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

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IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

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

Postby IsmailMehdi » Tue Jun 01, 2021 9:03 am

Jolene wrote:I hope this isn't too late.

I'm not familiar with the concept of using signatera for CCR management so I can't really comment. My doctor who is very pro WW has never mentioned this method of managing before and I don't think I've come across any research that uses signatera to make judgment of whether one should proceed with WW or not. How did you come about with this idea? Did you read about it somewhere?

You can see from my signature that my doctor basically uses MRI + scope check (for site check) + biopsy to triangulate the positive results once every 3 months in the first year of WW. It was then spaced out to once every 4 months and now in my 2.5 years in of WW, it is being spaced out to once every 6 months. PET was also done as regularly as possible ( once every 9-12 months) to keep track of any stray cancer cells in the body.

A lot of us here have low CEA that are unreliable and I believed that has never been a good tool for WW to begin with. I'm not familiar with signatera but my feeling is that you can't beat a management that includes MRI + scope (and biopsy) + PET scan on regular basis. Hope this helps.


Hi Jolene,
I don't believe what i described is an accepted protocol, at least not by my oncologist. It just made sense to me that signatera could be used in addition to the regular WW protocol. On this board some have already gotten the test and it seems to affect the frequency of the watch part. When you say doctor in your case, is that your surgeon or your oncologist. My surgeon is very anti-biopsy, not sure why.

I agree with you on the MRI/Scope and Biopsy, i believe that's the right approach. I was looking at Signatera as a replacement for CEA since CEA is not super reliable.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

Jolene
Posts: 169
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Tue Jun 01, 2021 11:19 am

IsmailMehdi wrote:Hi Jolene,
I don't believe what i described is an accepted protocol, at least not by my oncologist. It just made sense to me that signatera could be used in addition to the regular WW protocol. On this board some have already gotten the test and it seems to affect the frequency of the watch part. When you say doctor in your case, is that your surgeon or your oncologist. My surgeon is very anti-biopsy, not sure why.

I agree with you on the MRI/Scope and Biopsy, i believe that's the right approach. I was looking at Signatera as a replacement for CEA since CEA is not super reliable.



Hi Ismail,

Sorry if I missed the mention of using signatera on this board.. I will look into it again then! The doctor mention is the colorectal surgeon, it's just that I've not undergone any surgery (yet!) and it always feels weird to call him my surgeon but yes my surgeon is very pro WW for cases that he thinks have a chance at it. My oncologist on the other hand isn't all that keen but respected my wish to go ahead with it.

There could be a few reasons for being anti-biopsy which was explained to me by my surgeon. There has always been the argument that when surgeons extract samples within an infected area, there is always the chance of it being random. My surgeon usually picks 6 samples each time to the best of his sight while doing the scope and there is a chance that he might have picked in areas that don't have the cancer cells. He could have picked more than 6 samples but then there is the argument that he didn't pick deep enough as cancer cells could be lying underneath the surface. He could have picked a lot deeper and perform something called Transanal Endoscopic Microsurgery (TEM) but this could induce pain and recovery problems which he isn't keen on. This then turns into a cycle of counter-argument that the area picked on isn't wide nor deep enough in all cases anyway, so why not just cut the whole damn thing away which is precisely what WW wants to avoid ! Lol :lol:

Hence apart from the biopsy, he would also do the MRI and PET scan at the same so that we can triangulate all 3 sets of evidence together to make a judgment of whether the CCR is under control. I agree that just doing only the biopsy is insufficient, it should be accompanied by other tests.

MRI and PET scans are not cheap at all and access to these scans may be limited for some people in some countries. I was fortunate that my insurance covers all of it so that means my doctor has the whole kitchen to himself as he sees fit at any time he determines. He would even throw in ultrasound from time to time just to be on the safe side. I suspect the availability of such tests/procedures without the financial constraint may have helped him to feel more confident offering it. Saying that, he has mentioned that while he is pro WW it is still not as mainstream as it should be and that there will be many surgeons out there who will be against it as it is a fairly radical concept albeit gradually gaining momentum. Perhaps seek a second opinion ? Someone who is familiar with WW and is pro WW to see what they can offer. A doctor who is not familiar with WW cannot confidently offer you that solution. You may want to ask whether he has managed any WW cases before?

