between us and italicized/underlined the important points.
I had a conversation with a 43 year old woman a few days ago who had her hysterectomy last week and her doctor failed to provide her with HRT and told her to call him to let him know how the "hot flashes are going." I have heard similar stories, many, many times and it simply frustrates me because it's just a testament to the fact that some doctors DO NOT understand the interconnection between the body, its parts and processes. Yes, some doctors may argue that HRT may hold implications for some cancers but this is usually the case for women who have already gone through menopause, not for those of us forced into it through prophylactic surgery. Hormones are highly important for our well-being and life without them due to forced menopause can be absolute hell emotionally and physically.
Hope you all had a great Thanksgiving and that you have much to be grateful for...I sure do.
New York Times
Bringing Back My Real Self With Hormones
By MARY LOU JEPSEN
Published: November 23, 2013
In my early 30s, for a few months, I altered my body chemistry and hormones so that I was closer to a man in his early 20s. I was blown away by how dramatically my thoughts changed. I was angry almost all the time, thought about sex constantly, and assumed I was the smartest person in the entire world. Over the years I had met guys rather like this.
I was not experimenting with hormone levels out of idle curiosity or in some kind of quirky science experiment. I was on hormone treatments because I’d had a tumor removed along with part of my pituitary gland, which makes key hormones the body needs to function.
This long journey may have started as early as 1978, when I was 13. I spent a summer in intensive care with an unknown disease. After that summer, I never thought I would live a long life. So I wanted to live, to do interesting, fascinating work in the limited time I thought I had left. I took on the math-intensive art form of holography, and in my early 20s traveled the world, living on university fellowships to pursue this esoteric craft. I didn’t date much, really — perhaps because I didn’t have many hormones, though I didn’t know that at the time. I worked as an artist, played in a band, met Andy Warhol, Christo, Lou Reed and David Byrne. I had fun. But the gravity of my illness grew in the 1990s.
The growth that shut down my pituitary gland’s ability to produce hormones did so insidiously over many years. By my early 20s it was, I suspect in retrospect, causing misdiagnosis of symptoms that were most likely caused by lack of hormones like cortisol. No diagnosis was found, despite the efforts of many doctors. I was a doctoral student in electrical engineering at an Ivy League school, but was growing progressively worse. I routinely slept about 20 hours a day, lived with a constant blistering headache and frequent vomiting
, and was periodically wheelchair-bound. Large sections of my skin cycled through a rainbow of colors and sores, half of my face wouldn’t move as if Novocain had been applied. I drooled. Worse: I felt stupid
. I couldn’t subtract anymore. I couldn’t make a to-do list, let alone accomplish items on one. I recognized that I wasn’t capable of continuing in graduate school. Utterly defeated, I filled out the paperwork to drop out.
Then, in the summer of 1995, my brain tumor was discovered. Diagnosis can often take this long. This might be because of the insidious and chameleonlike nature of this disease. The tumor was not malignant, but it had disrupted my pituitary function. The symptoms are general, confusing, escalate slowly over years and can be easily misinterpreted.
It was great to have a chance at a meaningful life again, but I found it embarrassing to learn firsthand how completely controlled we are by our hormones. I thought it was about the gray matter, but this experience forced me to look differently at how we think. I have had to shape my personality by my hormone doses.
The journey of tuning “me” began by fixing basic things. Everyone focuses on testosterone and estrogen, but these are just a small part of the mix of what is needed to stay alive and healthy. For example, consider the hormone cortisol; it’s a crucial component of the immune system, and you can’t live without it. I don’t make any cortisol. If I don’t take it, I could die.
I had to make a plan to replace the chemicals that the missing parts of my brain used to make. There wasn’t a clear and detailed road map for this. Blood levels of these chemicals vary for people of the same age and sex, and even more between men and women, young and old. More of us may be affected by variant hormone levels than we realize. One systematic review estimated the prevalence of pituitary tumors at nearly 17 percent of the general population.
So, what was the dose for each chemical that made “me” me? And how was I to find out without trying a range?I started trying different dosages and was amazed by how my thinking, my sense of who I was and my behavior toward others changed with tiny shifts in dosages. I didn’t know who I was anymore, nor who I wanted to be, but I was healthier.
