A Summary from Dana Farber’s LYNKED IN Conference: Connecting and Empowering Lynch Syndrome Families 2017

The Dana-Farber’s Center for Cancer Genetics and Prevention in Boston just held their second annual LYNKED IN conference on March 18th. The stated goal of the conference is to provide information to patients, as well as their families and caregivers. This was my first experience attending anything pertaining to the Lynch community. I follow Georgia’s website — ihavelynchsyndrome.org — and social media regularly, so I feel like I have an online presence in the community, but I wanted to take the time to actively engage and perhaps establish a physical presence in the community as well. I attended the conference with my mother, who does not have Lynch but has perhaps worried herself more than my sister and I, who do have it. For those of you who couldn’t make it, I hope to summarize what the conference was all about and emphasize some of the highlights. Much of the information at the conference probably isn’t too new to many of us, but there are some exciting things going on that I feel worth sharing, and given Dana-Farber’s status as a premier cancer treatment and research institute, their speakers were quite knowledgeable and a pleasure to hear speak.

One of the main highlights this year was the announcement of the Dana-Farber Cancer Institute (DFCI) Lynked In Center for Lynch syndrome by Dr. Sapna Syngal, who is the Director of Research at the DFCI Center for Cancer Genetics and Prevention and the GI Cancer Genetics and Prevention program. The goals for the center this year are to launch their website, develop an active social media presence, launch a nation-wide fundraising campaign, employ a nurse navigator for patients with Lynch syndrome, expand research under the purview of the national Cancer Moonshot effort, produce educational materials, and fund fellows to conduct Lynch syndrome research. There wasn’t much practical information about the center yet, but Dr. Syngal discussed the benefits to having all things Lynch-related under one roof— a place that brings together genetic counselors, GEs, Lynch research, and patients. This would also provide patients the ability to actively take part in ongoing research efforts.

Some of these research efforts going on at DFCI were discussed in a talk by Dr. Matt Yurgelun and include a patient registry that has been ongoing since the early 1990s, which has contributed significantly to dozens of studies on Lynch syndrome aided by researchers world-wide. Other research happening at DFCI include investigating new forms of cancer screening for prostate and pancreatic cancer, as well as new forms of cancer prevention in the form chemoprevention, in this case testing how aspirin regiments may affect polyp formation and frequency. While 600 mg of aspirin daily had been shown in the CAPP2 study 1 to be effective at reducing cancer rates in hereditary colorectal cancer patients, DFCI and an ongoing CAPP3 study hope to refine the optimal dose of aspirin to minimize any potential negative effects of high doses.

Another talk which I found particularly informative was by Dr. Marcela G. del Carmen, a gynecologic oncologist and professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School. She discussed the lifetime risks of endometrial and ovarian cancer in individuals with Lynch compared to the general population. For endometrial, the risks are increased significantly, from 27-31% in Lynch cases vs 3% in the general population. This risk is also influenced by the particular mutation an individual has, with a 27-60% risk associated with the MLH1 and MSH2 mutations and 60-71% risk with MSH62. For ovarian cancer, the lifetime risk in Lynch is 3-14% vs 1.5% in the general population3. Dr. del Carmen suggests annual pelvic exams, trans-vaginal ultrasounds, and CA-125 screenings every 6-12 months for women with Lynch, starting between ages 30-35 for ovarian cancer. With regards to prophylactic measures, Dr. del Carmen discussed a CDC study that showed that oral contraceptive pills may reduce the risk of endometrial and ovarian cancer by as much as 50%4. She also recommends a total hysterectomy and oophorectomy as a preventative measure once women with Lynch are finished having children. Of course, she recommends being fully aware of the risks associated with these surgical procedures.

Other speakers included a nutritionist and genetic counselors. The nutritionist discussed the importance of a healthy diet that includes minimally processed foods, mostly plants, and the benefits to a colorful diet in terms of phytochemicals. She also discussed the benefits of the “partner” to a healthy diet— physical activity, which can reduce the risk of colon cancer by up to 30-40%5. Two of the genetic counselors gave a brief background to the genetics of Lynch syndrome, while another discussed reproductive options for those with Lynch. Besides going the natural route, couples with Lynch may consider IVF in conjunction with pre-implantation genetic diagnosis (PGD). As one would imagine, the costs for these procedures are often prohibitively expensive for many if paid for out of pocket, however there are some insurance plans that may help alleviate some of the costs. The keynote speaker was Dr. C. Richard Boland, a professor of medicine at the University of California, San Diego School of Medicine and author of the book “Cancer Family: The Search for the Cause of Hereditary Colorectal Cancer”. Dr. Boland discussed his family’s extensive history with Lynch and colorectal cancer and a brief history on the discovery of the mutations.

