Jolene wrote:Hi all
Joining this group as I may POTENTIALLY be a candidate for WW.
Just did a second MRI and CT chest at week 6 post-radiation.
The good news is my tumour seems to be completely gone based on doctor's anal check. CT chest scans returned no mets !
However, the not so good news is there is a speck of suspicious tumour residual based on the MRI scan which could also be radiated post treatment matter at the same time. They can't quite tell for sure based on the scan. The MRI scan hence did not fulfill a CCR criteria.
The next good news is that I have been responding very well to the CRT and whilst the MRI did not fulfill a CCR criteria, the anal check seemed to checks out that it is no longer physically there. My tumour has shrunk tremendously and doc said he couldn't even feel it there anymore. Furthermore, it has only been 6 weeks and my colorectal doctor thinks I should give it another 6 weeks for the radiation to continue working. Based on his experience at how my tumour has been responding to CRT, he is excited about the prospect of me being a WW candidate.
However both my oncologist and rad onco are against WW but will have to respect my final decision nevertheless. Oncologist went so far as to say that if I were his family, he would be upset that I choosed to continue waiting stating that he only recommends ww for those who has a low rectal tumour and requires a permanent stoma who has so much more to loose, hence in comparison I will only be suffering from multiple toilet trips post surgery which according to him is insignificant in the grand scheme of things. By continuing to wait, I run the risk of a cancer recurrence and the anxiety of waiting and that not everyone has the stomach for such risk taking. Rad onco simply said he is old school and would prefer to do things via the standard treatment procedure instead of chancing a recurrence.
Going for surgery means I loose my rectum completely and while I do not need a stoma bag for life, running to the toilet 20 times a day isn't what I imagine spending the rest of life doing either. It may be insignificant from the oncologist point of view but it means the world to me to have a chance at ww.
I have decided to give it my best shot at waiting another 6 weeks. The colorectal doctor has however made it very clear to me that I have to pass all four tests in another 6 weeks (totalling 12 weeks post radiation) to be even considered as a ww candidate.
- A clear MRI
- A clear PET
- A clear sig flex scope
- A clear negative return on biopsy
One can only stay hopeful.
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.) 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).
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.
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.)
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).
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.)
Good luck to you and keep us posted. I'll be particularly interested in your outcome as our situation sounds similar.
Lakeswim