The Colon Club

lakeswim wrote:

Jolene wrote:Thank you so much for sharing about this study. I will have to ask my MSK surgeon about this study when I see him in May. Or before. Funny, given he told me when I saw him in February that salvage surgery is "typically" the same as original surgery.

hi Lakeswim - just 3 months ago, my doc said the same about salvage surgery basing on Dr Angelita's paper. He had even performed salvage surgery himself too. 3 months later which was just a few days ago, he changed his opinion based on the latest MSK paper which he just came across as it was just published online only in Jan 2019.

To be fair, it wasn't really his opinions. He was simply laying out facts for me based on his knowledge in the field and that these facts changes each time someone publishes something new which contradicts precedent research.

I don't have access to the full online version except based on what I read from the site link but he mentioned that there are variables at play as the MSK sample excluded those who had access to MRI and PET scans. So if one had access to both MRI and also PET scans, it wouldn't be a fair comparison to compare oneself with the MSK study. Not sure where he got this specific data from, he probably had some special access to the data of the research not available to layman as yet ? Disclaimer: This is simply what I have heard from him, I have not had the chance to see and read the paper myself yet.

He had however repeatedly reminded me that going down the WW with him is not exactly mainstream and we will be walking in the dark with contradicting research arising should I decide to embark on WW in due time.

lakeswim wrote:

nifty624 wrote:Lastly, I have to go back on this thread and revisit what you guys are discussing (this "LE" - I assume it's local excision?). I clearly missed what this is. It sounds intriguing - like a compromise between LAR surgery and W&W? My people wouldn't even do a biopsy so I am interested....

I've been wondering lately if anyone on the board ever did W&W and then couldn't stand the anxiety and then had surgery? Or anyone who had salvage surgery - and how it went? If anyone has seen this, please let me know.

Tough decisions. Sending my best to those making them now and those who have made them and are watching, waiting, and hoping....

Lakeswim - try google scholar and key in the terms you are looking for and in this case LE = Local excision. Not all research papers may be accessible but you might find some freely available ones

https://scholar.google.com.sg/scholar?h ... cancer&oq=

By the way, why is your team not interested to do a biopsy ?

Hi all - The wait is over !

My final test (biopsy) for being a WW candidate came back all negative ! I am officially declared as complete response (for now) and moving onto a WW programme ! I get another chance at fighting the darn thing and preserving my rectum ! Thank you to all on this board and forum for the emotional and virtual support !

Rectal examinations every 2 months + MRI and scope every 4 months for the next 2 years !

I had a discussion with my oncologist and he posted the question of whether chemotherapy is going to do a WW patient any good. According to him, there are currently no data or research to demonstrate chemotherapy as a protocol for WW patients. Chemotherapy for colorectal patients has traditionally been done on the basis that the original tumour site has been removed and hence the objective of proceeding with chemo is to stop any lurking spreads. For WW patients, the original tumour site remains and in the unfortunate event it becomes active and starts spreading microscopic cells, chemo serves only to suppress these cells and does not "kills off" the original tumor sites. Say if the tumour site does become active again, the moment chemo stops is when the cells will start spreading again, then what use is that going to do for a ww patient to start chemo ?

Hence, a WW patient who wants to proceed with chemo must proceed with the right mindset that it is on the basis that the tumour site has been cured and there are no longer any cancer cells spreading, hence chemo is done to get rid of any spreads that may have happened way before the tumour was even diagnosed or discovered. I get the feeling that the oncologist is trying to lay out a disclaimer i.e - happy to proceed chemo for you, but don't question the chemo effectiveness should WW fail and you end up in a stage worse off where we first started. He suggested 6 cycles of xelox for me.

My onc has never been pro-ww from day 1 which I don't mind as I think it's important to have an opposing view against my colorectal doctor who is very keen on WW. Reason being because the oncologist has a number of patients as ww candidate who had the cancer recurred at a worse stage than they first started out despite proceeding with chemo and he said it pains him to see them going through it all over again. He still thinks that going for surgery is the best solution but will respect and support my final decision.

I noticed a number of you have gone on to do chemotherapy after being declared a WW candidate and I'm curious as to what have been advised by your doctors and how you made that final decision ?

That’s great and I wish I could have done that! I didn’t have a complete response and the few times I was off chemo I had explosive growth in a few months, here is hoping you NEVER have to touch that toxic poison.

