surgery decision help

Patrickbelton

Hi - I was diagnosed with colorectal cancer at the beginning of April this year. I immedietly went straight to chemo and radiation because they wanted to increase the margins for surgery because my tumor was in the lower rectum. We finished that treatment 6 weeks ago, and they recently had me in for a procedure to see the results. At this time, they found that the tumor had been destroyed, and the pathology report came back cancer free. They followed that up with a PET and CT scan that also came back negative. I'm going in for an endoscopic ultrasound tomorrow to affirm 100% that they are finding no cancer at all. This all is coming as very good news. But, our surgeon is still recommending that we do the big surgery (basically removing almost my entire rectum) to make sure that it's not living in the lymph nodes. I'm very hesitant to do something that extreme at this point. They've told us that if I don't do the surgery, the chance of it coming back is still slim, and that they could just do chemo to sort of mop up any cells that could be floating around (if this is what I opted to do). However, they don't really have any good data to support this in the United States. There's a study in brazil where they did the "watch and wait" approach, and with 70 out of 100 patients it didnt come back. And the patients where it did come back, only 1 was unsalvageable and died. The others were all able to get the originally planned surgery, and removed it later. My fear in getting the surgery that they're recommending is that because my tumor was so low, that I'm going to be running to the bathroom 10 - 15 times a day after the surgery, and that it could be even more than that - At which point, I'll be asking for a colostomy bag because I can't function otherwise. I have all results pointing to cancer free right now. But, I'm 41 with a wife and child and also don't want to take a whole lot of risks here. I'm very torn about to do right now and was hoping to get some advice / thoughts from all of you. Any help would be greatly appreciated.

Thank you!

Patrick 

JanJan63

Sorry you're here but you've

Sorry you're here but you've come to the right place. Your situation sounds like mine except that after the chemo and radiation I still had a big tumour. Mine was about 2 inches from the rectum so it was quite low as well. He took out, I think it was, 14 inches of bowel during the surgery. I had an illeostomy done before the surgery but not a colostomy. While it has it's own issues I'm glad to not have to deal with bowel issues because of it. I had pretty severe IBS beforehand and never have it now so I'm not in a hurry to get it reversed.

Anyway, in response to your question, I'm not sure what I'd do. I know they take out a bigger area than the cancer to make sure they get everything (the margins) and the lymph nodes need to be removed if they're cancerous. But your situation is unique. I'm sorry, now that I'm posting my response I realize I have no suggestion or even opinion.

Jan

Suzyqw1

My situation is similar to

My situation is similar to yours, too, but I didn't have either chemo or radiation.  After a tattoo, 2nd biopsy, CT scan, and endoscopic ultrasound, there was no evidence of cancer. At that time the radiation oncologist's suggestion was that I have the big surgery or the transanal excision with or without radiation.  The medical oncologist said that I should wait and have periodic checks.  The tumor board recommended that I have a transanal excision.  I chose the transanal excision, which showed no evidence of cancer, either.  I've had 2 scopes since my January operation, and both were clear.  I'm scheduled for a colonoscopy in October.  If that goes well, I'll continue to have a scope every 3 months for at least another year. 

Best wishes to you with whatever you decide to do.

Susan

Trubrit

My personal advice...

would be for you to go and get a second and possibly even a third opinion. 

This, as you are well aware, is a huge decision, and I think it should be made with as much info behind it as possible. 

Good luck, and let us know how it all pans out. 

Sue - Trubrit

 

Easyflip

Sooo

from what you've written it's a 1 in 100 of dying or major surgery that will screw up your digestive tract. Can you improve that 1 in 100 with supplements, exercise, cannabis oil, fmore frequent screening? I've actually never heard of removing a bunch of local lymph nodes just in case they might later become cancerous, how many? it's a tough call but if I were you, and this is just me, I wouldn't do the surgery, nor would I do mop up chemo, I would do everything else alternative that made sense to me and I would enjoy being in remission. Just me, not telling you what to do. Good luck, it's not an easy decision.

Easyflip/Richard

blackrobe

why not just biopsy lymph nodes to see if it has spread....

...of course, this opinion comes from a lay person, not a doctor.

my experience. I was your age. Stage 3. It was in my rectum and lymph nodes.

Treatment PLAN:

radiation, then surgery to remove HALF of my RECTUM and a portion of my large intestine.

Thankfully, I was spared having to get a temporary or permanent colostomy bag.

Chemo followed.

 

The surgeon warned me that removing this amount of rectum, which included the sphincter muscle, would more than likely cause for me to have 4-8 bowel movements per day.

