Post radiation vaginal stenosis info and questions

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Polarprincess
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Joined: Tue Aug 05, 2008 11:36 am

Post radiation vaginal stenosis info and questions

Postby Polarprincess » Sun May 10, 2009 7:51 pm

I just had my annual exam and my doctor said there was definitely vaginal stenosis and we discussed what to do from here, and this doctor is not a gynecologist.. i will be seeing one in a couple months (earliest i could get in) and he seemed to think if i take HRT even in the form of a cream that i am increasing my chances for more cancers... so i said i would go home and think about it for awhile..
i found this article tonight and read some others and from what i got from them is that a person should probably have HRT until about age 52 if they are young at menopause.. and i had never thought about this before but if i had not had the radiation, my body would still be producing estrogen and progesterin anyway.. so what would be the difference if i used the premarin cream or produced it myself? is it because the cream is manmade? and there was some comment in the articles i read about how if a person still had a uterus that you still need to do the HRT to avoid increasing endometrial cancer...i just don't know what to do.. i know we have discussed some of this here before..and know some of you have used the estrogen creams...what were your deciding factors? Are there any specific things your doctosr said that convinced you? Are there any studies you read? i am going back down to mayo in july for my check up with the rectal surgeon and my colonoscopy and i was thinking of making an appt with a gynecology specialist down there but i looked through all their docs and don't see one that specializes in post radiation issues or stenosis.. do these doctors exist?
here is that article and is very interesting!! i did notice this doctor has her email on the article..do you think a doctor would ever answer general questions on a subject like this via email? Don't quit reading when you get to the references section.. there is more after that
http://www.communityoncology.net/journa ... 10665.html
42 y/o Diagnosed Stage IIIa (T1 N1 of 26 M0) July 2008
LAR July 24 2008
Supposedly benign polyp with
invasive tubulovillous adenocarcinoma
12 cycles Fulfox
28 days chemoradiation
Finished April 20th 2009
Currently NED

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Terry
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Joined: Wed Oct 03, 2007 10:36 pm
Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: Post radiation vaginal stenosis info and questions

Postby Terry » Sun May 10, 2009 8:17 pm

I started typing this and then I decided I better pm you instead, it's rather personal;)

I won't take HRT, I've seen it cause breast cancer in three of my husbands relatives. Now perhaps they would have gotten it anyhow but they were on his mom and dads sides and all of them got it after taking hormones. I would love to at times because of the hot flashes but just to scared.

Whatever you decide, you have to be comfortable with.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

Polarprincess
Posts: 793
Joined: Tue Aug 05, 2008 11:36 am

Re: Post radiation vaginal stenosis info and questions

Postby Polarprincess » Sun May 10, 2009 8:28 pm

i know that is what i have a hard time with ...the increase in breast cancer.. but is the not taking them increasing the risk for endometrial cancer? I am still confused on this but that is how the article sounded.. maybe a person just needs to get a hysterectomy... or if we forgo the hormones watch us closer for the gynecological cancers... when that top doctor is on oprah talking about the hormone stuff i always want to email her and ask her what people in our situation should do.
42 y/o Diagnosed Stage IIIa (T1 N1 of 26 M0) July 2008
LAR July 24 2008
Supposedly benign polyp with
invasive tubulovillous adenocarcinoma
12 cycles Fulfox
28 days chemoradiation
Finished April 20th 2009
Currently NED

laxmom3
Posts: 100
Joined: Tue Oct 21, 2008 3:28 pm

Re: Post radiation vaginal stenosis info and questions

Postby laxmom3 » Sun May 10, 2009 10:13 pm

I have been lucky enough to not have problems with vaginal stenosis. My rad onc told me about it at my first visit with her. I was kind of floored when she looked me in the eye and said that one of the life long prescriptions that she would be giving me would be to have sex with my husband at least 3 times a week! OR use a dialator. When I told one of my girlfriends that I need to have sex 3 times a week, she just looked me and kept repeating, '3 times a week!?!'

That was all that my rad onc 'prescribed' for me. I had a lot of pain and irritation towards the end of my radiation treatments. I have also visited with my gynocologist and she said everything looked fine. I was actually looking to have her put me on hormones because of hot flashes due to being thrown into menopause-but alas I developed a blood clot in January, just as I finished chemo.

I have not had any problems with dryness, yet, thank goodness. If I do not follow my prescribed 'directions' I do experience tightness when I resume either sex (takes me back to that first time ;l ) or use the dialator.

I personally would be hesitant due to breast cancer and other cancer concerns, but I would discuss this with your gyn. They know the best and most about this sort of stuff. I have a very good friend who has stage IV breast cancer, who heard that dr talk on Oprah, and she is furious with him about what he said about hormones and breast cancer. Her personal feeling is, increase in use of HRT's, birth control pills=increase in cases of breast cancer.

