lakeswim wrote:Questions for W&W:
- What criteria will they use to determine if W&W is an option for me? (I have a large, poorly differentiated, Stage 3a tumor.
poorly diff'd is less good. I had moderately well diff'd, did the full meal deal ..... and still had one recurrence, and now waiting on CT results to see if I have something else .... 11 years later !
Does tumor size/type/location matter in this decision?)
Yes for a number of reasons
- Will there be any biopsy option (as someone seemed to have in this thread) to show that I've had a pathological (right?) complete response?
pathCR = they have seen at the cellular level what is there ... I had pCR and still had a met later
clinicalCR= they are using clinical signs, exams and imaging to presume what may be there
- How much higher is the risk of recurrence than if I had surgery?
don't have stats or other info from my sitrep
THIS is probably the exact question they are trying to answer with their clinical trials
- Would surgery still be an option in the future if there is a recurrence? (Is this "salvage" surgery?) And are people worse off after salvage surgery than having the surgery initially?
make SURE 1,000 % that doing a trial, W&W, whatever ... does NOT exclude you from further options
- I realize there are trials running now and there isn't much LT data, but what is the longest term data we have for patients who have chosen W&W?
hoping some more can weigh in. I am NOT W&W and please be advised ... others' experiences may NOT reflect how you will do or not do in any given trial or treatment regimen
- What will be the plan for surveillance after we choose this option?
THIS my friend is the GOLD standard question ...
IMO as much, of different types, with more "eyes" on your sitrep = BETTER
prs wrote:Big Jay, all I can tell you is It's been eighteen months since I finished radiation and almost a year since chemo and my body is just about back to normal. I had my quarterly exam and rectal MRI on Oct 31st and everything looked good. I am so glad I was lucky enough this option was available to me. I have to believe my QOL is much higher than it would have been if my rectum and sphincter were surgically removed.
My radiation oncologist told me they are seeing higher rates of complete clinical response although they have not changed their radiation procedures. I have to assume they are looking harder given they can now offer their patients "watch and wait" rather than automatically going to surgery. Also they may be waiting longer to make the call as I've read it can take eight weeks or more for the tumor to finish shrinking.
Watch and Wait is not an approved treatment for rectal cancer so I can understand why some Doctors are reluctant to go this route. However it's your body and you are entitled to make your own decision. My surgeon told me that in her 15 years experience before she introduced this program she'd had about a dozen patients who made their own decision to avoid surgery and go to watch and wait. To her knowledge only one of them suffered a recurrence.
prs wrote:Hi Annie50, my surgeon definitely recommended I take mop up chemo as soon as she told me I'd had a CCR. In fact I had my first infusion seven days later. She has since told me there is plenty of data out there showing that patients who have mop up chemo have lower recurrence rates than those who don't. She said this applies both to W&W patients and patients who have surgery.
I did not have a biopsy. My surgeon (board certified with 20 years experience) told me that having the knowledge to determine a CCR is the most important thing. Biopsy samples are so small that the odds of hitting a remaining spec of cancer are very small, and it would be very unwise to draw any conclusion from these small biopsy samples. That's why mop up chemo is so important, you are making sure you kill any remaining specs of cancer before they have a chance to spread or regrow.
My tumor was very low and into my sphincter muscles. My surgeon also explained that taking any decent sized sample from that area would have involved cutting into the muscles with a very likely detrimental impact on my future QOL.
Hope this helps, and I would encourage you to inquire about mop up chemo. Yes, it's pretty miserable, but IMHO it's worth it to make sure any remaining cancer cells are wiped out. Good luck with the W&W, the medical profession moves very slowly but I believe W&W starting to be accepted more widely. It sure worked out great for me.
mozart13 wrote:Trial, chemo before chemo/rad, chemo after chemo/rad, we shall see result's before the end of this year. Will be interesting. We have result's chemo/rad than 6 rounds of Folfox. In this trial they are giving 8 rounds of Folfox or 6 rounds of CapeOX.
Wonder if anybody on this board is part of that trial?
https://clinicaltrials.gov/ct2/show/NCT ... val&rank=1
chemo is rough but won't kill u
I think that's a no brainer for me ( 3 months of shit v reacurance)
Hope this is helpful and not more confusing
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