Advice/experience for a friend

ksmithj4917

My dear friend had a total collecting and rectal pouch created as a result of ulcerative colitis when she was young. She received news earlier this year that she had developed adenocarcinoma of her rectal pouch. She was initially told the plan was for radiation chemo then surgery that would leave her with a permanent ileostomy. She has been through her radiation and chemotherapy and has shown a COMPLETE response to therapy! Here is the dilemma…her doc is now saying she has the option to “wait and watch” which would mean no surgery and follow up every 3-6 months for a scope and MRI. All along the plan has been surgery, she had accepted it and come to peace with having the permanent bag. Now she is very confused as what route to choose. Anyone have similar experience and any advice? I might add she is very young in her 20’s. Still hoping to build a family.

ksmithj4917

ugh autocorrect! …**total colectomy

mak1970

You are such a good friend for helping with this, and I am so happy that the chemo/radiation was successful! Methinks that since she is hoping to build a family, she should consult with ob/gyns that can evaluate her situation; this may also require some time to let the radiation damage heal. Unfortunately, this will be challenging since the U.S. health system does not produce doctors that are overly competent (meaning they will take the time to research thoroughly), but they are out there if you keep looking (of course then the challenge is the U.S. health insurance system). The change to a wait and see is really good news because it does buy time, since it is not recommended unless it is a viable (though not guaranteed) option.

bibliophile

I'm not in the exact same position, but facing similar choices so here are some questions I would ask my doctors. 1) Was this a potential "cure" or is there a higher likelihood of recurrence or distant spread from residual cells with watch and wait than with immediate removal of the area of concern for my particular case? Surgical removal does usually have better outcomes in general. (Things to ask about related to this are radiation dosage, tumor size/stage before treatment, 2) In my 20s, what are the quality of life trade-offs since quality of life will be a major factor with so much life to live. Not getting surgery now will improve my quality of life now. Will watch and wait possibly lead to different spread that could have different quality of life issues on top of potentially still having to have the surgery later? 3) Does one approach have a more significant impact on my potential fertility options?

This is a good article that could inform your conversation with your doctor. https://www.mskcc.org/news/why-watch-and-wait-instead-of-rectal-cancer-surgery-may-be-right-for-you

There are no guarantees and even the best doctors can't make promises, only educated guesses, and these are huge decisions so often they are hesitant to give advice or make predictions. So just get as many facts as you can and then make the best decision that you can in the moment and then enjoy every day to the highest degree possible knowing you are doing your best with what you have.

Pomona

Along with forum, your friend may also want to check meetanostomate.org. The folks on that site are also good at sharing their experiences. Their are folks of all ages.