Vaginal stenosis - an issue for women with rectal cancer

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

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby weisssoccermom » Tue Mar 26, 2019 8:01 pm

I"m not surprised about the HRT but I am surprised that your GYN won't Rx some vaginal estrogen cream. Yes, it does contain hormones, however, the levels your body absorbs via the vaginal route are SO small that most doctors don't consider it to be 'dangerous' to a female unless you have a STRONG family history of estrogen based cancers. If you have none (breast, endometrial, ovarian) then I'm not sure why the wait. That's just my opinion. Personally, I wouldn't take that as a final answer....I would be seeking more information.

As for when vaginal stenosis would/could show itself....no 12 weeks is not enough time. You may be fortunate enough to never have it but then again, you might not.
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

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Sat Mar 30, 2019 4:11 am

Hi Miss Molly - Yes my gynae is definitely on the cautious side of anything related to hormonal medication.

She did mention that HRT can stop when I reach the age of 50 and it's not a lifelong medication. Is it standard practice to also consider birth control pills for estrogen ? I will bring it up at the next visit ! Thanks for the explanation ! :?:

Sorry to hear about your pituitary tumour situation and the side effects it brought about ! I hope all is going better with premarin cream ? :(

Yes, they were quite adamant that I have to demonstrate for a year without menstruation before they would even consider HRT ! Perhaps another method is to exaggerate the effects to hurry them along ? I'm already feeling the hot flushes now and again but then I live in a tropical region and there are days when I'm not sure whether it's the weather or it's me ! :X

Will also be looking into Emeritus ! Thank you !
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Sat Mar 30, 2019 4:17 am

weisssoccermom wrote:I"m not surprised about the HRT but I am surprised that your GYN won't Rx some vaginal estrogen cream. Yes, it does contain hormones, however, the levels your body absorbs via the vaginal route are SO small that most doctors don't consider it to be 'dangerous' to a female unless you have a STRONG family history of estrogen based cancers. If you have none (breast, endometrial, ovarian) then I'm not sure why the wait. That's just my opinion. Personally, I wouldn't take that as a final answer....I would be seeking more information.

As for when vaginal stenosis would/could show itself....no 12 weeks is not enough time. You may be fortunate enough to never have it but then again, you might not.


Hi weiss - I was surprised myself too by how cautious they were ! To be fair, my maternal aunt had breast cancer and I just got off from a suspicious breast lump which was thankfully not malignant upon a recent biopsy. They also discovered an enlarged ovarian cyst (6cm) during the rectal MRI which in the gynae's view should be removed as soon as possible. So I'm guessing these probably all adds up in hesitating with the prescription ?

She also ordered an immediate set of blood test and a vaginal ultrasound scan before we decide next steps. I will be seeing her again in Mid April to discuss results of all tests and will have a clearer idea of where I am at with regards to HRT and the estrogen cream,
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Thu Apr 11, 2019 2:10 am

An update. Met my rectal cancer oncologist 2 days ago to start chemo treatment, I mentioned briefly to him about gynae suggestion to start me on HRT as soon as I reach the 12 months no menstruation period and he was frowning big time shaking his head and said "try not to". :?

We didn't have enough time to go into that as the main discussion was my chemo treatment plan.

Seeing gynae again next Monday on vaginal scans and other swap test results ! Hmm
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

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

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby weisssoccermom » Thu Apr 11, 2019 10:42 am

I understand the doctors concerns about HRT....BUT....HRT from years ago is NOT the same as it is today. Obviously, if a person has a STRONG family history of estrogen based cancers, I do understand the concern. However, preparations like Premarin which ONLY absorb the hormones vaginally (and honestly don't do much at all for the hot flashes, etc) aren't the same. I also don't think that men, in general, 'get it' about the effects of menopause on a woman. It's not just about the 'hot flashes'....it's about a LOT more.

Here I am, 12 years out from my last period and I still suffer from the side effects of menopause. I was fortunate not to experience much in the way of hot flashes but I still suffer from sleeplessness, vaginal dryness (I'm bad about using my Premarin),moodiness, weight issues (man it IS harder to lose/maintain a healthy weight in menopause). Frankly, I don't know if the memory issues are related to chemo, getting older or menopause.....it's one of the side effects of menopause. Same goes for the urgency to go to the bathroom.....is that because I am older, radiation to my bladder, menopause or a combination of all of it.

