Radiation induced menopause

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[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Radiation induced menopause

Postby [Ana & Alex] » Sun Jun 18, 2017 6:08 pm

Dear fellow ladies post radiation therapy,
I too have hit menopause with 29. What bothers me the most is the colateral damage in my lady parts...

I'm bumping this topic because I can't seem to find an answer to a relatively simple question regarding vaginal rehabilitation after treatment.
I will tell you my story and I would be really grateful for some insight you may have regarding my situation.

It has been really difficult to find information about this topic, none of my doctors has expertise in the area, my radiooncologist and gyn are ignorant regarding this thematic and I'm lost.

Weren't for the advice from our dear weisssoccermom I would still be waiting until this day.

So.. here it goes...
I had radiation in February/ March and have begun during this period with premarin creme and dilation.
Then until surgery I kept up with it 2-3x a week. I was able to have sex (patiently) and a pap smear in that time...

My surgery has followed on 10th May. And since then I have tried to have sex once but it was too painful. The simple aplication of tampon or an ovula is also painful.

It will be six weeks this week after my surgery and I'm already on chemo until November. I don't want to wait any longer, because I'm afraid it will get much worse.

How did you proceed after surgery?

How long did you wait until starting the premarin I.e. starting dilation I.e. having sex?

Were you able to keep up the rehabilitation during chemo?

I'm starting today with premarin ovula everyday for two weeks, then afterwards I'm planning to start 2 - 3 x a week premarin plus dilation.

Good plan?
Thank you so much for your insight!

Love,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Radiation induced menopause

Postby Aqx99 » Sun Jun 18, 2017 9:22 pm

Lucky me, my surgeon poked a hole in my vagina during surgery. He discharged me with the instructions of nothing in the vagina for 3 months, to let it heal. I go in September to see my radiation oncologist and she is going to do a pelvic to assess my vagina. I wish I could be more help.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

weisssoccermom
Posts: 5865
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Radiation induced menopause

Postby weisssoccermom » Sun Jun 18, 2017 9:50 pm

The Premarin will help bring some 'elasticity' to the vaginal canal BUT....scar tissue has already formed and after that happens, Premarin won't work the same as it would have if it had been used DURING and AFTER radiation.

Once the scar tissue forms in the vaginal canal, it is difficult, if not impossible to break/stretch those adhesions, but don't give up. Things may not be what they were beforehand BUT......with a lot of work, they can get a little better.

For ladies reading this.....IF you are just starting chemoradiation PLEASE PLEASE....DO NOT WAIT until after treatment to begin dilation and a treatment with a cream like Premarin. Most rad oncs/oncologists, etc. don't really pay much attention to this issue.....their reason....it's not a part of their treatment and is 'inconsequential'. However, to the female patient, regardless of age.....the adhesions and scar tissue is anything but 'inconsequential'. It's more than just dealing with our sex life.....it's dealing with the pain, with our sexuality, being able to get pelvic exams, etc. DON'T allow the scar tissue/adhesions to form.....DO SOMETHING PROACTIVELY....PLEASE DON'T WAIT.
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

Cj51
Posts: 892
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: Radiation induced menopause

Postby Cj51 » Mon Jun 19, 2017 11:18 pm

I second Weisscoccermom's advice. Don't wait! I didn't find this forum and her advice till it was too late for me. My gyno opened my vagina during surgery but it still healed closed again. No more Pap tests for me, and sex is painful and rare. I really wish I'd have known then what I know now.

Regarding hot flashes, I'd been taking Fluoxetine (generic Prozac) 10 mg once a day for years, for PMDD. After the radiation did my ovaries in, I figured I could stop. That's when the hot flashes started, so I started it up again. Hot flashes became rare, and much less severe when they did happen. They're inexpensive, too.

Good luck!
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
10/15 NED

kal74
Posts: 9
Joined: Fri Jul 28, 2017 7:26 pm
Facebook Username: kal74

Re: Radiation induced menopause

Postby kal74 » Wed Aug 02, 2017 2:29 pm

Wow I'm starting radiation next week and didn't even think to ask about these issues. What should I be asking my oncologist or doing proactive to avoid female issues? Thanks

weisssoccermom
Posts: 5865
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Radiation induced menopause

Postby weisssoccermom » Wed Aug 02, 2017 5:39 pm

kal74...just sent 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

lilmiss82
Posts: 12
Joined: Mon Sep 13, 2010 6:59 pm
Facebook Username: Melissa Cortez

