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

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prayingforccr
Posts: 70
Joined: Sun Jun 28, 2020 4:44 pm

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

Postby prayingforccr » Mon Dec 21, 2020 10:51 pm

mozart13 wrote:Just stopping by, 4 years since beginning.
MRI,CT and colonoscopy still remain negative.

Thank you prs for starting this tread, a lot's of good info and support.

Happy Holidays and good health to all !


My hero!!!

May I be as fortunate 8)
Nov 2019: colonoscopy
Dec 2019: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2020: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2020: sigmoidosvopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2020: began 8 treatmentsFOLFOX
August 2020: ct scan reveals scarbed reduced to 2.7cm CEA is 1.5
Nov 2020: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.

Jolene
Posts: 166
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Tue Dec 22, 2020 10:01 am

Hey Mozart, thanks for checking in! Congrats on your 4th year! Wishing you all the best towards the 5th year.

Indeed, PRS's thread has given us WWers so much to learn from and to hope for!
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

prs
Posts: 179
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 Dec 24, 2020 12:00 pm

Jolene wrote:Thank you PRS for your encouraging and supportive words.

As my anxiety tablets were finishing soon, I checked in with a general doctor wondering if he could prescribe me some more to help overcome random panic attacks. He said it is not uncommon to experience post-traumatic stress for cancer survivors, so I felt a little more at ease hearing that. He prescribed 20 more tablets but mentioned that should I start to become dependent I have to check in with him again. My next task would be to check in with the counselor again. Once again, thanks for the comforting words.


Hi Jolene, I'm very glad to see you are feeling more optimistic. I remember the anxiety every time I had to go for one of my quarterly check ups. All I can say is it does get a lot easier as time passes. The anxiety never totally disappears but the more times you go, the more it becomes routine.

Over time my way of dealing with all this has kind of boiled down to "Control what I can control, and don't worry about the stuff I can't control". I firmly believe that hope is half the battle, so you have to live your life hoping for the best, and knowing the odds you've got this thing beat are well in your favor.

By "Control what I can control" I mean make sure your are getting all the appropriate W&W flex sigs, MRIs, CETs, blood tests etc as needed and in a timely manner. Don't rely on the doctors to remember to schedule everything. Also make sure you are eating well, and getting enough exercise. This is what you yourself can control, so if you have made sure you are doing all this, then you can give yourself permission to stop worrying about the stuff you can't control. Go out and enjoy living your life!

Jolene, I'm sorry if this stuff is pretty obvious. We are all in this together, there is no formal protocol for being on W&W. Sharing our issues with each other on this thread and discussing how we deal with them is all part of this learning process. This is how we can help each other and those who are just starting their journey.
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

prs
Posts: 179
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 Dec 24, 2020 12:05 pm

mozart13 wrote:Just stopping by, 4 years since beginning.
MRI,CT and colonoscopy still remain negative.

Thank you prs for starting this tread, a lot's of good info and support.

Happy Holidays and good health to all !

Thank you for the kind words.

Merry Christmas and Happy New Year to all :!: :!: :!:
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: 166
Joined: Wed Jan 23, 2019 10:17 am

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

Postby Jolene » Tue Jan 19, 2021 11:41 am

I'm officially 2 years in the clear. Yay! All came out clear for MRI/ CT / Flex scope / Biopsy / Blood test !

It has been tough and I'm exhausted but it's another year closer to the 5 year mark!

White blood cell count is low though which is strange, probably a side effect of all the chemo and radiation done? I have to speak to the oncologist about it soon.

I will forever be grateful to this amazing forum and everyone who contributed with their knowledge, experiences and encouragement. I'm not sure what I would be like without this community.
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

jsbsf
Posts: 55
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 Mar 30, 2021 9:11 pm

There was so much sad news when I came here in August 2019 when DH had his colonoscopy. The long term NED posts made me envious, but gave me hope.

The last treatment was late July 2020. It was a 5 day radiation session that covered the entire affected area (low rectal). The last of twelve FOLFOX infusions was on 6/2/2020. Liver resection for 2 mets was in two separate appointments, about a week apart in Feb, halfway through the chemo. That was around the time he started feeling like he might have a chance.

Pretty much all the way through, we both expected a permanent colostomy. I was only concerned about how he would feel with it, and otherwise a lot of people here who have permanent ones made me a lot more comfortable with that. He just wasn’t too crazy about the idea of having one.

Radiation was the hardest for him. I don’t think the oncologist knew just how large of an area was covered, since he originally planned for surgery. He was housebound for two weeks, and only left the house to walk around outside for a week or so more. It took more than another month for him to start feeling like he could go to the grocery store. We weren’t sure if he’d ever regain his ability to hold it, since there was always very little warning.

Originally they expected the major surgery that would require a permanent bag. Then they offered a robotic arm surgery that would leave his rectum intact for the most part, but were unsure of how his quality of life would be. Finally, they agreed that his progress was so good, the radiation wold be the final treatment.

His first exam after the radiation was in early October where the colorectal surgeon agreed to let him watch and wait. Being stage IV, that is considered very rare, but know that it is possible. Since then, he goes every three months for a rectal exam, and every three months for a CT scan. He’s due for his first follow up colonoscopy sometime this year. So far they are giving him a clean bill of health.

As far as the radiation, we were both unprepared - especially since we didn’t think it would be an option. It is really tough on your immune system and I believe it stays in the body for a very long time. He feels fine now. Although there is permanent damage and scarring, he can come and go as he pleases with no fear of an accident.
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

prs
Posts: 179
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 » Sat Apr 03, 2021 4:35 pm

Jolene wrote:I'm officially 2 years in the clear. Yay! All came out clear for MRI/ CT / Flex scope / Biopsy / Blood test !

