Female Pains AFTER radiation, No Doc will Listen...

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Atoq
Posts: 320
Joined: Wed Oct 25, 2017 9:31 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Atoq » Tue Feb 13, 2018 12:42 pm

Caat55 wrote:So almost two weeks after Lap AR. Had a catheter briefly in hospital. I find that I pee once, sit a bit maybe 30 seconds, and pee more. Skin down through and around rectum is sore. Is this anyone else's experience?
S

I still do not feel when my urine bladder is full, and I have to press to empty it. But it is getting better every day and now I use a catheter only before to go to bed, to check that the bladder is empty.
The surgeon said that the nerves were damaged during surgery.

Best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Tue Feb 13, 2018 1:48 pm

Thanks Mike and Claudia

I guess there are too many possibilities, side effects for surgeon to share them all. Sorry to hear about both of your side effects. Its really a lot to deal with isn't it? Home health stoma nurse said to talk gently to my body, honor it and promise to give it time to heal.
They gave me Gabapentin for nerve pain which I am trying to take only once a day. I have Tylenol and Ibuprofen for pain. I read people's posts and think I must be a light weight as I am still taking something.
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

NHMike
Posts: 1810
Joined: Fri Jul 21, 2017 3:43 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby NHMike » Tue Feb 13, 2018 1:52 pm

Caat55 wrote:Thanks Mike and Claudia

I guess there are too many possibilities, side effects for surgeon to share them all. Sorry to hear about both of your side effects. Its really a lot to deal with isn't it? Home health stoma nurse said to talk gently to my body, honor it and promise to give it time to heal.
They gave me Gabapentin for nerve pain which I am trying to take only once a day. I have Tylenol and Ibuprofen for pain. I read people's posts and think I must be a light weight as I am still taking something.


Well, before the surgery, you just want that tumor gone and you want to survive. I don't really plan on having kids at my age and I'd worry about passing on genetic problems having had cancer. So there's some loss but I'm getting used to that as I get older.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Tue Feb 13, 2018 2:01 pm

Well, before the surgery, you just want that tumor gone and you want to survive. I don't really plan on having kids at my age and I'd worry about passing on genetic problems having had cancer. So there's some loss but I'm getting used to that as I get older.[/quote]

Your genetic comment struck a cord. I was going to have the genetics testing done in Palo Alto but the counselor shared some interesting information about insurance. If you get a new job, change insurance, etc. cancer can't be excluded as a preexisting condition but if I gave the genetic marker any future cancers for myself or potentially my children could be excluded. The waiver for preexisting conditions excludes genetic predispositions . She gave me the name of a private genetic testing company which she feels is very sound. I haven't decided on it, do I want to know? My children will be doing colostomies at a younger age, is that enough?

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

NHMike
Posts: 1810
Joined: Fri Jul 21, 2017 3:43 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby NHMike » Tue Feb 13, 2018 2:10 pm

Caat55 wrote:Your genetic comment struck a cord. I was going to have the genetics testing done in Palo Alto but the counselor shared some interesting information about insurance. If you get a new job, change insurance, etc. cancer can't be excluded as a preexisting condition but if I gave the genetic marker any future cancers for myself or potentially my children could be excluded. The waiver for preexisting conditions excludes genetic predispositions . She gave me the name of a private genetic testing company which she feels is very sound. I haven't decided on it, do I want to know? My children will be doing colostomies at a younger age, is that enough?

S


I hadn't thought too much about this stuff but my kids should probably have earlier testing.

BTW, it's colonoscopies.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Tue Feb 13, 2018 2:55 pm

NHMike wrote:
Caat55 wrote:Your genetic comment struck a cord. I was going to have the genetics testing done in Palo Alto but the counselor shared some interesting information about insurance. If you get a new job, change insurance, etc. cancer can't be excluded as a preexisting condition but if I gave the genetic marker any future cancers for myself or potentially my children could be excluded. The waiver for preexisting conditions excludes genetic predispositions . She gave me the name of a private genetic testing company which she feels is very sound. I haven't decided on it, do I want to know? My children will be doing colostomies at a younger age, is that enough?

S


I hadn't thought too much about this stuff but my kids should probably have earlier testing.

BTW, it's colonoscopies.


My fingers and my brain aren't always on the same plain. Thanks Mike. The genetics counselor recommended this, as did my oncologist.

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

NHMike
Posts: 1810
Joined: Fri Jul 21, 2017 3:43 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby NHMike » Tue Feb 13, 2018 3:23 pm

Caat55 wrote:My fingers and my brain aren't always on the same plain. Thanks Mike. The genetics counselor recommended this, as did my oncologist.