I finished my Ph.D. within months of my surgery to remove the tumor and co-founded my first technology start-up. Yet it took me years to craft a better “me” after my personality was essentially killed by the effects of the tumor and surgery.
This sort of exploration and self-tuning is not easy. Finding a doctor who could help me replace all the chemicals that the missing parts of my brain had made in age- and sex-appropriate combinations was nearly impossible.
Doctors told me it would be too expensive, that I was fine and didn’t need to do more.
They were wrong. I gained nearly 60 pounds within a year of surgery on the dosages I was prescribed. I fell down two stairs during this time and broke both ankles, since my bones had been weakened by the absence of hormones. For the next six months I lived in a wheelchair at my start-up because I couldn’t get back up the stairs to my apartment in San Francisco or drive without use of my legs in the stick-shift car I owned. We didn’t have a shower there, so I had to take sponge baths and sleep on a futon in my office. I was not “fine.”
This all changed when I finally found a doctor to work with me to reconstruct my personality and my health by tuning combinations and doses of these powerful chemicals; this physician’s support and patience over 18 months helped bring “me” back to life. I lost about 80 pounds in a year without a program of diet or exercise. I stopped suffering from terrible jet lag during my frequent travels. I felt clever again, and my career began to take off. I started to date.In my experience it can be difficult to find a doctor to help a patient do this. I believe it is only partly because of the shortage of endocrinologists, doctors who specialize in the hormonal systems. Some doctors seemed not to believe that every hormone mattered. How many other patients like me have failed to find their ideal balance of medications?
There is evidence that careful tuning of these hormones can lead to dramatic personal and professional outcomes. Doctors and patients should consider replacement of every known hormone that is missing. New neurochemicals are identified by researchers every few years and should be studied as possible additions to the mix.And access to these medications should not be hindered.
As it stands today, some of the hormones I need daily to stay alive and to thrive can be, and frequently have been, blocked at the whim or neglect of a doctor’s office, insurance company or pharmacy. And still, 18 years after my surgery and despite great advances in endocrinal science, I need to fight to get them.
Disputes between organizations on whether prescriptions, test results or proper forms were transmitted or not. Communication breakdowns. A Kafka-esque nightmare of constantly needing another approval. It can take weeks to be notified of a rejection.
I spend an average of 10 hours a month nudging, charming, name-dropping, fulfilling requirements and at times getting angry to try to persuade a chain of people to let me get the neurochemicals that I need at whatever the price. I usually spend between $100 and $1,000 per month on these chemicals, depending on what health insurance I have had at the time. On occasion it has run $5,000 per month. Sometimes health insurance has covered all the cost except a standard co-pay, sometimes very little.
Patients need more control in this process. Any number of people in the chain can keep us from our drugs — the effect is multiplied for me by the dozen meds that I take. The more expensive ones always seem harder to get and involve more steps. Thus more things that can and do go wrong in the perfect chain of dozens of people who need to move my case along for me to get my meds.
A common response is utter disbelief. Most people go the pharmacy and get their prescriptions filled, and the worst indignity is a long line. Their personality won’t go wild. A part of my body has been removed, it will never come back, and I need to take a dozen meds every day or I could get sick or die. Among the drugs I need to take are human growth hormone, hydrocortisone and thyroid hormones. How can we resolve these challenges?
Solutions should focus on allowing patients with a proper diagnosis continuing access to the medications they need. The health care system should make it easier for patients who need vital hormones or medications to actually get them every time. And new technologies should be used to make it easier to get our prescriptions filled and to understand why they are held up. In the past, pharmacies and insurance representatives have denied me access to such information in a timely manner, such as email or even over the phone. Access to online systems would allow patients to track their prescription from the doctor’s office to the pharmacy, and to get information about insurance coverage.
Without the ability to fine-tune my hormones and neurochemicals I believe I would have been trapped as a near-imbecile, wheelchair-bound, in my mother’s basement for an abbreviated and miserable adult life.
But with this ability I have reached the top of my field. Still, the health care system hinders my access to the chemicals I need to live. I am far from alone in this situation. It’s time we changed the system.
Whether you're a patient, caregiver, relative, or friend of someone who is dealing with colon cancer, Chris4life.org has some remarkable resources for you.
