March is National Colorectal Cancer Awareness Month. Colon cancer (CRC) is the second deadliest cancer in the U.S. March 22 is Lynch Syndrome Awareness Day. (We’ll get to what that is in a bit.)
Wait, this is a breast cancer blog, you might be thinking. True. However, remember the walls I’ve previously written about? Also, you might’ve read or heard stories in the news recently about the disturbing rise of CRC diagnoses in younger people. Raising awareness about CRC matters. A lot.
As someone with an inherited BRCA 2 gene mutation, I have great empathy for others dealing with hereditary cancer and cancer risk — no matter what the specific gene mutation might be and no matter what type of cancer for which that gene elevates risk.
I also have tremendous respect for previvors who are faced with making difficult decisions to try to avoid a cancer diagnosis. Theirs is not an easy path either, and too often their experiences are downplayed.
For these and other reasons, I’m pleased to share a piece for Lynch Syndrome Awareness Day by my friend and fellow advocate, Georgia Hurst, about what it means to be a person dealing with Lynch syndrome.
Thank you, Georgia, for sharing 10 things you want others to know about previvors.
Be sure to ask Georgia a question or leave her a comment at the end of her piece.
Lynch Syndrome Awareness Day — 10 things I want you to know about previvors
by Georgia Hurst
I have been a fierce advocate for those with Lynch syndrome for over a decade — my efforts include raising awareness and educating people about Lynch syndrome, specifically on Twitter and as a Contributor for curetoday.com.
Lynch syndrome is the most common hereditary cancer syndrome
What is Lynch syndrome?
Lynch syndrome is a hereditary condition that increases the risk of developing certain types of cancer, including colorectal, endometrial, ovarian, and many others. For individuals with a genetic predisposition to cancer but who have not yet been diagnosed, a term called “previvors” is used for us.
The emotional toll of Lynch syndrome on previvors can be significant and challenging, as we face constant fear of developing cancer, may struggle with decision-making around prevention and screening, and may feel isolated from others who do not fully understand our experience.
I hope me sharing can help others better understand what it means to be a previvor with Lynch syndrome.
10 things I want you to know about previvors
1. The fear and uncertainty of developing cancer and possibly passing this deleterious mutation to my son are among the most significant emotional challenges I have had to reconcile.
We previvors are acutely aware of our increased risk of developing certain types of cancer. We frequently worry about when and if cancer will develop and its implications for our families. This fear can be incredibly intense if we have already lost family members to Lynch-associated cancers. We may experience various emotions, from anxiety to depression, and may have difficulty coping with these emotions.
I initially managed feelings by writing about my experience with Lynch syndrome, seeking therapy, and connecting with others with hereditary cancer syndromes.
2. Emotions may run rampant when it is time for annual screenings — we previvors refer to this as scanxiety.
Scanxiety is a term used to describe the anxiety some people experience before, during, and after medical scans or tests. This anxiety is a fear of the negative test results, the discomfort associated with the test, or the uncertainty of what the test will reveal.
For people with Lynch syndrome, or other inherited cancer syndromes such as BRCA, regular scans and tests are often a necessary part of their medical care, which can lead to ongoing scanxiety.
We may also experience stress and anxiety related to cancer prevention and screening decisions. We may struggle with deciding when to start screening, which screening tests to undergo, and whether to take preventative measures such as prophylactic surgery. These decisions can be emotionally challenging and can have a significant impact on quality of life.
3. Previvors may worry about the implications of these decisions on their relationships, career, and plans, which can contribute to the overall emotional burden they experience.
Unfortunately, many people undergo genetic testing without seeing a certified genetic counselor. A certified genetic counselor could address many of these concerns and issues and help patients make informed decisions to maintain their health and minimize their cancer risks.
4. The emotional toll of Lynch syndrome can also affect personal relationships and family dynamics — it certainly has for mine.
It can be challenging to communicate with family members about their cancer risk and the need for screening, especially if some are unwilling to take preventative measures. A family’s culture, religion, possible belief in superstitions, and general family dynamic affect how the family processes such a diagnosis.
5. Previvors may feel isolated and unsupported within their own families
I even have difficulty discussing it with my brother, who has already had cancer twice. Those not afflicted with an Ls mutation within the family may not fully understand their cancer risk and the emotional toll it takes, so I find it best not to discuss it with them.
