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Sometimes good news is as hard to process as bad news

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

So I met with the new surgeon yesterday to discuss my APR. It's been a month since I finished six weeks of chemoradiation. I feel great with no lasting side effects I am having almost perfect bowel movements and my blood counts are stabalizing for the first time in nine months. The surgeon did a physical exam of the area then used an Anoscope to view the area. (being 1cm from the dentate line you could practically see it with a flashlight)..LOL.. I heard him say to his assistant and internist, "this is where it's supposed to be, I guess where that redness is." He then informed me there is no sign of the tumor. It's considered a Complete response. Wow, really? BUT, of course they still want to go ahead with the APR. Geez I thought I caught a break. I busted my a$$ for eight months getting healthy, dropping FIFTY FIVE pounds, cutting out all foods even remotely linked to health issues, taking vitamins and supplements hand picked for fighting cancer, eating and drinking and juicing antioxidants daily, including praying and positive thinking, I did EVERYTHING I could to be an ACTIVE part in my treatment, I did the six weeks of "western medical treatment" (so easily I was worried it wasn't working) and acomplished EXACTLY what I dreamed was possible. And they STILL want to cut me up just to "play it safe". The doc said they don't have statistics for my scenario. He said I'm in a unique situation and they rarely see this result from just chemoradiation. I thought to myself, ARE YOU CRAZY??? I did EVERYTHING I could to achieve this. I DID NOT do JUST chemoradiation.
So,I'm weighing my options....
I'm looking at possibly getting a deep tissue biopsy of the area to check for micro particles then going into a preventative mindset/lifestyle to keep it from doing what it wants to do.
I'm very happy but reserved and a bit shocked at what is really possible in this world.
I'll keep you posted

AnneCan
Posts: 3692
Joined: Oct 2009

Whatever you + your doctor ultimately decide to do, this is GREAT NEWS! Some people have no or little response after chemo/radiation. COngratulations on doing the extra things which likely increased your success. Thanks for letting us know these great results!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

l suppose is the most complete thing you can do after Surgery isn't ?don't afraid me, lm finishing my chemo, and after that l will start with radiation.the radiologist is quite positive about the result he can achieve on my retroperitoneales nodes, but l see you skeptics with results of radio?Any bad experiences with radiation?
Hugs!

AnneCan
Posts: 3692
Joined: Oct 2009

I had radiation + had a good response to it: I think most people do. What I was trying to to say to Imagineit is, he had an unbelievable response + I am so happy for him. I am going to edit my earlier post to make sure that is clear. I have not had surgery for my tumours Pepe, but I had 5 weeks of radiation/chemo (with good results), a break + have been on chemo ever since. Without chemo + radiation I would likely not be here. My earlier post isn't allowing me to edit. I want to say I am so happy for Imagineit + his complete response; that is unusual to my knowledge. Usually there is some shrinkage but not 100%!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Superb regression congratulations imagineit!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Adenocarcinoma or squamous cell?

Mine was squamous, 2 inch tumor in the rectum, and it is HIGHLY radiosensitive (read complete response from chemo/rads for me...).

It's a tough call, but you need to consider how much you can live with. I picked going ahead with the surgery (at that point, my surgeon couldn't say difinatively that it would help my survival) because I know myself well....would always think "What's this now" and panic...

BUT it was hard work for 2 years training my new plumbing (J-pouch procedure...rectum and sig colon removed, pouch fashioned from descending colon)...no regrets....but that is my personal choice...

Gather all the info you can, and then go into 'stare-at-your-belly-button' mode to think what you are feeling, both ways...ask to speak with another doctor, if possible, as well...

Hugs, Kathi

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

to me?
hugs

gfpiv
Posts: 60
Joined: Apr 2010

Congrats on your willpower in keeping up your anti-cancer regimen. If I were you, I would probably have a resection, or at least a biopsy. I was dx'd stage IV CC in January. After 7 months of chemo, they did a scope on my colon primary, and at the time they said it appeared to be a "complete response". All we could see was a slightly darker red splotch on the smooth colon wall where the tumor had been. However, I just had the colon resected 3 weeks ago (along with HAI pump installation), and it turns out from the biopsy that there were indeed some viable cancer cells still there. So I guess it's tough to be sure that it's all gone unless they hack it out.

z's picture
z
Posts: 1414
Joined: May 2009

Hi, Was the tumor north or south of the dentae line? And very good news! Good reason for celebrating. I know I would get a second opinion, as I have with all my tx. I hope everything turns out the best for you in your decision of what to do. Lori

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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). :)

dschreffler's picture
dschreffler
Posts: 58
Joined: Apr 2010

I was in same boat you are - weighing options for surgery given my "remarkable" response. I spent a lot of time second guessing, and getting 2nd/3rd options to counter my initial surgeons recommendation for TAE and no having APR nor LAR. Hopkins/MSCC surgeons recommended "standard of care" APR or LAR. I chose the TAE plus 12 rounds of post surgery FOLFOX as recommended by local Oncc/surgeon. In my case, the post TAE pathology came back clean, else I would have had to go with APR.

