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

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prs
Posts: 139
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Mon Feb 04, 2019 4:08 pm

There is a lot of bone in the pelvic area and, as I understand it, radiation negatively impacts the ability of that bone to produce blood cells. I know all my blood counts dropped during radiation, and it took a year for them to climb back to just below the low end of the normal range. The counts leveled out at those numbers and have never climbed back to the counts I had before treatment.

The low blood counts greatly reduced my ability to exercise without getting tired and stiff muscles. Things improved as my counts improved.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

mozart13
Posts: 146
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Achiness after radiation

Postby mozart13 » Thu Feb 07, 2019 8:51 pm

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.


Weakness, fatigue, shortness of breath, urgency (bowel), peripheral neuropathy, just a few things that are part of the package (folfox and radiation). This diagnosis and treatment is not a fun, rather brutal, it changes life completely.

But hey, it's small price to pay if it helps!
Good luck!!!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

User avatar
O Stoma Mia
Posts: 1522
Joined: Sat Jun 22, 2013 6:29 am

Re: Achiness after radiation

Postby O Stoma Mia » Thu Feb 07, 2019 11:52 pm


Annie50
Posts: 68
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Sun Feb 10, 2019 10:49 am

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
Posts: 182
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Feb 10, 2019 11:44 am

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!
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

Annie50
Posts: 68
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Sun Feb 10, 2019 12:08 pm

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

Annie50
Posts: 68
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Sun Feb 10, 2019 12:58 pm

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!


Oh and I'm doing well .. feeling good and waiting for next check point !

lakeswim
Posts: 182
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Feb 10, 2019 1:01 pm

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
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

Annie50
Posts: 68
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Sun Feb 10, 2019 1:37 pm

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


Thanks Lakewswim .. why did they give the extra time if concerned ? Will the extra time change the lack of fat plane issue ? Xxx Anniexx

lakeswim
Posts: 182
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Sun Feb 10, 2019 2:28 pm

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.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

Annie50
Posts: 68
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Sun Feb 10, 2019 6:42 pm

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.


Yes my brothers a doctor and he says it would be odd if it obliterated this fairly bulky tumour but not everything else in the loc area ? But as you say cancer isn't always logical I'm sure but then again logic is all you've got sometimes. And as jt surgeon said it would be a shame without evidence to do this big op and find histology was like biopsies no cancer cells ? Hard devisions though eh ? Xxx Annie xxc

Jolene
Posts: 40
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Tue Feb 12, 2019 11:22 am

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. :|
Dx @ 39 F, married, no kids, full-time work
Nov 18 - Colonoscopy + MRI + CT = Dx of a mid-rectal tumour at T3N1M0 (2cm)
Dec 18 - Chemoradiation prescribed - 28 sessions of radiation + Capecitabine at 3000mg daily
End Dec 18 - Completed chemoradiation with little side effets
24 Jan 19 - Tumor shrunk by 50% via anal check
Mid feb 19 - Tumor is physically gone via anal check but second MRI showed a speck of residual tumour.
MId Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.

lakeswim
Posts: 182
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Feb 12, 2019 11:50 am

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
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

lakeswim
Posts: 182
Joined: Sat Mar 31, 2018 9:37 am

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

Postby lakeswim » Tue Feb 12, 2019 11:53 am

One last thing - Jolene. Have you had CHEMO yet? If I were you, and considering W&W, I'd have chemo.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

prs
Posts: 139
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Wed Feb 13, 2019 11:26 am

W&W is not an NCI approved treatment for rectal cancer so it's likely that some medical facilities are reluctant to introduce it for fear of being sued. Also the medical profession is very conservative, and quite rightly so. New treatments gain acceptance more quickly when deep pocket drug Companies and equipment suppliers are spending big bucks to advertise them and educate doctors on their use. There is not much financial incentive for a facility to introduce W&W.

One of the things that convinced me to go W&W is that my surgeon told me that, for the small number of W&W patients that did have a recurrence and then had "salvage surgery", the data showed their outcomes were just as good as those who had surgery in the first place. So it seemed like a win-win proposition to me.

lakeswim, I wonder if your facility has decided not to risk going with W&W, and is using the fat plane thing as an excuse? If so, and you decide to fight them, it would be worth finding out if they would still support you, and provide the monitoring services required if you decide on your own to go W&W.

I know none of this is easy, and fervently hope everything works itself out well for you!!
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED


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