Estradiol For vaginal atrophy after breast cancer. Is it safe?

Posted by tres77 @tres77, Mar 10 8:51pm

I have developed severe atrophy 25 years after estrogen receptive breast cancer. Did chemo, radiation and 5 years of Tamoxifen. I was always told NO estrogen. I am experiencing extreme pain and bleeding so sexual intimacy is impossible. I also have been diagnosed with Lichen sclerosus. I am 65 years old. My gyno has prescribed Estradiol vaginal cream 0.01%. I am told the new view and trials say is it is safe for breast cancer survivors. Anyone been down this route or had their gynecologist say this? I really want to try this for quality of life with my husband but I am also very scared.

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@kensiejames

Hey there!
The Mona Lisa treatment was done in 2 sessions. I did not need the Estradiol after the Mona Lisa treatment. For those 3 + years I was fine. The initial effects gradually wear off.
Something new…. Look into ““Tamoxifen Vaginal Suppositories”. Google it.
Manufactured by Dare-VVA1
( Daré Bioscience). It is a soft gelatin capsule containing tamoxifen to treat vulvovaginal atrophy without hormones. I have not been able to find a pharmacy that carries it. I don’t think it’s out on the market yet.

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Interesting! As far as the tamoxifen staying local in the vaginal area and not being absorbed systemically - I still have a difficult time understanding how the mucus membrane of the vagina doesn’t have a superior drug uptake like mucus membrane in other parts of the body. That superior uptake is why people chew tobacco for the nicotine absorption in the mouth, and why people push drugs up their nose. It is known that men’s genitals have the ability to absorb topicals at a higher rate than their regular skin, what about women (not studied??)

Tamoxifen (pills) has reduced my vaginal atrophy, and has increased estrogen-like responses in other parts of my body. It is dose dependent - there is a difference between the response from 20 mg and 5 mg. I saw noticeable difference in the skin elasticity of my face and upper arms at 20 mg along with stronger fingernails. Vaginally, the skin condition is better than it was pre-treatment, but the thickness of the skin has lessened with 5 mg.

So how high a dose of tamoxifen is needed in a vaginal tablet to make a difference? We should be able to see studies where they took blood samples to see how much tamoxifen, or endoxifen, is in the blood after using the tablet. And, is there an immediate response or does the vaginal tablet need to be used over enough time to have an effect, meaning we’re dosing our bodies with a steady amount of tamoxifen. Tamoxifen is well known to increase the incidence of uterine cancer and endometrial polyps.

When considering tamoxifen you have to look at the side effects. I realize you could ask 100 of us about side effects and the answer is all over the place, from none to horrible. Regardless of the inconsistent answers, tamoxifen is a powerful drug. It crosses the blood brain barrier. It affects a variety of organs in the body. It is being studied to be used for bipolar disease to reduce mania.
At 20 mg I had pretty major brain fog, headaches 24/7, and body temperature dysregulation (not hot flashes, but overheating more easily and cooling off more slowly). At 5 mg, no headaches, minor brain fog, minor body overheating.

I’m living proof that tamoxifen improves vaginal atrophy. And it would be great if a vaginal tablet would do the same without systemic absorption. But I am skeptical of the drug industry - how long did women take tamoxifen in doses greater than 20 mg unnecessarily. Is 20 mg even required? Drugs are often produced using the maximum dose that provides a response. The minimal effective dose is often unknown.

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@triciaot

Interesting! As far as the tamoxifen staying local in the vaginal area and not being absorbed systemically - I still have a difficult time understanding how the mucus membrane of the vagina doesn’t have a superior drug uptake like mucus membrane in other parts of the body. That superior uptake is why people chew tobacco for the nicotine absorption in the mouth, and why people push drugs up their nose. It is known that men’s genitals have the ability to absorb topicals at a higher rate than their regular skin, what about women (not studied??)

Tamoxifen (pills) has reduced my vaginal atrophy, and has increased estrogen-like responses in other parts of my body. It is dose dependent - there is a difference between the response from 20 mg and 5 mg. I saw noticeable difference in the skin elasticity of my face and upper arms at 20 mg along with stronger fingernails. Vaginally, the skin condition is better than it was pre-treatment, but the thickness of the skin has lessened with 5 mg.

So how high a dose of tamoxifen is needed in a vaginal tablet to make a difference? We should be able to see studies where they took blood samples to see how much tamoxifen, or endoxifen, is in the blood after using the tablet. And, is there an immediate response or does the vaginal tablet need to be used over enough time to have an effect, meaning we’re dosing our bodies with a steady amount of tamoxifen. Tamoxifen is well known to increase the incidence of uterine cancer and endometrial polyps.

When considering tamoxifen you have to look at the side effects. I realize you could ask 100 of us about side effects and the answer is all over the place, from none to horrible. Regardless of the inconsistent answers, tamoxifen is a powerful drug. It crosses the blood brain barrier. It affects a variety of organs in the body. It is being studied to be used for bipolar disease to reduce mania.
At 20 mg I had pretty major brain fog, headaches 24/7, and body temperature dysregulation (not hot flashes, but overheating more easily and cooling off more slowly). At 5 mg, no headaches, minor brain fog, minor body overheating.