It has been a very isolating issue for me, and it is most helpful to discuss these problems with my therapist and connect with others with Lynch syndrome.
6. Some previvors may experience survivor guilt if other family members have cancer.
Survivor guilt is a feeling that some people experience after surviving a traumatic or life-threatening event, such as cancer. They may have family members who have developed cancer and may feel guilty for not developing or surviving while their family members did not.
For people with Lynch syndrome or other inherited cancer syndromes, survivor guilt can be particularly challenging. I feel survivor guilt over my brother Jimmy’s death and consider every day I live past his 36 short years a bonus.
Survivor guilt can be difficult and complex to deal with; therefore, it is helpful for people experiencing these feelings to seek support from support groups or mental health professionals.
7. Most medical professionals recommend a hysterectomy and bilateral salpingo-oophorectomy for most women with Lynch once child-bearing has been completed.
This surgery will remove the uterus, cervix, ovaries, and fallopian tubes. These organs are not solely for reproductive purposes; they work together for a reason — to create the hormones crucial to a woman’s overall well-being.
Therefore, surgical menopause, especially before achieving natural menopause, can be a difficult adjustment for a woman as the loss of hormones has implications for a woman and may hold a trove of consequences for her health in the long term.
Through my advocacy work, I have spoken with many women who are torn and devasted by this recommendation — especially if there is a strong family medical history of very early ovarian or endometrial cancer. Before having children, many women may undergo these surgeries to prevent cancer.
8. Losing their fertility can be emotionally devasting for them, especially if they want children.
Alternatively, some women who want to have children may opt for preimplantation genetic diagnosis (PGD) — a procedure used during in vitro fertilization (IVF) to screen embryos for genetic disorders before being implanted in the uterus.
This costly technique helps prevent the transmission of Lynch syndrome from a parent to their child, but unfortunately, health insurance does not usually cover this procedure. Embryos found free of the genetic mutation associated with Lynch syndrome are selected for implantation.
Some may argue that there are ethical issues because this is deemed a form of selective reproduction in which only embryos not affected by the Lynch syndrome mutation are chosen for implantation.
9. The emotional toll and challenges Lynch syndrome previvors face can be significant.
Many need support from healthcare professionals, patient advocacy organizations, and others with similar experiences. Support and counseling can be an essential part of helping previvors cope with the emotional challenges of Lynch syndrome.
By connecting with others who understand their experiences, previvors with Lynch syndrome can find a sense of community and build a support network to help them navigate the emotional challenges of living with the condition. Professional counseling and mental health services can also be an essential resource for previvors with Lynch syndrome. They can help individuals cope with anxiety, depression, and other mental health challenges.
In addition to seeking support from healthcare professionals and advocacy organizations, previvors with Lynch syndrome can take steps to manage their emotional well-being.
Aside from overall wellness, a constellation of factors can benefit those with Lynch. We can engage in self-care activities such as exercise, mindfulness, and relaxation techniques, which can help reduce stress and anxiety.
We can also focus on maintaining a healthy lifestyle by exercising, eating a balanced diet, getting enough sleep, and avoiding tobacco and excessive alcohol use.
Along with meticulous annual screenings, and aspirin therapy, a current Lynch vaccine is in clinical trials. If and when one develops cancer, immunotherapy can put Lynch syndrome cancers, including advanced-stage cancers, into remission.
10. Finally, it is crucial for previvors with Lynch syndrome to know we are not alone.
Many people face similar challenges and struggles, and resources are available to help us cope. By seeking support, staying abreast of all the Lynch syndrome research, and managing our emotional well-being, previvors with Lynch syndrome can live fulfilling and meaningful lives despite our emotional and physical challenges.
As a previvor who stresses the importance of early detection and proactive management and encourages others to undergo certified genetic counseling and testing when warranted, I encourage others with Lynch syndrome to be vigilant and take control of their health by speaking with a certified genetic counselor to understand their mutation.
Staying informed about their specific mutation by seeking out physicians well-versed in Lynch syndrome and its screening protocols is vital. I also encouraging those with Lynch syndrome to discuss adopting an aspirin regimen with their doctors.
In Memory of Dr. Henry Lynch and his laudable work in cancer genetics.
Thank you for sharing this post!
BIO: Georgia Hurst is a fierce patient advocate for those with Lynch syndrome and other hereditary cancer syndromes. Her advocacy work allows her to write for medical journals, various websites, books and genetic testing companies, and collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter.
