← Return to Where do I go from here? 34 year old son diagnosed with rectal cancer

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@mlvangil

Hello! I'm a stage 3a rectal cancer survivor.

Diagnosed two years ago at age 50 at my screening colonoscopy. I had a lower anterior resection and 6 months of chemotherapy. No ostomy needed due to the location of the tumor. I happened to also be an oncology nurse (left that career in 2019). My original treatment was done at the major hospital system in Atlanta where I used to work. Since finishing chemo in August 2023, I have gotten second opinions at Vanderbilt Univ and at Mayo -- Jacksonville. I've had three surgeries (well, really 4 but 2 were combined). Two at Northside in Atlanta, one at Mayo. I continue my ongoing surveillance split between Northside (labs every 3 months) and scans at Mayo (now graduated to every 6 months). All this background is just to give you a sense of my path through this.

Now the advice for your son -- ask him to check out a wonderful organization called COLONTOWN. I volunteer for them now as they made such a difference for me. My Mayo doctors are well aware of this org and think highly of it. It manages three main ways of support. First, more than 100 private, invite only FB groups split by diagnosis, stage, interest, etc. This includes at least one group for "ostomates". It is amazing the knowledge and excellent advice you will find in these groups. They also have groups for caregivers as well. Second, COLONTOWN University, a website that takes you through all the latest science-based information from a patient perspective. Finally, DocTalks, a portal of dozens of approx. hour-long presentations by the top doctors in the country in various areas around the CRC (colorectal cancer) space. COLONTOWN employs a science director, who is also a survivor, and she is on top of making sure only accurate and proven information and advice circulate within COLONTOWN.

I think your son will find a lot of people of his age range and situation in CT. It helps so much to talk to people who understand where you are coming from. I wish you both the best on this journey. - Michele

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Oh -- and one more thing. The ostomy is a change for people at first, but I have friends who run marathons and swim with them so they are not the barrier it may seem. Some people with CRC will have an ostomy during treatment that can be reversed post treatment.