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

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Hopepray
Posts: 22
Joined: Fri Feb 14, 2020 9:48 pm

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

Postby Hopepray » Sat Sep 05, 2020 6:41 am

Just thought I ll update the thread since I have had so many of you answer my naive questions. Thank you for that first.

After considering W&W and all the inputs from you wonderful folks, we spoke to a few surgeons and med oncs and decided to get the surgery done.

Surgery was done well into 13th week after completion of preOP CRT.

We went with getting surgery done considering the initial staging.

Pathology report came back negative for any tumor cells and staging was ypT0N0M0. However the pathologist could only retrieve 5 nodes all of them negative. This I read about a bit, and found some studies that say that especially in Rectal CA the number of nodes retrieved after a extensive pre OP CRT can significantly reduce nodes retrieved from the avg of 12. Short course CRT has more nodes generally than longer course of 28x. The surgical margins looked quite on point for me at least.

It's been now two months after surgery and with consultation of our oncologist we are getting on the adjuvant CapOX of 3 cycles and possibly Xeloda for few cycles after again based on the initial staging etc....
Worried a bit about Oxi's sides but it's just the first day today.

I hope and pray for all of you for a quick recovery!
Caregiver to mom
54 y, dx 2/20, T3N1BM0,14 cms from AV. G1
CEA: 2.8 2/10/20;; 2.3 4/20;;1.3 6/20, 4.7 12/20 aft chemo,2.33 2/21
CT and MRI show the tumour + GGN Lung + Hemangioma Liver.
EMVI absent
Genetics not done
28x/Cap/ CRT 28/Mar/20
MRI- 4/20- no mass seen, lymph node in peri-rectal space.
Pet/CT 6/20 no nodes or rectal mass, no Glass nodule in lung. Hemangioma same
Flex Sig w/ biopsy 6/20 : no mass, scar, biopsy -ve
LAR, no ileo 7/1/20
CapeOx 4x begin 9/5/20
Pet ct: 2 new 4mm nodules right lung. WW

FightCRC
Posts: 56
Joined: Fri May 25, 2018 10:39 pm

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

Postby FightCRC » Sun Sep 20, 2020 12:52 am

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


You need to look up LARS (low anterior resection syndrome). You are not alone, there are others who also believe a colostomy is the worst possible outcome, worse than death. I can tell you from studying countless patients who decided to forego surgery, who also couldn't bear the idea of a colostomy, that a colostomy is not the worst possible outcome from a rectal tumor. Far from it. Something they eventually came to realize, as well...but too late. I do hope you dig deeper on the subject. Stage III is still potentially curable.

FightCRC
Posts: 56
Joined: Fri May 25, 2018 10:39 pm

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

Postby FightCRC » Sun Sep 20, 2020 7:08 pm

I'm certainly not opposed to the idea of alternative treatments. Whatever has a chance of working, is worth trying. The problem is, there's nothing alternative that's shown ANY significant efficacy at all for late stage rectal cancer. Joe Tippens Protocol, Chris Beat Cancer, Gerson Therapy, Care Oncolocy Clinic, Jane McClelland's How To Starve Cancer, hyperbaric chamber, mistletoe...none of it. Have not come across a single rectal cancer patient who has been cured. I don't expect you to take my word for it, but your own research will yield the same results.

The good news is you're at the top center in the US for W&W. Who are your doctors at MSK? Two key lead researchers at MSK for W&W are Dr. Julio Garcia-Aguilar and Dr. Philip Paty. W&W protocols in the US are almost entirely derived from their research/data. If you haven't seen either one yet, I most especially recommend Dr. Paty. He's perhaps the top colorectal surgeon in the country, and one of his specialties is sphincter-sparing surgery. An excision may be an option. Do try your best to see him, he's an amazing doctor and will talk it all through with you. It may not have to be cCR or bust. He'll respect whatever you decide. Best of luck to you.
Last edited by FightCRC on Mon Sep 21, 2020 12:38 am, edited 1 time in total.

jsbsf
Posts: 107
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 » Fri Oct 02, 2020 6:15 pm

I wanted to give a quick update on the status of DH, mostly to give some hope to those out there who were diagnosed with stage 4 CRC.

Its been over a year of chemo and radiation treatment with a laparoscopic surgery halfway through. The radiation was intense and covered a much larger area than the colorectal surgeon was expecting.

Today he went in fully expecting to be recommended surgery. Two types of surgery were previously on the table. One would result in a permanent colostomy and the other was robotic assisted, and would preserve bowel function, but would most likely have at least some negative impact on quality of life.

