The Colon Club

Annie50 wrote:

susie0915 wrote:This is my question about wait and watch. I had a sigmoid and pet scan after radio/chemo. The pet scan showed no cancer and the surgeon said all that was left was scar tissue after the sigmoid. I did have surgery and the pathology did show minimal residual cancer cells in the area where tumor was, but clear margins and 0/24 lymph nodes. So if no biopsies were done pet scan was NED, and sigmoid showed only scar tissue I definitely would've had a recurrence if was offered wait and watch. All the was offered to me was the possibility of no chemo after surgery depending on pathology.

Hi Susie
I don't really quite get it but I wlll find out ! I think the medical theory they are working to with watch and wait is something to do with if you have had a clinical complete response verified by biopsy as well as sigmoidoscopy then they assume that any lymph nodes will also have had a complete response so cancer cells gone. My questions is that some people seem to have had extra chemo after complete response as back up / belt and braces and some don't ? So I don't know why some do and some don't ?.. ! My consultant who is at The Christie which is a specialist centre for cancer and watch and wait took several biopsies of the area and around the area and all were clear for cancer cells or even dysplasia .. he said they don't allow watch and wait unless biopsies come back clear with no residual as well as looking via sigmoidoscopy under anaesthetic.. it's confusing!! Xx Annie xxx

Having the biopsy I think is critical. I know it is not guaranteed cancer cells did not get in bloodstream, but at least no cells are detected in original tumor area. I know I was shocked when my surgeon told me all that was left was scar tissue after the sigmoidoscopy and the pet scan detected no cancer. But obviously if biopsies would've been done I still would've needed surgery. I was thrilled with the chance of no chemo after surgery. But I did 6 rounds and was doable. I am not sure why some doctors don't recommend more chemo since cells could get into bloodstream, that was the reasoning my oncologist gave me after surgery even though I was considered NED.

For what it's worth Anne, I'd ask for chemo if it was me, as an extra incase of any micromatastiss,the new protocol now is only 3 months ( 6 session) so very doable, without any long term effects" so far" I did 2 5fu on its own (easy on its own )
And 6 folfox ( doable)
I don't envy Ur headspace ATM , I'm sure it's a head melt, but it's still amazing I've had a complete response,,,

I'm just waiting my date in February,, TBH, reading Mike NH progress, I'm dreading it, but worst case scenario,, I'll have to replace the bag

Fingers crossed, that won't be necessary!!!
ADELE X

Annie50 wrote:

susie0915 wrote:This is my question about wait and watch. I had a sigmoid and pet scan after radio/chemo. The pet scan showed no cancer and the surgeon said all that was left was scar tissue after the sigmoid. I did have surgery and the pathology did show minimal residual cancer cells in the area where tumor was, but clear margins and 0/24 lymph nodes. So if no biopsies were done pet scan was NED, and sigmoid showed only scar tissue I definitely would've had a recurrence if was offered wait and watch. All the was offered to me was the possibility of no chemo after surgery depending on pathology.

Annie xxx

Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan

Caat55, trying to grasp what your last post means. Are you saying you can have clear scans and biopsies and yet still have cancer? I just had a resection and pathology came back clean (10 lymph nodes and margins all clear; no residual). However another poster said her scans and path were all clear, and yet sonogram found a tumor. Sorry this is all new to me.

MCK wrote:Caat55, trying to grasp what your last post means. Are you saying you can have clear scans and biopsies and yet still have cancer? I just had a resection and pathology came back clean (10 lymph nodes and margins all clear; no residual). However another poster said her scans and path were all clear, and yet sonogram found a tumor. Sorry this is all new to me.

Hi I had a complete clinical response and the surgeon took biopsies to check and all were clear. I think it is a risk but as you have just pointed out there is a risk whatever .. tough decisions ? .. I think my surgeon wouldn't let you go watch and wait without biopsies .. and just rely on scans.. so many views !

Caat55 wrote:

Annie50 wrote:

susie0915 wrote:This is my question about wait and watch. I had a sigmoid and pet scan after radio/chemo. The pet scan showed no cancer and the surgeon said all that was left was scar tissue after the sigmoid. I did have surgery and the pathology did show minimal residual cancer cells in the area where tumor was, but clear margins and 0/24 lymph nodes. So if no biopsies were done pet scan was NED, and sigmoid showed only scar tissue I definitely would've had a recurrence if was offered wait and watch. All the was offered to me was the possibility of no chemo after surgery depending on pathology.

Annie xxx

Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan

Hi Susan
Do they normally offer chemo if all lymphs clear ? Are you in US ? Xxx Annie xxx

When my tumor was removed, they staged me as 2a, I think? None of the 18 lymphnodes were involved. One oncologist wanted to start me immediately on 6 months of chemo, another suggested a watch and wait approach.

However, we'd known since before my bowel resection there was a spot on my liver, but since my nodes were clear it was assumed it was something benign but still needed to be ruled out as a met.

We were going with the wait and watch before I got upgraded to stage 4!

Annie xxx[/quote]

Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan[/quote]

Hi Susan
Do they normally offer chemo if all lymphs clear ? Are you in US ? Xxx Annie xxx[/quote]

My oncologist said he felt surgery and chemo were best options. He has had patients who have had cancer return and never know why. I decided to give it everything they had in arsenal a go.
S

AmyG wrote:When my tumor was removed, they staged me as 2a, I think? None of the 18 lymphnodes were involved. One oncologist wanted to start me immediately on 6 months of chemo, another suggested a watch and wait approach.

However, we'd known since before my bowel resection there was a spot on my liver, but since my nodes were clear it was assumed it was something benign but still needed to be ruled out as a met.

We were going with the wait and watch before I got upgraded to stage 4!

Amy,

I'm in disbelief of the situation you are in. My heart goes out to you. Such a tough road. You sound like a very strong person! I am curious....I had a spot on my liver but they did a biopsy and it was "nothing." I assume they can't check your post because of the baby?

I will find out Friday if I have the WnW option.

Hi how are you getting on ? Xxx Annie xxx

Eleda wrote:For what it's worth Anne, I'd ask for chemo if it was me, as an extra incase of any micromatastiss,the new protocol now is only 3 months ( 6 session) so very doable, without any long term effects" so far" I did 2 5fu on its own (easy on its own )
And 6 folfox ( doable)
I don't envy Ur headspace ATM , I'm sure it's a head melt, but it's still amazing I've had a complete response,,,

I'm just waiting my date in February,, TBH, reading Mike NH progress, I'm dreading it, but worst case scenario,, I'll have to replace the bag

Fingers crossed, that won't be necessary!!!
ADELE X

Hi Adele
How are you getting on ? Xxx Annie xxx

Caat55 wrote:Annie xxx

Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan[/quote]

Hi Susan
Do they normally offer chemo if all lymphs clear ? Are you in US ? Xxx Annie xxx[/quote]

My oncologist said he felt surgery and chemo were best options. He has had patients who have had cancer return and never know why. I decided to give it everything they had in arsenal a go.
S[/quote]
I am not sure if chemo is always offered with clear lymph nodes. Stage 2 is kind of a gray area but I think with rectal vs colon cancer clean up chemo is recommended more often. My oncologist said that even if my odds of recurrence is low she could not guarantee cancer cells did not get into the blood stream. So I went ahead and did the chemo. It's a tough decision.

And yes I am in the US

Hi ANNE,
Have you made a decision on Ur treatment yet??
How r u doing???

ADELE X

I've been thinking about Annie too and wondering..... I hope she updates us!