The Colon Club

Hi,

My name is Ben, I am 39 years old and I was diagnosed a few months ago with Stage 2/3 low rectal cancer. At the time, the treatment plan outlined to me was initial 6 week neo-adjuvant course of chemo-radiation, followed by APR surgery, followed by 4 months of adjuvant chemotherapy.

I have just found out that I have had a ‘complete response’ to the initial chemo-radiation treatment (based on PET and MRI scans taken 6 weeks after last radiotherapy session) and now I am trying to decide whether to go with the standard recommended approach of having APR surgery and permanent colostomy or whether to go against the surgeon’s recommendation and ‘wait and see’.

I have done a lot of research online and there are a number of studies where they have had excellent results with a non-operative approach (along with stringent follow-up involving regular MRI, endoscopy etc), particularly the Habr-Gama research in Brazil and the study done by Maas et al in Holland, so I am certainly tempted by the option of deferring surgery. This article gives a good overview of the current situation: http://www.cancernetwork.com/oncology-j ... r/page/0/3

It seems like this approach is gaining momentum and my gut instinct tells me that if they can make it work in Brazil/Holland/UK, then they can make it work anywhere else where they follow the same protocols.

I am really confused at the moment as I don’t want to go against the surgeon’s recommendation but equally I don’t want to have such invasive surgery if it is not necessary. I know that if I have the surgery and then my pathology comes back clean, there is a serious chance that I will resent the bag and be resentful of the choice I made to go against my gut instinct in favour of the 'safe' option. Whilst I am sure that I would adjust to life with a stoma, I do not want to live the rest of my life with a little devil on my shoulder telling me "you didn't even need this bag" every time it gets on my nerves.

I am particularly interested in the current trial being conducted at the Royal Marsden Hospital in UK (http://www.pelicancancer.org/index.php/ ... gery-study) and I am trying to decide if I would enrol in this trial if I was in the UK. I think I probably would if it was offered to me, so does that not mean I should follow my gut and take the same approach here, even if it means going against the surgeon's recommendation?

The crazy thing is that I am far more stressed out now (with 'no detectable disease') trying to make the correct decision than I was when I was first diagnosed!

I think the simplest thing would be to just switch my brain off and say "yes doc, whatever you say doc" and never question it again... but unfortunately I don't seem to be wired like that.

Is anyone else in a similar situation?

Thanks a lot,
Ben

My situation was similar, but I didn't get the CR until AFTER my LAR. Afterwards when I was thiniking about things, I asked my doctor is the whole thing was necessary and he did mention some studies you mentioned, but he errs on the side of caution. If I had been given a choice....I seriously have no idea what I'd do. Playing with a ticking time bomb? Don't know. I also have Lynch so...Best of luck with your decision. Kristi

Dr. Habr-Gama has been around for quite some time and I am a huge fan of hers. It was her studies, combined with others that made me opt for an excision over the traditional LAR.
Here is the one thing, though, that you must remember. You can say that you have a complete response, but it is only a complete CLINICAL response based on whatever imaging you have had done. First of all, imaging done after chemoradiation is NOT a precise science (the pelvic area) because scar tissue, etc can and does distort the views. I would suggest that you get a rectal ultrasound done but wait a few weeks. I say that because 6 weeks is NOT the standard of care anymore to wait after treatments.....give the radiation some more time to do its job.
That being said, you might want to first opt for an excision BUT.....use it as a diagnostic tool. By this I mean, use the excision as a sort of 'biopsy'. There is absolutely NO way to tell that there aren't minute cancer cells left in your rectal wall without removing that portion where the tumor (and surrounding area) was located. Many people believe that they have a 'complete response' based solely on what the imaging reports show and/or what the surgeon can feel and see BUT...again, those reports and visual exams can't detect microscopic cells in the rectal wall.
IF this is the route you want to go, then you need to have some contingency plans as well. For example, if the pathology report from an excision came back and showed a T2 tumor, you might want to reconsider your plans....if it showed a T1, again you need to have thought out what you want to do. I would also, before jumping into anything, talk to an oncologist and make sure that he/she is 'on board' with you doing mop up chemo, even if the pathology report comes back 100% cancer free and an excision is all you go with.
Take a look at my signature and you'll see that I did the 6 weeks of chemoradiation, more chemo, then had the excision and IF the pathology report had even showed ONE cancer cell, I would have done 6 more months of chemo. You need a plan of attack so think everything through very carefully before you make any decision.
Jaynee

I was in a similar situation as you, check out my signature. And you can click on my username to see my older posts. I really went back and forth on the decision. The most important thing is to think how would you feel if it came back and you decided not to do surgery. I am at peace with my decision given my personal and medical situation which is different for everyone. I go next week for another scope and always the real possibility that I will be told it is back. Given my location and spread it was always likely it was coming back anyways and just a matter of when.