This afternoon DH met the surgeon who performed an examination and determined that all that was visible is a small scab. He could not declare him as cured, but said that for practical purposes he is, and that there is no sign of cancer.

The doctor said that SOC for stage 4 patients calls for surgery following treatment, but in his case - which seemed pretty specific to him - W&W would be offered as an option. So he was given three options, that one along with those other 2.

DH asked him what he would recommend in his case, and he leaned toward W&W. The caveat is that if there is a recurrence, he would most likely require the permanent colostomy. The surgeon always seemed to favor the permanent colostomy due to the quality of life related issues that most likely would result with the other surgery.

Meanwhile they will observe his progress every 3 months for the time being. So watch and wait begins for him today.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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: significant improv.
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

prs
Posts: 201
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 » Sun Oct 04, 2020 11:07 pm

@jsbsf, congratulations on your husband's complete clinical response. It looks like you've had quite a journey to get here, but to this point it all seems to have worked out extraordinarily well.

Welcome to the W&W club, and always remember the emphasis is on the "Watch" part! Those quarterly follow up visits are all important. IIRC my quarterly exams consisted of a flex sig plus an MRI specially designed to look at the rectum in great detail. Also annual colonoscopy and CT scan of chest, abdomen, and pelvis.
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

jsbsf
Posts: 107
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 » Fri Oct 09, 2020 7:20 pm

Thank you prs. You were inspirational, and I followed your story not expecting to ever make it to W&W. I told him about your side effects and how you mentioned later how you felt after recovery. How important it is to stay the course.

It seems like he’s one of very few, stage 4, to be given the W&W option. The doctors seem pretty convinced his cancer is gone.

He’s supposed to go in for quarterly checkups, I believe for the next 2 years. The rectal surgeon mentioned that this is not the normal standard of care, but they are not bound to that. After the 2nd year, he continues his checkups semiannually until the 5 year mark.

I know it’s not a done deal, but it’s the first time in over a year where we can both relax and think of all the other things in life.

I look forward to reading that many others have the news we received Friday.

Peter, November is right around the corner, and I’ll be thinking about you. Staying positive was truly half the battle.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, 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: significant improv.
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 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED

prs
Posts: 201
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 » Sun Oct 11, 2020 9:40 pm

jsbsf wrote:Thank you prs. You were inspirational, and I followed your story not expecting to ever make it to W&W. I told him about your side effects and how you mentioned later how you felt after recovery. How important it is to stay the course.

It seems like he’s one of very few, stage 4, to be given the W&W option. The doctors seem pretty convinced his cancer is gone.

He’s supposed to go in for quarterly checkups, I believe for the next 2 years. The rectal surgeon mentioned that this is not the normal standard of care, but they are not bound to that. After the 2nd year, he continues his checkups semiannually until the 5 year mark.

I know it’s not a done deal, but it’s the first time in over a year where we can both relax and think of all the other things in life.

I look forward to reading that many others have the news we received Friday.

Peter, November is right around the corner, and I’ll be thinking about you. Staying positive was truly half the battle.

Thank you, your post made my day! Now comes the challenge of getting your husband's body back into shape so he (and you!) can start to enjoy life again.

I exercised regularly before my diagnosis and was in pretty good shape. However I never felt up to exercising during treatment, and in combination with the effects of the radiation and chemo I was in really poor shape at the end. About a month after treatment we went to Vegas and the plan was to spend the first morning strolling round the casinos. After about an hour my legs just gave out, I had to sit down and we eventually walked back to the hotel in short stages.

I thought I would be able to get back in shape quickly but that proved impossible. All my blood counts bottomed out at or just below the low end of the normal range, and have stayed there ever since. Apparently there is a lot of blood producing bone in the pelvic area and the radiation has a permanent effect on it. It took me ages to figure out I was never going to be able to exercise at the rate I did before. In fact I discovered that if I overdid it, the lack of oxygen would actually kill muscle tissue rather than build it, and I was actually going backwards rather than forwards.

I have found that slow but steady progress is the best way to do it. Exercise at a rate and for a time that your body is comfortable with. If your muscles get stiff then back off. Then slowly increase the amount of exercise over time.

Hope this helps.
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

roadrunner
Posts: 452
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Wed Oct 14, 2020 5:11 pm

Since I’ve posted on this thread before, I thought I’d post an update, and I do have a question or two at the bottom for you W&Wers.