Please visit: http://www.chris4life.org
for more info.
I woke on Saturday feeling like a brand new person. The constant nausea, exhaustion, and depression just floated away like a helium-filled balloon. The thyroid meds have kicked in and I finally feel like a million bucks. I've been able to start running again and haven't felt the need to take my daily nap. I'm losing weight and basically feel like my old self again - I am so relieved. So many women out there are suffering needlessly from hypothyroidism and don't even know it.
Hypothyroidism can be pretty common in woman, especially after menopause, or forced menopause. Please see your doctor if you're experiencing any of the following symptoms; they can give you meds to help you feel better.
Hypothyroid symptoms include
- Dry skin
- Unexplained weight gain
- Puffy face
- Muscle weakness
- Elevated blood cholesterol level
- Muscle aches, tenderness and stiffness
- Pain, stiffness or swelling in your joints
- Heavier than normal or irregular menstrual periods
- Thinning hair
- Slowed heart rate
- Impaired memory
I have a pretty low-key week planned. I will be spending time with my loved ones and taking it easy. I have a great deal to be thankful for; my health, my family, my friends, my dog, and all of you who read this blog and continue to inspire me to write, and keep up my advocacy. I hope you, too, have much to be thankful for; please be sure to express your gratitude to those around you and keep in mind that there are many wonderful beings in unfortunate circumstances who could use your help this season.
So much much misery in the world, what can you do to help ameliorate it?
With love and much, much gratitude. Georgiaihavelynchsyndrome.com
Having Lynch syndrome is emotionally challenging and taxing. Like most challenges in life, it has a tendency to frequently test your emotional and mental strength. I believe our mental strength, or minds, are our most powerful weapons against fighting Lynch syndrome. Therefore, I spend a great deal of time cultivating that strength through meditation, working out, and spending time alone doing things I enjoy.
I came across this article in my reading and wanted to share it with all of you.
Mentally Strong People; 13 Things They Avoid
For all the time executives spend concerned about physical strength and health, when it comes down to it, mental strength can mean even more. Particularly for entrepreneurs, numerous articles talk about critical characteristics of mental strength—tenacity, “grit”, optimism, and an unfailing ability as Forbes contributor David Williams says, to “fail up.”
However, we can also define mental strength by identifying the things mentally strong individuals don’t do. Over the weekend, I was impressed by this list compiled by Amy Morin, a psychotherapist and licensed clinical social worker, that she shared in LifeHack. It impressed me enough I’d also like to share her list here along with my thoughts on how each of these items is particularly applicable to entrepreneurs.
1. Waste Time Feeling Sorry for Themselves. You don’t see mentally strong people feeling sorry for their circumstances or dwelling on the way they’ve been mistreated. They have learned to take responsibility for their actions and outcomes, and they have an inherent understanding of the fact that frequently life is not fair. They are able to emerge from trying circumstances with self-awareness and gratitude for the lessons learned. When a situation turns out badly, they respond with phrases such as “Oh, well.” Or perhaps simply, “Next!”
2. Give Away Their Power. Mentally strong people avoid giving others the power to make them feel inferior or bad. They understand they are in control of their actions and emotions. They know their strength is in their ability to manage the way they respond.
3. Shy Away from Change. Mentally strong people embrace change and they welcome challenge. Their biggest “fear”, if they have one, is not of the unknown, but of becoming complacent and stagnant. An environment of change and even uncertainty can energize a mentally strong person and bring out their best.
4. Waste Energy on Things They Can’t Control. Mentally strong people don’t complain (much) about bad traffic, lost luggage, or especially about other people, as they recognize that all of these factors are generally beyond their control. In a bad situation, they recognize that the one thing they can always control is their own response and attitude, and they use these attributes well.
5. Worry About Pleasing Others. Know any people pleasers? Or, conversely, people who go out of their way to dis-please others as a way of reinforcing an image of strength? Neither position is a good one. A mentally strong person strives to be kind and fair and to please others where appropriate, but is unafraid to speak up. They are able to withstand the possibility that someone will get upset and will navigate the situation, wherever possible, with grace.