PS I had the great chance to email with the Dr. who is conducting the UK wait and see study, It was nice to have her actually write me back.

Yes, I agree with everything in weissoccermom post. Having a plan and a dr on board to do the proper and more extensive followup is important. I also had a biopsy with every scope.

When I was first diagnosed (rectal cancer) I had every diagnostic test available to determine if the cancer was in my lymph nodes. CT, PET, rectal ultra sound and MRI with a rectal probe. Everything came back showing NO cancer in my lymph nodes. This meant I could go directly to surgery instead of being radiated first. The pathology came back (after surgery) showing 27 out of 38 lymph nodes were affected by cancer. How could this happen I asked? The rectal ultra sound had a 90% accuracy rating!? Well, just like people under 50 aren't supposed to get rectal cancer - about 10% do. Again, I was in the 10% - again and again and again.

I completely understand where you're coming from. Who would want to go through all that if they don't have to. All I can suggest is do your research, do some very deep soul searching and make a decision - your decision. If you opt to not have the surgery, make sure you understand what the repercussions will be if you have a local recurrence. That doesn't get discussed here - simply because I don't think it usually happens with standard treatment - but you're not talking about standard treatment. So understand what your risks are, and that you can live with the outcome, either way.

I wish you the best in whichever direction you choose.

Ticktock, I also had a "complete" response after chemo and radiation. I had the APR surgery knowing I had a 15% chance that I truly had a complete response. The pathology showed some additional cancer cells. I was told by the doctors that one needs one hundred thousand cells to show up in a scan. It is indeed a very hard decision to make. Good luck.

Kathy

What you have to consider also is the shape your rctum will be in months and years from now. Radiation does an awful lot if damage - generally the radiated tissue needs to come out. But a permanent colostomy is not always necessary - in most cases a coloanal pouch can be made unless the tumour is just too low.

I have to disagree that the radiated tissue needs to come out. Most people who have an excision and undergo radiation (either in the adjuvant or neoadjuvant setting) have a better quality of life than those who have radiation and an LAR. NOW....hold on, I am NOT saying that people who have an LAR & radiation can't have a good quality of life....far from it, but....the problems that are associated with radiation generally DON'T show up when your entire rectum is intact. There IS a definite correlation between a lack of a rectum and having issues, something not seen that often in the excision patient.
Don't get me wrong, radiation can and does do damage but.....for the vast majority of people with an excision, the radiation issues aren't that big of a deal....and I suspect it is due in large part to the fact that their entire rectum is intact. As my surgeon said, even though they can reconnect a person, any pouch that is recreated isn't the same as the nature made rectum.
BTW - the rates for a total true pathological response are a little higher than 15%....they do vary but run more in the 25% range....still way too low for me to feel comfortable about not doing something more than just wait and see. At the very least, if you don't want an excision (much like a breast lumpectomy - no lymph nodes removed), you should be talking to an oncologist to see about some chemo. You indicated in your first post that you might be a stage II/III which means that there 'may' have been a suspicious node when you were diagnosed. Even the slightest hint of a 'suspicious' node would have me wanting to have all my bases covered and an onc on board with my decision. Be prepared to run into some resistance......what you are proposing isn't the 'standard of care' and just because it makes sense to you doesn't mean that it makes sense to the surgeon or onc.
I would also like to add that, depending on the location of your tumor, even an excision might not be an option. If, for example, your tumor invaded your sphincter muscles, unless that invasion was almost microscopic, you may not even be a candidate for an excision.
Lots of 'ifs' to think about but I would be going about your decision in an entirely different way and using the excision as another 'tool' before I made a hard and fast decision. Even with all of my research (and btw, I did email Dr. Habr-Gama and very nicely, she responded as did a Dr. David Medich who has worked with her on this research), I had a very difficult time getting my docs to be 'on board' with me, as it goes against the 'standard of care'.

Jaynee

I was also told I had a complete response to chemorad, but upon surgergical pathology, it was discovered I did not. My surgeon had told me about the viligant watching protocol, but I did not feel comfortable with it. In hindsight, he agreed with me, and we were both happy I pushed for the surgery.

I had stage 1 colon cancer, then 4 years later stage 3 rectal. New primary??? Local recurrence??? Who knows. I had a resection for the colon cancer with no chemo. Another resection with with entire "standard of care" for the rectal. Will it come back? Maybe....but at least this time I feel that we hit it hard....no regrets.

Good luck with your decision....