I know some people on this board do not engage in all of the above tests each time. Some use only MRI and scope at alternate timing and it has worked for them so far. There was also a lady who did a TEM and it worked for her too but my surgeon wasn't keen and prefers to go down the biopsy + MRI/PET route.
Last edited by Jolene on Thu Jun 03, 2021 9:08 am, edited 1 time in total.
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place (12 weeks)
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR success. Surgery on hold. 6 cycles of Xelox.
Aug 19 - 6 cycles of Xelox completed
Oct 19 - Flex sig, biopsy, PET/MRI
Jan/Jun 20 - Colonscopy, biopsy, MRI / Flex sig, biopsy, PET-MRI, CT
Jan 21 - Flex sig, biopsy, MRI/CT

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

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

Postby IsmailMehdi » Tue Jun 01, 2021 1:56 pm

Hi Jolene,
You're lucky your surgeon is pro-WW. It seems that surgeons favor cutting for the most part. The odds they cite for NO local recurrence are usually in the 90+%. But there's trials now for organ preservation that show it's a viable path.
The protocol you are on sounds very good, i hope to be lucky enough to get there.

I am now on FOLFIRINOX, after 6 more sessions, i'll go through chemoradiation and then we'll see where things are.

Did you mean TEM instead of TME. I think TME is when they remove the rectum.

edit: corrected the recurrence odds. Meant to say that after TME with good margin local recurrence is extremely low.
Last edited by IsmailMehdi on Fri Jun 04, 2021 9:18 am, edited 1 time in total.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

Jolene
Posts: 169
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Thu Jun 03, 2021 9:48 am

IsmailMehdi wrote:Hi Jolene,
You're lucky your surgeon is pro-WW. It seems that surgeons favor cutting for the most part. The odds they cite for local recurrence are usually in the 90+%. But there's trials now for organ preservation that show it's a viable path.
The protocol you are on sounds very good, i hope to be lucky enough to get there.

I am now on FOLFIRINOX, after 6 more sessions, i'll go through chemoradiation and then we'll see where things are.

Did you mean TEM instead of TME. I think TME is when they remove the rectum.


Hi Ismail - Ops.. Yes, it's TEM !! I revised my post. Thanks for highlighting.

Cutting it off is the gold standard because most doctors don't like veering off. It's like that colleague we have who doesn't like changes and experimenting with new methods and techniques. That old "if it's not broken, don't change it" adage. Lol.

I suspect it could also be internal politics and the pressure to keep up their KPI if they have bosses and board of directors above them who frown upon cutting-edge practices unless you are MSK (memorial sloan kettering) who is an advocate for WW.

My surgeon has his own private practice which basically means he is his own boss and I'm guessing that provides a lot of leeway in offering some cutting-edge ideas to patients and also why doctors set up their own practice instead of "working for the group". He presents regularly in conferences even with his own practice so he is quite an active researcher in a sense and often on top of new research papers being published.

As for the odds of local recurrence, it's not 90%+ .. it's more along the line of 30%! This is on the basis of a published paper by Dr Habr-Gama in 2013. Unless he is referring to other statistics but don't take my word for it, you may want to check this paper out on Google Scholar or just Google to see if you can have access to it. > Local Recurrence After Complete Clinical Response and Watch and Wait in Rectal Cancer After Neoadjuvant Chemoradiation: Impact of Salvage Therapy on Local Disease Control

Check out MSK website with follow-up research since > https://www.mskcc.org/news/how-watch-an ... ality-life

Another tip. Dr Habr-Gama use an 8 weeks bench mark to determine her WW candidates. My surgeon modified the framework and had me wait up to 12 weeks for the tumor to completely disappear. He mentioned that there are updated research out there that had patients wait up till 16 weeks and still made the cut for being a WW candidate. If he had follow the 8 weeks benchmark, I would have to undergo surgery then. My tumour was still lurking around at week 8 but was completely gone by week 12. It takes time for the radiation to work.

