I wrote this blog as a personal response to the research I conducted while writing our "Patient's Guide to Lynch Syndrome". The views presented below are my own and do not reflect those of our Board of Directors. I do not intend this blog to take the place of, or to present, a medical recommendation. I based the 'dream sequence' on how my response would be if I had the MSH6 form of Lynch syndrome. The cancer risks I use in this blog are drawn from the American College of Obstetricians and Gynecologist's 2014 Practice Bulletin for Lynch syndrome.
I didn’t sleep well last night. I had this terrible sequence of dreams. It started out in a doctor’s office. The doctor was telling me I had Lynch Syndrome and that I was at high risk of cancer. She said I could develop cancer of the prostate and testicles and that I should have them both removed once I’m done creating children. She assured me it was a routine procedure and that they could give me synthetic testosterone to counter any of the effects of not having testicles.
I asked her what the risk of prostate and testicular cancer was and if there was any way to reduce it. She said it was a significant risk of cancer and that I could develop cancer and not even know it. She said there was no way to screen for it and removing both the prostate and testicles was absolutely the only way to prevent cancer. I was assured that everything would be okay and that there were treatments to counter any of effects of the surgery.
In my next dream, my testicles and prostate had been removed. I was surprised to find out that I no longer interested in sex. I was in a deep fog. Depressed. I felt…different in my head. I didn’t feel like a man anymore. But not a like a woman either. I felt like a car in neutral. Everything was different. Using the bathroom was different. The way I looked at my wife was different. I was tired. So tired that I didn’t feel like I could go to work or even help clean the house. Everything was dark. I was 40 years old. With forty more years to go…
In my next dream, I was crying. I had been on the internet reading things I was wishing I never knew. I had opened Pandora’s Box. I read that my specific type of Lynch Syndrome only gave me a 26% chance of prostate cancer by the age of 70 years. I realized that I would have had a 74% chance of not developing prostate cancer. I found out that they could have done annual biopsies that, while painful, may have caught the cancer when it was early and treatable.
I found out that I could have taken an oral contraceptive for men called Protosterone that may have reduced my risk by half… I read that Protosterone was commonly used to cure early stage prostate cancer and heals precancerous tissues in the prostate. I also found out that I only had an 11% risk of testicular cancer and that Protosterone may have reduced that risk by half, too.
I was crying. I felt like it was all for nothing. Like I my prostate and testicles were removed unnecessarily. I read that 600,000 men in the US underwent similar procedures and that nearly 90% of these men did not need to have their prostates and testicles removed.
If this dream sounds like a nightmare, it is. But it’s not a dream. It’s a reality for women with Lynch syndrome. While men with Lynch syndrome do not have an increase the risk of testicular cancer, and the increased risk of prostate cancer is very low, women are frequently being recommended to undergo bilateral saphingo-oophrectomies and hysterectomies. These surgeries do reduce the risk of cancer in women with Lynch Syndrome. For some women, these surgeries will prevent cancers and save their lives. But for others, their risk is very low and surgery may not be necessary. Unfortunately, many doctors are not well versed with Lynch syndrome and are recommending these surgeries to every woman, regardless of personal risk, often before menopause.
However, removing the female sex organs has far reaching implications beyond procreation. The hormones produced in the ovaries are integral for healthy homeostasis in a woman’s body. A total hysterectomy, which includes removing the fallopian tubes and ovaries, greatly increases risk of health problems, such as Parkinson’s disease, heart disease, and osteoporosis.
I recently became aware of all of this when I was conducting research to create “A Patient’s Guide to Lynch Syndrome.” My wife Shawnie brought some of the statistics to my attention and, from there, I dove head first down a rabbit hole. While I was reading about possible ovary saving surgeries, about risk reducing chemotherapy, and about how cancer risks are often not individualized based on specific Lynch genes, I could not help but think of what it would be like for Shawnie to go through this.
IF the risks for endometrial and ovarian cancer in women were, instead, risks for prostate and testicular cancer in men, the recommendations would likely be different. I firmly believe that far less men would be suffering these fates. I reside in a country where women are continually having to fight for the right to control their bodies,debates continue on what procedures should be covered for women, but the market is flooded with erectile dysfunction remedies that are covered by insurance. I am certain the medical community would find a way to save men from this horrific fate.
If it can be done for men, why not for women. Not advising women on their specific cancer risk, based upon their family history, age, and gene mutation is disrespectful of women. Not educating women about the potential consequences resulting from a total hysterectomy is abhorrent.
I am not anti-surgery. I am very happy that my colon was removed when I was 15. It’s the only reason I will be able to live beyond 40. But the colon is referred to as the ‘organ of social convenience’ for a reason - The impact on life is rather small in the grand scheme of things.
As I get older, my risks of small intestine cancer increases. My father, uncle, and cousin all had Whipple procedures, which involves removing the gall bladder and parts of the stomach, pancreas, and small intestines. It single-handedly torpedoed my father’s quality of life.
One day, I may have to face the decision of whether or not I will undergo this surgery but, in truth, I’ve already made the decision. When it comes to life, I value quality over quantity. It was a hard decision to make, and one that I recognize has implications for Shawnie, as well. But it’s where my values lie, and we’re both comfortable with that.
I don’t know what I would do if I was a woman with Lynch syndrome and a family to consider. But I do know one thing: It’s impossible to make an informed decision if you do not have all of the facts.
If you’re considering a gynecological surgery, please include a gynecological oncologists, who really knows Lynch syndrome, as part of your comprehensive care team. Make sure they’re taking into account your family history and, if possible, your gene-specific cancer risks. Discuss your surgical and chemoprevention options. And, as always, seek out a genetic counselor who can explain your cancer risks.
Your decision is your decision.Educate yourself. Be your own advocate. My hope is that you are able to know all the facts to support your choice.
p.s. My goal was to release “A Patient’s Guide to Lynch Syndrome” today, March 22nd, because it’s Lynch Syndrome Awareness Day. However, the results of my research caused a much more extensive discussion with our medical advisors. We anticipate the final guide, including extensive details about gynecological cancer risks, will be available in just a few weeks. Be sure to join our mail list to be notified.
This blog has been edited from its original form to reflect the comments provided since its publication. The edits were done so to stregthen the scientific aspects and allow attention to be focused on its underlying goal of drawing attention to the significance of the surgical recommendations women with Lynch syndrome are faced with, to question how these recommendations would differ if the equivalent cancers were for men, and to generate thoughtful, however potential provocative, conversation.
Thank you for reading and I look forward to your thoughts comments.