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Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Oct 06, 2019 5:08 pm
by prs
lakeswim, I kept thinking about you, and wondering how you were doing. So glad to hear you are doing well :!: :!: :!: Please keep us up to date going forward...all us W&Wers have to stick together. :)

Jolene, so glad to hear your good news too! The check ups do become easier as time goes by, but yes, they can be nerve racking for the first year or so. Eventually I figured there was absolutely nothing I could do to change the test result, so why not just relax and stop worrying!

I have my next follow up for a flex sig and custom MRI at the end of the month. That'll be 4 1/2 years from the end of radiation! :D

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Oct 08, 2019 9:54 pm
by Jolene
Lakeswim - I have been thinking of you too ! Glad to know all is going good for you ! I think we are very close in terms of marking the date when radiation ended - that's the date where docs use to measure how long one is NED.

My very first treatment was rad/chemo which ended Dec 2018. I was then under observation for 12 weeks to determine being a WW candidate. And then had 6 rounds of Xelox from April - July 2019. I did not have any stand alone chemo pre radiation like you did, only post.

There were definitely side effects after undergoing the various treatment although as you mentioned, probably insignificant in the view that we manage to escape surgery (for now!).

The radiation has apparently thinned the skin around the anus - so whenever I have some form of mild diarrhea due to some trigger food my bum will result in a tear where fresh blood will be spotted each time I get to the toilet. This totally freaked me out in the beginning as you can imagine being a WW-er but glad to have it all explained to me by the doc !

I tolerated XELOX pretty well and had little side effects, it did however messed with my brain big time which I did not expect taking me to some really dark places where I have never been ! Thank goodness I had a reliable counsellor at that time, otherwise I'm not sure how I am able to get through that period. My mood recovered as soon as chemo ended. Everybody spoke of the physical side effects and I had no warning of what it could do to my brain !

After chemo - I'm feeling joint stiffness on my knees, arm and even fingers on and off which is an annoyance as I have a rather active lifestyle these days. I will have to ask my onc what that is all about. I have some mild numb/tingling sensation on my fingers and toes time to time but nothing that irks me. I also noticed that my bladder gets full up easily and wanting to go to the toilet more often but I was already warned of that due to the oxy affecting just about every nerves it can find.

PRS - Keep us posted on your next scan ! I am getting ready to cheer you on for when you declare another all clear for your 4.5 NED !!! You are our beacon of hope on this WW thread !!! Thanks for the encouragement on the regular checks - I sure hope it gets easier. By the way, seeing as we have not gone for any surgery as yet and that our tumour is under complete clinical response - how are we being restaged ?

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu Nov 07, 2019 2:23 pm
by prs
Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu Nov 07, 2019 2:27 pm
by NHMike
prs wrote:Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!


That's great news. I love it when science improves outcomes.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu Nov 07, 2019 2:56 pm
by lakeswim
Peter! Love this news. Thanks for sharing with us.

I have had odd rectal feelings lately (despite the all clear scans in late Sept) so actually just sent my Onc a note right before I saw the notification of your post. I’m hoping these feelings are nothing (radiated rectum can’t handle too much spicy food!) or maybe late radiation side effects. I read that 90% of patients who had had rectal radiation experience proctitis or something similar - long term (18 months+ out to many years) from radiation. I’ve also been having cramps (like menstrual cramps) so that’s something else odd. (OB said cramps in post-menopausal women is very normal but we will see what Onc says.) It will be a year - end of this month - since I finished radiation/treatment - so not that long.

Meanwhile, hooray for you and great to hear others successfully on this path too... Thanks again for sharing.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sat Nov 09, 2019 12:51 pm
by lakeswim
Any of the W&W-ers out there experience chronic radiation proctitis? Curious what it feels like at the start? My surgeon’s office tells me I was cleared in late September - and bc I am being examined and scanned so often, they would see any recurrence before I would feel it. AND they say it is expected to have changes in your rectum (and bathroom habits) after rectal radiation. So they aren’t engaging me on what could be causing my new symptoms. I wonder if I am feeling radiation proctitis because nothing has changed for me (diet, etc.) and I am experiencing odd new feelings and new urgency and soft stools. And it’s been ~12 months since radiation ended, which fits with the onset of chronic radiation proctitis.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sat Nov 09, 2019 6:18 pm
by weisssoccermom
Not everyone experiences radiation proctitis....and even for those that do....there is not one size fits all.
We tend to forget that we can and do have changes in our bowels that oftentimes don't mean anything. Don't get me wrong, I am NOT saying to ignore certain changes that persist ....but you are being thoroughly checked and you are clean.

