Surviving radiation for rectal cancer

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Eleda
Posts: 246
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri Dec 21, 2018 5:34 am

Hi Susan,,, that's Great,,, I'm in in end of February,,,,
I'd be curious to see the diet involved,,, pictullarly because I've again gained 2st during Chemo,,,,
There are many diaticians , but I don't think exactly for out "condition"

Also my surgeon said he will stretch my rectum during reversal,,, even after a DRE, I get a bit of bleeding, so I'm curious to know if anyone has had this done,,,,

Also great news in the sex Susan,,, Can I ask if I were using the dialators??? ( :evil: )
I had a smear last week and was quite painful, so I'm hoping that will improve,,,
I need to find a man for use 3 times a week lol
Glad all is well

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

User avatar
susie0915
Posts: 904
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surviving radiation for rectal cancer

Postby susie0915 » Fri Dec 21, 2018 8:48 am

That is awesome news. . The watch and wait option is very interesting to me. Losing most of your rectum and having surgery causes a whole set of new problems. I have figured out what works for me but there are definitely lasting side effects from both the surgery and chemotherapy. I know there is an option of doing additional chemotherapy and no surgery as well. I know it is a tough decision, I wish you luck.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Caat55
Posts: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Fri Dec 21, 2018 1:00 pm

Eleda wrote:Hi Susan,,, that's Great,,, I'm in in end of February,,,,
I'd be curious to see the diet involved,,, pictullarly because I've again gained 2st during Chemo,,,,


ADELE X

Adele,
I was joking with my husband that I'm probably one of the only people that doesn't lose weight during chemo, I lost probably 20 lb when I was sick initially button backed up about 10. I'm not overweight but I'd love to take this opportunity to drop a few pounds especially if it makes the rehab better. I'll let you know what it looks like when I talk to The dietitian. My understanding is that it's basically a Mediterranean diet. There's walking and core strengthening exercises as well.
I'm putting it off to March cuz I have a ton of things I need to get finished at work before I feel okay about going out for an extended time. I treat infants and I want to make sure there's somebody competent to take care of them when I'm off on leave. It also gives me more time to get in shape. The doctor mentioned starting me on a fiber supplement immediately at the hospital to help things get formed. He talked about clustering and said that would be something that we would work on together as a team but it may take as long as two years. I have a lot of questions for his nurse when she comes back on Monday.
Susan
No dilators were discussed or prescribed, my gynecologist did give me hormones to help with the hot flashes and maybe they help as well?
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Eleda
Posts: 246
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri Dec 21, 2018 1:50 pm

Thanks Susan,
I'm post menopausal now so
I'm happy I'm over it so quickly,,,
They gave me dialators but FFS!!!!!
Not something I looked forward to :roll:

As u know it's a little bit,," tell them nothing" attitude till they have to then deal with it!!!! :evil:

I do want my bits back working if possible because I'm still not over the " hill" so it's something I think about a bit

Did you have a DRE since Ur surgery???
I'm curious is it only me that's seems to have the bleeding after hence ( tight arse lol )
Thanks
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sat Dec 22, 2018 12:23 pm

Adale,
I have had a DRE several times to check site of anastomoses, barium enema. Yes, it causes sore tissue and bleeding. I still pretty much only wear skirts as skin is so sore. I am really concerned about having to wipe. I am taking biotin to help with healing, use a cannabis salve rich with shea butter, coconut oils that I make for pain and healing.
I am hoping that 4 months more healing, really healthy diet will help but I typically eat well anyway. Time will tell.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Dec 27, 2018 11:29 am

lakeswim wrote:Annie....ps... you must be doing TNT AS WELL you are at a similar place in treatment as me!

Hi , I am really in shock .. you sort of don't know what it means ? Watch and wait does seem to be the new thing .. What is TNT ? When are your scans ? It was surreal seeing the photos with clear smooth bowel wall where that alien was!!!
Hope you ok ? How are you feeling? .. xxx Annie xxxx

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Dec 27, 2018 11:32 am

susie0915 wrote:That is awesome news. . The watch and wait option is very interesting to me. Losing most of your rectum and having surgery causes a whole set of new problems. I have figured out what works for me but there are definitely lasting side effects from both the surgery and chemotherapy. I know there is an option of doing additional chemotherapy and no surgery as well. I know it is a tough decision, I wish you luck.