To summarize, I was diagnosed as Stage 3 RC with 2-3 local nodes likely positive (I was told 70%/30% likelihood that these were positive), I did 4 cycles of FOLFOX last fall as part of TNT. Jumped to chemorad due to side effects (huge DVT, wild liver enzymes, arrythmias, neutropenia, etc.) and excellent initial response (reduction of 70-80%). Did 60Gy rad with Xeloda, also did an extra 4 weeks of Xeloda. MRI in the spring showed a “near cCR” but was not conclusive. Flex sig showed little palpable tumor left, but not quite the flat white scar desired for W&W. A biopsy was performed and the results were negative. My surgeon thought the best course was TME surgery, but staged with a periopetative biopsy first after transanal excision (all part of one procedure). After consultation with my surgeon and oncologists, I underwent the 4 remaining cycles of FOLFOX (to complete TNT), and despite some weird bleeding issues and the familiar arrythmias, I completed those about 6-7 weeks ago. My oncologist advised that I “had a cCR” after a rectal exam, but that my surgeon’s assessment should guide next steps. Another flex sig was done, and nothing palpable was found, just a red area. My surgeon scheduled a transanal excision to investigate the remaining tissue, but this time without a likely TME procedure to follow in the same procedure.

So I’m now scheduled for a TAE. My question is: Do any of you have experience with this approach — excision then possible W&W? If so, are there any things I should be looking for/expecting, before, during, or after the procedure? For example, am I likely to get a clear choice after the tissue is tested, or might it be a matter of degrees of risk? Obviously, I’d love to avoid the big surgery but my main point is to live through this challenge. Any wisdom/experience is welcome. Thanks!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

prs
Posts: 201
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 Oct 16, 2020 2:18 pm

roadrunner, if I remember correctly there is discussion of these procedures in this thread. You'll likely have to read thru the entire thread to find them.

If those posts don't give you enough, you could try private messaging those contributors for more info.
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

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Mon Oct 19, 2020 12:31 pm

Hi road runner - if you do a search on excision I believe you will find a lot of information on this thread. There was one poster who was very pro excision though I cannot remember her nickname. I think it worked very well for her.

Before I was declared a WW case, I inquired about excision after reading some posts here with my doc and he was not keen citing issues of recovery and pain. He mentioned something that there is always the arguement that the excision is either not wide enough or not deep enough for a thorough CCR confirmation. So he would rather triangulate a regular sig flex (with biospy) with other tests and scans for confirmation.

In the end we did a triangulation of results with a combination of a regular sig flex (with biopsy test) + MRI/PET + rectal ultra sound + rectal exam and that I would be declared WW only if all results came back negative. Saying that, I was fortunate to be very well covered with insurance and it was a luxury to be provided the whole kitchen of tests and scans. My medical facilities also had all the machines and equipments in one location. It may not be the case for everyone and you will have to discuss with the doc what are the best ways of CCR confirmation given various circumstantial restrictions.

Reading through the threads over the last 2 years, I gathered that different doctors seems to have different school of thoughts on what benchmark to use for the declaration of WW. It has evolved quite a bit since Dr Habr-Gama days when she pioneered the concept. For mine, he requires at least 3 negative returns from all the tests/scans/checks but that's just my doc.

Good luck and all the best ! 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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sun Nov 01, 2020 4:26 am

That's great news! Continue to 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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

roadrunner
Posts: 452
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Thu Nov 05, 2020 5:49 pm

Figured I’d update this group (that I keep trying with all my might to join): WARNING: I’m going to try to keep this post lighter — unlike my usual overly loquacious and sober posts — in part to keep the ol’ chin up, but it involves lots of references to a number of distressing bodily functions, so beware!

Resting at home after today’s transanal excision (“TAE”) and can report the following: The op itself was short, with generally mild post-op pain so far, mostly from the anus getting “stretched” to accommodate the instrument tube (I have a suspicion that they ran a mobile rocket launcher or bridge suspension cables up there just to see if they could). I should also note that when your morning starts off on your bedroom floor at 4 a.m. with two self-administered enemas, and that’s the *highlight* of the day, you need to take stock of things in a serious way.

I did have a really poor response to the general anesthesia, though, which involved tons of vomiting, including about a liter of liquid into a grocery bag on the way home (My poor, poor wife — though I guess I got her back for puking (mostly) out of the passenger door of my car 20 years ago whilst dressed as Gene Simmons (it’s a long story — we were dating, a Halloween party was involved, and she did make a really cute Gene Simmons, so . . .. Anyway, I told you the enemas were the pinnacle!)). This laudatory experience has seemed to generate lots of heart palpitations or arrhythmias (or maybe it was the massive dehydration, the opioids, the pepcid on a long empty stomach, stress, the anesthesia itself, the vagus nerve (irritated perhaps))? This stuff seems to be improving, but I will continue to watch it closely.