I am 13+ years out from radiation and, as far as I know, don't have nor have I ever had (thankfully) the symptoms of radiation proctitis. While the severity can differ from person to person, generally, there is pain, rectal bleeding, a feeling like you are never done going to the bathroom, passing mucus and a host of other related side effects. It is very common, even after menopause to experience the symptoms of PMS....the loose stools, that bloated feeling and even cramps. Those DO subside over time but....especially if you still have your ovaries...you body will continue to produce even minor amounts of hormones....and yes, even after radiation.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Nov 10, 2019 9:50 am
by Jolene
prs wrote:Just wanted to report I had another six monthly follow up last week. The results of both the MRI and the flex sig were fine. That's now 4 1/2 years NED since the end of my radiation treatment. Apparently I get one more six monthly follow up and then go annually after that.

My Doctor told me at their facility they have had about a dozen patients each year who qualified for, and elected to go on Watch and Wait, so we are not alone!

Hope all my fellow W&Wers on this board are doing well and living life!


Hi PRS - Thanks for sharing your wonderful news with us ! Do you still get the nerves just before each scan after so many years ?

Grateful for your contribution on this wait and watch thread ! Good luck and all the best to hitting the 5 year mark which sounds like it's just around the corner !

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Mon Nov 11, 2019 3:34 pm
by prs
lakeswim, I don't believe I ever had radiation proctitis. However my rectum was extraordinarily sensitive for at least a year after radiation finished. I was told the treatment causes the nerves to be much closer to the surface, presumably because whatever is normally at the surface got burned off by the radiation. :!: That sensitivity has slowly decreased over time, and the frequency of those sudden urges to go to the bathroom is greatly reduced. I have also become much better at managing those sudden urges. :)

Jolene, For the first year or so, when I was having quarterly follow up visits, it was pretty nerve racking. However I know the odds of a recurrence decrease as time passes, so the nerves also decreased as time passed. The odds decrease a lot after two years and that's when I was moved to twice a year visits. I wouldn't say the nerves totally disappeared at that point, but for sure I became much more relaxed about it all.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Thu Nov 21, 2019 6:53 pm
by mozart13
prs wrote:That's now 4 1/2 years NED since the end of my radiation treatment.

Hope all my fellow W&Wers on this board are doing well and living life!

that's excellent prs!

I just had CT scan this week, negative it is.
Next week MRI, blood work, in few weeks scope (back pipe exam).
It's been 3 years.
Overall I am good.

lakeswim, as for radiation side effects I get rectal urgency (when you have to go, you got few minutes time frame) and fullness filling.

I try not to spend to much time tinking about whole thing, guess it's natural to try to put that behind.

The other day there was some talk about Lemon peel, so here is interesting study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4163462/

Wish well to all!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Tue Dec 31, 2019 6:40 pm
by prs
Hi mozart13, hope the rest of your follow up tests turned out great.

Wishing you, Jolene, lakeswim, and all our fellow W&Wers a very happy and healthy New Year!!!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Wed Jan 01, 2020 9:14 am
by Jolene
HI PRS - Thank you for your well wishes ! I hope you are well yourself !

And hello to all the other WW-ers ! This board has been quiet and I see that as a good thing !

I am officially 1 year on WW today ! (Finished my radiation exactly on the 31st Dec 2018).

Going for another round of check next week - MRI + flexsig + biopsy !

Fingers crossed once more and hopefully I get to live another 3 months on WW !!!

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sat Jan 04, 2020 8:25 pm
by Annie50
Hi everyone,
Just wanted to let you know I am 18 months now post chemo radiotherapy and complete response .. just had latest sigmoidoscopy / MRI / CT .. all good. So onwards we go .. on to 6 monthly MRI now and also had full colonoscopy too .. xxx Annie xxx

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sat Jan 04, 2020 8:29 pm
by NHMike
Annie50 wrote:Hi everyone,
Just wanted to let you know I am 18 months now post chemo radiotherapy and complete response .. just had latest sigmoidoscopy / MRI / CT .. all good. So onwards we go .. on to 6 monthly MRI now and also had full colonoscopy too .. xxx Annie xxx


Great news.

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Posted: Sun Jan 05, 2020 6:15 pm
by Annie50
NHMike wrote:
Annie50 wrote:Hi everyone,
Just wanted to let you know I am 18 months now post chemo radiotherapy and complete response .. just had latest sigmoidoscopy / MRI / CT .. all good. So onwards we go .. on to 6 monthly MRI now and also had full colonoscopy too .. xxx Annie xxx


Great news.

Thanks Mike hope you are doing well .. cxx