6. Fear Taking Calculated Risks. A mentally strong person is willing to take calculated risks. This is a different thing entirely than jumping headlong into foolish risks. But with mental strength, an individual can weigh the risks and benefits thoroughly, and will fully assess the potential downsides and even the worst-case scenarios before they take action.
7. Dwell on the Past. There is strength in acknowledging the past and especially in acknowledging the things learned from past experiences—but a mentally strong person is able to avoid miring their mental energy in past disappointments or in fantasies of the “glory days” gone by. They invest the majority of their energy in creating an optimal present and future.
8. Make the Same Mistakes Over and Over. We all know the definition of insanity, right? It’s when we take the same actions again and again while hoping for a different and better outcome than we’ve gotten before. A mentally strong person accepts full responsibility for past behavior and is willing to learn from mistakes. Research shows that the ability to be self-reflective in an accurate and productive way is one of the greatest strengths of spectacularly successful executives and entrepreneurs.
9. Resent Other People’s Success. It takes strength of character to feel genuine joy and excitement for other people’s success. Mentally strong people have this ability. They don’t become jealous or resentful when others succeed (although they may take close notes on what the individual did well). They are willing to work hard for their own chances at success, without relying on shortcuts.
10. Give Up After Failure. Every failure is a chance to improve. Even the greatest entrepreneurs are willing to admit that their early efforts invariably brought many failures. Mentally strong people are willing to fail again and again, if necessary, as long as the learning experience from every “failure” can bring them closer to their ultimate goals.
11.Fear Alone Time. Mentally strong people enjoy and even treasure the time they spend alone. They use their downtime to reflect, to plan, and to be productive. Most importantly, they don’t depend on others to shore up their happiness and moods. They can be happy with others, and they can also be happy alone.
12. Feel the World Owes Them Anything. Particularly in the current economy, executives and employees at every level are gaining the realization that the world does not owe them a salary, a benefits package and a comfortable life, regardless of their preparation and schooling. Mentally strong people enter the world prepared to work and succeed on their merits, at every stage of the game.
13. Expect Immediate Results. Whether it’s a workout plan, a nutritional regimen, or starting a business, mentally strong people are “in it for the long haul”. They know better than to expect immediate results. They apply their energy and time in measured doses and they celebrate each milestone and increment of success on the way. They have “staying power.” And they understand that genuine changes take time. Do you have mental strength? Are there elements on this list you need more of? With thanks to Amy Morin, I would like to reinforce my own abilities further in each of these areas today. How about you?
Source – www.distractify.com
More and more people are reaching out to me, mostly women, who want more information on prophylactic hysterectomy and others who want to know what to expect with the removal of their colon. I only speak from experience and therefore only talk about my hysterectomy and oophorectomy.
Every person's situation is unique, and the stages of cancer vary - so instead I just try to listen and be as empathetic as possible. There is no "one size fits all" approach to medicine when it comes these issues. I am not a medical doctor but if I were you and had cancer and Lynch, I would get multiple opinions before removing my colon and see if more frequent screenings are an option for you instead of having your entire colon removed - of course, this is dependent upon your stage of cancer, and various other factors.
Some doctors and genetic counselors are highly focused on the medical aspects of their patients lives and tend to ignore to discuss the daily implications of these recommended surgical measures. Surgery may save your life but what are the implications for the quality of your life after that? What is the average length of time to recover without complications? Tell your doctors' about your concerns; your financial situation, whether you have family to help care for you, what other issues may arise from having your colon removed (like infections, blockages, etc.), discuss the dietary changes you should expect from having your colon removed, what the implications are for your sex life, etc. Ask lots and lots of questions and if they cannot answer them, they should help you find people who will.
Also, where you have your surgery is of the utmost importance and may have huge implications for how well you recover. If you can afford it, I recommend places like MD Anderson or Mayo Clinic; find doctors who know their shit.
I have heard and read about other people's experience with having their colon's removed; for those of you seeking info regarding your colon surgery, you may want to consider joining Chris4Life's group called "Colontown" on Facebook. I've said it in the past, and will say it again, it's a stellar resource for those of you seeking answers to your medical questions. I believe you have to send in a "request" to join, tell them I sent you. Chris4life is a fantastic organization and can offer you various types of support.
I wish all the best and please, please let me know if there's anything more I can do to help. At the very least, I'm always willing to listen to you.