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

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prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Wed Jul 01, 2020 2:34 am

roadrunner wrote:You and I are in a somewhat similar situation. I started with TNT, did 4 treatments of FOLFOX (one without Oxaliplatin), I had tons of bad side effects but achieved 70-80% reduction of the tumor. So jumped to CRT, 60Gy w/Capecitabine. Did extra cycles of Xeloda before and after RT. Was offered the other 4 FOLFOX treatments (of TNT’s 8 treatments) in the “interval” after CRT, was about to start, but deferred due to the pandemic. So went to MRI, which showed “near cCR,” then flex sig, which showed the same. There’s very little of anything left, but it’s not the smooth white scar W&W requires. Subsequent biopsy was negative, but my surgeon judges that there likely is some cancer still present (and that’s the best evidence). So now I am just about to finish off the FOLFOX as a last ditch effort at local control/way to get the full chemo in before surgery.

I’ve got a great team and have researched this a great deal. Here’s my understanding: cCRs and pCRs increase for up to 22 weeks after CRT. “Interval” chemo appears to increase the odds of pCR, but the effect is modest. A lot seems to depend on whether you were a “good responder” to CRT. If yes, delay is safer and more likely to work. Chemo during the interval would I think reduce risk of spread and may help a bit if you’ve got very little cancer left. But local control is mostly about radiation therapy and surgery. You said your response to CRT was “robust,” but not how much disease remained, which I think is important — if you’re really close to a cCR and short of 22 weeks out, you may achieve a cCR with or without chemo. Just my perspective, but while I will likely do the chemo with the *hope* that it will get me from a “near cCR” to a cCR, I understand that I’m likely just going to get the benefit of getting the recommended cycles in before surgery, thus avoiding systemic undertreatment for the most part. You may also want to discuss trans-anal excision with your surgeon. Or at least perioperative biopsy if you get to a resection. Those may provide alternatives to radical resection in some cases. Good luck!



Thank you for sharing and I really hope you get the ccr.

It was interesting and very encouraging to see what a dramatic effect 4 infusions of FOLFOX had on your tumor. I pray I respond as well.

The crt reduced the mass of the tumor by more than 50% and much of what remains is necrotic (dead or dying cancer cells. My doctors could not/would not say what % of what remains is active.

Unfortunately my tumor does involve the external anal sphincter, so for me it truly is an all or none scenario.

Ive been told there is no alternative to an APR (leaving me with a bag) should I not achieve ccr :( and I’m unwilling to go through and live like that.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

Jolene
Posts: 156
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Wed Jul 01, 2020 12:42 pm

prayingforccr - I"m not sure if this is helpful for you but based on latest published studies, CCR can take up to 16 weeks based on a 2019 study !

When W&W first made it's headline by Dr Habr-Gama, 8 weeks was the benchmark. Further studies later pushed it to 12 weeks and the most recent one is at 16 weeks. See paper below also published by Dr Har-Gama.

https://journals.lww.com/dcrjournal/Abstract/2019/07000/Achieving_a_Complete_Clinical_Response_After.6.aspx

I was declared CCR only at around 12 weeks or so, had I followed the original 8 weeks benchmark I would have already gone under the knife. Radiation is a gift that keeps on giving and giving.

prayingforccr wrote:I was diagnosed with stage locally advanced 3 rectal cancer in november of last year and was lucky enough to be accepted into a clinical trial and treated at memorial sloan kettering where I underwent chemoradiation therapy involving 5 weeks of capecitabine, a radiation enhancing trial drug designed to keep cancer cells from repairing themselves, and 53 grey of radiation.

After 6 weeks, I had an mri. The doctors were all excited at the prospect of a complete response based on the mri, but upon a sigmoidoscopy and DRE, despite a robust response, there was still persistent disease, unfortunately.

After another month, I have begun folfox chemotherapy, the goal of which is to shrink/destroy what is left of the tumor.

This is known as consolidation chemotherapy.

So, the batting order is different.

