AliveandKick'n the podcast David Dubin

I sit down with Alison Rosen, colon cancer survivor and lead on Project Echo for the American Cancer Society.  We talk about young adult survivorship, cancer advocacy and of course Lynch Syndrome. While Alison was 32 at diagnosis, she (so far) has tested negative for anything genetic, which was surprising given the family history of cancer.  Apparently we were on a podcast together in 2012 or so (someone look it up) so Alison looked me when it was time to potentially get an ostomy.  Project ECHO (Extension for Community Health Outcomes) bringing subject matter experts with participants from many walks.  All teach all learn is the motto.  Successes and failures, tools, and more.  Allison is co-chairing the Art and Science of Hope panel at ASCO.   

Full disclosure, we recorded this in February, just as the Alabama Supreme Court IVF decision was handed down.  I sit down with Scott Weissman, Genetic Counselor and so much more, at the Norton & Elaine Sarnoff Center for Jewish Genetics.  Statistically we're all carriers for something in the carrier screening space, but also statistically it's very low for both partners to be carriers for the same mutation.  Interestingly, Illinois has specific issues geographically as it borders a number of states that have strict reproductive rights issues, including abortion and family planning.  We did discuss hereditary cancer, including CMMRD, constitutional mismatch repair deficiency.  We also discussed the potential Lynch Syndrome vaccines and how the current backlash against science and vaccinations could be detriments to moving forward.  We did get into socioeconomic issues, not just political and philosophical, but I think we're on a similar page.  Whatever hair we had left is gone.    

I sit down with Dr Asaf Maoz, Medical Oncologist at Dana Farber Cancer Institute, who I recently saw at the LynkedIn and Scientific Symposium.  We discussed what brought Dr Maoz to this point, discussing immunology, T-cells, receptors and targets.  Dr Maoz confirmed that not all Lynch cancers are MSI-H.  This year, for the 5 year anniversary of the patient LynkedIn conference, they had the scientific symposium the day before.  Dr Michael Foote from MSK presented some data on cancer risk after immunotherapy.  I appreciate the debates and conversations that take place at the symposiums, and how data will continue to drive innovation, but like anything, until you generate the data you can't hypothesize and stratify.  Of course we ventured into the cancer vaccine space and the unique molecular features of Lynch Syndrome and the potential to prevent cancer in the future.  Takeaway is to keep up with screening regardless.  We also discussed language barriers to healthcare overall, not just Lynch Syndrome, including how AI is being looked at in order to potentially find tidbits that are missed.  

I sit down with Emily Goldberg, Genetic Counselor for JScreen.  JScreen is a nonprofit that provides cancer genetics testing, but also has a reproductive carrier screening panel. Most patients choose saliva but sometimes blood is chosen by mobile phlebotomy.  JScreen which started in Atlanta, provides testing and counseling in all 50 states.  Pricing is unique because they are a non-profit.  Cancer genetics was launched 3 years ago at JScreen and the numbers have increased dramatically with people wanting to have genetic testing.  There's still wait times for cancer genetic appointments, so there's a need for services like JScreen.  Variants of Uncertain Significance still happen regularly, about 20% of the time.  Historically they get classified over time as benign.  Cascade testing, or getting other family members tested after one tests positive, continues to be an issue in the space.    

Boise Podcast pro Cody Mitchell joined me on the podcast as we talked Lynch Syndrome as she approaches her 4th cancerversary of endometrial cancer.  Cody has been able to turn her diagnosis into knowledge and cohesion among her network.  Cody is considered de novo as she is the first in the family to have a lynch mutation.  Cody's genetic counselor recommended AliveAndKickn and she appreciated that we are living with Lynch, and the information is coming from reliable sources, especially in a world of misinformation.  Cody and I are also on Peloton together, so she shared her story of getting her Peloton during treatment, which of course during Covid.  She gives credit to her oncology physical therapist who recommended an exercise regimen, and cites the benefit of exercise and consistency to maintaining her identity.  Her numbers actually improved during treatment.  I won't give away Cody's favorite Peloton instructors, so you have to listen for yourself.  I tell the story of my one and only time doing Peloton meditation in the studio.     

I sit down with the Awkward Angler herself, Erica Nelson, from west of Denver in Crested Butte, Colorado.  Erica is a flyfishing guide in the Valley with a Lynch Syndrome story and so much more.  Erica also does consulting on diversity, equity and inclusion with her own podcast.  The organization Brown Folks Fishing has a number of programs around conservation, but also looking at leadership roles.  Angling for All addresses inequality in fishing, talks about reconciling and navigating our own identities and creating action.  True diversity work is in the recovery. Erica is the second indigenous flyfishing guide in Colorado.   I learned about Hozho, the term for balance and beauty in everything.  The loss of her mom unexpectedly coincided with pain that caused her to get checked and she had cancer.  She had a hysterectomy, and learned she inherited MLH1 from her father.  Erica is balancing the grief of losing her mother and the changes in her body.  Erica disclosed that she postponed her urgent surgery to go on a trip to Brazil that she had been planning for some time.  Obviously she's ok, so...good decision/bad decision.