Surviving radiation for rectal cancer

Please feel free to read, share your thoughts, your stories and connect with others!
Annie50
Posts: 77
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Jan 27, 2019 1:51 pm

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

ADELE X

Hi Adele ! Sorry I lost my password ! .. I am doing fine .. I asked my Christie super surgeon about why I wasn't having any extra chemo and he said in his opinion I didn't need it as no evidence of residual cancer . And we shouldnt use it is not needed ? . still don't quite why it isn't used for belt and braces for any future spread but I have asked him for appt with the onco just to talk through but he seemed very certain? I am feeling very well, all bloods good and I have no return of any symptoms ? How Ada you ? Where are you up to ? These are hard decisions eh ? Xxx much love Annie xxx

Annie50
Posts: 77
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Jan 27, 2019 1:54 pm

lakeswim wrote:I've been thinking about Annie too and wondering..... I hope she updates us!

Hi Lakeswim ! I lost my password ? How are you doing ? Where are you up to with treatment ? I saw my top surgeon at The Christie even though he hasn't asked to see me ! And he was still adamant that chemo not required as no evidence of res cancer ? And he is supposed to be one of the very best in this and W and W Still a little unsure so asked to just chat with onco .. what about you ? I feel great generally and no return to any symptoms xxx Annie xxx

weisssoccermom
Posts: 5933
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Sun Jan 27, 2019 2:12 pm

Annie....although I haven't been a part of your conversation, I want to add something.
PLEASE...don't take the word of the surgeon . It isn't his/her call as to whether or not you need more chemo.
I'd like to tell you a quick story of a good friend of mine....another fellow CC who is no longer with us. Terry had an excision, after having chemoradiation. On the surface, it looked as though there was no cancer left. All tests showed nothing until the biopsy came back from the excision. That biopsy showed just a few residual cancer cells and her SURGEON was adamant that she didn't need any further chemo. Her onc disagreed but her surgeon prevailed. 18 months or so later, Terry's cancer recurred....this time in her lungs. Terry passed away, just shy of 5 years from her diagnosis. The cancer had spread...to her lungs, it recurred in her pelvis, she had distant lymph nodes involved and it spread to her nose (very unusual) and other places. Terry and I talked a LOT....pretty much on a daily basis. We both often wondered about the 'what ifs'. What if her surgeon had deferred the chemo decision to her oncologist...the doctor who is a SPECIALIST in chemotherapy? What if her onc had been 'pushier' about his belief that Terry needed more chemo? Your surgeon is a SURGEON....NOT an oncologist. Please don't leave the decision as to whether or not you need more chemo to your surgeon...it is not his/her place! No oncologist should be telling a surgeon what type of surgery to do and no surgeon should be telling an oncologist about whether or not a patient does/does not need chemo.

I will admit that I haven't read the entire thread but with the W & W approach, you have no definitive tests to tell you what is/isn't remaining (with respect to potential cancer cells). There could be microscopic cells still in your rectal wall that no test can determine. I'm not saying that you should have the more radical surgery....far from it. I just wouldn't be so quick to dismiss more chemo. When I had my excision, my biopsy came back (full thickness of the rectal wall and a few lymph nodes that happened to be picked up in the specimen) with NO cancer cells. My surgeon bowed out of the decision whether or not to have more chemo.....it wasn't her place. That decision was between me and my oncologist. Please get an appointment with an oncologist and follow his/her advice. At the very least, listen to his/her opinion before you make a decision.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Eleda
Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Jan 27, 2019 3:00 pm

Hi Anne, I do it all the time lol
I've a surgon appointment march 1st so I imagine now surgery won't be till end march, but life is good
( Ignorance is bliss sometimes) a rare thing for me :)

I agree strongly with lakeswim, even if u go for W&W I ( if it were me) would absolutely insist on 3 months chemo. ( new protocol) front loading is most responsive with less long term side effects ( I've none........... that I'm aware of).

I'm sure it's never going to be an easy decision
" Dammed if you do"
"Dammed if you don't"
. 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

Annie50
Posts: 77
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Feb 10, 2019 2:48 pm

Eleda wrote:Hi Anne, I do it all the time lol
I've a surgon appointment march 1st so I imagine now surgery won't be till end march, but life is good
( Ignorance is bliss sometimes) a rare thing for me :)

I agree strongly with lakeswim, even if u go for W&W I ( if it were me) would absolutely insist on 3 months chemo. ( new protocol) front loading is most responsive with less long term side effects ( I've none........... that I'm aware of).

I'm sure it's never going to be an easy decision
" Dammed if you do"
"Dammed if you don't"
. Adele X


Hey Adele how are you doing ? I've taken your advice and Susie on forum and got appt to see surgeon and onco re why no follow up chemo ..-are you doing ok ? Xx much love annie xxx

Annie50
Posts: 77
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Feb 10, 2019 2:54 pm

Annie50 wrote:
Eleda wrote:Hi Anne, I do it all the time lol
I've a surgon appointment march 1st so I imagine now surgery won't be till end march, but life is good
( Ignorance is bliss sometimes) a rare thing for me :)

I agree strongly with lakeswim, even if u go for W&W I ( if it were me) would absolutely insist on 3 months chemo. ( new protocol) front loading is most responsive with less long term side effects ( I've none........... that I'm aware of).