It has been tough and I'm exhausted but it's another year closer to the 5 year mark!

White blood cell count is low though which is strange, probably a side effect of all the chemo and radiation done? I have to speak to the oncologist about it soon.

I will forever be grateful to this amazing forum and everyone who contributed with their knowledge, experiences and encouragement. I'm not sure what I would be like without this community.


Jolene, I somehow missed your post. What great news, and many congratulations!
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

prs
Posts: 179
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 Apr 04, 2021 12:05 pm

jsbsf wrote:There was so much sad news when I came here in August 2019 when DH had his colonoscopy. The long term NED posts made me envious, but gave me hope.

The last treatment was late July 2020. It was a 5 day radiation session that covered the entire affected area (low rectal). The last of twelve FOLFOX infusions was on 6/2/2020. Liver resection for 2 mets was in two separate appointments, about a week apart in Feb, halfway through the chemo. That was around the time he started feeling like he might have a chance.

Pretty much all the way through, we both expected a permanent colostomy. I was only concerned about how he would feel with it, and otherwise a lot of people here who have permanent ones made me a lot more comfortable with that. He just wasn’t too crazy about the idea of having one.

Radiation was the hardest for him. I don’t think the oncologist knew just how large of an area was covered, since he originally planned for surgery. He was housebound for two weeks, and only left the house to walk around outside for a week or so more. It took more than another month for him to start feeling like he could go to the grocery store. We weren’t sure if he’d ever regain his ability to hold it, since there was always very little warning.

Originally they expected the major surgery that would require a permanent bag. Then they offered a robotic arm surgery that would leave his rectum intact for the most part, but were unsure of how his quality of life would be. Finally, they agreed that his progress was so good, the radiation wold be the final treatment.

His first exam after the radiation was in early October where the colorectal surgeon agreed to let him watch and wait. Being stage IV, that is considered very rare, but know that it is possible. Since then, he goes every three months for a rectal exam, and every three months for a CT scan. He’s due for his first follow up colonoscopy sometime this year. So far they are giving him a clean bill of health.

As far as the radiation, we were both unprepared - especially since we didn’t think it would be an option. It is really tough on your immune system and I believe it stays in the body for a very long time. He feels fine now. Although there is permanent damage and scarring, he can come and go as he pleases with no fear of an accident.

Congratulations on your DH's recovery. I think he might be the first Stage IV to make it onto W&W. Just like your DH I found the radiation burn to be the worst, particularly the couple of weeks after the last treatment. A bowel movement was incredibly painful, I remember having to go lie face down on my bed with the curtains drawn and just try to ride it out. You start wondering if the treatment isn't worse than the disease, and if it's really worth it. Of course that pain does go away, and that's when you decide it was worth it.

I don't believe the radiation stays in your body for a long time, but I believe some of its effects on your blood counts are just about permanent. It's five years now and all my counts are stable at, or just below, the low end of the normal range. They were all in the middle of the normal range before treatment. The low counts have reduced my ability to exercise.

The effect on your rectum does slowly improve over time, I'm just about back to normal after five years, and my surgeon has difficulty finding any scar tissue left by the tumor. It was well over a year before I stopped having to respond to the urgent need to prevent an accident. I did find if I was outside with nowhere to go, I could stand up perfectly still and focus my entire concentration on holding it in. It would take a few minutes but the urge would eventually go away. :)

Hope everything continues to work out great for your hubby, for sure the worst is over!
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

Cnotesdip
Posts: 1
Joined: Tue Apr 13, 2021 8:25 pm
Facebook Username: Cristian.tejada

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

Postby Cnotesdip » Wed Apr 14, 2021 6:41 am

I was diagnosed with a very low tumor my doctor told me about this procedure because I didn’t want to get the colonstomy procedure done, so we did radio therapy along with xeloda 7 pills per day on radiation days they gave me 28 sessions of radio the tumor slowly died 3 months later it was completely gone and whatever was left was removed by my proctologist in a small procuedure which tested negative on a biopsy, a year later the cancer had moved to my lungs.
May-2019 Early stage CRC found during colonoscopy CEA 15.82 18mm x 11mm
April-2019 Xeloda 7 pills daily on radiation days I got 28 sessions of Radio therapy CBD OIL
Aug-2019 CEA 1.94
Sep-2019 CEA 1.80
Oct-2019 9.5mm x 2.2mm Fibrosis
Nov-2019 Surgery Fibrosis Negative on Biopsy CR
Feb-2021 CEA 7.81
Mar-2021 CEA 11.00 PET CT Hyperbolic Nodule in right lung lube
May-2021 Lung CT Biopsy Adenocarcinom
May-2021 PX Immunohistochemical mCRC Adenocarcinom Stage 4
April-2021 12 Folfox Sessions starting

prs
Posts: 179
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 Apr 16, 2021 2:55 pm

Cnotesdip wrote:I was diagnosed with a very low tumor my doctor told me about this procedure because I didn’t want to get the colonstomy procedure done, so we did radio therapy along with xeloda 7 pills per day on radiation days they gave me 28 sessions of radio the tumor slowly died 3 months later it was completely gone and whatever was left was removed by my proctologist in a small procuedure which tested negative on a biopsy, a year later the cancer had moved to my lungs.

So sorry to hear about your metastasis to the lungs. You note you had chemoradiation treatment but haven't said if that was followed up with a course of mop-up chemotherapy. One thing we've noted here so far is there has been a much higher success rate with those of us who had the mop-up chemo compared to those of us who didn't.

The theory being the mop-up chemo knocks out any stray cancer cells that were not killed by the radiation, and destroys them before they find a new home in your body and start to multiply

My mop-up treatment was six months of Xelox, but I could have chosen six months of Folfox.
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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