CRT then folfox

My doctors and I are in full agreement that we will have done EVERYTHING possible to avoid radical surgery.

I am PRAYING for a complete response as I have decided after much reflection that I would rather end my life than undergo a surgery that would leave me with a bag.

Has anyone had a complete response after only a partial response from CRT, and THEN undergoing folfox?

I know it’s unorthodox, but I am trying to set expectations.

Thank you for reading and any responses
Dx @ 39 F, married
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
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

Rikimaroo
Posts: 320
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Wed Jul 01, 2020 1:06 pm

"I am PRAYING for a complete response as I have decided after much reflection that I would rather end my life than undergo a surgery that would leave me with a bag."

I really hope everything works out for you, but I wanted to pull this statement out of your post. When I first got diagnosed I was like you, concerned, worried and uneducated on what the future is going to be. When they told me I would have to temporary bag, i was like what is that, and what!!! After Chemo Radiation I was for 6 months NED, nothing, scopes showed no cancer. Then it came back with a vengeance, to my liver and the same spot in the rectum. PRS and others did Chemo right after chemo radiation and are now NED, thank god for them, very happy for them. I wish I did Chemo (FOLFOX) right after chemo radiation but I was nervous, uneducated and thought this was all a dream I am cured, why do I need to do anything.

Anyways fast forward and I have stage 4 cancer now, after the six months of nothing showing up. I did FOLFOX great response and did surgery April 2018. LAR surgery/Liver Resection Surgery and Temporary Ileostomy. The ostomy was no problem at all. I hardly noticed it and it was like clockwork easy to manage.

I had recurrence after recurrence and eventually after they reversed my bag for 1 year it was horrible. pooping myself, can't hold it, bathroom for 45 minutes + random trips the bathroom multiple times 6-12 times a day. It just never got better. So because of my recurrence I told the doctor give me a permanent colostomy bag. I have never been more happy. I mean you get a stealth belt and people can hardly see it.

Giving up life just because of the bag is the most selfish thing I ever read in my life, I know I am being harsh. If you have a family or loved ones, they would not want you to think like this. Permanent bag is not bad, don't sweat it, if you do get surgery and you get a perm bag, you will see its part of you and you will adapt to it and move forward. The most important thing for you is to be cancer free. That's is the MOST important thing, anything other then that should not even cross your mind, especially a bag.

Plus to my wife's chagrin I teabag her with my bag all the time....Just kidding LOL :) but I do mess with her like walk up to her and while she is on the computer bang her with my bag and she is like what the hell. LOL...

Best of luck too you

Riki.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

roadrunner
Posts: 55
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Wed Jul 01, 2020 8:40 pm

Prayingforccr:

As a fellow striver for W&W, I hope you consider Riki’s perspective. I have been told that I can avoid a permanent stoma if I end up with TME, though it may be a close thing. That said, even a temp iliostomy does put me on my heels a bit, but I also can imagine how Riki got to the permanent option — morbidity associated with TME is high. I’m “young” (56), have an active lifestyle (singing, guitar, distance running, etc.), and a demanding corporate career (and a great family to support and insufficient assets to call it quits anytime soon!) so I’ve had to think about what would happen if I do surgery and face the kind of challenges he did. To be there for my family, and to enjoy the rest of my life, I have resolved to make the best of it if it comes to that. Maybe easier said than done, but I for one am super grateful for Riki’s story about how uses the stoma to pester his wife — I may have to copy that, at least with the temp ilio. (Though I think my wife would actually kill me ; ) For what it’s worth, there’s a cool young Youtuber/influencer named Hannah Witton who opted for a permanent stoma because of ulcerative colitis, and she’s posted lots of “real” content about the experience — and she certainly appears to lead an awesome, positive, and enjoyable life. It might be worth checking her content out. It’s not all sweetness and light, but it cheered me up a bit, for sure. So, yeah, these are tough challenges (some more than others), and I wish you all the luck in the world with your chemo, but I strongly believe there can be wonderful things in your future either way. At least, that’s the way I’m going to try to play it.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Jogey
Posts: 10
Joined: Sun Dec 09, 2018 5:24 am

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

Postby Jogey » Thu Jul 02, 2020 5:27 am

Hi Jolene,

The care oncology clinic is based in Harley Street London, but I can see they have a US website here at https://careoncology.com/ .
I take atorvastatin, metformin, doxycycline, mebendazole They are basically all re-purposed drugs that have been shown to counteract cancer and the program is designed to go well with the usual cancer treatments.
Please see further details on the website.