As you have not said how low your tumor was, all of the rhetoric your have read is simply conjecture. Are your doctors recommending a temporary colostomy or permanent, as you stated. If it is a permanent situation, I would ask my doctors for my best options. Chemotherapy can be beneficial, but surgical removal is the best of options, with more chemotherapy after surgery. As colon cancer is slow growing, a second opinion may be good for your mindset. In your case probably a waste of time, because you have already had radiation. Your professional team, oncologist, surgeon, and radiation oncologist are the QUALIFIED people you need to access, for your decision.
Michael

Thanks to everyone for your responses. It is reassuring that people at least seem to agree it is not an easy decision to make. I have been advised that there is only one surgical option (APR) as my tumour is simply too low to deal with any other way. This obviously means permanent colostomy which makes the decision difficult. It is especially difficult as I have had no pain or ill health apart from a few weeks during/after chemo-radiation. I feel perfectly fit and healthy now, there is 'no detectable disease' and yet I am being advised to go with permanent, life-changing surgery. Mentally, it is hard to accept.

However, as mentioned, if I felt like I had no viable alternative then I would suck it up and go with the bag. The hard part is knowing that there are hundreds of people out there (in Brazil, Holland and elsewhere) who were in my position and who chose to defer surgery and who are now disease-free and bag-free. That is not conjecture, that is fact. Those people exist. And I envy them. I want to be in that position. And I have the option of giving myself that chance - or not.

So ultimately it comes down to a question of risk. The conjecture is how risky is it to defer surgery? My surgeon simply said the risks of not having surgery are "unknown" and therefore he recommends having the operation. For him, it is simple. Patient cured, move on. But for me, the fear of 'over treatment' (ie. having the surgery without needing it) is very real and it is something that I am struggling to deal with.

I think if I was in a different situation (for example, if I had dependents, such as a wife and kids), then it would make it easier for me to accept the surgery and if I ever had doubts about whether it was necessary, I could fall back on the thought that 'I did it for them' etc. As things stand, I only have myself to think about and this makes me perhaps slightly more inclined to take a chance.

As regards the follow-up plan if I did defer surgery, this is not clear but the indications are that I would have the same adjuvant chemo as was initially planned. The surgeon/onc etc would then need to work out how to structure the 'active surveillance', what scans to have at what intervals etc. I have got the protocol from the Royal Marsden trial, so we could use that as the basis of discussion.

I am getting another opinion on Weds and then on Thurs I go back to my surgeon and he is expecting me to give him a 'binary decision' about which path I want to go down. He has said he will support me if I do choose to defer surgery but that his clear recommendation is to go ahead with it.

I am still confused, still weighing things up, still trying to work out which choice will cause me the most regrets. It feels tough to have less than a week to make such an important decision...

Thanks again to everybody for your feedback.

I personally would be in the no surgery camp. I feel I could not have a permanent bag (I had a temp ileo for 5 months). I hope more studies come out and show what the statistics show. I had a complete response both clinical and pathological. It is hard to think about how I would be with out my LAR surgery. I am glad I had the peace of mind but I didn't need it.

Talk to your health providers and make a joint decision.

You can read by my signature that I chose no surgery, but then again, I was a late stage I. At 12 weeks we used the transanal endoscopic microsurgery as a biopsy to confirm a complete pathological response as we weren't at all comfortable with what appeared to possibly be a complete clinical response. We needed to use every available tool in my surgeon's arsenal (ie., the TEM surgery as a biopsy to determine if cPR had been achieved) as there was never any question that I would have had an APR with a permanent colostomy had it not been for the complete path response. I can't really add anything more as it seems it's all been said. I wish you for peace once you've made your decision. Live every day forward, not back.

I was bothered by one thing that you said in your post, ticktock. Now, I hope your surgeon didn't imply that an APR would 'cure' you because if he did, then he shouldn't have said that. Sure, it could but then again, it might not. Even with an APR, you still run a risk of a recurrence....possibly though a lowered possibility.

Next question which I should have asked earlier. Are you 100% certain that you are seeing (both present and second opinion) surgeons who are BOARD CERTIFEID in COLORECTAL surgery? I ask because as many of us have found out, too often general surgeons are recommended to us and while they are certainly capable of doing this surgery, a surgeon who has more training, who is not only board certified in general surgery but also in colon and rectal surgery is a MUST when dealing with rectal cancer. Below is a link to verify that your surgeon is, indeed, board certified in colorectal surgery. IMO, do NOT accept a surgeon who isn't. Period!

Here is a question to ask you? Let's suppose you did an excision as a 'biopsy' to confirm your complete response. What would you do if the pathology report came back and showed microscopic cells? Would you have a plan, and if so, what would that plan be? Do you have an oncologist who you feel is on board with your decision?

You don't say how long it has been since that 6 week mark from radiation. If it was just recently, you do have some time to make this decision. I'm a huge advocate for being proactive and for having options. I personally don't feel that your situation is just an APR or a 'wait and see". I personally think you should propose to your doctor the idea of having an excision and use the information from that specimen to then make a more educated and complete decision. At least for me, knowing those results helped me be confident and resolute about my decision, knowing that for ME, it was the best decision.

http://www.abcrs.org/verify-a-physician-2/