Surviving radiation for rectal cancer

Please feel free to read, share your thoughts, your stories and connect with others!
Lee
Posts: 5724
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surviving radiation for rectal cancer

Postby Lee » Fri Jul 13, 2018 6:22 pm

SteveNZ wrote:PUSH HARD NOW (a true story...)

OK now breath deeply now push ....... AAAAArrrrrrgh it hurts
Keep going...... Yaaaaaaa
A qick breath, good, now push again.....
OOOWWWWWWWWWW it hurts like ..........(BEEP censored......)
Pant, pant, pant,
Breathe and
YAAAAAAAAAA........WOWW
Its coming push harder now
AaaaaaaaRRRRRGGGGGG
wawawawa........cry, cry, cry.... sob sob in agony...

Well done now stop crying only another 52 bits of barbed wire (or razor blades) to go..... :( :( :D :( :( :(
MAN IT HURTS POOING THROUGH AN IRRADIATED POO HOLE...

**TO ALL MOTHERS- I apologise for ever wondering what it is like to give birth. Man you ladies are brave..... And have some guts. I take my hat off to you and will forever remember mothers day with respect.

Seriously though WOW it is so awful that even passing gas can have you wincing..... :(
My tumour is right against my anus so everything down there (including junior - other guys will know what I mean) is suffering. The medical folk are really good though and doing their best to help combat the symptoms of such radiation. And to be fair I was warned and knew what was likely.
I must admit though they need a few 'real live survivors witness accounts' rather than the perfectly correct medical description.


That is just too funny. I feel your pain. I didn't really have pain, just lots of itchness down there and no control (radiation destroyed 2/3 of my rectal muscles) thus I had lots of potty accidents. Maybe because of the muscles being destroyed, I was saved from the pain.

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 - 10 years and counting!

Annie50
Posts: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Jul 16, 2018 3:50 pm

SteveNZ wrote:PUSH HARD NOW (a true story...)

OK now breath deeply now push ....... AAAAArrrrrrgh it hurts
Keep going...... Yaaaaaaa
A qick breath, good, now push again.....
OOOWWWWWWWWWW it hurts like ..........(BEEP censored......)
Pant, pant, pant,
Breathe and
YAAAAAAAAAA........WOWW
Its coming push harder now
AaaaaaaaRRRRRGGGGGG
wawawawa........cry, cry, cry.... sob sob in agony...

Well done now stop crying only another 52 bits of barbed wire (or razor blades) to go..... :( :( :D :( :( :(
MAN IT HURTS POOING THROUGH AN IRRADIATED POO HOLE...

**TO ALL MOTHERS- I apologise for ever wondering what it is like to give birth. Man you ladies are brave..... And have some guts. I take my hat off to you and will forever remember mothers day with respect.

Seriously though WOW it is so awful that even passing gas can have you wincing..... :(
My tumour is right against my anus so everything down there (including junior - other guys will know what I mean) is suffering. The medical folk are really good though and doing their best to help combat the symptoms of such radiation. And to be fair I was warned and knew what was likely.
I must admit though they need a few 'real live survivors witness accounts' rather than the perfectly correct medical description.


Hi ! Did the shrinking of the tumour make it feel better ?

Annie50
Posts: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Jul 16, 2018 3:52 pm

lauragb wrote:Also been there. I am sorry to hear you are going through this. I did deep breathing while having BMs. I also did sitz baths 2-3 times a day with Domeboro Astringent powder in them. This gave me some relief but I still had
a lot of pain. It started getting a better a few weeks after treatment ended.

Hopefully the doctor can give you some pain meds or some type of numbing cream although lidocaine does become an irritant so I'd suggest staying away from it. Using a peri-anal bottle of warm water also cuts down on the wiping. The less wiping, the better, which is easier said than done. I'm looking into getting some type of bidet set-up for after my takedown as I don't want to go through the burning butt syndrome again.

Good luck in the next weeks. The radiation can kick the cancer's a$$ but it sure does wreak havoc on the body.



Hi there - do you know if with a complete response rgst watch and wait or always operate anyway ? Cx

SteveNZ
Posts: 142
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Mon Jul 16, 2018 5:04 pm

Annie50 wrote:
SteveNZ wrote:PUSH HARD NOW (a true story...)

OK now breath deeply now push ....... AAAAArrrrrrgh it hurts
....................................
I must admit though they need a few 'real live survivors witness accounts' rather than the perfectly correct medical description.


Hi ! Did the shrinking of the tumour make it feel better ?

Not really but as it healed things are better with little pain.