 

They were correct. Sometimes, I go much more than 8 times per day.

 

Your decision is not an easy one. I will say though that I would rather have surgery WITHOUT CHEMO. CHemo about ended me. They stopped me halfway through treatment because of adrenal glands shutting down and I was nutropenic (blood pressure fluctuating too much) and my self-injections of white blood cells stopped producing any new "baby" white blood cells.

 

Good news..... I am cancer free for over 3 years. I am praying for your healing!!!!

Brad

BillO60

Almost in your situation

My situation is similar to yours with the exception that after the 6 weeks of chemo and radiation my tumor (which is also very low) is still there although it may have shrunk a bit.  Also, I have a possible 1cm lesion (possible metastases) in the liver which they'll deal with with chemo.

I had an appointment wiith the surgeons today and had a discussion about how much of the rectum they'll take and one thing they mentioned was that although the tumor may have shrunk they still take out the area to the margins that was tatooed during the colonoscopy because they don't know whether or not there are any non-visible cancer cells still in that tissue. Even with the mop up chemo they tend to be conservative about removing affected tissue. 

But you are right, the statistics and stuides are all over the map. I have to say that if I'd come back clean after the radiation and chemo, and especially if they are doing additional chemo, I'd likely take a wait and see approach.

I am expected to have either a temporary ileostomy (that's what's planned) or a permenant colostomy, depending on what they find when they go in.  If I don't go for the permenant colostomy upfront then I'd run the risk of having frequent bowel movements (although they estimated 4 - 6), urgency, and possible incontinence. Although I'd prefer not to opt in for the permanent colostomy unless I knew for sure that I would have a problem it's a gamble. I've had an ileostomy before so I have some experience with having to use ostomy bags and while they are certainly something I could live with I'd prefer to avoid them if possible.  Unfortunately, not a lot of good information about this topic (i.e., is the increased number of bowel movements, urgency, etc. permenant or does the body adjust?)

Good luck with your choice.

Bill

 

Lovekitties

Hi and welcome

You have a very rare decision to make.  Most folks don't get those kind of results just from radiation.

I have to assume that there is no question that the tumor was actually cancer.

Yes, it is possible that the lymph nodes are involved, but if all the scans and tests show no evidence of disease, my choice would be to postpone surgery and chemo, and do checkups often.  While the CEA marker is not always a good indicator for all, do you know if they did that blood test before and after radiation?

From all the stories of disease progression that have been posted here, we know that even surgery is not a quarantee to prevent recurrance. 

I hope that you remain cancer free and have a long life ahead of you. 

Marie who loves kitties

lp1964

Dear Friend,

I was in your shoes two years ago. This is a big dilemma. In about 20% of the cases the tumor gets destroyed completely by the radiation and chemo. But there is no 100% to tell. They can only say 100% when they remove it and slide by slide the look at it with a microscope. I decided to have it removed, because I could not live with the risk and the uncertanTy. This is a personal decision you have to make. I'm 50 with a 17 year old and recently married. I have colostomy, but life is still great. I feel great and feel content and optimistic.

Was your cancer adenocarcinoma or squamous cell anal cancer? What stage?

Laz

db8ne1

It's a Crap Shoot

Literally.  Pun intended.

Sorry you find yourself needing to be here, Patrick.  I was in your shoes in Dec 2012. Stage 3. My tumor was in my upper rectum and was T3 - so pretty advanced - couple of lymph nodes lighting up.  6 weeks of daily chemo and 5FU.  Results:  Tumor was eradicated. I was told that was highly unusual in such a deep tumor. Biopsy clean. EUS looked good.

There was never a discussion/option of surgery for me.  No Dr on my cancer staff indicated otherwise.  Had 10 inches of colon/rectum removed in April 2013. Not sure going in, per surgeon, but came out without any ostomy.  Yay (or maybe not...). Spent a lot of time in the bathroom during recovery from surgery.  Things got worse during/after FOLFOX chemo started.  Was on FOLFOX until October.  Note: Worked full time after surgical recovery and during follow-up chemo.  Until I fell from chemo dizziness and broke both of my wrists.  But, that's another story...

While things have markedly improved - bathroom-wise - I don't think all will return to "normal".  It's certainly manageable and I have issues periodically (sometimes one or two times a week).  But, considering the alternative - I'm good.

I didn't get 2nd or 3rd opinions.  I was very satisfied with my caregivers. That said, if you are at all uncertain, other opinions are always recommended.  In the end, you have to do what you feel is right for you.

I wish you all the best with your decision and upcoming challenges. 

Keep us posted! We are all rooting for you here!

Best,

J