follow up with 2nd surgeon

brn2ride

I met with an oncologist a few days ago and he had a different colorecto surgeon talk with me today.
He seems to think I should have my rectum and anus removed. The oncologist said monitoring was an option for the time being. It seems as if surgeons are pretty go hung on surgery.
I asked about my lab reports and he said parts of the polyp that was removed had clear margins and parts of it were granular tissue but the granular tissue could be from the polyp getting damaged while it was removed.
The polyp had no signs of cancer in the nodes but he said there is a 30% chance that the cancer could have gone to other nodes.
it was a t1 cancer.

it seems to me that this means I have a 70% chance that if I had surgery done that it would all be healthy tissue removed. Does that seem right?
No one has yet to give me a cat scan or anything else like that, not even a blood workup.
The oncologist told me that most of those tests are not good at spotting colon cancer. that seems odd to me.

oh well I guess I will keep on researching and hopefully find an answer.

KierstenRx

Dear brn2ride,
Geez, what a mess. Your brain must be going crazy. I have been following you closely. I'm glad you got a 2nd surgery opinion. You are right when you say that surgeons are gung ho on surgery. I'll give you my opinion however I'm sure others will disagree. This is just coming from my point of view.
I think you should definitely request a CT/PET scan and bloodwork. I understand that the oncologist says it is not reliable. That was the first test my oncologist ordered. My tumor was quite large and set about 4cm inside my rectum. He wanted a clear view and also used the petscan to see if it was in any nodes (2 lit up). These tests are not perfect, but I think they are valuable.
I feel like your oncologist is being extremely agressive with you. You are stage one. I'm still not quite understanding why they wouldn't maybe try radiation with you to destroy any possible stray cells from the polyp. Maybe I am rambling. If you go the agressive route you end up with a bag for life. If that is the case it really isn't a big deal once you make the adjustment. I went in to surgery expecting a colostomy and I refused from day one to be ruled by s**t! Most of it is mental... I do absolutely everything I did before, still wear the same clothes, etc. If you stay very conservative and it spread or recurred you may have regrets for not doing more. For myself I wanted to be very agressive, but I was far more advanced than you. I would still try to talk to another oncologist at a major cancer center such as Mayo or MD Anderson. My oncologist is one of the top in the midsouth. I have always fully trusted his opinion. You need to have that trust in you oncologist. Listen to your gut!!! Do what feels right. Keep researching. You have plenty of time to make an informed decision.

Kiersten

betina61

Sorry,but I am very confused,Stage 1 getting a colostomy? I understood that for Stage 1 ,once the polyp or tumor is removed you didn't need any aditional procedure or even treatment.Anyone have and answer?

Moesimo

You need a third opinion at a major cancer center. They will have a team of docs that will discuss your case. Just google major cancer center and pick the closest one to you. I am not sure where you live.

Maureen

PGLGreg

I don't know what was meant by "other nodes". I have a guess at what the rest means ...

Your doctors don't care about ct or pet scans at this point, because those are only good at showing up comparatively large tumors. If your rectum does still harbor cancerous cells, they won't yet have grown to a size large enough to show up on a scan. Or, I guess, on a cea blood test, either.

All three of your doctors recommend removing your rectum and anus because that's the only thing to do that doesn't risk your cancer recurring. Chemotherapy and radiation might (or might not) lower your risk, but these don't work 100%. Since for you there is a treatment available that is a complete cure, the "standard of care" requires that treatment.

This is not a familiar kind of case for most of us here, because we didn't have the possibility of a 100% cure. We had to do chemo and radiation and take our chances.

So, what should you do? I have no idea.

Greg

4law

We're not doctors here, but the consensus suggests something is not right. In my case, I had 6 weeks of chemo (5FU) and radiation. It was designed to shrink the tumor so that the surgery will require less to be removed, thus improving your chances to avoid a permanent bag. I believe this is the standard protocol. Your case may be different because of the location of the tumor. Most doctors, I believe, will try for a course of attack to avoid a permanent bag. If your doctors feel it is required from the start, I guess they feel it is important to get inside and remove what is there with wide margins -- but if that is the case, I would think they would want to do the surgery ASAP. Also, I would think that other diagnostic tests, such as CT scan or ultra sound would be utilized to get as much information about staging and location before surgery. Follow your own instincts -- you are raising doubts about the course being planned for you and it makes sense to follow your own gut feelings. I would try for another opinion at a major teaching hospital or cancer center. Good luck and keep us posted.

KathiM

As I said in an earlier post...my sister had a polyp close enough to the spinchter that it would have meant a permanent bag, had she had surgery. Her treating docs decided on the treatment for anal cancer instead....which involves surgery only as a last ditch effort. She had VERY agressive chemo/rads, and as far as we know, it worked.

I agree with others....WHY this much ado over Stage I....are you driving it? Do you want to be 100% sure? You know, even AFTER all this surgery, it can STILL return....and now you have no rectum or anus...your life will be FOREVER changed....believe me, I lost my rectum and sig colon....they made a 'new' rectum out of descending colon...I STILL, 2 years later, have 'lifestyle changes' as my loving surgeon called it....

BUT, if you are NOT a gambler...well, then have the surgery...it's more than likely your best chance of not having cancer anymore....just get used to learning to wear an external appliance for the rest of your life...

Kathi

claud1951

Hi there,

I'm sorry this is so confusing to you.

As far as the Doctors didn't say anything about tests, blood work. I was Stage 3. Mine was on the right side (so I can't help you with the rectum). I did have a cea test (blood), CT & PET but it was small enough that none of these tests showed anything. My CEA levels have always been very low which doesn't indicate cancer (supposedly). So...that is probably why they don't mention it.

The only way they know where the tumor was, was to do a colonoscopy and but dye in there to show the surgeon the area.

Sure hope all of our answers help you.
Best of luck to you
Claudia

davidsonxx

I had rectal cancer but mine was high in the rectum so I wasn't faced with the prospect of a colostomy. The doctors are not giving you scans or blood work because those tests are looking for mets to other areas. With stage 1 cancer there is no other site so no need for tests to try and find it. I was stage II with a 1 cm tumor that didn't show up on the CT scan clearly. However cancer is a tricky little bugger and it doesn't always "follow the rules". You may want to get a scan just to be sure but there is no rush to get one.

I also wonder about the aggressive treatment proposed for a stage 1 diagnosis. Do you have a family history of cancer or something else that would put you at a high risk of recurrence? Unfortunately with a tumor so low in the rectum a surgical option most likely will require a permanent colostomy. I would try to find a colorectal surgeon who specializes in sphincter sparing surgery and get an opinion from him/her.

It is a hard decision to make. I had a temporary ileostomy for about 4 months following my resection. It took me most of that time to get comfortable with the ostomy. It actually has some advantages like not having to use public toilets. Having a colostomy isn't the end of the world but is is a big adjustment. Whatever you finally decide run with it and don't look back. Second guessing your decision will drive you nuts and won't change anything. Good luck.