My oncologist was of the totally opposite opinion than yours. Now, I had a full thickness excision which is by far better than a regular biopsy but falls short of the LAR. My pathology report from that came back as totally NEGATIVE. Again, my situation was different but let me fill you in on the story. My original 'biopsy' of the area of the tumor came back as negative LONG before my excision. At the time that I was diagnosed, there was no W&W protocol....instead it was chemoradiation, full thickness excision and then more chemo. When I had difficulty finding a surgeon to do the excision (I thought I had one...he backed out at the last minute), my oncologist was of the belief that even though everything came back negative on the biopsy, there was significant research that said that there still could be lurking cells deeper in the rectal wall (a biopsy doesn't tell you that unless you do a full thickness excision) that can't be detected by an MRI or even a PET scan. His attitude was simple....IF there was even one microscopic cell lurking there, why not do chemo to kill that one (or more) cells off BEFORE they had a chance to regroup and move on to set up a new 'residence' somewhere else?

MY opinion is that a simple biopsy of the tumor site isn't enough at all. Yes, it tells the patient and the doctor whether or not there are cells lurking in the top layer or so, but how does one know that there aren't live cancerous cells further down in the rectal wall? One thing I learned from my experience was this. Doctors....oncologists, surgeons and even to some extent, radiation oncologists....are protecting themselves and basing their decisions on the 'standard of care'. That's what they are trained in and they don't tend to adapt to change easily without a LOT of information, trials, and PROOF that something other than the traditional 'standard of care' might work. So while I was trying to find a surgeon to do the excision (as I said, I thought I had one to do it), my oncologist was very definitive about TAKE THE CHEMO. He didn't recommend oxi...although I insisted....big mistake for me as I had a horrible reaction.

I had a friend on this board who, like me, did chemoradiation (stage II), seemed to have a complete clinical response to chemo, had the excision and that biopsy showed some microscopic live cancer cells. Her oncologist wanted to do more chemo but the surgeon said it wasn't necessary and pushed at the tumor board not to do any. We will never know what might have been had Terry had chemo. She passed away, almost 5 years later due to spread of the disease. We often talked about the 'what ifs' but eventually let it go....what good did it do to dwell on something that never happened? Just as most members tell others who are wondering if they should do chemo...especially after a positive surgical pathology report.....and we tell them to think about how they would feel IF the cancer came back and they didn't do everything to try to eradicate it....the same question needs to be posed to you. Chemo isn't a walk in the park but neither is having to battle a recurrence. Why not do 6 months of chemo to give you the peace of mind to know that you did everything you could to combat the disease?

In my case, even though I did the chemo before the surgery (because I couldn't find a surgeon), I was prepared and willing to do more chemo after the surgery...WITH my oncologist's blessing....had the pathology report from the excision (mine was able to get a few nodes in the sample) come back with even microscopic live cells.

Do what YOU feel is best for YOU. My opinion....if the onc is willing to give you chemo....TAKE IT! Give yourself all the benefits you can.

My opinion do the chemo. I had CCR and didn't do the chemo and it came back six months later in the same spot. I wish I did the Chemo, but honestly don't know if it would of done anything, but based on some others on this thread they did the chemo and it didn't come back.

Hi Jolene!

I am thrilled to hear your good news about the complete response and great biopsy results.

I agree with weissoccermom - I believe there is huge value in doing mop up chemo. I don't think of it as a strategy to prevent local recurrence (though it may help, since chemo works systemically) but the real purpose I thought (and others have mentioned this too) is to kill off any cells which may have migrated away from the original site and pose a threat of metastases. Local surgery and even LAR won't eliminate the possibility of metastases completely and I've been reading studies which show little difference between the two approaches in the rate of metastases - though LAR obviously has a lower rate of local recurrence (due to total removal of the localilty!).

I'm having the local excision with full thickness (TAMIS) procedure on Friday and if all goes well with my recovery, then I will be starting follow up chemotherapy toward the end of April or first of May.

It's no fun anticipating more chemo-- and more intense chemo, too, with a port and oxi in addition to Xeloda - but like weissoccermom, I want to know that I did all I could regarding metastases while also trying to find that balance of preserving my rectum and organ function. This is a balance I can live with and I am actually eager to get it started- sooner started, soonest finished with it!

