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

Suggest you call Mayo as soon as you can because there may be a waiting. Of 3 to 4 months before you can't be seen

Sorry... Before he can be seen

I had stage 3B anal cancer at 40. I was treated at Roswell Park in Buffalo I had the Nigro protocol treatment. I’ve been well for 20 years. I beg you to get him treated right away. Mine had spread to my lymph nodes in the right and left side of my stomach. Your son can survive this!

@myboysthree

I would recommend your son starts the process to request an appointment at Mayo Rochester. If he decides to continue treatment in Iowa, that is OK, but at least if he contacts Mayo, he is starting process if he decides to seek a 2nd opinion. Often Mayo specialist can work with local providers to develop a treatment plan.

He can self-refer or ask his provider to refer him.
The process starts here: http://mayocl.in/1mtmR63

Thanks Laurie. Spoke with him earlier today and he has already filled out the appointment request. Just waiting to hear back from someone at Mayo.

We are on it. Just received the diagnosis on Wednesday. He filled out the form to request an appointment at Mayo this morning. Keeping my fingers crossed that he can be seen sooner rather than later.
Thanks for your words of encouragement ❤️

May I ask if you had to have an colostomy bag? He was told that he would have to which is his biggest fear. He is a Chiropractor and owns his own business and is struggling to understand what the impact will be on his life, especially at his young age 😢

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

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.

@myboysthree Wishing your son and his family all the very best. You will all be surprised how resilient and adaptable you all will be in dealing with the twists and turns of this journey. It’s been heart warming to read all the responses and care from those who have commented here.

I’m a stage 4 appendix cancer survivor with > 2 years of no evidence of disease post treatment. Part of my treatment included removing a portion of my colon. I was warned and mentally prepped that I might need a bag after surgery, as the surgeon would not (in my case) know exactly what he would need to cut out until he was in. I was mentally ready and had read so many stories from those who adapted and lived full lives with their bags. If it had to be then it had to be. Being alive with a new normal was so enticing by that stage. I woke up from surgery without one.

The earlier treatment starts the better the prospects of being healed with less treatment and with more prospects of being able to work during and aftertreatment 🙏❤️‍🩹 I was fortunate and did despite the spread due to prompt and aggressive treatment 🙏❤️‍🩹

PS If your son needs to do chemo he must chat with his oncologist about neuropathy. My job meant I needed to minimise neuropathy if I could so chose to avoid Folfox and anything to do with oxaliplatin as my 1st line. I had Folfiri and Avastin for my particular cancer/condition and have had no neuropathy.