I’m living proof that tamoxifen improves vaginal atrophy. And it would be great if a vaginal tablet would do the same without systemic absorption. But I am skeptical of the drug industry - how long did women take tamoxifen in doses greater than 20 mg unnecessarily. Is 20 mg even required? Drugs are often produced using the maximum dose that provides a response. The minimal effective dose is often unknown.

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No matter what the medication, there is always going to be systemic absorption. And you are correct, we can’t rely on the pharmaceuticals to be a good steward. So you do the best you can, be diligent about researching the meds, and weigh the benefit against the risk.
If I decide to try the vaginal capsules, I will start with half, or less, of the recommended dose. Trial and error !
I endured 5 years of Tamoxifen and 2 years of Famara. It was horrible .
All the best 🙏🏻

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Gosh I didn’t know that was an option. I did 5years of tamoxifen pills 2000 thru 2005. I see not much reduce done on the vaginal capsules. I will look into it more.
Thanks for the info!

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The estrogen cream is ONLY treatment that has helped pain, atrophy etc and I tried everything g. Dana Farber was fine with it! I’m 58 yrs and only one year into Letrozole which has also wrecked my bone density and it sounds like I’ll be on it for 10 yrs!

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@semurrey

The estrogen cream is ONLY treatment that has helped pain, atrophy etc and I tried everything g. Dana Farber was fine with it! I’m 58 yrs and only one year into Letrozole which has also wrecked my bone density and it sounds like I’ll be on it for 10 yrs!

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Yes I have osteoporosis also. Definitely all these drugs have side effects that do other things. It’s hard to know what to do.

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Hi
I am 65 years old just diagnosed with breast cancer dcis had surgery December 15th lumpectomy had second surgery February 20th Sentinel node my oncologist prescribed for me vagifem. Because I was having constant bladder issues my GP would not give me anything so I have been on it now for 2 months huge difference I take it every third day vaginally it's a tiny pill I wish you luck

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@kensiejames

Hey there!
The Mona Lisa treatment was done in 2 sessions. I did not need the Estradiol after the Mona Lisa treatment. For those 3 + years I was fine. The initial effects gradually wear off.
Something new…. Look into ““Tamoxifen Vaginal Suppositories”. Google it.
Manufactured by Dare-VVA1
( Daré Bioscience). It is a soft gelatin capsule containing tamoxifen to treat vulvovaginal atrophy without hormones. I have not been able to find a pharmacy that carries it. I don’t think it’s out on the market yet.

Jump to this post

@kensiejames
I got excited when read your comment about possible new treatment for vaginal atrophy - Dare-VVA1. I have a gyn appt tommorrow so thought this is good time to read up on it and ask her about.

Did some research and it may be years before we see it on market. I even went out and looked to see any clinical trails on drug. There was small one (17 very selective participants) done in Australia that ended in March 2023 - NCT05378269.

In Dec 2023, FDA approved the clearance of INVestgation application. From what I read, that is just first part in the 4 phases of drug approval. Each phase can take 1 - 3 years. In each phase they increase the size of clinical trail's till prove drug is effective and safe.

So guess not going to wait for that drug as a solution.

Thanks for telling us about.

REPLY
@roch

@kensiejames
I got excited when read your comment about possible new treatment for vaginal atrophy - Dare-VVA1. I have a gyn appt tommorrow so thought this is good time to read up on it and ask her about.

Did some research and it may be years before we see it on market. I even went out and looked to see any clinical trails on drug. There was small one (17 very selective participants) done in Australia that ended in March 2023 - NCT05378269.

In Dec 2023, FDA approved the clearance of INVestgation application. From what I read, that is just first part in the 4 phases of drug approval. Each phase can take 1 - 3 years. In each phase they increase the size of clinical trail's till prove drug is effective and safe.

So guess not going to wait for that drug as a solution.

Thanks for telling us about.

Jump to this post

I had the Mona Lisa for vaginally dryness. It only lasted a month or two. I use replens now and it works well. It is clear and it does not come out as white on underwear. It has no hormones in it and since I had endometrial cancer. Had hysterectomy almost two years ago. I do not expect a return. Also I had ILC in left breast and am greatful that that it was small and did not have to have radiation nor hormonal block medication. I am happy the replenz works and has no hormones in it.

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I was on yuvafem for a whole year. Got terrible migraines from it. Stopped it and use vitamin e now. My doctor did say a little bit still gets absorbed into the blood stream.

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@tres77
I saw my gyn provider Friday (at Mayo) and she was eager to talk about this subject.

Here is JAMA article about study:
https://jamanetwork.com/journals/jamaoncology/article-abstract/2811413

She wrote a prescription and I will be starting. Also mentioned Mona Lisa treatment. I said will try Estrogen Therapy first. Mona Lisa is not covered my insurance.

Tress77, I scan the comments and can not tell if tried the Estradiol, if so did it help?

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