...my oncologist said "no" to estrogen in ANY form for me...

Estrogen, more than just cream - should I start a new thread?
 

There have been some interesting articles recently about estrogen's effects on breast cancer. In JNCI, apparently there's an editorial by Don Berry and Peter Ravdin and they say (quoted from Eureka news)

" In an accompanying editorial, Donald Berry, Ph.D., and Peter Ravdin, M.D., of the University of Texas M. D. Anderson Cancer Center in Houston suggest that hormone therapy itself may not cause breast cancer. Instead it could promote tumor growth while its withdrawal may slow or stop it. They add that using individual-based—in addition to population-based—data would give researchers a better picture of relationship between hormone therapy use and breast cancer."

Then Craig Allred and someone else have an article called "The Estrogen Paradox", here: http://www.medscape.com/viewarticle/559611 .

The first sentence of that article begins: "A randomized controlled trial published in 2006 demonstrated that postmenopausal women who underwent hormone therapy with estrogen alone for a mean of 7.1 years unexpectedly had a decreased risk of breast cancer.<SUP>[" </SUP>
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<SUP>Go figure! They go on to say that estrogen may promote tumor cell apopotosis (death) in some instances and fuel growth in others. (I'm having trouble with font format after the copy/paste. 'Hope this is legible. Anyway, read the rest of the article. I had trouble understanding why they think this paradox is possible, but I do not doubt that they know what they're talking about and that this is at least a plausible theory to explore. </SUP>
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<SUP>So much that we do not (yet) understand. It makes it hard to make these decisions, but I agree that this is a very large qol issue. Brenda, as for the "use-it-or-lose-it" theory, my experience is that it only makes things worse, because the tissue keeps getting damaged and doesn't heal very well. That may work for garden-variety menopausal atrophy but I don't think it's enough to combat the conditions that go with AI use, at least for some of us. I'd want to see studies of women on AI's that showed that this approach worked - and I don't think that there are any. </SUP>
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<SUP>Debbie L.</SUP>
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Debbie L.,

Here is a link to a news release from December, 2005, regarding the discovery by Fox Chase Cancer Center researchers (Philadelphia, PA) who discovered that some bc cells once fueled by estrogen can be killed by the hormone: http://www.brightsurf.com/news/headl...he_hormone.htm

I have read some papers discussing estrogen deprivation and the ability of some ER+ bc cells to adapt to extremely low ER levels via hypersensitivity. The researchers in the above article took some of those cells, re-exposed them to estrogen, and killled them by doing so.

Our hormones fluctuate throughout life; it is not practical to assume that they will not continue to do so in light of intentional manipulation via deprivation. We need additional studies and better monitoring so that our medications can be constantly adjusted, the same way diabetics constantly monitor their sugar levels or those with hypertension constantly monitor their systolic blood pressure for medication adjustment. This is not a static situation.

Back on the main topic, I saw my onc yesterday and told him about my gyn's plan. He rolled his eyes at the weekly blood draws, and told me he thought I would "do just fine." I am anxious to get started on the treatment, while I still have all this Herceptin in my system (which looks like it will still be there, in varying degree, for the next 22-26 weeks). The fact that researchers found that reintroducing estrogen after a prolonged period of estrogen absence was helpful, rather than hurtful, to some bc cells has given me more confidence about the treatment.

BTW, my gyn was also telling me when I went to see her a year ago to treat VA pre-bc to keep having sex, to promote blood flow and keep the tissues from retracting further. I have read some papers on this, and apparently, women who have more active sex lives post-meno have less VA. I am wondering if this is a chicken and egg king of thing - do they have less VA because they have more sex, or do they have more sex because they don't have VA?

Hopeful

Very useful info, Brenda, thanks so much.

I like the training program idea and will bring it up with my onc on my next visit.

As a spouse this thread has me teary-eyed. I am still so new to this that I say "all I want is for her to be around for a long time to come...nothing else matters!!!".

But I know that it does matter or at least will matter down the road; to her and to us as a couple. Ruth is 100% ER+, and will go on a ER blocker after surgery for 5 years. We've already been so preoccupied that sex has not been on our priority list at all. (on top of chemopause and peri-menopause!) But I am thinking now; we have been so proactive about some of the other side effects, with some marked success thus far, we should try to be proactive about this as well? Especially as it's not just sex but the UTI's, skin irritations, etc.