See my profile for details, as all different.

Not sure if you are on colonclub forum, there has been discussions on APR, LAR vs TAE as surgical options.

These are some long threads, full of passion and angst, but worth the read.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11804
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=13877

Good luck in your decision. Yo seem to have a great attitude that will make whatever you go with will work for you.

Dan

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

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????

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

That is so awesome, I am also doing a lot of supplements and getting as close to a vegan diet as I can get. I drink supreme greens and reds. I drink Aloe. And I get exercise, even if I have to dance with my grand daughter for 45 minutes, I get it in there.

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I dont understand if you had a complete respond to rad and chemo Why would your surgeon still want to do an APR? What was the point? I can see a trans anal excision and check margins but it doesn't make any sense to do an APR now????Check with another doctor!

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Hey, did you have your surgery? How did it go?
They want to be safe so the safest thing is to cut everything out. Not a sure thing but what is? I'm weighing all options.
Thanks, Chris

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

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

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Greg, thanks for your interest. First, I don't wish anything. I am making the decisions in my treatment so how can I not be the conductor? I am certainly not just along for the ride. I've seen where that can get people and I'm not interested in going there yet. So you think your mental state has nothing to do with your health? You should check the medical facts. I think EVERYONE on here and EVERY doctor will tell you you attitude may not cure you but it can certainly make you worse. I'm not sure where you get your information from but radiation, chemo and surgery didn't seem to fix all the members we've lost on here. It is a (pardon the pun) crap shoot either way. You can do everything possible and cut out every organ you have and it can still spread like wildfire. Do you really believe that nothing but chemo, rad and surgery make a difference? As long as I've been reading these posts every single person that has passed has done EVERY recomended treatment and where are they now? Do you think the doctors have some magic bullet for cancer only certain people get? Sure, some people get just surgery and are fine. Some people do just chemo and radiation and are fine and some do any combination of them and have as good a chance. But the opposite is just as true. I'm also not BLAMING anyone for their methods I'm asking people HOW they are fighting cancer. It is a legitimate question. Some people only do what the doctors and hospitals provide and others do more. Do you really believe this disease is completely out of your hands? There is not a single ailment known to man that is COMPLETELY out of our control. That is what I've been told, that is what I've read and that is what I believe.
It must be scary to live in such a fantastic world as ours and feel so helpless.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

If you choose no resection, and it comes back, how will you be then? If you think you'd be ok and not beating yourself up, then that is one thing. If you will be angry that you didn't go ahead with it, and beat yourself forever afterwards, that is different.

Just because everything looks good when scanning after treatment doesn't mean you don't still have cells hiding out, waiting to come back. It happened to me. Clean scan after 5TX in Dec 09. Clean scan in May10 after completing FOLFOX. But my CEA was rising already in August, and 3 lymph nodes positive. My primary site which was resected remains clear. I'm all for cutting out anything that had cancer cells. Right now I'm sending my records to Duke for a second opinion because I want my nodes out. We think two of them are the same two that lit up last fall...

Keep informing yourself and make the decision you can live with in the long run, no matter which way it turns out. Best of luck to you - I know it is a tough decision.

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Hi Kathryn- Y'know, I don't believe in regrets. I think I would be fine no matter what happens because I am making my own decisions. I would feel worse if I only did what the docs wanted and THEN it came back. I would have a hard time with that. There are no gaurantees either way so I personaly have to feel good about my decision. I put off the chemoradiation until I was comfortable with it. I waited SEVEN months after I was diagnosed to start THEIR treatment and look how that worked out. Everyone said I was crazy for waiting but I didn't feel I was healthy enough to start. I waited and became a much healthier person and I believe it payed off.
Well thanks for your input. I'll keep you informed.
Chris

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I will be having my TAE on Wednesday the 22nd and my surgeon a very wise man said we haven't burned any bridges by doing the transanal execsion and if the margins are good end of story maybe chemo but if they are not good we will be having a further discussion on my options. This seems like the most reasonable thinking, why throw out the baby with the bath water. I did not get a complete response from chemo/rad my tumor shrunk to a pea size but I will take that and do one step at a time. As far as reoccurrance it can happen with either surgeries, I'm totally ok with my decsion. I'll let you know how about results. Laura

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Back home from surgery I will know results from path in 10 days.I hate waiting. Laura

AnneCan
Posts: 3692
Joined: Oct 2009

Glad to hear you are back home; I hope the path results are good!

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

That's great, I was wonderin..... What will results from pathology tell you? Stuff like clear margins and that? Boy, 10 days sucks... Here's hoping for the best....
Thanks, Chris

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Report will say whether, clear margins, and or any cancer cells present at all, correct stage t2 or t3 and type of differitation (?)spelling sorry. Surgeron said the scar was rather large I don't know why but maybe that is a good thing got more of cancer during radition and chemo. No point in guessing will just have to wait. Surgeon said they chop it up alot and look and it from every angle and do stain etc to find cancer cells I would rather they be careful and wait the ten days. Have you decided anything yet? Still think you should have TAE before proceeding further. Can always do APr later. anyway Later Laura

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