Surviving radiation for rectal cancer

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susie0915
Posts: 917
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 10:47 am

Annie50 wrote:
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


Having the biopsy I think is critical. I know it is not guaranteed cancer cells did not get in bloodstream, but at least no cells are detected in original tumor area. I know I was shocked when my surgeon told me all that was left was scar tissue after the sigmoidoscopy and the pet scan detected no cancer. But obviously if biopsies would've been done I still would've needed surgery. I was thrilled with the chance of no chemo after surgery. But I did 6 rounds and was doable. I am not sure why some doctors don't recommend more chemo since cells could get into bloodstream, that was the reasoning my oncologist gave me after surgery even though I was considered NED.
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
5/19 CT NED, CEA <.5

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri Dec 28, 2018 2:09 pm

For what it's worth Anne, I'd ask for chemo if it was me, as an extra incase of any micromatastiss,the new protocol now is only 3 months ( 6 session) so very doable, without any long term effects" so far" I did 2 5fu on its own (easy on its own )
And 6 folfox ( doable)
I don't envy Ur headspace ATM , I'm sure it's a head melt, but it's still amazing I've had a complete response,,,

I'm just waiting my date in February,, TBH, reading Mike NH progress, I'm dreading it, but worst case scenario,, I'll have to replace the bag :cry:

Fingers crossed, that won't be necessary!!!
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: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sat Dec 29, 2018 4:58 pm

Annie50 wrote:
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.

Annie xxx


Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan
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
PET NED 12/18
Clear Colonoscopy 2/19

MCK
Posts: 7
Joined: Thu Dec 27, 2018 9:17 am

Re: Surviving radiation for rectal cancer

Postby MCK » Sat Dec 29, 2018 5:49 pm

Caat55, trying to grasp what your last post means. Are you saying you can have clear scans and biopsies and yet still have cancer? I just had a resection and pathology came back clean (10 lymph nodes and margins all clear; no residual). However another poster said her scans and path were all clear, and yet sonogram found a tumor. Sorry this is all new to me.
51yo mom of 4
DX 11-30-18
18mm poorly differentiated adenocarcinoma
Pelvic MRI 12-5-18 NED outside colon
12/18 lower anterior resection
12/24 pathology: 0/6 lymph nodes
Margins clear
T1N0M0G3
2/11/19 Abdominal CT: sub-cm liver lesion
Waiting on MRI

Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Dec 31, 2018 4:17 am

MCK wrote:Caat55, trying to grasp what your last post means. Are you saying you can have clear scans and biopsies and yet still have cancer? I just had a resection and pathology came back clean (10 lymph nodes and margins all clear; no residual). However another poster said her scans and path were all clear, and yet sonogram found a tumor. Sorry this is all new to me.


Hi I had a complete clinical response and the surgeon took biopsies to check and all were clear. I think it is a risk but as you have just pointed out there is a risk whatever .. tough decisions ? .. I think my surgeon wouldn't let you go watch and wait without biopsies .. and just rely on scans.. so many views !

Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Dec 31, 2018 4:20 am

Caat55 wrote:
Annie50 wrote:
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.

Annie xxx


Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan


Hi Susan
Do they normally offer chemo if all lymphs clear ? Are you in US ? Xxx Annie xxx

AmyG
Posts: 85
Joined: Tue Dec 25, 2018 8:08 pm

Re: Surviving radiation for rectal cancer

Postby AmyG » Mon Dec 31, 2018 10:46 am

When my tumor was removed, they staged me as 2a, I think? None of the 18 lymphnodes were involved. One oncologist wanted to start me immediately on 6 months of chemo, another suggested a watch and wait approach.

However, we'd known since before my bowel resection there was a spot on my liver, but since my nodes were clear it was assumed it was something benign but still needed to be ruled out as a met.

We were going with the wait and watch before I got upgraded to stage 4!
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

Caat55
Posts: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Wed Jan 02, 2019 2:24 pm

Annie xxx[/quote]

Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan[/quote]

Hi Susan
Do they normally offer chemo if all lymphs clear ? Are you in US ? Xxx Annie xxx[/quote]

My oncologist said he felt surgery and chemo were best options. He has had patients who have had cancer return and never know why. I decided to give it everything they had in arsenal a go.
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
PET NED 12/18
Clear Colonoscopy 2/19

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Sun Jan 06, 2019 8:17 pm

AmyG wrote:When my tumor was removed, they staged me as 2a, I think? None of the 18 lymphnodes were involved. One oncologist wanted to start me immediately on 6 months of chemo, another suggested a watch and wait approach.

However, we'd known since before my bowel resection there was a spot on my liver, but since my nodes were clear it was assumed it was something benign but still needed to be ruled out as a met.

We were going with the wait and watch before I got upgraded to stage 4!


Amy,

I'm in disbelief of the situation you are in. My heart goes out to you. Such a tough road. You sound like a very strong person! I am curious....I had a spot on my liver but they did a biopsy and it was "nothing." I assume they can't check your post because of the baby?

I will find out Friday if I have the WnW option.
50 - F - Mom
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 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Jan 09, 2019 3:22 pm

Hi how are you getting on ? Xxx Annie xxx

Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Jan 09, 2019 3:23 pm

Eleda wrote:For what it's worth Anne, I'd ask for chemo if it was me, as an extra incase of any micromatastiss,the new protocol now is only 3 months ( 6 session) so very doable, without any long term effects" so far" I did 2 5fu on its own (easy on its own )
And 6 folfox ( doable)
I don't envy Ur headspace ATM , I'm sure it's a head melt, but it's still amazing I've had a complete response,,,

I'm just waiting my date in February,, TBH, reading Mike NH progress, I'm dreading it, but worst case scenario,, I'll have to replace the bag :cry:

Fingers crossed, that won't be necessary!!!
ADELE X


Hi Adele
How are you getting on ? Xxx Annie xxx

User avatar
susie0915
Posts: 917
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surviving radiation for rectal cancer

Postby susie0915 » Thu Jan 10, 2019 9:52 am

Caat55 wrote:Annie xxx


Annie,
I had a complete response according to scan but no biopsy. My oncologists, 1st and 2nd opinion, both recommended surgery and follow up chemo. According to them, they scans don't pick up cancer cells until they a certain threshold. I didn't want to take any chance of any of those stragglers getting any ideas and multiplying or setting up camp somewhere else. Chemo is awful but things are already so messed up in this first year I decided to go for it and just get it done.
Such hard decisions!!!
Susan[/quote]

Hi Susan
Do they normally offer chemo if all lymphs clear ? Are you in US ? Xxx Annie xxx[/quote]

My oncologist said he felt surgery and chemo were best options. He has had patients who have had cancer return and never know why. I decided to give it everything they had in arsenal a go.
S[/quote]
I am not sure if chemo is always offered with clear lymph nodes. Stage 2 is kind of a gray area but I think with rectal vs colon cancer clean up chemo is recommended more often. My oncologist said that even if my odds of recurrence is low she could not guarantee cancer cells did not get into the blood stream. So I went ahead and did the chemo. It's a tough decision.
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
5/19 CT NED, CEA <.5

User avatar
susie0915
Posts: 917
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Surviving radiation for rectal cancer

Postby susie0915 » Thu Jan 10, 2019 9:52 am

And yes I am in the US
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
5/19 CT NED, CEA <.5

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Jan 21, 2019 3:02 pm

Hi ANNE,
Have you made a decision on Ur treatment yet??
How r u doing???

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

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Mon Jan 21, 2019 6:57 pm

I've been thinking about Annie too and wondering..... I hope she updates us!
50 - F - Mom
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 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W


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