Perhaps the most emotional point of the conference was a patient panel in which three individuals with Lynch gave their personal stories. One of the speakers discovered her mother had Lynch when she developed colon cancer. She began to worry that she too might have Lynch, however, she was informed that she wouldn’t be able to get tested for over a month and would then have to wait a couple months for her results. Stressed by watching her mother battle colon cancer and knowing that she too could carry the mutation, her doctor suggested that if she wanted to put her mind at rest that she go ahead and have a colonoscopy. At age 35, she discovered that she had colon cancer and had to have a colectomy. Another speaker was 18 years old, and discovered that she had Lynch at the age of 17. She had her first colonoscopy at 17 and had two polyps removed. After the panel gave their stories, there was hardly a dry eye in the room as these were stories many there could relate to in some way. I was incredibly thankful that they chose to share their experiences with us, as this was what reminded me, and I’m sure others, why we were there.

The final talks took the form of breakout sessions. The sessions included a caregiver and support person session, a cancer survivorship informational session, and a GI screenings session as well as a yoga class and a Lynch syndrome fundraising and advocacy informational session. I chose to go to the “GI Screenings: All Your Questions Answered” breakout session. This session basically detailed both the prep and the procedure for colonoscopies. A handy “grocery list” was provided for all your colonoscopy prep essentials, including Gator-aid, JELLO (not the red kind!!!), bouillon, and MiraLAX. They went over the different variations of prep, making sure to emphasize how crucial a good prep was to an effective colonoscopy. It seems the “split dose” prep is becoming the prep of choice for most GEs, as it clears the colon of any bile produced overnight, allowing a clearer look at the colon. They also brought in the scopes they used, which was interesting to see, as those of us who have been through colonoscopies know, you don’t exactly get the chance to check them out beforehand. My mother attended the “Caregiver and Support Person Session”. She found this session incredibly helpful, not only in an informational capacity, but also as a chance to get to speak and connect with people in similar circumstances as her, where while she may not necessarily have Lynch, watching those around her that do battle with it creates quite the battle for her too.

Overall, I really enjoyed the conference. I’m an academic, and as such I wasn’t expecting to get much new information from the conference that I hadn’t already researched with regards to screening recommendations, the mechanisms behind Lynch or the associated risks. For obvious reasons, much of the gynecological information was new to me (I am a guy just in case you were wondering) and as I have and have had several women in my family affected by Lynch, I was thankful for that. But, perhaps what I most took away from the conference was a sense of community. Of course, the social media and internet community (particularly the one Georgia has built) has been critical in my own personal journey with Lynch, but to be surrounded by so many people with similar experiences and an incredible staff that specializes in Lynch at DFCI, made it feel more real. We all know how hard it can be to mentally, and indeed physically, deal with the impact Lynch has on us and our families, but events such as the LYNKED IN conference make it a little easier to deal with, as you realize you’re not alone and that there are some incredible people doing their best to help us in every way possible.

The Dana-Farber Cancer Institute has the LYNKED IN conference from 2016 posted on their website. Check back regularly, it’s likely they’ll post this years in the coming weeks.

DFCI Lynch Syndrome Program

References:

  1. Burn J, Gerdes A, Macrae F, et al. Long-term eff ect of aspirin on cancer risk in carriers of hereditary colorectal cancer : an analysis from the CAPP2 randomised controlled trial. Lancet. 2011;378:2081-2087. doi:10.1016/S0140-6736(11)61049-0.
  2. Schmeler KM, Lynch HT, Chen L, et al. Prophylactic Surgery to Reduce the Risk of Gynecologic Cancers in the Lynch Syndrome. N Engl J Med. 2006;354(3):261-269.
  3. Watson P, Butzow R, Lynch HT, et al. The Clinical Features of Ovarian Cancer in Hereditary Nonpolyposis Colorectal Cancer. Gynecol Oncol. 2001;82(2):223-228. doi:10.1006/gyno.2001.6279.
  4. The Center for Disease Control Cancer and Steroid Hormone Study. J Am Med Assoc. 1983;249(12):1600.
  5. Boyle T, Keegel T, Bull F, Heyworth J, Fritschi L. Physical Activity and Risks of Proximal and Distal Colon Cancers : A Systematic Review and Meta-analysis. J Natl Cancer Inst. 2012;104(20). doi:10.1093/jnci/djs354.

Sincerely,

The Anonymous Academic with Lynch syndrome


Our next #GenCSM is on Monday, March 27th! You don’t want to miss it!


Much gratitude to my “Anonymous Academic” for his stellar summary of the DF Lynch conference.

Hope to see you all on Twitter on Monday!

Yours,

Georgia

 

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