Hi Susie where are you up to now ? If you had watch and wait option would you ask for chemo as belt and braces or would you just think that funolete response Makes it unnecessary ? They seem to do different in US .. so Confusing !!!! Very happy but wish I knew more ) any insights appreciated! Xxxx Anniexxx

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Dec 27, 2018 11:39 am

Eleda wrote:OMG ANNE
Thats amazing, couldn't have asked for anymore,,,,
Anxiety over for a while now lol
It shows dark on an MRI,,,,
Non surgical would be Watch & Wait!!!!!!!!!
Follow lakeswim,,, she's where u are ATM , so would be very helpful,,,,

There's pros and cons to both!!!!

Only con I can see with non surgical is anxiety of reacurance ( I personally couldn't deal with that)
I was throwing up the day before my sigmoid to check on shrinkage!!!!!!
I'm generally not anxious person,,, but when it comes to this cancer,,, I'm always afraid of my next scan etc

But on the flip side u won't have any of the possibility of LARS
Then again who knows how u will be after a reversal
No one knows until it's done!!!!

Uve a lot to think about here with life-changing concaquences either way!!!!

Only u can decide what's best for u
But definitely talk to people here who were n Ur position,,, because until Ur faced with it I don't think u can understand the predicament

I'm so happy with Ur good news,, Long may it last
Adele X

Hi Adele .. hope you are ok ? Yes I can't really believe it .. ! I sort of had crossed it off in my mind .. just assumed I wouldn't have complete clinical response !? Esp with him taking 8 biopsies ! As you say the worry of recurrence is always there and I am a bit confused about chemo assumed to be not needed ? Oh Adele so much to think about .. but I am feeling very lucky to have had such a complete response as I believe it must be good news whatever that response has been so good .. how are you doing with yours ? Xxxx Much love Annie xxxxx


viewtopic.php?f=1&t=53498#p423816

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Dec 27, 2018 12:28 pm

mozart13 wrote:Hi Annie!
W&W approach is changing.
Used to be only chemo/rad, risk was high, one doesn’t know if any microcell is left in the body, or not. That extra chemo is to wipe out those questionable microcells.

California was most advaneced, they have been doing this kind of approach for more than 10 years. Originally started in Brazil, so call Habr-Gamma, it has evolved since than.
Memorial sloan hospital from NY is lead hospital in big study when it comes to that kind of approach:
https://www.mskcc.org/clinical-updates/ ... alResearch

They call it Total neadjuvent therapy. Even people that don’t have complete clinical response and need surgery benefit from this kind of approach, as is very often dificullt to start and complete chemo right after surgery.

I did know that my cancer is gone after 25 sessions of chemo/rad,they call it complete clinical response. It was my choice to have extra chemo( folfox) after, would do it again regardless of symptoms.
I did a lot’s of research on my own.

Always check with your surgeon and oncologist what is best approch for you personally, at the end they are professionals.
Good luck to you!


Hi Mozart hope you are ok ? Don't know if you heard but I just had the news after my chemo rad that I had had a complete clinical response ! He even did 8 biopsies under EUA to check ! And all came back clear.. so offered watch and wait but not discussed anything else ., just obviously scanning and checking v often .. I remember you had extra chemo after .. did you have biopsies to check as well after radio chemo and complete response or was it just from scans ? Thanks Mozart xxx Annie xxx

lakeswim
Posts: 193
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Thu Dec 27, 2018 1:14 pm

Hi Annie and all. I had TNT. I am getting scans done next week (pelvic MRI but they also added chest CT as it hasn’t been done since I was diagnosed) and meeting with my surgeon. I think I may get a flex sig done in Jan too but I’m not sure the protocol and will need to confirm.

I hope I will have the option of W&W but it scares me. Both options (surgery and/or W&W) scare me for different reasons.

I also get genetic testing results back next week. It’s going to be an interesting month.

I’m trying to enjoy holidays and not think about it too much. Frankly, I feel pretty good and pretty “normal” — considering I had both chemo and chemo/radiation this year. My legs are pretty weak, my energy levels are unpredictable (though, at times, I have more energy than I’ve had in years!), my neuropathy is on/off (hands getting better slowly but feet still bother me), and I am trying to remember to use my dilators.

Anyway, as bad as 2018 was, I’d rather stay here (in the peaceful “eye” of the hurricane - with things feeling fairly “normal”) than move on to next steps — surgery and its aftermath - or whatever anxiety comes with W&W - but I know enough from this board to be thankful for having the option of being alive and I have to remind myself of that on a daily basis.

I’m interested, Annie, that you had a complete response after only chemo/rad. (Great news!!!) I didn’t know that was an option. I thought chemo was always part of the equation - just offered at different times (depending on your onc’s strategy). Guess it’s different, depending on your situation. I don’t see a signature for you do I don’t know what your situation is.