BTW, weissoccermom, my follow-up chemo will be approximately 4 months, instead of six. This was the plan no matter if I was doing the LAR or the LE. I have been doing some reading and apparently the shorter schedule of chemo seems to reduce the adverse side effects (especially the cumulative effect of the oxi) with no appreciable loss of efficacy. I'm hopeful that I won't have too much trouble with neuropathy - I'm a gardener and a knitter and a writer - so all of those require my fingers - which I am going to be firmly crossing!

Jolene, my very experienced colorectal surgeon strongly advised me to take a course of mop-up chemo. I began six months of XELOX almost immediately after my cCR.

If you read back thru this thread you will find we have had two or three posters who went on W&W and had a recurrence. All of them did not do the mop-up chemo. IIRC they didn't do the chemo because their Drs failed to advise them to do it.

The six months I spent on XELOX were utterly miserable, at one point I became a fire hose at both ends until my oncologist reduced the dosage. However I do think there is plenty of evidence pointing out the value of mop-up chemo, and I'm very glad I stuck thru it for those six months.

Hi Weiss - Thank you for sharing your story in detail once again. It definitely made sense to go through with the chemo. Appreciate you sharing your onc advise !

I did felt a strong hunch that my onc is trying to protect his own arse and that whatever decision I make will be mine and mine alone, and not to drag him into the ditch should it turns out otherwise as he had already done the "I told you so" lecture !

His attitude was simple....IF there was even one microscopic cell lurking there, why not do chemo to kill that one (or more) cells off BEFORE they had a chance to regroup and move on to set up a new 'residence' somewhere else?

Thank you for this. I thought the same too.

That's what they are trained in and they don't tend to adapt to change easily without a LOT of information, trials, and PROOF that something other than the traditional 'standard of care' might work. So while I was trying to find a surgeon to do the excision (as I said, I thought I had one to do it), my oncologist was very definitive about TAKE THE CHEMO. He didn't recommend oxi...although I insisted....big mistake for me as I had a horrible reaction.

Why didn't he recommend oxi and what was his recommendation instead ?

I had a friend on this board who, like me, did chemoradiation (stage II), seemed to have a complete clinical response to chemo, had the excision and that biopsy showed some microscopic live cancer cells. Her oncologist wanted to do more chemo but the surgeon said it wasn't necessary and pushed at the tumor board not to do any. We will never know what might have been had Terry had chemo. She passed away, almost 5 years later due to spread of the disease.

I had come across your other posts mentioning this friend. I'm curious about how the spread was discovered ? If she was placed on a WW tight surveillance protocol, didn't the checks in between caught it any earlier ?

and we tell them to think about how they would feel IF the cancer came back and they didn't do everything to try to eradicate it....the same question needs to be posed to you. Chemo isn't a walk in the park but neither is having to battle a recurrence.

Why not do 6 months of chemo to give you the peace of mind to know that you did everything you could to combat the disease?

Thanks - I needed to hear this !

The opportunity to be placed on a WW programme is akin to a ticket for the lottery and I should really do everything I can and not leave anything, anything at all to chance !

Rikimaroo wrote:My opinion do the chemo. I had CCR and didn't do the chemo and it came back six months later in the same spot. I wish I did the Chemo, but honestly don't know if it would of done anything, but based on some others on this thread they did the chemo and it didn't come back.

Thanks Rikimaroo for the advise ! I will be proceeding with the chemo. I'm sorry to hear that it returned for you !

I assumed you were placed under a tight surveillance by the docs and how often were you required to return for the checks ? Was it discovered during those in between checks ?

Hi nifty - all the best to your local excision. I'm interested to find out how you get on ! After digesting all the information at the docs yesterday, I will definitely be proceeding with chemo !

My onc said he is not recommending me a port unless they have problems finding good veins or I have to be on long term chemo which to him 6 cycles (abt 4 months) isn't long term at all ! Is that normal ? My mum had colorectal cancer a few years back and the hospital she was at gave her an option upfront even though she was on about 8 cycles. Would be great it someone reading this can advise ?

prs wrote:Jolene, my very experienced colorectal surgeon strongly advised me to take a course of mop-up chemo. I began six months of XELOX almost immediately after my cCR.

If you read back thru this thread you will find we have had two or three posters who went on W&W and had a recurrence. All of them did not do the mop-up chemo. IIRC they didn't do the chemo because their Drs failed to advise them to do it.