As regards aspirin, this is one of the things that Dr Charles Fuchs of Yale University mentions as well as many other things. See this article: https://www.yalecancercenter.org/patien ... 358_v1.pdf . I think his research is incredibly useful for any colorectal cancer patient to help reduce risk of recurrence.

Here's wishing you every success with your health! Jogey

Jogey
Posts: 10
Joined: Sun Dec 09, 2018 5:24 am

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

Postby Jogey » Thu Jul 02, 2020 6:15 am

Just to summarise off the top of my head the lifestyle changes that Dr Fuchs of Yale University mentions in the article to help improve survival chances for patients who already have colorectal cancer.

1) Daily low dose aspirin (although this needs to be done under medical recommendation and supervision due to risks of internal bleeding)
2) Vitamin D
3) Reduce sugary drinks
4) Eat tree nuts (but not peanuts which are not a tree nut)
5) drink four coffees per day
6) Omega 3 intake such as found in oily fish
7) In general have a diet high in fruits, vegetables, legumes, fish, poultry, and whole grains and lower in red meat, carbohydrates and refined grains.
8) Don't have a sedentary lifestyle: I have seen a video from a doctor at Memorial Sloane Kettering which recommends an hour long walk a day

I actually literally follow all of these recommendations. So far I have not had a recurrence on my watch and wait program at 17 months after radiotherapy. However it is impossible to say if these lifestyle changes have helped or not. I like to think they do. Certainly they have made me feel very well which is great.
I am not complacent as I am aware that the future is extremely uncertain but so far so good.

Hope this helps,

Jogey

Rikimaroo
Posts: 320
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

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

Postby Rikimaroo » Thu Jul 02, 2020 9:53 am

Roadrunner,

It is definitely the unknown and something we are not use to that puts us on edge and sometimes our thoughts are unclear on how to proceed. Who would of thought you can poop through your stomach. It's just amazing what doctors can do to save your life. This is why you have people like me and multiple others on this forum to share there experience and set your mind at ease. All of us at once were in your shoes and struggled of the thought process of not using the bathroom the normal way, it was GREEK to us. You just have to do what is best for you and your family.

I hope all works out for you. Temp Ileo is a bit different then a Colostomy (colostomy is more normal pooping) but ileo is more mushy slushy. Once you figure out all the ins and outs of it, you should be fine. You are going to have accidents and wake up with poop on you. It happened to me and eventually i figured it out and never happened again. Everyone is different. I never had an accident with my colostomy.

I hope W&W works out for you guys. Make sure you follow every step that PRS did if your institution permits, but you can make the calls.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
FolFiri 11/6 - 5 rounds
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
Maintenance Chemo begin 6/3/20 FolFiri

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Thu Jul 02, 2020 5:54 pm

I am having an mri on Monday.

My previous mri, taken after 5 weeks of radiation, capecetabine, and trial drug indicated that the tumor had been reduced from 6.6cm to 3.8cm.

Of the remaining 3.8 cm, there was significant necrosis and sloughing from 1- 7cm (of the rectum), corresponding to prior tumor with significant treatment effect, but the Dr. could not/would not quantify what % of the remaining tumor is persistent vs what percentage is dead/necrotic.

I am praying that the tumor has continued to dramatically shrink in the time between my last radiation treatment (on March 20) and Monday, and that FOLFOX can kill what currently remains.