So now I will await the pathology. Currently, the score is: rad onc: “cCR”; biopsy: negative; MRI: negative (but with a tiny bit of grey); awesome, internationally known surgeon: “I still don’t like the look of it” (flat red scar where the tumor used to be) — “you are really in a grey area”) So who knows? It will be interesting for sure. I will update this group, though I don’t promise to try to be funny again!
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Thu Nov 05, 2020 6:33 pm

roadrunner wrote: . . . . Resting at home after today’s transanal excision (“TAE”) and can report the following: The op itself was short, with generally mild post-op pain so far, mostly from the anus getting “stretched” to accommodate the instrument tube (I have a suspicion that they ran a mobile rocket launcher or bridge suspension cables up there just to see if they could) . . . .


I wish you all the best with good results, . . . BUTT you had me laughing out loud with that comment. OMG :shock: ! My husband works at home since the virus shut everything down back in March. Sometimes when he is finished with work, I get "okay, what was so funny that got your attention"?. Today will be one of those days. :mrgreen:

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

prs
Posts: 201
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 » Thu Nov 05, 2020 9:47 pm

roadrunner wrote:Figured I’d update this group (that I keep trying with all my might to join): WARNING: I’m going to try to keep this post lighter — unlike my usual overly loquacious and sober posts — in part to keep the ol’ chin up, but it involves lots of references to a number of distressing bodily functions, so beware!

Resting at home after today’s transanal excision (“TAE”) and can report the following: The op itself was short, with generally mild post-op pain so far, mostly from the anus getting “stretched” to accommodate the instrument tube (I have a suspicion that they ran a mobile rocket launcher or bridge suspension cables up there just to see if they could). I should also note that when your morning starts off on your bedroom floor at 4 a.m. with two self-administered enemas, and that’s the *highlight* of the day, you need to take stock of things in a serious way.

I did have a really poor response to the general anesthesia, though, which involved tons of vomiting, including about a liter of liquid into a grocery bag on the way home (My poor, poor wife — though I guess I got her back for puking (mostly) out of the passenger door of my car 20 years ago whilst dressed as Gene Simmons (it’s a long story — we were dating, a Halloween party was involved, and she did make a really cute Gene Simmons, so . . .. Anyway, I told you the enemas were the pinnacle!)). This laudatory experience has seemed to generate lots of heart palpitations or arrhythmias (or maybe it was the massive dehydration, the opioids, the pepcid on a long empty stomach, stress, the anesthesia itself, the vagus nerve (irritated perhaps))? This stuff seems to be improving, but I will continue to watch it closely.

So now I will await the pathology. Currently, the score is: rad onc: “cCR”; biopsy: negative; MRI: negative (but with a tiny bit of grey); awesome, internationally known surgeon: “I still don’t like the look of it” (flat red scar where the tumor used to be) — “you are really in a grey area”) So who knows? It will be interesting for sure. I will update this group, though I don’t promise to try to be funny again!

I think for sure you have the right attitude, and your chin is definitely up! :lol:
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

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Sat Dec 12, 2020 1:27 pm

Hello all, just checking in to say hello for a bit.

My next test will be in Jan 2021 and if pass, I will have hit the 2 years mark. Fingers crossed. It's been 2 years since I have been lurking around. Always grateful to all on the board here !

Life has been fairly well at least on the surface of things but my mood has taken a hit with the ups and downs. I feel like I have never been the same ever since I went through chemo. The psychological trauma still lingers around, mundane minor setbacks can seem to trigger a panic attack in me these days followed by days of downward depression. I know I should be grateful for being on the WW to date and to be honest, I'm not sure what's happening to myself. For the first time in my life, I experienced what panic attacks feel like.

I was a total psychological wreck the months following the completion of my chemo but I had been discharged from my counseling sessions about 6 months ago as I was confident I was managing and recovering well.

These days, I take a lorazepam (Ativan) now and again whenever the panic attack sets in. It seems to help. It's running out soon and I feel too embarrassed to return to my oncologist to ask for more. Not even sure why I'm feeling that. Sigh. Spouse said maybe I should revisit the counselor again but I feel so "guilty" for having to return. It feels like a kid who did not do well upon graduation and now returning to school to repeat another year, I'm not sure if I'm up for the whole process again. I'm starting to wonder if mid-life crisis visited.

Does any WWers have any similar psychological issues to share or is it just life as usual for most of you? Sorry for the rant.
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 - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !


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