Do you know anyone with Lynch syndrome?
Have you ever met with a certified genetic counselor?
Do you have a question or comment for Georgia?
Helen
Wednesday 22nd of March 2023
I had a stage III breast cancer diagnosis in 2012. I do not have any genetic mutations. However two years after my diagnosis, my 25yo nephew Kyle was diagnosed with bowel cancer, and then, Lynch Syndrome. This started a tragic journey for my family that has no conclusion at this point. It was his mother Maria, my sister, who was the carrier of Lynch Syndrome. All 4 of her sons have the gene. My father had passed away in 1977, so Mum was tested, negative. So it seems that Dad's stomach cancer was caused by Lynch. Us siblings got tested. Well, most. Me, negative, my BC was just bad luck. My other sister, who had survived Uterine cancer some years before, was positive. 2 out of 3 of her daughters tested positive, having prophylactic hysterectomies as they'd had families. One has adult children who have been tested in this genetic lottery. My brothers? Well one, I sent all the information to, but I have no idea if he tested. He is single and childless. The other brother, Mr Tough Guy, took a whole year to go back for his results, which were negative. And despite the fact his daughter is a cancer researcher!
Kyle passed away in 2020, aged 31. I suffer survivor guilt, ironic as I'm still in remission from my own cancer. It wasn't fair. I was 44 when I was diagnosed, at least, I felt, I'd had a life, Kyle hadn't.
My sister, and to some extent, my mother, suffered so much guilt. Maria for passing it on, Mum for marrying a man who had the gene, although it wasn't his fault or hers, she felt so helpless.
Maria passed away in 2021, just over a year after Kyle. She was diagnosed in 2017. We had been estranged for years, despite my diagnosis, long story, very messed up family. She wanted to make her 60th birthday. She did, and passed 12 days later. She died in the room next door to the one her son died in at the hospice. Her widower remarried last year, and he is estranged from his sons and our family now.
After Kyle died, my mother ended up in a mental health facility for six weeks, having electric shock therapy. I thought I was going to lose her too.
My surviving nephews will probably never have children of their own. They saw their brother die, and then their mother. They want to end their branch of this awful genetic booby prize. They test for bowel cancer every year, which is not much fun when you are still in your 20's, as two of them are. The fear is a constant companion.
My late father Milan was Slovak, a WWII refugee who fled in 1950, after the Communists took over Czechoslovakia. He came here to Australia. I visited his sister and my cousin in Czechia last December, first time ever. Because over the years, we'd lost touch, I know very little about his family history. I found out on that trip that his father Josef, died in 1939, from stomach cancer. Dad was 9yo. I was 9yo when Dad died from stomach cancer, a horrible coincidence. So now I know it probably comes down through Dad's paternal line. I have tried to talk to my Czech cousins about Lynch, but they don't speak English and nor me Czech. One cousin talks of her health issues, and my blood runs cold. She lives away from the big cities and it's hard to get through the seriousness of it. Her brother passed some years ago, I can't get a clear answer on why. I feel helpless.
I also have found out over the years that Lynch Syndrome can be prevalent in Slovak and Jewish populations. Turns out, I have some Ashkenazi Jewish ancestry. Lynch I believe, sits on chromosome 7, and that is where I match on Ancestry with Jewish relatives. I must get around to talking to my niece about this interesting fact.
I apologise for this long story. I guess it's all been sitting inside me for so many years now. Everybody hears about BRCA, but very few, and a lot of doctors, have never heard of Lynch, but it probably causes a lot more cancers than people realise, but because it's not just one type, it doesn't stand out. My wish is that no more of my family suffer from this. As each new child turns 18, they will have to make the choice to be tested or not. It is a heavy burden, and not just for those who carry the gene.
Nancy
Thursday 23rd of March 2023
Helen, Oh my gosh, Helen, that is quite a story. I am so sorry you've had so many loved ones die from cancer due to Lynch syndrome. You are so right - it can be devastating for families. You're also correct in that BRCA has received a lot more attention in comparison. I think there is more awareness about the other gene mutations now, at least I hope so. It has to be so hard to know your Czech cousins are not fully understanding the serious implications of all this. It sounds like you're doing what you can there. I appreciate you sharing your story. It is a heavy burden to carry. I hear you on that. My best to you and your family too. Thank you for sharing.