The Colon Club

No because I never start chemo directly after surgery anyway because Ur body and bloods need to recover from surgery/radiation etc
I've no idea why he would not recommend it
"Maybe he knows something we don't but then he should relay this information to u!!!!!

I just feel u can then categorically say u did everything u could!!!!!!!
Otherwise "I' would always wonder if the chemo would have prevented further reacurance or matastais .
I don't want to sound negative but for me I couldn't rest with the constant worry ( I'll worry either way lol) but at least u can say u did everything in Ur power
Adele X

The only difference between God and a surgeon is that God knows he's not a surgeon.

Is the surgeon going to wait for a recurrence to put you you chemo, and then say sorry?

Annie, it's your body and your life....go get the chemo!!!

PS It was seven weeks for me from end of radiation to starting chemo, and I understand longer delay times are not uncommon. I think you are fine to start now.

prs wrote:My experience with "Watch and Wait" is only with the Habr-Gama protocol for rectal cancer patients who show a complete clinical response to chemo radiation. I believe that Dr. Habr-Gama has published strict guidelines for "complete clinical response" and that she developed these guidelines after years of experience using this technique. I know my colorectal surgeon has studied these guidelines and uses them to assess her patients. I'm not sure what exactly they are, but I know they include the fact that the tumor must have completely shrunk away, and that the color of the remaining scar tissue is very important.

It didn't take much to persuade me to go this route when my surgeon explained that if the cancer did return she could still perform "salvage" surgery that would be the same as if I'd had surgery in the first place. I do faithfully go to my three month check ups, it's been a year now and "so far, so good". I have just about recovered from the six months mop up chemo, and my life is pretty much back to normal.

Hi prs .. me again On an old post you mentioned colour of scar tissue being important in complete response ? How so .. xxx annie xxx

Determination of a clinical complete response is by visual observation only. I understand Dr Habr-Gama published photos and very complete descriptions of what the doctor needs to observe before declaring a CCR. My surgeon told me that these strict guidelines included a determinations of the color of the scar tissue, and the whiter it was the better.

prs wrote:Determination of a clinical complete response is by visual observation only. I understand Dr Habr-Gama published photos and very complete descriptions of what the doctor needs to observe before declaring a CCR. My surgeon told me that these strict guidelines included a determinations of the color of the scar tissue, and the whiter it was the better.

After TNT (chemo and then chemo/Rad on the front end), my tumor (and it was a big one, apparently) is completely gone - per an MRI and a flex sig and a digital rectal exam - but due to the fact I don’t have a distinct fat plane between rectum and uterus, mine is not considered a complete response and I am not being offered W&W. (They don’t do biopsies - at least my surgeon said she doesn’t.)

I am working on an appt w/MSK (for a final opinion / confirmation) in a few weeks. But surgery is likely (I should think definitely ) in my near future.

lakeswim wrote:

prs wrote:Determination of a clinical complete response is by visual observation only. I understand Dr Habr-Gama published photos and very complete descriptions of what the doctor needs to observe before declaring a CCR. My surgeon told me that these strict guidelines included a determinations of the color of the scar tissue, and the whiter it was the better.

After TNT (chemo and then chemo/Rad on the front end), my tumor (and it was a big one, apparently) is completely gone - per an MRI and a flex sig and a digital rectal exam - but due to the fact I don’t have a distinct fat plane between rectum and uterus, mine is not considered a complete response and I am not being offered W&W. (They don’t do biopsies - at least my surgeon said she doesn’t.)

I am working on an appt w/MSK (for a final opinion / confirmation) in a few weeks. But surgery is likely (I should think definitely ) in my near future.

Hi Lakeswim - I'm curious to know as to what you mean by not having a distinct fat plane between rectum and uterus ? I don't think I have come across any reading on this from Dr Habr-Gama's medical journals but then I might not have read everything either ! And I'm shocked at reading that they don't do biopsies ?!?!?! Why not ?!?! I would have thought another colonoscopy is warrant especially if you are a potential WW and through that process, a biopsy could be done easily. I might not be getting the full picture of your situation though and forgive me if that's the case.

I'm also surprised despite 3 sets of data (MRI, sig + digital rectal exam) and you were still not spared from surgery !! I would have thought 3 set of data is enough triangulation for a confirmation. But hey I ain't a doctor, am I ! :X Why was a sig done instead and not a typical colonoscopy though ?

Nevertheless, stay strong. Tumour gone is a good sign, it makes for a clean and less complicated surgery at the very least !

Hi Jolene, FYI a flex sig goes in plenty far enough to fully examine the rectum, so no need for a full colonoscopy. A flex sig is a mini colonoscopy for rectal cancer patients.

prs wrote:Hi Jolene, FYI a flex sig goes in plenty far enough to fully examine the rectum, so no need for a full colonoscopy. A flex sig is a mini colonoscopy for rectal cancer patients.

Thanks for the clarification ! Got it ! Wonder why my surgeon mentioned that he wil be doing another colonoscopy in due time if I receive a complete clinical response ?

