lakeswim wrote:
Hi Jolene. You are in the same boat as I am - just a few weeks behind. My (apparently BULKY) tumor completely disappeared on MRI 6 weeks post chemorad (it had already reduced significantly after chemo, which I did first) and the flex sig and digital exams both show no tumor. (I had no PET scan or biopsy.)
I did not do flex sig after 6 weeks. It was only based on anal check (completely disappeared) and MRI (specks of residual). I am due in another 6 weeks when a flex sig, pet scan, biopsy AND MRI will be ordered again. I think you could have more tests done after another 6 weeks as 12 weeks is the crucial determining factor for the WW !
But my fat plane (between rectum and uterus) is indistinct so there could still be something there. So the Tumor Board here said NO cCR (just based on fat plane) and their official recommendation is surgery. They did offer me to wait from mid Jan to this week to allow radiation to work and scheduled an MRI here at home for tomorrow - to see if anything changes (they told me that they don't anticipate it will).
I have read that you mentioned the fat plane issue a number of time - but thoughout all this while my docs have never mentioned it once !
Meanwhile, I scheduled a second opinion @ MSK for this week (they are at the forefront of W&W) but my flight was cancelled. (Ugh.) So,I will get my MRI here tomorrow night and maybe get my second opinion next Wed (the next available @MSK)- but I really am uncomfortable waiting. Or, rather, at this point, I just want to get this show on the road. So I don't know.
The wait can be excruciating. The last 6 weeks was horrendous for me. While I am feeling hopeful for another 6 weeks as thats means I am holding out to be a ww candidate and might just be able to get away without surgery and LARS symtpoms, I'm also concerned that it's going to get to me psychologically and mentally once more while waiting out. I have been seeing a counselor on the side and that has been helping a lot in between the wait. Do you have any support from anyone else on the mental/emotional/psychological side of things ?
Initially, I thought W&W was crazy. After going through chemorad and all the unpredictable bathroom issues from the Xeloda, I decided I couldn't live that way and decided W&W is for me. Then tumor board said "NO W&W - YES SURGERY" and I was upset. But now that I've read through many posts here and Julie Y-W's blog, I am back to being afraid of W&W and resigned to the surgery. Come what may, at least surgery increases my chance of living, lessens my chance of recurrence. At what cost, I don't know, but I am trying to make my peace with that. (We will see how the MRI goes, but that's how I'm thinking today.)
Could you direct me tot his Julie Y blog ? I tried seraching on the Colon blog but couldn't find any !
I dread the idea of surgery and LARS at the beginning too. In fact I have a separate thread on that and how the thought of surgery is affecting me mentally. I have the help of a counselor on my end since to help process those dreadful thoughts and have gradually make my peace that I will have to accept surgery in the event of a less than ideal results in 6 weeks. I also kept reminding myself that there are people in other parts of the world who are dying to have surgeries and are unable to have it for various reasons. The opportunity to have surgery option laid out for us is in itself a privilege and a fortunate position to be in.
Lastly, Jolene, I just wonder about the distinct fat plane thing (not sure this applies to you, but FYI). I found a small study that showed that most people (96% of women) don't have distinct fat planes in the pelvic organs to begin with - so the plane being indistinct shouldn't be a driving factor in staging or in determining cCR at this point. But, my surgeon brushed that study off because it was a CT study (though my cousin, a radiologist, said it shouldn't matter).
Again - there was no mention of a distinct fat plane from any of my docs ! I will try to look it up and see if I can make sense of what you are referring to. I hope someone around with this issue can contribute and share!
At the end of the day, I suppose I have to trust these people know what they're doing as they do it every day. (Right? Sigh.)
It sounds like you are doing the best that you can. Actively seeking second opinon and reading up ! My counselor mentioned that one of my strength is being pro-active in seeking help and opinions and that is what will help me to overcome adversities - be it surgery or not. I hope it can be the same for you too. She also got me to think about what got me through my last adversity, and draw strength from that previous experience and apply to this one now. Maybe you can give it a go and think about it too ?
Good luck to you and keep us posted. I'll be particularly interested in your outcome as our situation sounds similar.
Yes - let's keep each other posted !
Lakeswim
prs wrote:Please don't fret about your month of waiting. I believe it was pretty much standard practice for Dr Habr-Gama's patients to wait 12 weeks before she determined if they'd had a CCR.
Phillypatient wrote:Hi Jolene
You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.
https://www.mskcc.org/clinical-updates/ ... nt-therapy
Good luck
Phillypatient wrote:Hi Jolene
You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.
https://www.mskcc.org/clinical-updates/ ... nt-therapy
Good luck
Phillypatient wrote:Hi Jolene
You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.
https://www.mskcc.org/clinical-updates/ ... nt-therapy
Good luck
prs wrote:Phillypatient wrote:Hi Jolene
You should check this out. He is head of MSK Colorectal surgery and running the watch and wait study. I'm surprised you have not been advised to do full chemotherapy. It's called "consolidation" chemo and increases the chance of a full response. My opinion is that I would do everything possible to avoid the surgery.
https://www.mskcc.org/clinical-updates/ ... nt-therapy
Good luck
Hi Phillypatient, very interesting, thanks for posting!
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