Sometimes good news is as hard to process as bad news

had a complete response too
Hi,

That's wonderful news that the radiation worked so well!! I know it must feel like a shock that it did so well but the doc still wants to do the resection. I would most definitely pursue getting the biopsy. Two and a half years ago, I also had a complete response to radiation and my rectal tumor, which was 3 cm above the anal sphincter, completely disappeared. The follow up colonoscopy and then following biopy showed all negative for cancer- it completely got it!
My colorectal surgeon told me then that the year before she would have still insisted upon still doing the resection, but that she is now taking the approach of not treating all patients "by the book", but considering individual differences. Honestly, the idea behind still doing the resection even after a complete response to radiation and negative biopsy of the area would be to prevent recurrence and it spreading. Since I was already stage IV anyhow with cancer already in my liver and lungs, I told her I didn't understand how that would help me- couldn't I just wait to see if I had a recurrence or not and then deal with it? She agreed with me & I never did have that resection. The only surgery I've had was a liver resection- but never the rectal resection. I honestly don't know if that was the best decision or not but, honestly, it's not one that I've regretted at all. Supposedly, a recurrence in the exact spot of the initial colon or rectal tumor is supposedly not that common, but it's definitely possible for a recurrence to occur there even if you have the surgery- I personally know of two people that happened to even after they had the resection.
NOW... I didn't have the resection and I HAVE had a recurrence in the same place in my rectum. It's not large, but my last three PET/CT scans have shown a 1 x 2 cm area of PET activity/uptake- something small showed on the CT once, but not in the last two PET/CT scans. It has not gotten much worse over time, although I do currently have more rectal bleeding that seems consistent with when I was first diagnosed vs. just blood from hemorrhoids or fissures. So, I do know something is going on there. Am I going to rush to go get a rectal resection now? No! I am currently on chemo and will have another scan in a couple of months. My thoughts are- now, this is mainly based on the fact that I am still fighting tumors in my liver and lungs- if I were just a stage I or I or even a III, I probably would have already had the resection in hopes that it would help prevent a local or metastatic recurrence. If I went through and had a rectal resection right now, which would include an ileostomy bag, I believe my symptoms and things I'd be dealing with would be far more difficult to deal with than my current situation. I don't need more difficulties to deal with than I already have & I really don't believe it would benefit me much (unless my current situation got much worse in the rectum). If it did, I might be changing my tune here. I think I'd only agree personally to the surgery for myself if a tumor grew and was causing a blockage or the bowel symptoms became unbearable. Even so, I have discussed with my oncologist if the tumor started growing in the rectum, could I just get cyberknife on it instead of surgery. I was told, yes- that even though I've already had rectal radiation (and was told at the time that I had a lifetime max of pelvic area radiation and couldn't ever have more in the pelvic region), it probably WOULD be possible and I could always go consult with the cyberknife center nearby about that situation, where they would analyze my specific situation to see if I was a candidate for it for sure or not. The difference is that cyberknife is so precise that the "lifetime max of radiation" rule doesn't apply to cyberknife, at least not by what my onc told me.

I know most folks here on the board will probably tell you to be safe and go for the surgery. I don't recall your stage- if you are stage I, II, or III, I think I will tell you better be safe than sorry and go for the surgery. Even so, you might want to still look into cyberknife of the area instead of surgery. Many doctors will want to veer away from this idea just because it's not how it's traditionally been treated. Well, lots of things are changing and if everyone just went with what was traditionally done, then there'd never be any new ideas or treatments being used, right?! If you are stage IV, I'd think much harder about surgery before doing it and discuss with your doctor the WHY of why they'd want to do the surgery- is it to prevent chances of recurrence or spreading? Good, but if yours has ALREADY spread, then would this surgery really matter?
Again... I'm qualifying all I've said here by the fact that this is my own reaction to my own situation, which is still an active stage IV- not to your situation, because I don't know your situation well enough. The same colorectal surgeon who agreed to not perform the rectal resection on me after a complete radiation response DID perform a rectal resection on another of her patients (a woman I got to know by the surgeon introducing us to each other one day after she realized we lived close to each other)- anyhow, this woman was a stage III and had a complete response to the radiation as well- other than some redness that remained, which did not remain in my situation- and the surgeon did persuade this woman that it was the smart and right thing to do the surgery anyhow in her situation. So, I guess my main difference in thought on this was my stage IV situation. I actually have an appt within the next month to see this surgeon for follow up related to my rectal recurrence. I will be most interested in what she has to say now, 2-1/2 yrs later and her thoughts on surgery now vs. me waiting/watching or even to looking into cyberknife (which I imagine most surgeons would never promote).

Just some food for thought...
Lisa

(who likes provoking doctors into REALLY thinking and explaining their reasons, ideas, and treatments).

imagineit2010 said:

Thanks folks, these are
Thanks folks, these are tough decisions for everyone. Thanks for the info, Lisa. I was diagnosed with Colonic Adenocarcinoma, moderately differentiated (stage II, T3) tumor 1-2cm above the dentate line. I took my time and researched many avenues and theories but got my best information from a book called "Beating Cancer With Nutrition" writen by a doctor who was the head of nutrition for Cancer Centers of America for over ten years. I followed the basic guidelines on nutrition and how to best interupt and interfere how cancer works. The books recomendations are what led to my decision to go ahead with Chemoradiation when I was totally against it. I cross referenced statements in the book with as much outside info I could get and followed what made sense to me. I continued certain vitamins during chemo and stopped some supplements. In other words, I did "due diligence". I do not want to be a passenger on this journey, I want to be the conductor. I was not as strict as Emily (who I greatly respect) but I also followed some of her advice. I threw everything but the kitchen sink into this. Heat therapy, oxygen, nutrition, prayer, alkalynity over acidity and anything else that made sense to me. Nothing over the top, just way more than average. No one can ever know whether any of that made a difference but when I told my 14 year old daughter that (right now) the tumor was gone and she said how proud she was of me, acknowledging how hard I worked, it made a difference to ME... This middle of the road outcome gave everyone in my family encouragement. I hope maybe it will to someone else too.
This is not directed at members of this forum but I know some people continue the same lifestyle during and after treatment.I wonder sometimes when people say they are fighting cancer, what are THEY really doing. Are they actively fighting the cancer or is their body only fighting the treatment? Any thoughts????

I do sympathize with your
I do sympathize with your wish to be the conductor on your journey, but wishing can't make it so. The little cancer cells can't feel your hostility or determination, and there is no serious reason to think that nutrition, supplements, or prayer will make any difference. I don't think it makes any sense to blame cancer patients who seem not to be "fighting" when there is no rationale for thinking that fighting would help them. Maybe it would make them seem more virtuous, but cancer doesn't responds to virtue. It's not a moral disease. It does respond to radiation and chemotherapy, and that's a fact.

--Greg