S


I know about it. I have to retype a lot of stuff because it comes out wrong. Many call it Chemo-Brain.
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

User avatar
Atoq
Posts: 320
Joined: Wed Oct 25, 2017 9:31 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Atoq » Tue Feb 13, 2018 3:30 pm

Probably in a few years ther will be more genetic tests offered as a panel of hundreds at very low cost. Did you test for Lynch?

I am ok with these side effects, but more worried for what comes next, especially after lung surgery, because I love to hike and run.

Not to talk about more chemo since I like also to play piano and work as teacher and researcher, so neuropathy and chemo brain really concern me. But who wants them anyway?

I think my father got oxalyplatin for his colon cancer and his brain was still sharp afterwards. A stomy and catheter are not really preventing me from doing anything...

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Eleda
Posts: 185
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Tue Feb 13, 2018 6:42 pm

Im.just finished radio last friday
On ABX#3
hating my bladder kidneys and urethra ATM
So.I feel ur pain,what has help a little is POTASSIUM CITRATE,,, lots
Because obviously still have the shits so no fruit to dilute the acid in the urine, so.I bough a supplement to help

QUESTION for you girls ahead if me
Is increased viginal mucus normal??? after radio???
Bought the sitz bath as recommended,but only helpfull fot the piles from dioreah lol

Skin on my face is so so dry
Any recommendations???

Also I did buy the aquaphor mike
But my team said no because petroleum will amplify the radiation and cause more burning!!!! But using it ever since with no skin breakdown
Just neather interior burns

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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Tue Feb 13, 2018 7:47 pm

Baths, lots of baths. I also used Calmoseptine cream once radiation was done. What's normal look like after cancer, treatment? I haven't figured it out yet. I am drinking a ton of herbal tea to hydrate. Everything was dry.
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

Soccermom2boys
Posts: 196
Joined: Tue Nov 10, 2015 10:29 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Soccermom2boys » Wed Feb 14, 2018 12:01 am

Eleda wrote:QUESTION for you girls ahead if me
Is increased viginal mucus normal??? after radio???


Adele


It probably is not vaginal mucus, but likely it is the tumor “melting” which is what you want from the radiation. I recall being worried about a lot of discharge after finishing radiation and my radiologist assured me that it was ok, the goal is to reduce if not eliminate the tumor so that is a good thing at this point in time. :roll:

Hope your recovery from radiation is as good as possible. Also keep in mind you may want to use a dilator so that you can possibly avoid some long term issues with vaginal stenosis. As painful as it might seem, you don’t want to delay working on stretching that area out—talk to your radiologist. Unfortunately many are so focused on only treating the tumor that they forget what some of the long term losses/issues are, be sure to be an advocate for yourself in this area.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Wed Feb 14, 2018 10:17 pm

Unfortunately many are so focused on only treating the tumor that they forget what some of the long term losses/issues are, be sure to be an advocate for yourself in this area.[/quote]

So another question, my skin on my butt checks, between my legs is almost as red and sore after ileostomy as it was after radiation, anyone have this experience?

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

User avatar
Atoq
Posts: 320
Joined: Wed Oct 25, 2017 9:31 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Atoq » Thu Feb 15, 2018 5:49 am

Caat55 wrote:So another question, my skinny on my butt checks, between my legs is almost as red and sore after ileostomy as it was after radiation, anyone have this experience?

S


For me it was the other way around, my skin was sore after radiation and after the colostomy operation it healed because of the catheter and the colon deviation.
Maybe it is a reaction to stress of surgery?

Atoq
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Thu Feb 15, 2018 6:23 pm

Just had my two week follow up, mild funical infection now have a cream should be good. Strange things happen with my body these days.

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

Eleda
Posts: 185
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Sun Feb 18, 2018 9:58 am

Soccormom,

Its,definitely, viginal mucus and not rectal mucus, think we,should put a symptom and helpful hints for radiation
Im a week out from radiation, and still burning like hell
Nothing helps
But showering makes it worse so now im going to try not use any soap and see if that helps
lower Back pain and hip paint begining now ao neet to address that also

Yes they seem to tell us all the dide effects but nothing really to help it

Im going to go to a physio this week and ask for advice along with advice on pelvic floor and bladder exercise before surgery to maybe help for afterwards

Ive used a vibrator ( more fun that dialators lol ) and seems to b ok , but is it a case,of its too early to actually have scar tissues,,, and it will get progressively worse or not???

3x times a week 15/30 min forevermore isint appealing to me to b honest
Either that or I need to find a man :roll: ASAP LOL.
( unlikely)

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


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