Re: Radiation induced menopause

Postby lilmiss82 » Thu Aug 03, 2017 10:22 pm

I had pelvic radiation back in 2009 and was never told about dilation until it was to late. Now years later, I have so much scarring and shortening, no access to my cervix that it makes me so upset that not only did i lose my ability to have children but also have the added benefit that the parts that also contribute to my womanhood were destroyed. Does anybody know of any type of surgeon or surgery that would help this issue? Like a reconstructive surgery or anything?? This happened when I was 27 I'm now 35 and can live like this. I'm on creams and replacement therapy but that doesn't help with scar tissue.
2009 stage IV rectal cancer age 27
6 weeks chemo/rad
Sept 2009 liver resection and LAR
Nov 2009 started FOLFOX ended May 2010
Dec 2010 Mets in lungs
Mets have endure FOLFIRI, Cyberknife, Radiation and FOLFOX.
Upper left lobectomy 5/5/15 with Folfox 3 months before surgery and 4 cycles of Folfox after lobectomy.
12/15 recurrent rc in lower right lung.
Lower right lobectomy to follow sometime 2/16

MaryannW
Posts: 70
Joined: Thu Jun 04, 2015 7:32 am

Re: Radiation induced menopause

Postby MaryannW » Thu Aug 03, 2017 10:35 pm

I'm following this with interest. I was not told about this by radiologist and now have stenosis and scarring. Sex is impossible and it makes me so sad to lose this in my life along with everything else cancer takes away. I have tried pessaries but not that much difference and dilators but damage is already done.
Dx Feb 2015 RC Stage 2a
Pathology stage 1 (post surgery)
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016

fdcfromkcmo
Posts: 3
Joined: Fri Jul 06, 2018 5:35 pm

Re: Radiation induced menopause

Postby fdcfromkcmo » Mon Jul 30, 2018 6:07 pm

Topping this thread after an unhelpful meeting with a gynecologist today, who said I'd stumped her and had to go ask someone else.

My radiation oncologist didn't mention anything about stenosis and I've been avoiding reading much online until now (2 months after chemo, 1 day before reversal surgery). I have not been dilating, sexually active, etc.

My gynecologist today asked a doctor who recommended dilators and premarin. Cool, expert advice that I knew going on from googling it! Problem is that the Premarin is $300+/month with no generic and my insurance won't cover it?? She said maybe my sexual function was fine, and I'd find out for sure when I had a partner again.... thanks..?

I've lost so much due to cancer and to lose my sexual function would make me just wanna die. :(
Any advice?

Also i just bought a small vibrator instead of a dilator set because it was about $100 cheaper and that too would have been out of pocket.

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susie0915
Posts: 818
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Radiation induced menopause

Postby susie0915 » Tue Jul 31, 2018 8:42 am

I just saw my gynecologist as I was having periodic blood when I would wipe after urinating. I was sure it must of been some type of irritation as it would stop as quick as it started. I tried to look myself and really couldn't tell. My gynecologist had told me that the tissue in my vagina was pretty thin from radiation coupled with normal vaginal atrophy from aging. He examined me and noticed a small lesion and said that is where the blood is coming from. He did prescribe Premarin to just use on the outside of the vagina. (Yes it is expensive). He said because of radiation I am not a candidate for laser therapy that is used to treat the thinning of vaginal tissue. He was going to call a colleague in Cincinnati and see if it was possible to do just on the outside of the vagina. Radiation sure does do a number on us. I have had no problems with pain during Pap smears or sex, so I don't think I have alot of adhesions, but the vaginal atrophy is definitely a problem.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

jedimomof3
Posts: 4
Joined: Thu Jul 26, 2018 12:47 am

Re: Radiation induced menopause

Postby jedimomof3 » Wed Aug 01, 2018 12:45 am

You ladies are amazing! I was diagnosed in June of 2018 with Stage 2 rectal cancer at 39. I'm so glad that I read this forum as I was starting treatment. I meet with the rad onc and asked about vaginal problems, he dismissed my concerns with little regard. He told me that I absolutely would go through menopause, and that I would have vaginal stenosis. I started Chemo and Rad, and in the mean time made an appointment with my Gyn. On my seventh day of treatment, I meet with the Gyn and had my IUD removed. After speaking with him, I decided that radiation was no longer going to be in my treatment plan and I stopped that day. The radiation onc was not happy with me, and had my chemo stopped immediately as well. I got a second opinion, and my new team decided that I won't need radiation and a much shorter course of chemo if any at all! I'm scheduled for a LAR in 3 weeks. I'm so grateful to have run across this, thank you so very much! I wish you all the best.
39 F - Mom of 3=13,12,8
Jan-May 2018-Rectal Bleeding
6-11-18 coloscopy/CT same day
Stage 2 rectal Cancer, T2-3
CEA 5.6
6-18 PET Scan, possible nodes
7-3-18 port placement
7-9-18 start rad & xeloda
7-17-18 decide rad isn't for me, stop treatment
7-25-18 get 2nd opinion
7-27-18 pelvic MRI w/contrast, nodes look clean
8/6/18 genetic results in
neg for colorectal cancer, positive for BRCA1
8-14-18 LAR, temp Ileostomy