The six months I spent on XELOX were utterly miserable, at one point I became a fire hose at both ends until my oncologist reduced the dosage. However I do think there is plenty of evidence pointing out the value of mop-up chemo, and I'm very glad I stuck thru it for those six months.

Hi PRS - Thanks for sharing ! My colorectal doc became almost hands-off the moment all my tests and scans came out negative. He said that chemo has not been a part of the WW protocol that he is following and hence will not have an opinion on it and that it's best I speak to my oncologist should I want to proceed. I thought that was a bit cold and abrupt if I have to be honest. I couldn't quite get anything out from him on the topic of chemo. So I'm glad to read that you had a surgeon who is pro mop-up chemo. How many cycles were you recommended ? I was advised to go for 6 cycles ( 4 months), so I wonder what's the reason for you going through 6 months instead of 4 ?

I will go read up this thread again from the beginning. I only got to know about mop-up chemo through this board !! Thank god !!

Having witnessed a mum who went through chemo and it's effects a few years back, I am dreading chemo myself but I think it's way better than loosing my rectum now that I actually have a chance at keeping it ! Do you have any access or links/titles of those evidence pointing out the value of mop-up chemo ? I would be very interested to take a look at it !

Hi Jolene,
Here are the answers (I can't see your post so hope that I remember all of your questions)

1. My doctor didn't recommend oxi for me as a stage II patient. The studies don't necessarily show that oxi for the stage II patient (with no negative prognostic factors) shows a significant increase over just the 5FU (or Xeloda) by itself. In addition, oxi carries risk of long term or permanent neuropathy. I didn't want to listen to the onc (wish I had) and tried the oxi. I had a HORRIBLE reaction the first time and it was stopped and I just proceeded with Xeloda. His initial recommendation was just Xeloda.

2. Terry's cancer recurrence was caught relatively early and they thought they got it. It showed up in her lungs but remember that even one met can easily mean that there are more. I honestly don't remember Terry's surveillance schedule but I don't recall that it was much different from mine. Once cancer has a chance to spread....its more difficult (not impossible) to kill it all off.

There are NO guarantees with cancer, with the surgery or even with chemo. We had another member on the board who was initially staged as a stage II and he may/may not have always had lung mets that perhaps were too small to detect for some time. He had the LAR surgery, did chemo, exercised, ate well.....and still the cancer returned. There is NEVER any guarantee that you won't have a recurrence even if you do all the radical surgery, chemo, etc. Even patients who have an APR can and do get a recurrence. Cancer is based on statistics and NOTHING is 100% guaranteed.

IMO, why not do chemotherapy? In your case, you had at least one local node that was suspicious for cancer. If that were me, I'd be DEMANDING more chemo just to make sure that IF those cancer cells in that/those node(s) did by chance spread...you will be doing everything in your power to kill it off. Even though we like to believe that chemoradiation kills everything...malignant tumor cells and cancerous nodes, again, there's no guarantee that it does.

Don't worry if your surgeon isn't pushing for the chemo particularly if he is doing a 'study' about the W & W. It just may be that he doesn't want one patient doing chemo and another not. Who knows but this is up to YOU.
Best of luck with whatever decision you come to.

Hi Jolene,

I'm not sure if the port is required for everyone, or if my oncologist thinks it is necessary in my case. Due to the ileitis, I had a lot of difficulty with dehydration and there was a lot of difficulty finding good veins for infusions. It is all connected, of course - the chemo making my other problems worse.

I don't know if my doctor just uses a port with everyone, or goes case by case and will insist on one for me. She definitely said it would be necessary. And she definitely wants me to have the oxi as well as the Xeloda. I'm definitely concerned about neuropathy, but she said she strongly recommends it as the benefits outweigh the risks- at least in my case. We are going to start it and watch for side effects carefully.

I'm not looking forward to the port. On the other hand, after watching one vein after another blow out in January, and suffering through 3-4 attempts to dig around in my arms for a vein per infusion session -- I think I understand why it is necessary, at least for me.

nifty624 wrote:...
I'm not looking forward to the port. On the other hand, after watching one vein after another blow out in January, and suffering through 3-4 attempts to dig around in my arms for a vein per infusion session -- I think I understand why it is necessary, at least for me.

nifty624 -
You may have a choice in type of port to install -- there are several types available. Also, you may have a choice of where, exactly, to have the port installed, i.e., left side vs. right side; high up, or low down, etc

Check it out!

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59538&p=472684#p472684