There is a lot of scar tissue and the nerves in my rectum appear damaged enough that I have no feeling when to go (when full) and sometimes little control when things want to go. I follow a routine of knowing that it must be time to go and 'give it heaps'. More often than not there is something in there.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

SteveNZ
Posts: 142
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Surviving radiation for rectal cancer

Postby SteveNZ » Mon Jul 16, 2018 5:41 pm

Annie50 wrote:
lauragb wrote:Also been there. I am sorry to hear you are going through this. I did deep breathing while having BMs. I also did sitz baths 2-3 times a day with Domeboro Astringent powder in them. This gave me some relief but I still had
a lot of pain. It started getting a better a few weeks after treatment ended.

Hopefully the doctor can give you some pain meds or some type of numbing cream although lidocaine does become an irritant so I'd suggest staying away from it. Using a peri-anal bottle of warm water also cuts down on the wiping. The less wiping, the better, which is easier said than done. I'm looking into getting some type of bidet set-up for after my takedown as I don't want to go through the burning butt syndrome again.

Good luck in the next weeks. The radiation can kick the cancer's a$$ but it sure does wreak havoc on the body.



Hi there - do you know if with a complete response rgst watch and wait or always operate anyway ? Cx

Hi.
Am still awaiting scope plus biopsy and after that they will decide.
My surgeon did advise last meeting (before MRI) that he prefers the 'wait and see' option if all results are clean.
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
June 2018 - Sitting it out before operation. ....Pretty Miserable- emotions gone weird....?!
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

Annie50
Posts: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Jul 16, 2018 9:04 pm

Lee wrote:
SteveNZ wrote:PUSH HARD NOW (a true story...)

OK now breath deeply now push ....... AAAAArrrrrrgh it hurts
Keep going...... Yaaaaaaa
A qick breath, good, now push again.....
OOOWWWWWWWWWW it hurts like ..........(BEEP censored......)
Pant, pant, pant,
Breathe and
YAAAAAAAAAA........WOWW
Its coming push harder now
AaaaaaaaRRRRRGGGGGG
wawawawa........cry, cry, cry.... sob sob in agony...

Well done now stop crying only another 52 bits of barbed wire (or razor blades) to go..... :( :( :D :( :( :(
MAN IT HURTS POOING THROUGH AN IRRADIATED POO HOLE...

**TO ALL MOTHERS- I apologise for ever wondering what it is like to give birth. Man you ladies are brave..... And have some guts. I take my hat off to you and will forever remember mothers day with respect.

Seriously though WOW it is so awful that even passing gas can have you wincing..... :(
My tumour is right against my anus so everything down there (including junior - other guys will know what I mean) is suffering. The medical folk are really good though and doing their best to help combat the symptoms of such radiation. And to be fair I was warned and knew what was likely.
I must admit though they need a few 'real live survivors witness accounts' rather than the perfectly correct medical description.


That is just too funny. I feel your pain. I didn't really have pain, just lots of itchness down there and no control (radiation destroyed 2/3 of my rectal muscles) thus I had lots of potty accidents. Maybe because of the muscles being destroyed, I was saved from the pain.

Lee[/quot
e]

Hi did your ability to go to toilet without accidents improve after radio therapy ! Thanks ! X


Hi steve
How did your scope go ? After radio ? Xxxxsnnie
Last edited by Annie50 on Mon Aug 13, 2018 2:34 am, edited 1 time in total.

Annie50
Posts: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Jul 16, 2018 9:08 pm

SteveNZ wrote:
Annie50 wrote:
lauragb wrote:Also been there. I am sorry to hear you are going through this. I did deep breathing while having BMs. I also did sitz baths 2-3 times a day with Domeboro Astringent powder in them. This gave me some relief but I still had
a lot of pain. It started getting a better a few weeks after treatment ended.

Hopefully the doctor can give you some pain meds or some type of numbing cream although lidocaine does become an irritant so I'd suggest staying away from it. Using a peri-anal bottle of warm water also cuts down on the wiping. The less wiping, the better, which is easier said than done. I'm looking into getting some type of bidet set-up for after my takedown as I don't want to go through the burning butt syndrome again.

Good luck in the next weeks. The radiation can kick the cancer's a$$ but it sure does wreak havoc on the body.



Hi there - do you know if with a complete response rgst watch and wait or always operate anyway ? Cx

Hi.
Am still awaiting scope plus biopsy and after that they will decide.
My surgeon did advise last meeting (before MRI) that he prefers the 'wait and see' option if all results are clean.

What would you do ? If it was watch and wait ? Did you have rectsl discomfort before radiotherapy at diagnosis ? X

Lee
Posts: 5724
Joined: Sun Apr 16, 2006 4:09 pm

Re: Surviving radiation for rectal cancer

Postby Lee » Tue Jul 17, 2018 3:34 pm

Annie50 wrote:Hi did your ability to go to toilet without accidents improve after radio therapy ! Thanks ! X


If you are asking me, my quality of life IMPROVED after I got the colostomy bag. Radiation destroyed 2/3 of my rectal muscles. I was tied to the toilet for hours anytime I ate. I had to be home for the day before my 1st meal of the day. I would have to sit on the toilet for hours because it I had to go, I only had about 2 sec. Bottom line, no control.

