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

Your son much take action as soon as possible. Just as important, you must find the necessary resources to support yourself as caregiver!

Do we have any idea how long it takes them to get back to my son after submitting the request?

Thank you for the advice. This really helps a lot ❤️

if it hasn't metastasized it may be possible to treat with proton radiation.
I had stage 3 anal cancer and that is the treatment I used.
few side effects and no colostomy bag.
doesn't destroy all the tissue around the tumor.
just the tumor.
Hope he finds what works for him.
positive thoughts going his way.

Thank you Sam. It is currently centralized in the pelvic region in rectum and four adjacent lymph nodes.
Not showing up anywhere else. However it is 5cms which the oncologist said is pretty big.
It would be a blessing if he is able to go this route but won’t know until we hear back from Mayo to get an appointment scheduled.
I fear every day the longer we wait the more challenging the treatment will be.
Greatly appreciate your input. That gives me hope ❤️

@samclembeau Hello, just for clarification- was your anal cancer squamous cell? I had rectal cancer/squamous which different than adenocarcinoma. I did the Nigro protocol because I did not do enough homework and investigate the option of proton radiation. Would love to hear more about your journey for my knowledge bank.

He is diagnosed with adenocarcinoma rectal cancer. So are you saying this may not be an option for him?

I am not sure, that is why I asked for clarification. (Sorry if I confused even more, but my Treatment was delayed and changed because of the squamous designation.)

Hi myboysthree,

First, I'm sorry that your son and your family have to go through this. I'm glad you've found this site and I also highly recommend Colontown as a resource. It's been invaluable to me.

I had a similar diagnosis in October of 2022. I was treated at Penn Medicine in Philadelphia, an excellent cancer care center.

It's pretty typical for this cancer and your son's diagnosis to start with chemo-enhanced radiation. I did that for 28 daily treatments with capecitabine for the pills and proton radiation for the radiation. Radiation treatment can shrink the cancer to make surgical outcomes better or can eradicate the cancer completely in about 25% of cases.

My initial scans after radiation seemed to indicate a complete response (meaning the tumor seemed to be gone). This would have made me eligible for "watch and wait", close surveillance rather than surgery. I was hoping for this to avoid surgery at all costs, but a subsequent direct exam found residual cancer at the tumor site.

So from there I had LAR surgery to remove my rectum (all buy 1 cm) and my sigmoid colon. This resulted in a temporary ileostomy to give the reconnected colon and what was left of my rectum time to heal. I had been deeply upset at the prospect of having an ostomy, but it turned out to be very manageable once I got the hang of it. There are wonderful resources for learning to live with the bag. I was able to recover from the LAR surgery and live a very normal life for 6 months with the ostomy, including full physical activity overall and intimacy in my marriage.

During the 6 months, I had clean up chemo for four months to ensure that there were not residual cells in my body. That was also doable. Not great, like all the other steps, but surely manageable. My ostomy was reversed a year ago and I am living a very healthy and normal life post all of these treatments and surgeries with no evidence of disease. I am still under surveillance with scans every six months.

I share all this because this is a pretty typical treatment pathway for diagnoses like your son's. I did work at a pretty demanding job through all of it, save for five weeks of recovery time after each surgery.

You are right to seek out the best care that can be found. While it is true that early treatment is best, please don't be too alarmed by the waiting time. I was diagnosed on October 19 and didn't start radiation until almost two months later because of testing, treatment planning and availability. I was assured by my doctors that these are relatively slow growing cancers and a delay of months was not a worry. I finished radiation in early February and my LAR surgery wasn't until mid-May. I share this just to give a sense of timeframes, and this is at one of the leading cancer treatment centers in the country.

Wishing you well. This period after initial diagnosis is in may ways the hardest part. A good treatment team, a concrete plan, and then simply putting one foot in front of the other in making one's way through the treatments does bring peace of mind and order to an otherwise really challenging time. Your son's prognosis is excellent with contemporary treatment and advanced science, improved dramatically in just the last few years. Don't take the longevity and survival rates that you may find on the internet too much to heart. They are much better now than they were even recently.

Don't hesitate to reach out with questions and concerns as they continue to emerge.

Rich

It was squamous cell. I don’t know if it matters what kind of tumor it
Treatment may be the same. I know they originally wanted me to do the negro protocol (6 weeks radiation plus chemo)Proton radiation was not an option at any of the facilities that i went to, because “the numbers weren’t there “
Well, it is a rare cancer and a fairly new procedure so I think of course there no numbers if you aren’t doing it. Anyway I contacted proton center that only does proton radiation and found they would do it for my type of cancer.
Sooo happy I did. Proton is used for other types of cancer so mayo, md Anderson, ucsf, Bethesda, ucsd, etc +++ may do it for your son’s type of cancer. I went to 4 of them. They apparently still won’t do for anal.
BTW, I no longer test positive for the hvp virus. Apparently the proton radiation took care of that too. I Get tested quarterly for it.
I am scheduled for my 9 mo. PET scan so will keep you posted on the results.
So far I am NED (no evidence of disease) nine months after treatment.
The way I found this place was through this web site.
“Gently” gave me the information. I am forever grateful.

If you would like more information, feel free to message me.