lakeswim wrote:Hi.
I am posting this question here to this group (the watch & wait group) as they may have noticed this more due to the fact they have not had surgery. I am 10-12 weeks out of radiation and I felt GREAT (more energy than I had in years and my body felt good) until 2 weeks ago. Now I have aches in my hips and thighs. It feels like I either had a long run 2 days ago, did lots of squats, or I'm about to get the flu. I assume this is from the radiation? Why is it happening now? Will it continue forever? I'm also tired often again - like I used to be. I get another MRI next week and then likely surgery but this "new" achiness and fatigue is getting me down. I was really enjoying being active and having energy - esp with what last year was like and what I will have ahead of me. I'm hoping this achiness isn't another permanent side effect from treatment.
Also, my recent flex sig noted some "stenosis" in my rectum. I've also had some bowel changes recently (more urgency and. I'm curious if the W&W group of people see any changes in their bowels due to radiation or whether things are pretty good. Obv., this doesn't matter if I have surgery, but I am curious nonetheless due to recent bowel changes.
Thanks.
lakeswim wrote:Thanks for info and suggestion.
My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!
So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.
Annie50 wrote:lakeswim wrote:Thanks for info and suggestion.
My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!
So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.
Hi lakeswim.. how did you get on with the scan ? And the aches ? Hope good. Xxx Annie xxxx
lakeswim wrote:Thanks for info and suggestion.
My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!
So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.
lakeswim wrote:Annie50 wrote:lakeswim wrote:Thanks for info and suggestion.
My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!
So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.
Hi lakeswim.. how did you get on with the scan ? And the aches ? Hope good. Xxx Annie xxxx
HI Annie. How are you? How are you feeling? What are next steps for you?
I am going to MSK for the “last ditch” scan this week and to meet a surgeon there for a 3rd opinion (probably just a confirmation, really, that W&W is not an option and I do indeed need this surgery). I should know next steps soon (though I’ve been saying this since the new year).
Aches are a bit better this week but I really dialed back my activity. (No snowshoeing in 18” of snow. And much shorter, flatter walks.) I do have the first UTI of my life.
Thanks for checking in!
Annie50 wrote:lakeswim wrote:Thanks for info and suggestion.
My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!
So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.
Hi lakeswim glad you are feeling better ! Take it easy ? Still a little confused by lack of fat plane being a deciding issue ? What is the concern re this and does anyone know what it means ?
Xxx annie xxx
lakeswim wrote:Annie50 wrote:lakeswim wrote:Thanks for info and suggestion.
My Rad Onc office emailed me back and said “all side effects are gone 2 weeks after radiation ends.” Ha!
So my hopes to get active again if/when my treatment is over (and I have a handle on the continence situation) is a pipe dream then.
Hi lakeswim glad you are feeling better ! Take it easy ? Still a little confused by lack of fat plane being a deciding issue ? What is the concern re this and does anyone know what it means ?
Xxx annie xxx
O Stoma Mia sent me this helpful link:
http://radiologyassistant.nl/en/p56195b ... ng-20.html
lakeswim wrote:Surgeon gave me option of seeing if extra time would allow radiation to continue working and perhaps make my fat plane more distinct. But she also warned me it isn’t likely (after chemo and chemoradiation).
Surgery will be quickly scheduled if nothing changed.
As my cousin, who is an experienced radiologist (although not an Onc Radiologist!) put it, what are the chances my big/primary tumor disappeared yet there is still something there in my fat plane or uterus (esp when there never was clear evidence it even invaded uterus!). But I guess when it comes to cancer, we take no chances.
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.
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