Eleda
Posts: 133
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Radiation induced menopause

Postby Eleda » Wed Aug 01, 2018 9:28 am

Wow, I can't believe Ur radiation oncologist didn't go through all this with u,, esp at a young age,,, Lee ita only now I realized Ur female lol
My oncologist offered to pin my overies out of the way but it would delay treatment,,,
Anyway I was done having babies and figured I was heading for menopause anyway soon so politely declined his kind offer,,,, :wink:

They were adamant on the dilation tho which I have done but not conciderably TBH ( not sexualy active either) but had my own vibrator so prefer that than the hard plastic poles they give u.

I also had my surgery May 10th and I think my vagagay is ok but might be shortened,,, I'll have to actually have sex to figure that one out, and the last thing u want to do after surgery,,, in my care in pictullar as it was a TATME

As for menopause,,, I've had no period since Jan but apart from night sweats which I had already,,, I've nothing else

Maybe I'm lucky or not who knows??

I do have slight urethra stenosis and the urologists put a larger than normal cathather in during my surgery which helped hugly

But appart from my allergic reaction to oxaliplatin I've been pretty lucky

I've had my report. Back saying MMR intact, so means no lynch,,, but is that a preclusion to no kras or BRAF or braf too or no??? If anyone can help on this ?? Didn't want to start a thread for one question???

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

Caat55
Posts: 483
Joined: Sat Dec 23, 2017 6:01 pm

Re: Radiation induced menopause

Postby Caat55 » Wed Aug 01, 2018 5:08 pm

I just started Prempro, hormone replacement to help with radiation/ menopause. The thing that really convinced me with a story I heard on NPR about Alzheimer and hot flashes. According to the story, the brain doesn't like hot flashes, actually can cause some damage so hormone replacement briefly in early stages is beneficial. It has also seemed to help with sex, tissues, and pain. My gynecologist said she had seen worse damage and thought with hormone and practice :oops: it would get better.
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

etaylor22
Posts: 8
Joined: Wed Nov 29, 2017 9:05 pm

Re: Radiation induced menopause

Postby etaylor22 » Wed Aug 01, 2018 7:35 pm

My onc did not go over this either. The little video glassed over it like it was nothing. When I asked outright, he said "These things rarely happen." Bull shit! Here I am in menopause, almost in osteoporosis, and a little stenosis - but we had sex lite rabbits despite pain, tightness and discomfort. Call it therapeutic. I am pissed though. About everything. I'm 40, no signs, and now here I am. I did refuse more chemo. Scans in 3 months. We will see. I feel lied to and duped. I wish I refused everything but surgery. I'm mad all the time now, about everything. I even almost jumped out of my car the other day because someone cut me off in the drive thru, and then again when another mother rode my ass on the road with her young son in the front seat. I obeyed the rules of driving, and she set a bad example. I'm not usually like this, but I am now. I've gone, what we call, Full Baltimore! And I feel satisfied in the fact that I did get in my Rad Onco's face about dismissing my concerns. He's an ass. His penis should appreciate the fact that I appreciate my husbands penis, and asked the direct questions he was not willing to discuss. He's an ass. I never went back for a follow up with him - even though he is a good rad and shrunk my tumor to an unmeasurable entity. He's an ass. Menopause - still sweating my ass of here, tits have shrunk, and sagged, skin has spots, skin is just weird saggy, and I'm just pissed. Did I mention I was pissed?!
40yo
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage 2?, Path-neg margins, 19 Lymph nodes neg
4/10/18 XR Barium Enema - ileo reversal leak test
4/27/18 Reversal
In Denial...Happiness Lost

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Radiation induced menopause

Postby Aqx99 » Sun Aug 05, 2018 1:12 pm

I am a little more than a year past my surgery and the menopause is still going strong. I had hoped that having my ovaries removed would have meant it would go quickly, but I do not have that kind of luck. My next medical adventure is a bilateral prophylactic mastectomy. My lifetime risk is too high, I want to cut that down by 90%. I'm kind of looking forward to not having to wear a bra anymore.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy


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