Rectal Cancer, 80% chance live on Colostomy bag for life

TheXpat

I just got diagnosed with rectal cancer less than 2 weeks ago. I am a 59 Year old male.

The cancer starts 3.2cm inside my rectum, is 3.2cm thick and 6.2cm long. That is just the live cancer itself. There is further damage the cancer has caused, and it has spread to my liver.

According to my doctors it has been growing for about 3 years, without any symptoms until 3 weeks ago, when I started bleeding in bowel movements. No other pain or discomfort of any kind in past 3 years.

Even when I went to see the Doctor we all thought it was most likely Hemorrhoids, so it was a shock that it turned out to be cancer.

So far I have had the colonoscopy, CT Scan, and PET scan.

Doctors recommended Chemo then surgery, I have turned down the Chemo completely. Not willing to risk destroying my immune system, or making myself susceptible to contracting other illness while immune system is down.

In a way I am already happy I passed on Chemo since they wanted to start Chemo the next day.

While in hospital 5 days after the doctor recommended Chemo I caught bad cold, which has turned into pneumonia, this fact has only reinforced my belief to avoid Chemo at all costs!

I am a Westerner living in China, and only have Health Insurance that covers me in China.

I have gone through DNA and other testing to see if I qualify for several different Cancer trials, all to no avail.

On Monday I have an appointment with what I am being told is an "experimental" treatment, to get the details and process involved. I am hoping they have an alternative to surgery, or at least to reduce the risk of spending the rest of my life on colostomy bags!

Right now I am thinking that if Monday's meeting is not a option for me that I will have surgery on Friday.

I am not sure if I am rushing this too fast or not, I am also very concerned about the effects of living with a colostomy bag for life.

Wondering if anyone can give advice on any alternate ideas besides full blown surgery, whether I am moving too fast etc.

Also the idea of a colostomy bag scares me, I am not sure what I can or cannot eat with it, how my life will change, or what the ramifications are of a colostomy bag are. Doctors are basically saying they have to remove so much of my rectal area that they give 80% chance that I will be on a colostomy bag for life.

Being in China and not speaking the language means some things can get lost in the translation. So I am very unclear about the Quality of Life on a colostomy bag, what health effects it might have, whether it reduces my lifespan by relying on it etc.

I am a total idiot when it comes to cancer, I am one of those who always thought, "it will never happen to me". So getting the diagnosis and trying to sort it out in my head in such a short time frame is very daunting to me to say the least.

Any advice, thoughts, etc would be of great interest to me, especially considering the short time frame in which I need to make life altering decisions.

mak1970

You are going to be just fine! Skipping chemo is probably the best decision you could make.

TheXpat

https://csn.cancer.org/discussion/comment/1724077#Comment_1724077

I have no clue where you get the "given up" part at all! I am far from having given up.

How do you get "If you are against the chemo, you may as well avoid the surgery too then you do not have to worry about the bag either." One has nothing to do with the other. Chemo destroys the immune system, surgery at least removes the cancer areas! Avoiding surgery is not an option in my mind since it only gives me about 3 months left to live if I don't.

It seems you are a glass half empty type of person, I am the opposite!

As I stated earlier, I know nothing about cancer issues other than what I have seen others go through. Had I known a person could have cancer for years and not even know it, or have any symptoms I would have gotten a colonoscopy every year. Which is the advice I have just given to all my friends over 50.

The American and Canadian Cancer societies both say get a colonoscopy once every 10 years, my case proves 10 years is far too long a waiting period! I had a colonoscopy done when I was 50, if I had gotten it done once a year since, it would have been discovered at least 3 years ago in it's early stages and I would not be facing living with a colostomy bag for life now!

All the Doctors I have spoken with their "default" mode is get Chemo, and they all seem to try and paint a "Rosy" picture of Chemo and avoid completely all the possible damage they can do to a person.

I came to this forum, seeking advice, alternatives, or life experience dealing with things like living with a Colostomy bag. Maybe this wasn't the right place to come after all!

mak1970

https://csn.cancer.org/discussion/comment/1724079#Comment_1724079

How kind of you to point out that I am a pessimist, you are the true sunshine in the world. You are soooo lucky that you are so much more smarter than the doctors, and you figured out that colonoscopy secret. You are a true fighter, and you will live life with the surgery only 😍. Enjoy your colostomy bag, just odd that you have cancer and think this will be your biggest issue. P.S. I take my prayers back, you seem to have this situation well in hand.

Arx001

Hello,

First part: To chemo or not

Are you stage 4? It is quite possible that there are cancer cells elsewhere other than your liver so I am having a hard time understanding why you refuse chemo especially with a liver metastasis. I had oral chemo during my radiotherapy after a stage 3 diagnosis, then iv chemo. Once cancer recurred, I had a surgery and now having preventive oral chemo again just to kill possible cancer cells around. Since there is a liver metastasis you must then have a liver surgery I guess on top of a total mesorectal excision / LAR? I don’t know if you have a tumor in your liver or just some cancer cells but please be forewarned that cancer loves to come back from tumor roots so surgery is really really important together with chemo.

I’m not telling you what to do but just my limited experience. Plus I know nothing about a liver metastasis so I can’t comment on it except that it is extremely serious.

FYI, no matter what medical imaging says you may have cancer elsewhere. I know this firsthand, my MRI was perfect but biopsy found cancer cells. Then the biopsy of my resected rectum had %1 cancer cells.

Second part: Colostomy

Given the very low positioning of the tumor, to my knowledge as a patient you will definitely get a colostomy. I have temp ileostomy and can live with it. Colostomy should be easier, you can eat more food and no need to empty your bag 7-8 times a day. I would not worry about the colostomy myself, the thought is very tough but it is very doable.

Summary:

Your refusal of a chemo is a x20 bigger problem than the pouch. The surgery you will have will be a huge one and if you will not even try to cure your cancer thru a chemo then why have the surgery at all?

I’m sorry if this is not the answer you are looking for but this is all what I can say.

Anyway, good luck with the treatment of your choice.

Best wishes.

bibliophile

From another angle on the chemo… I know there is a lot of legitimate concern about doing chemo. I am kind of a health nut and tried to do everything in my life as naturally as possible, exercised, ate right. Then I got cancer anyway. For a lot of different reasons, chemo was recommended after my successful resection surgery and despite my reservations, we decided it was still the best chance for me. It seems one of your big concerns is your immune system. For what it's worth, the first-line chemo I was on didn't affect my immune system. Yes, there were other side effects and those are definitely something to consider. There's no "rosy picture" of chemo. But if you just want to know about immune system issues, my WBC numbers stayed solid through the entire 6 months of treatment and I never got ill. I have also not noticed any long-term chances in my immune system. I did not get ill more often after that chemo either. So not all chemos are the same and not all people are the same. Maybe consider asking what regimen you might be on and do some research for yourself and see if it is still as big a concern as you first thought or if it might be worth the tradeoff for better disease control. As far as alternatives to chemo and surgery, since I was doing a lot of the healthy living things people recommend as alternatives before I got cancer, I don't have any advice on which alternatives might be useful because they were not useful in my case. If you search "alternatives to chemo" on the discussion boards you will get lots of information there, though, so I would suggest that if you are interested. And no perspectives on the colostomy, sorry, because I was lucky enough not to need one. I have been really helped by this forum, so I hope you don't give up on all of us too soon. 😊Best wishes in your journey!