My point is that these symptoms/side effects of menopause are REAL and bothersome. They interfere with our lives and while I understand that the health risks of HRT are concerning, to dismiss women (which I think too many doctors do) isn't right either. Temporarily, try natural alternatives such as: Emerita products. They certainly are NOT the same as real hormones but they do help with 'balancing' your moods, etc.

Good luck with your upcoming chemo.
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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby MissMolly » Thu Apr 11, 2019 11:33 am

Jolene:
I find your oncologist’s negative connotations of hormone replacement therapy concerning.

I read a recent article in Medscape just this week discussing the importance of EARLY intervention of localized/vaginal estrogen or low dose systemic birth control for menopausal symptoms. Especially related to vaginal tissue thinning and dryness, the article discussed how early intervention can go a long way to avoid irreversible damage that can accompany critical hormone absence/suppression.

Low hormones are not just about a little pelvic dryness and pain. Hormones are, in essence, chemical messengers that mediate and direct the body’s many physiological functions.

I would encourage you to continue to research this important area of women’s health . . . To better place your own health and well-being.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Mon Apr 15, 2019 8:31 am

Hey ladies ! Update !

I finally got prescribed with 2 tubes of premarin cream from my gyane ! I have come a long way !!!

My case was transferred to another gyane and he took a much more liberal approach to prescribing premarin as he thinks it's a fairly safe to use cream anyway. Yes - I got transferred to a male gynae as the previous one was leaving ! Again I tried to address the vaginal stenosis issue with him and as usual the advise was to "stay sexually active". :|

It seems like I could just use the cream with my fingers inserted into the vagina but I know a few of you mentioned to try using it with the dilators which seems to make more sense to me ! Instructions says twice a week to affected area- how often do you ladies use it ?

We also had a discussion today on whether to operate a huge ovarian dermoid cyst (6cm!) that was discovered during my rectal cancer MRI. I'm going through Xelox at the moment anyway and any operation will have to wait until after chemo is done. Gynae laid out options that if I am going to remove the cyst at some point, I should also consider removing both the ovaries at the same time seeing as I'm already menopausal and have no intentions to have kids. This gets rid of the chances of any ovarian cancer. Any thoughts ? I just wondered if it is going to affect me in any other ways that are not being spelt out ! I'm googling hysterectomy at the moment but I don't think we are going that far yet !

As for HRT - they are only going to consider after I passed the 12 months mark and it's deemed as not urgent for me at the moment.
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby MissMolly » Mon Apr 15, 2019 12:44 pm

Jolene:
The addition of local Premarin cream seems like a wise strategy. It will provide the vaginal and labial tissues with the “nourishment” that they need.

I used Premarin cream 3 x a week for about 9 months, and then went on a low dose birth control pill for an additional nine months. Then no further HRT. My situation necessitating HRT is slightly different than your own (Pituitary gland failure).

While I cannot recall the exact Premarin cream dosage, it was about 3 ml +/- on the dosage applicator.

Feel free to use a small amount of the Premarin cream on the external area adjacent to the vagina opening (labial folds).

I am a passionate animal advocate, and was distressed with my ethical delimina in using Premarin. But I can say that the Premarin cream was genuinely life-impacting for me in a positive way. I was so miserable prior to the Premarin. I “give forward” to the female horses that bettered my life by contributing to contributing to the local emergency animal hospital in Portland.

Again, Good for you for advocating for your needs in securing a prescription for the Premarin cream. Good for you for finding your voice in a medical culture that often minimizes menopause. The Premarin is addressing far more than singular tissue dryness. It’s early use as your hormone levels lower will help prevent long-term detrimental local vagina/pelvic effects associated with menopause.

Be well,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby kellywin » Wed May 01, 2019 6:10 pm

I have to use Premarin every night with the exception of when I use Vagafam (Yuvafem generic) pills which are 3x/week. Even at this, sex sucks. My gyno just suggested a laser treatment, she just got this laser and says that it's helped some of her post cancer/radiation patients. I'm seriously considering it, even with a steep discount, it's a little costly, but for me, I think it's worth it. Anyone heard of this or tried it?
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

Cmarie03
Posts: 29
Joined: Sat Feb 16, 2019 6:35 pm

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Cmarie03 » Mon May 13, 2019 8:04 pm

Thanks to this thread I was ready with lots of questions for my gyn oncologist today. Got the cream and will order dialators. Thank god for women helping women. I feel better equipped to at least fight the side effects. I am two weeks out from radiation.
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