Glad you brought up this subject, I am sure their are many others who have questions,but are afraid to discuss this.
lisa
Dx April, 2008 Stage III RC, 2 of 35 nodes pos.
LAR, Apr. 29, 2008
6 rounds Folfox, 5 weeks radiation w/ Xeloda
Finish last 6 rounds of Xolox Jan.12, 2009
Dx. DVT Jan. 18,'09
Mar. 2012 perm colostomy

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Post radiation vaginal stenosis info and questions

Postby weisssoccermom » Mon May 11, 2009 2:37 am

In talking with my gyn, I have been repeatedly told that there is a large difference in taking systemic estrogen and the vaginal creams, such as Premarin. I used the Premarin during my radiation treatments, however, I was only told to use it about 2 -3 times per week which is what I did. In addition, I faithfully had sex with hubby during treatments and as such have been lucky not to have suffered any vaginal side effects. However, I entered menopause approximately 8 months after completing my rad treatments so, like many women who never undergo chemoradiation, I had to deal with the vaginal dryness brought on mymenopause and the lack of hormones. I still use the Premarin cream although I would guess that now I use it about 1 -2 times (at the very most) per week and oftentimes I will miss a week. I don't worry about that small amount of estrogen that I get from the cream and honestly, I would be getting it anyway, had I not gone into menopause. I suppose that there is a very small risk of other cancers, however, I have to weigh all of the information and side effects and for me, the dryness and discomfort that goes along with the vaginal dryness outweighs the very small risk from using the Premain cream so infrequently. Keep in mind that you don't necessarily need to use the cream every day for a long extended time frame to get the benefits.

Jaynee
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

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Post radiation vaginal stenosis info and questions

Postby Surroundedbylove » Mon May 11, 2009 9:24 pm

Hello all,

This is my first post to these forums but I want to thank all of you for all of the great information in the forums - the insight of other "young" people has been invaluable during my battle against this disease.

I too have been experiencing vaginal stenosis and awful night sweats from the neoadjuvant radiation for rectal cancer. I talked with my oncologist in detail about the options. He discussed the difference between HRT and ERT. HRT is progestin and estrogen while ERT is estrogen only. He surprised me by also discussing black cohosh (specifically Remifemin because it has been studied in double blind placebo controlled trials). HRT has more cancer risk than ERT and the Premarin cream version of ERT has less cancer risk than the pill versions of ERT. Although controversial and still not fully studied in large scale studies, there appears to be less breast cancer risk with Remifemin than ERT. I confirmed all of this with my gynecologist who specializes in post-menopausal women. We decided that I would try a half dose of Remifemin (evening dose) only for awhile and see how that works. If I need more I can then add the Premarin cream. If that isn't enough I can add the morning does of Remifemin. Our hope is that a year or less may be all that is needed of these in combination with either the use of a dilator or sex three times a week. During the adjuvant chemo and with the temporary ileostomy, sex isn't really at the forefront but hopefully down the road that will change! So far I've used the black cohosh for just a week and a half and it has helped immensely with the night sweats. I've seen less change on the vaginal dryness but time may tell with that.

- not sure how to get a signature appended to this post, so for now, I'm signing off.

Surroundedbylove
Age 43
Diagnosed Stage III rectal cancer 11/2008; 6 weeks XELOX and radiation; LAR and temporary ileo 3/2009; just began what will be 9 cycles of FOLFOX
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Post radiation vaginal stenosis info and questions

Postby weisssoccermom » Mon May 11, 2009 11:17 pm

Surroundedbylove,

Where did you have your surgery?? I live in Puyallup, - not too far away from you - and had my surgery in Seattle. Just curious if you had it done on the east side of the lake (Overlake possibly?) or if you went to one of the hospitals in Seattle. Hoping things are going well for you.

Jaynee
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

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Post radiation vaginal stenosis info and questions

Postby Surroundedbylove » Mon May 11, 2009 11:34 pm

Hi Jaynee,

I actually had the surgery at ____________ in Seattle. Drs. Kratz and Billingham run one of only three clinical fellowships in colon and rectal surgery west of Dallas (the other two are in LA). I really wanted Dr. Kratz and my options were Swedish or Northwest where he is admitted. ______________________________________________


I'm hanging in there - the chemo fatigue is extremely severe for me and it is still hard getting used to the temporary ileo. I'm glad the hot flashed have subsided though and am hopeful the vaginal dryness and stenosis will improve.

Where was your surgery?
Last edited by Surroundedbylove on Sun Jan 17, 2010 12:03 am, edited 1 time in total.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Post radiation vaginal stenosis info and questions

Postby weisssoccermom » Tue May 12, 2009 10:38 am

I am sending you a PM.
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

Surroundedbylove
Posts: 3126
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Post radiation vaginal stenosis info and questions

Postby Surroundedbylove » Tue May 12, 2009 12:45 pm

Jaynee,

Thanks for the PM - I can't yet reply because I'm new to the discussion board and they haven't yet "approved" me to do PMs. When they let me do PMs, I'll reply - definitely want to compare "local" notes!

Sorry all for this "off topic" discussion - I'm sure you understand.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019


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