All the best for your treatment. Please keep us posted !
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place (12 weeks)
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR success. Surgery on hold. 6 cycles of Xelox.
Aug 19 - 6 cycles of Xelox completed
Oct 19 - Flex sig, biopsy, PET/MRI
Jan/Jun 20 - Colonscopy, biopsy, MRI / Flex sig, biopsy, PET-MRI, CT
Jan 21 - Flex sig, biopsy, MRI/CT

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

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

Postby IsmailMehdi » Fri Jun 04, 2021 9:15 am

Hi Jolene,
Yikes, i totally miswrote the local recurrence. I'll update my post.
What I meant to say is surgeons expect that there will NOT be a recurrence for high 90% of TMEs with good margins. That's what my surgeon talked about in terms of "local" cure.
You're right about veering course, i guess standard care is there for a reason, but it resists new possibilities. Just look at how long they pushed back on WW.

Thanks for sharing the study results on local recurrence after cCR. I tend to be cautious about old clinical trials, same with prognosis. All that is backwards looking and does not account for new standard of care and improvements in treatment and surgical techniques. It's certainly good data, but maybe foolishly i expect things to have improved from 2014.
I think the most interesting thing going on right now as far as WW is the OPRA trial which should conclude in November and has published preliminary results.

Thank you for the details on how long after chemoradiation you waited. My surgeon said 8 to 12 weeks. I'll have to see how things are going when I get there.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.

prs
Posts: 181
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 » Fri Jun 04, 2021 2:15 pm

Hi Ismail,

Jolene is giving you great advice! I notice your tumor is very low just like mine. In fact the lower part of my tumor was into the sphincter muscles. My surgeon told me that if she had to do any cutting that involved the sphincter muscles it would likely have a major impact on my quality of life. She didn't even take samples for biopsy because she said the sample would be so small the odds of collecting any remaining cancer cells was low. However the odds of causing permanent damage to the muscle was high, and so not worth the risk. If your tumor is into your sphincter you might want to think hard about a TME, and discuss with your surgeon.

I don't know if you've read everything in this thread, but there's lots of info there about all this stuff. Sounds like you have time to plough your way thru it before you get your results. We all wish you the best of luck!!
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

IsmailMehdi
Posts: 27
Joined: Sun May 02, 2021 5:52 pm

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

Postby IsmailMehdi » Sat Jun 05, 2021 1:48 pm

prs wrote:Hi Ismail,

Jolene is giving you great advice! I notice your tumor is very low just like mine. In fact the lower part of my tumor was into the sphincter muscles. My surgeon told me that if she had to do any cutting that involved the sphincter muscles it would likely have a major impact on my quality of life. She didn't even take samples for biopsy because she said the sample would be so small the odds of collecting any remaining cancer cells was low. However the odds of causing permanent damage to the muscle was high, and so not worth the risk. If your tumor is into your sphincter you might want to think hard about a TME, and discuss with your surgeon.

I don't know if you've read everything in this thread, but there's lots of info there about all this stuff. Sounds like you have time to plough your way thru it before you get your results. We all wish you the best of luck!!



Thanks prs, I agree. Jolene and in general this board has helped me quite a bit. Lots of practical, lived experience that everyone shares freely. For example, i learned from this board about emend. I asked for it, and my second chemo was nausea free.
At present, it has not invaded the sphincter. I am hoping that between chemo and radiation it will shrink enough to give me options at surgery time. I just finished my second chemo, 6 more to go and then radiation. If all goes well, i'll know in september/october what my surgery options are. I am definitely going to read everything I can about WW, it seems like a tough decision to make right now.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021, switching to FOLFIRINOX from session 2. 8 rounds total.


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