HappyNao
Posts: 12
Joined: Mon Apr 15, 2019 2:30 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby HappyNao » Mon May 13, 2019 9:44 pm

THANK YOU for this thread. I'm due to start a short course of radiation next week, and while the radiation oncologist did bring up all of the possible long term effects he was pretty dismissive of my concern about them. I feel much more prepared after reading this, and that there's something that I can actually do to try and prevent issues is a huge relief.
38 year old stay at home mom to 8 and 3 year old

Stage 2a rectal cancer diagnosed April 2019
Short course radiation May 20-24
Surgery June 6 - LAR with temp ileo
Starting xeloda July 11 for 6 months

Pathology - clear margins, t3n0m0, grade 2

Cmarie03
Posts: 29
Joined: Sat Feb 16, 2019 6:35 pm

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Cmarie03 » Tue May 21, 2019 4:13 pm

I am a month out from radiation for rectal cancer and having a lot of brownish vaginal discharge. Is this normal?? I was told by my doc it was but it seems like a lot and I am worried.
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

Jolene
Posts: 180
Joined: Wed Jan 23, 2019 10:17 am

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Jolene » Wed May 22, 2019 9:17 am

Cmarie03 wrote:I am a month out from radiation for rectal cancer and having a lot of brownish vaginal discharge. Is this normal?? I was told by my doc it was but it seems like a lot and I am worried.


I found that it's much more useful to speak to a gynecologist at the same time and DO NOT depend solely on your radiation doc ! I realised that the radiation doc's main aim is to either get rid of or shrink the tumour. Anything outside of these aims - they don't seemed to take it seriously. At least that's my experience. If not for this board, I wouldn't even know half the story of vaginal side effects.
Dx @ 39 F on WW managmeent
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - WW in place (12 weeks)
Mar'19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr - CCR, surgery on hold. 6 cycles of Xelox.
Aug - 6 cycles of Xelox completed
19 - Flex sig, biopsy, PET/MRI
2019 - 2023 - Every 6 mths - Full scope / Flex sig / biopsy, PET / MRI / CT every 6 months
Dec 23 - All clear 5 years on ! Thank god !

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby MissMolly » Wed May 22, 2019 11:18 am

Cmarie03 wrote:I am a month out from radiation for rectal cancer and having a lot of brownish vaginal discharge. Is this normal?? I was told by my doc it was but it seems like a lot and I am worried.


CMarie:
I believe your physician is correct in lowering your alarm level with regards to the brownish vaginal discharge.

It is likely due to your plummeting sex hormone levels secondary to the effects of radiation. What you are experiencing is called “withdrawal bleeding.” The uterus prepares a monthly cycle lining but the progesterone levels are not able to sustain it. What would have been your normal monthly cycle lining becomes devitalized. The tissue begins to “decay” with a delayed sloughing, resulting in the brownish-coloration from decayed and released hemoglobin rather than the bright red associated with a normal period.

You may experience more episodes of withdrawal bleeding and they will likely be irregular in timing. Brownish-discharge. It can have an off-odor. Irregular spotting.

I hope this helps ease your immediate concerns.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Cmarie03
Posts: 29
Joined: Sat Feb 16, 2019 6:35 pm

Re: Vaginal stenosis - an issue for women with rectal cancer

Postby Cmarie03 » Fri May 24, 2019 6:45 pm

MissMolly wrote:
Cmarie03 wrote:I am a month out from radiation for rectal cancer and having a lot of brownish vaginal discharge. Is this normal?? I was told by my doc it was but it seems like a lot and I am worried.


CMarie:
I believe your physician is correct in lowering your alarm level with regards to the brownish vaginal discharge.

It is likely due to your plummeting sex hormone levels secondary to the effects of radiation. What you are experiencing is called “withdrawal bleeding.” The uterus prepares a monthly cycle lining but the progesterone levels are not able to sustain it. What would have been your normal monthly cycle lining becomes devitalized. The tissue begins to “decay” with a delayed sloughing, resulting in the brownish-coloration from decayed and released hemoglobin rather than the bright red associated with a normal period.

You may experience more episodes of withdrawal bleeding and they will likely be irregular in timing. Brownish-discharge. It can have an off-odor. Irregular spotting.

I hope this helps ease your immediate concerns.
Karen


Thank you so very much!!!
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19


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