Getting the colostomy bag was my decision, and it was the best decision for me. I can be out all day and not worry. I can eat what I want and not worry how food will effect by bowels or always know where the nearest bathroom is. I'm in control, not my bowels.

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 - 10 years and counting!

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Tue Jul 17, 2018 4:37 pm

Ive wondered the same thing Lee, as to why u needed a permanent colostomy!!!!
As my situation/ signature, is so similar to urs,
Butt I suppose none of us REALLY know until the reversal is done, to see and decide on what QOL we also decide is acceptable for ourselves
Even if the hope of hope and the pain and suffering of all the pre adjuvant was worth it in the end

We must at least try
I also look forward to my big 60 cancer free :D
Adele
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: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Jul 18, 2018 8:05 am

Eleda wrote:Ive wondered the same thing Lee, as to why u needed a permanent colostomy!!!!
As my situation/ signature, is so similar to urs,
Butt I suppose none of us REALLY know until the reversal is done, to see and decide on what QOL we also decide is acceptable for ourselves
Even if the hope of hope and the pain and suffering of all the pre adjuvant was worth it in the end

We must at least try
I also look forward to my big 60 cancer free :D
Adele

Hi Gosh does radiotherapy make your control that bad ? What would you do if you could choose. ? Xxxx

Eleda
Posts: 182
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed Jul 18, 2018 8:54 am

Not for me Ann, but I think everyone is so different, and I believe age plays a huge role in it also
That said I probably won't know the full extent until after my reversal which won't be until the end of the year,
I only had urgency issues during radiation and sorted itself out once finished, but I feel it's one of those things we have to give it a shot :wink:
ADELE
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

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Wed Jul 18, 2018 10:55 am

Annie....please don't dismiss the idea of radiation. Yes, it can and does make things difficult at times BUT....in my case, I chose a different surgery, combined with radiation and honestly, I have no serious BM issues. IMO, I think a lot depends on the combination of surgery and radiation.
If I remember correctly, you had, at one time mentioned the 'wait and watch'....I could be wrong though....but if you did, I believe that could also make a difference.
Another difference, again, IMO, is the tumor location and I honestly don't believe that radiation is the necessary culprit. Generally speaking, the higher up the tumor, the better the control afterwards. The surgeon has to have something to connect to and if the surgeon only has a cm or two above the sphincters, they will even tell you that it makes things more difficult.

While radiation can be difficult (I am a FIRM believer in being proactive...something I have worked on with the clinic I received my radiation from.....rad oncs are notorious for not telling all the symptoms and/or ways to avoid/minimize them...sorry for the rant...it REALLY bothers me) I personally believe that it helped not only save me from the more radical surgery that I didn't want but it also, IMO, saved my life. If I had to do it all over again, as difficult as it could be at times, I would emphatically say that YES, I would do it.
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

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Wed Jul 18, 2018 10:58 am

I should have also added that radiation is given for two main reasons. The one that everyone is aware of is to shrink the tumor. The other, just as important reason, is to 'sterilize' the lymph field around the rectum. Don't forget that that is equally important. While patients are given chemo with the radiation, the dosage of chemo is much less than when a patient has chemo by itself. In other words, you can't reliably count on the chemo during radiation to eradicate stray cancer cells. Sure the chemo helps but the majority of the work to help insure that cancer cells that may be in the lymphatic system (remember no radiological tests.....ultrasound, CT or MRI) is done by the radiation...and NOT the chemo. (Remember that no ultrasound, MRI or CT scan with respect to local lymph nodes is 100% guaranteed).
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

NHMike
Posts: 1797
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed Jul 18, 2018 11:32 am

The radiation shrunk my tumor by over 90% so it was successful from my point of view. In some cases, radiation results in a pathological complete response - it's been around for a long time and there's a reason for that.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Annie50
Posts: 30
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Wed Jul 18, 2018 10:07 pm

weisssoccermom wrote:I should have also added that radiation is given for two main reasons. The one that everyone is aware of is to shrink the tumor. The other, just as important reason, is to 'sterilize' the lymph field around the rectum. Don't forget that that is equally important. While patients are given chemo with the radiation, the dosage of chemo is much less than when a patient has chemo by itself. In other words, you can't reliably count on the chemo during radiation to eradicate stray cancer cells. Sure the chemo helps but the majority of the work to help insure that cancer cells that may be in the lymphatic system (remember no radiological tests.....ultrasound, CT or MRI) is done by the radiation...and NOT the chemo. (Remember that no ultrasound, MRI or CT scan with respect to local lymph nodes is 100% guaranteed).


Thanks so much ..why don't they give a stronger chemo ? Is the radiation good enough to get rid of any lymph involvement or stray cells ? ..


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



Who is online

Users browsing this forum: Google [Bot], mandosquiddy, Rock_Robster, Trying and 40 guests