I had my first of 8 scheduled FOLFOX infusions last Monday.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Thu Jul 23, 2020 10:34 pm

Is it unheard of to w&w with a stage IV diagnosis? DH has had an unbelievable response so far. He completed his 12th round of FOLFOX on 6/2. His liver resection was in February, halfway through. Colorectal surgery was discussed at that point, but was postponed due to scheduling conflicts.

The primary tumor had shrunk from over 5cm to about the size of a pimple after the first 6 rounds of FOLFOX. The surgeon said that he was in a small percentage where robotic surgery would be an option.

After the 12th round, the colorectal surgeons met to discuss the next steps. 100% recommended radiation. 50% recommended surgery after radiation. That’s right, half didn’t think surgery would even be necessary.

His radiology doctor says they don’t even know that any cancer is still present and the only reason he is eligible for radiation is they are all convinced he has no cancer outside of the primary tumor. He asked the radiology doctor what he would do. The doctor was not willing to offer advice since it wasn’t his job, but did say he felt he was not only in the small category of people who respond very well. He was in a small category of those people people who respond extremely well and if he had to estimate, would give him a 1% chance of recurrence after 10 years.

He just did his first radiation treatment this afternoon. It’s photon beam, 3D, with very modern equipment. They say proton beam is superior, but that it’s limited to certain types of cancer. Additionally, the new equipment should make the outcome of the radiation he’s receiving comparable to that of proton beam radiation.

He has 4 more sessions, one per day, with a break during the weekend.

He will most likely undergo the surgery, and I’m positive that will be his oncologist’s advice.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED

prayingforccr
Posts: 33
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Sun Jul 26, 2020 3:53 pm

Congratulations on the progress so far!!!

Because my tumor involves the sphincter, barring a ccr, I have been told that any surgery would leave me with a colostomy bag with which I am unwilling to live.

If I were given your husband’s options, I would opt for surgery if it did not involve an ostomy.

I will opt for any surgery that doesn’t leave me with an ostomy.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

User avatar
CRguy
Posts: 10235
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Sun Jul 26, 2020 9:34 pm

I won't preach to you or AT you my friend ... BUTT :shock:

there have been many long term survivors who elected to have ostomies in order to STAY alive
with a quality of life, to see them through to the next stage of their Journey.

Many of us have had temporary -ostomies to get us through what we needed to get through.

Please don't reject or give up on anything which could help you.

you have been here a month
I have been here since 2008

I WILL SURVIVE and do anything to see that continues.

Best wishes to you in whatever decisions you make, they are yours alone... BUTT
ALL options should always still be on the table, wherever you journey

On The Journey
In Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

hawkowl
Posts: 130
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

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

Postby hawkowl » Mon Jul 27, 2020 2:46 am

CRguy wrote:
there have been many long term survivors who elected to have ostomies in order to STAY alive
with a quality of life, to see them through to the next stage of their Journey.

Many of us have had temporary -ostomies to get us through what we needed to get through.

Please don't reject or give up on anything which could help


I agree totally! I had a very low tumor and did have a ccr so was offered w/w but this didn’t fit with my personality (I wanted more aggressive treatment to improve my odds). I have been a permanent ostomate for 5 years, have zero regrets, and live a good life with travel and activity. I rarely even think about my
Bag and probably spend an average of10 minutes a day dealing with it. Definitely keep your options open.
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Annie50
Posts: 95
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Tue Jul 28, 2020 10:35 am

Jogey wrote:Just to summarise off the top of my head the lifestyle changes that Dr Fuchs of Yale University mentions in the article to help improve survival chances for patients who already have colorectal cancer.