I'm sure it's never going to be an easy decision
" Dammed if you do"
"Dammed if you don't"
. Adele X


Hey Adele how are you doing ? I've taken your advice and Susie on forum and got appt to see surgeon and onco re why no follow up chemo ..-are you doing ok ? Xx much love annie xxx

I meant Weissersoccermum as well xx

Eleda
Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Feb 10, 2019 3:36 pm

hi Anne
Just back from 5 days in malaga so can't complain,
Was in a bit of joint pain walking around which is probably the radiation doing it's thing but trying to loose weight and at the gym 3x weeks for weigh training, so hopefully will stand to me after the surgery,,, u just want it over so I can begin the recovery process,,, looking at everyone it seems a long and difficult road so the sooner I start the better.
Glad I've a plan, I don't envy u and lakeswim with Ur decisions ( sometimes better not to have a choice lol)
Glad to hear your keeping well :D
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: 206
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Sun Feb 10, 2019 5:29 pm

Eleda wrote:hi Anne
Just back from 5 days in malaga so can't complain,
Was in a bit of joint pain walking around which is probably the radiation doing it's thing but trying to loose weight and at the gym 3x weeks for weigh training, so hopefully will stand to me after the surgery,,, u just want it over so I can begin the recovery process,,, looking at everyone it seems a long and difficult road so the sooner I start the better.
Glad I've a plan, I don't envy u and lakeswim with Ur decisions ( sometimes better not to have a choice lol)
Glad to hear your keeping well :D
Adele X



Hi Adele. Is there good info on here about Vitamin C prior to surgery? How long did you take it? Thanks.

You did surgery back in May? Did you have reversal? How do you feel?
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

Eleda
Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Feb 10, 2019 5:49 pm

Hi lakeswim
I took IV Vitiman C BETWEEN CHEMORADIATION AND SURGERY, for 12 weeks once a week 50/100 g
Not a whole lot of info here on it but a few people deffo on here educated on it( prguy... Zephyr etc )

I had my surgery in may and awaiting reversal in end march ( delayed because of shingles)
I feel great, I let nothing pull me down TBH, even this cancer shit lol....

I did my bloods with my GP last week so hopefully they will come back ok( I was concerned with increasing CA19/9

I haven't had a scan since October so will probably need that too before surgon appointment on march 1st

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

Annie50
Posts: 77
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Feb 11, 2019 1:53 am

Eleda wrote:Hi lakeswim
I took IV Vitiman C BETWEEN CHEMORADIATION AND SURGERY, for 12 weeks once a week 50/100 g
Not a whole lot of info here on it but a few people deffo on here educated on it( prguy... Zephyr etc )

I had my surgery in may and awaiting reversal in end march ( delayed because of shingles)
I feel great, I let nothing pull me down TBH, even this cancer shit lol....

I did my bloods with my GP last week so hopefully they will come back ok( I was concerned with increasing CA19/9

I haven't had a scan since October so will probably need that too before surgon appointment on march 1st

ADELE X

Hi Adele . What's increasing CA ? Xxx Snnie xx

Eleda
Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Feb 11, 2019 3:41 am

Hi Anne,, Ca19/9 is a carbohydrate released by certain cancers , manly pancreatic, but also can pick up others. My CEA, is unreliable, so im watching my CA19/9 also Which is still within the normal range but has increased from 8_17, so that concerns me ,,, pictullarly since my CEA, is unreliable, had it checked last we'd, so should have results this week,,,

Here's a like that might explain better

https://www.urmc.rochester.edu/encyclop ... id=ca_19_9

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

Annie50
Posts: 77
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Feb 11, 2019 7:36 am

Eleda wrote:Hi Anne,, Ca19/9 is a carbohydrate released by certain cancers , manly pancreatic, but also can pick up others. My CEA, is unreliable, so im watching my CA19/9 also Which is still within the normal range but has increased from 8_17, so that concerns me ,,, pictullarly since my CEA, is unreliable, had it checked last we'd, so should have results this week,,,

Here's a like that might explain better

https://www.urmc.rochester.edu/encyclop ... id=ca_19_9

ADELE X


Really interesting Adele, it does say radiation affects it as well but that might be only when you are having it .. do your docs routinely measure this ? You say your CEA unreliable is that in that in doesn't ever change so doesnt secrete the antigen ? That some bowel cancers do? Do most react to CEA level or is that not true do you know.. hopefully your tests ok this week xxx Annie xx

Eleda
Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Feb 11, 2019 8:37 am

Hi Anne yes radiation can effect the number as can chemo but I've not had radiation in a year and chemo finished in October,,,
It seems it's not a marker for me bevyat DX was only 4.4
Dropped to 3 during chemo and back to 4 again.....

No my team does not request them but I've asked my GP to monitor them so it's been 4 months since I'd bloods done and my cholesterol was also high so trying to work on that also.

My concern is that my Ca19/9 is increasing not the actual number,
Yes of course their are other factors that can influence it markers also but I feel good and CRP( influence markers) are ok so that is why I'm concerned,,
Plus cancer has now made me slightly paranoid about my body conspiring against me lol

I've learned to b my own advocate when it comes to health,,, u need to b pro active or u can be overlooked
So I'm ontop of as much of it as I can

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

sinewaves
Posts: 9
Joined: Tue Dec 18, 2018 9:44 am

Re: Surviving radiation for rectal cancer

Postby sinewaves » Mon Feb 11, 2019 11:52 am

Sorry to ask a new question, but how long after radiation ended with the diaherra (for those who got it) go away? I have 3 more days (the boosts) and I am ready for this particular side effect to end.
DX @ 37, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM", greater than 3cm at the dentate line Rectal Cancer (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days

Eleda
Posts: 270
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Feb 11, 2019 12:00 pm

Mine disapated after about 2 weeks
Every day getting better from week one
And eventually, back to " Normal'

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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Nordy1 and 36 guests