Annie50 wrote:

mozart13 wrote:

I'm so confused Mozart
I had CCR at top hospital The Christie with top surgeon and onco looking after me and MDT team he took 8 biopsies under anaesthetic to check and then no cancer cells so said W &W but no extra chemo as he says why when no evidence .. he did say I could speak to onco but seems so confusing ? Helllp ... xxx Annie xxx

sorry Annie for late response, I don't come much here these days.
It's nice that you are CCR, that's actually great. All this guys have their own opinions just like us patients, but at the end it's our skin on the line.
One has to be own advocate here, and look what is in our own best interest.

If you go through my posts on these forum, you'll find a lot's of useful links, with very informative data.
My surgeon that is watching me said that he would do the same as I did.

When I mentioned to my onco that some people that didn't have extra chemo after initial CCR, had to have surgery, basically experienced come back of the tumor, the answer was that one should continue with therapy that already showed good response.

8 rounds of folfox is recommended:
https://www.ncbi.nlm.nih.gov/pmc/articl ... Cancer.pdf

As for CCR , there are very strict rules what is considered CCR and what not, there are some good pictures on this link:
http://www.iwwd.org/wp-content/uploads/ ... 015-NF.pdf

It's not an easy decision, I went through that process as well, initial surgeon and radiologist were pushing for surgery regardless of response, the surgeon that is following me up now thought that 4 folfox is enough, maybe was right. My onco when I went to talk about skipping surgery and doing only folfox, after initial chemo/rad, and mentioned it's risky, said that every thing is risky. My onco told me that will go for 11 folfox, but will push at least 8, must come from that previous study.
But I tell you something, I don't regret going this way regardless of side effects of folfox.

I started folfox almost 2 1/2 months after finished initial chemo/rad, gave me enough time to recuperate , fix my hemoglobin, dropped little after chemo/rad, also got herpes vaccine, went to see dentist to fix any cavity if any. As for Herpes vaccine , my family md told me to get it, plus there is some study going on about herpes vaccine extract carrying chemo to the targeted cells.

Distant metastasis and small microcells that might be present and floating is what you actually targeting with chemo, are they there or not , who knows ?

Wish you all the best, and smile, you got good reason for it !!!

Jolene wrote:
Wonder why my surgeon mentioned that he wil be doing another colonoscopy in due time if I receive a complete clinical response ?

Hi Jolene, first one is to see what response you had, second one , in my case 2 months after to see progress, if still CCR, peak of the radiation is about 2 1/2 months after chemo/rad is finished, radiation works for years, was told by my surgeon.
I also had MRI first week right after and 2 months after.

Good luck to you!

As I mentioned earlier, I had chemo first (which “significantly” reduced tumor - which says something about chemo!!) and then chemo/Rad. My (described as “large”) tumor is now gone yet due to the indistinct fat plane issue, my response is not considered complete.

Yet, my team is allowing me another MRI - which will be around 12 weeks from end of chemo/Rad - to see if the extra time has made any difference in my fat plane. (They don’t think it will - but a girl can hope.)

That's great lakeswim lady, the approach you had seem to be the choice with better results, first chemo than chemo/rad.
12 weeks is good period to give therapy to work, radiation works for years, when combined with chemo, it's like turbo, so I was told.

Good luck to you, and keep us updated!!!

Hi.
I am posting this question here to this group (the watch & wait group) as they may have noticed this more due to the fact they have not had surgery. I am 10-12 weeks out of radiation and I felt GREAT (more energy than I had in years and my body felt good) until 2 weeks ago. Now I have aches in my hips and thighs. It feels like I either had a long run 2 days ago, did lots of squats, or I'm about to get the flu. I assume this is from the radiation? Why is it happening now? Will it continue forever? I'm also tired often again - like I used to be. I get another MRI next week and then likely surgery but this "new" achiness and fatigue is getting me down. I was really enjoying being active and having energy - esp with what last year was like and what I will have ahead of me. I'm hoping this achiness isn't another permanent side effect from treatment.

Also, my recent flex sig noted some "stenosis" in my rectum. I've also had some bowel changes recently (more urgency and. I'm curious if the W&W group of people see any changes in their bowels due to radiation or whether things are pretty good. Obv., this doesn't matter if I have surgery, but I am curious nonetheless due to recent bowel changes.
Thanks.

It is not uncommon by any means to have the hip/upper thigh achiness. You may find that getting up from a sitting position hurts the most. Hurt isn't exactly the right word....it's more like a stiffness. I still experience it and I'm 12.5 years out from radiation. I was told that patients who receive pelvic radiation have a higher incidence of needing a hip replacement (most often right hand side...presumably because most people are right side dominant?). PLEASE get in and get a bone density test to make sure that you haven't had bone issues from the radiation.

Radiation is the gift that keeps on giving. While we know that the radiation keeps working on the tumor area (which is good), it also keeps giving us some side effects. Just take it easy....stretch out your hips, etc. and get that bone density test to just make sure nothing is amiss (not talking mets....just talking potential bone loss).

Thanks for info and suggestion.

My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!

So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.