Happy Holidays to all!
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: 193
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Thu Dec 27, 2018 1:18 pm

Ps - Also interested in the biopsies. My onc said (when I asked about biopsies) that they wouldn’t fool with the tumor site if it’s clear as to not potentially spread anything. But I see others get the biopsies, so...? And how will they know it’s a pCR (right?) if they don’t do biopsies? More questions for surgeon, I guess.....
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: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Dec 27, 2018 3:50 pm

lakeswim wrote:Ps - Also interested in the biopsies. My onc said (when I asked about biopsies) that they wouldn’t fool with the tumor site if it’s clear as to not potentially spread anything. But I see others get the biopsies, so...? And how will they know it’s a pCR (right?) if they don’t do biopsies? More questions for surgeon, I guess.....


Hi lakeswim. I asked my colorectal surgeon re biopsies exactly that question about spread and he assured me that they way it's done it doesn't cause spread and he took 8 off me !! All clear .. ! I did think about it and sort of agreed with him that how would they definitely know no tesidual cancer cells if they don't ? they are The Christie which is a top cancer hospital so I hope they know what they are doing ! But I agree so confusing !? Xxx Annie xxx

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susie0915
Posts: 904
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surviving radiation for rectal cancer

Postby susie0915 » Fri Dec 28, 2018 9:17 am

This is my question about wait and watch. I had a sigmoid and pet scan after radio/chemo. The pet scan showed no cancer and the surgeon said all that was left was scar tissue after the sigmoid. I did have surgery and the pathology did show minimal residual cancer cells in the area where tumor was, but clear margins and 0/24 lymph nodes. So if no biopsies were done pet scan was NED, and sigmoid showed only scar tissue I definitely would've had a recurrence if was offered wait and watch. All the was offered to me was the possibility of no chemo after surgery depending on pathology.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Fri Dec 28, 2018 10:25 am

susie0915 wrote:This is my question about wait and watch. I had a sigmoid and pet scan after radio/chemo. The pet scan showed no cancer and the surgeon said all that was left was scar tissue after the sigmoid. I did have surgery and the pathology did show minimal residual cancer cells in the area where tumor was, but clear margins and 0/24 lymph nodes. So if no biopsies were done pet scan was NED, and sigmoid showed only scar tissue I definitely would've had a recurrence if was offered wait and watch. All the was offered to me was the possibility of no chemo after surgery depending on pathology.


Hi Susie
I don't really quite get it but I wlll find out ! I think the medical theory they are working to with watch and wait is something to do with if you have had a clinical complete response verified by biopsy as well as sigmoidoscopy then they assume that any lymph nodes will also have had a complete response so cancer cells gone. My questions is that some people seem to have had extra chemo after complete response as back up / belt and braces and some don't ? So I don't know why some do and some don't ?.. ! My consultant who is at The Christie which is a specialist centre for cancer and watch and wait took several biopsies of the area and around the area and all were clear for cancer cells or even dysplasia .. he said they don't allow watch and wait unless biopsies come back clear with no residual as well as looking via sigmoidoscopy under anaesthetic.. it's confusing!! Xx Annie xxx

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Fri Dec 28, 2018 10:27 am

Eleda wrote:OMG ANNE
Thats amazing, couldn't have asked for anymore,,,,
Anxiety over for a while now lol
It shows dark on an MRI,,,,
Non surgical would be Watch & Wait!!!!!!!!!
Follow lakeswim,,, she's where u are ATM , so would be very helpful,,,,

There's pros and cons to both!!!!

Only con I can see with non surgical is anxiety of reacurance ( I personally couldn't deal with that)
I was throwing up the day before my sigmoid to check on shrinkage!!!!!!
I'm generally not anxious person,,, but when it comes to this cancer,,, I'm always afraid of my next scan etc

But on the flip side u won't have any of the possibility of LARS
Then again who knows how u will be after a reversal
No one knows until it's done!!!!

Uve a lot to think about here with life-changing concaquences either way!!!!

Only u can decide what's best for u
But definitely talk to people here who were n Ur position,,, because until Ur faced with it I don't think u can understand the predicament

I'm so happy with Ur good news,, Long may it last
Adele X


viewtopic.php?f=1&t=53498#p423816


Adele, thank you so much for that thread it is sooo interesting about watch and wait ! So many different views ? Confused about need or not for chemo ? Hope you are doing wellxxx much love annie xxx


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