1) Daily low dose aspirin (although this needs to be done under medical recommendation and supervision due to risks of internal bleeding)
2) Vitamin D
3) Reduce sugary drinks
4) Eat tree nuts (but not peanuts which are not a tree nut)
5) drink four coffees per day
6) Omega 3 intake such as found in oily fish
7) In general have a diet high in fruits, vegetables, legumes, fish, poultry, and whole grains and lower in red meat, carbohydrates and refined grains.
8) Don't have a sedentary lifestyle: I have seen a video from a doctor at Memorial Sloane Kettering which recommends an hour long walk a day

I actually literally follow all of these recommendations. So far I have not had a recurrence on my watch and wait program at 17 months after radiotherapy. However it is impossible to say if these lifestyle changes have helped or not. I like to think they do. Certainly they have made me feel very well which is great.
I am not complacent as I am aware that the future is extremely uncertain but so far so good.

Hope this helps,

Jogey


Hi
I’m doing the same .. just gone past 2 years so should be decreased risk ? that’s has recent scans and sigmoid.. onwards we go ..

Annie

Annie50
Posts: 95
Joined: Mon Jul 16, 2018 3:44 pm

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

Postby Annie50 » Tue Jul 28, 2020 10:44 am

prs wrote:
Annie50 wrote:Hi Peter, thanks so much for your prompt reply .. roll on June then as that’s my 2 years .. is that for local and distant? Xxx

Annie, looking back at my treatment history, I had whole body CT and PET scans periodically during the first two years. After that it's been six monthly rectal MRIs and annual colonoscopies only. From this I have to assume the risk of distant metastasis is pretty much gone after two years.

We'll be breaking out the champagne for you in June, and that's not very far away at all. :D


Hi Peter
Just thought I’d let you know .. 2 year mark reached .. Champagne pop !! just had clear sigmoidoscopy and scans!! ..so hopefully risk decreases from here at least a reasonable amount ? Hope you are ok .. xxx

jsbsf
Posts: 52
Joined: Sat Aug 24, 2019 6:01 am
Location: San Francisco

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

Postby jsbsf » Tue Jul 28, 2020 9:44 pm

prayingforccr wrote:Congratulations on the progress so far!!!

Because my tumor involves the sphincter, barring a ccr, I have been told that any surgery would leave me with a colostomy bag with which I am unwilling to live.

If I were given your husband’s options, I would opt for surgery if it did not involve an ostomy.

I will opt for any surgery that doesn’t leave me with an ostomy.


Thanks prayingforccr.

I wish you didn’t feel that way about a permanent colostomy, but I do understand. A lot of people seem to get along well with theirs. I know you have heard that. It’s very personal. We all look forward to a ccr.

We were talking about it today. He just completed radiation number 4 of 5. He says the hardest part is keeping a full bladder throughout the ordeal.

We are in a strange place because they say they don’t even know if there was any active cancer before radiation, so I guess he might be NED. 5 months ago he was told he’d have the choice between a permanent colostomy and robotic surgery. He was pretty set on having the robotic surgery. Now he’s expecting watch and wait as a strong possibility, which I didn’t even think was an option for stage IV.

Our logic is now that since he would have opted for the sphincter sparing option then, he should opt for watch and wait, if that option is on the table, now. Also my theory is that even with the robotic surgery, there is still a chance, albeit less, there could be a recurrence.

The thing is, the damage to the lymph nodes is quite a bit more extensive than the tumor that is currently being treated. His quality of life is very good. He’s afraid even the robotic surgery will make a big difference since so much damaged tissue will have to be removed. I’ve read that that sort of outcome is sometimes enough to make people go back for a permanent colostomy. All that, plus the radiology doctor telling him he expected, after radiation, a 1% chance of recurrence after ten years. I don’t know how such a prediction could be made, but I’ll take it. The odds seem greatly in his favor.

I believe he will go with the surgery only if it’s strongly recommended. There’s nothing like regret.

He feels similarly about a permanent colostomy, unfortunately. I can’t reassure him, or make him feel differently about it. We always expected a permanent colostomy up until February. The tumor was large and very low, and in February his surgeon was reluctant to even give him that choice.
DH 61
2019
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: liver spot
9/16 MSS. MRI: 2 liver mets: 2.7 & 7mm
9/23 Port
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
Chemo break
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 radiation
10/2/2020 NED


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