Thank-you for sharing!

PS Natural Progesterone
 

PS

This is probably not helpful for Ruth as she is also PR+, but have any of you tried natural progesterone? It can help some of the menopausal symptoms w/o the dangers of estrogen, and may actually have a positive impact on bc.
There's some good books out now re: natural progesterone supplementation.

TRS

Progesterone
 

Hi Terri

I don't think there is a better ER/PR combo than Ruth has, so that's really good.

At diagnosis in 2002 I got Dr. John Lee's books, and have read many others. I too have a high PR (95%), but I tend to see the use of progesterone and other hormones for me more along the lines of what Hope said -- that probably the most effective management will be lifelong periodic testing and lifelong balancing of any supplementation.

Even if saying this is repetitive, I think what we need most is to have an endocrinologist sitting on each one of our tumor boards, and to get their impression at least once a year for the rest of our life to see what newer info they have.

AlaskaAngel

Here is a link to some previous threads on the topic

http://her2support.org/vbulletin/sea...earchid=108907

And a previous thread on wider issues

http://her2support.org/vbulletin/sho...light=bone+dry


RB

Hopeful
 

I wanted to write this to tell everyone my experience with vaginal atrophy. I was hesitant to do this at first because I know that everyone really takes into consideration the things that I say and do. I am not 100% entirely certain of topical vaginal estrogen preparations but I did do my research - there's just not alot out there.

As many of you know, about 2 years ago I got an oophorectomy for at least 1/2 dozen reasons. A few weeks later, I started Arimidex. After about 2 months, I began experiencing UTIs and vaginal infections (both yeast and bacteria but not concurrently - I would get a bacterial from the ping pong effect of UTI/sex (or trying to)/vaginal). Antibiotics for the vaginal/bladder would cause vaginal yeast infections. I think you get the picture. I wanted to have sex and had no dryness issues but the lining was so thin that it would get damaged regardless of lack of dryness. In February, right before a well planned and alone with my husband only vacation in the Caribbean, I got another bladder infection. When I returned, I had a yeast infection again. My gyne recommended Premarin cream. 1/4 of a tube 2X per week. I started immediately. I contacted my onc (we "talk" on email) and did not hear back from him. I figured, if he said "no way" then I would stop as I only took one application. I felt the effects immediately since my vagina was so thin and damaged. My onc wanted me to use estring instead. He hadn't gotten back to me for 4 days because he was at a QOL conference where the safety of estring was discussed. I switched over. At 6 weeks we tested my estradiol level and it was the same as 6 months prior (I was in such agony I had him test it because I at least wanted to know if it was low). I am much better now. I still get yeast infections (not alot but it is a side effect of topical vaginal estrogen preparations AND I was plagued with them in my late 20's and early 30's) but I have not had a UTI since that February vacation (got a great tan though since Cipro warns to stay out of the sun and would you in that situation?!)

The estring is not perfect but even my gyne says my vagina is healthy now (since my annual pap versus all the times I went there because of infections and atrophy). I do know the risks are small but my gain is great as frequent and recurrent UTIs can cause future bladder cancer. I also had a uterine scan to make sure the estring isn't causing any problems there and all was well.

I probably should have shared this before but I wasn't sure what to really do. Have a great weekend. We are having a HUGE sweet 16 party for my daughter tomorrow night and I just finished making trays of ziti.

Love to all

Thanks Becky
 

Becky, thanks for sharing your experience. I have been researching this issue since mid week, and have found that doctors are often more comfortable with prescribing topical estrogen therapy for bc patients than patients are with doing the therapy! As you point out, it is not just a QOL issue - repeated infections and irritation can lead to worse problems down the line, or, as with me, necessary cancer screening can't be perfomed because the doctor can no longer insert a speculum. This is another risk/benefit analysis, where it is quite possible for the benefits to out weigh the risks. My gyn intends very close monitoring to start, which gives her comfort and me the confidence to start treatment. As long as we remain under active supervision by our doctors, I think there are adequate fail safes in place for those who want to try this approach.

BTW, happy birthday to your daugher! Have a blast at the party - the ziti sounds mouthwatering right about now. :)

Hopeful

Could someone tell me what UTI and QOL stand for?

"UTI" = Urinary Tract Infection

"QOL" = Quality of Life

Sorry to talk in shorthand!

Hopeful

Update
 

Shortly after my last post above in this thread, I started tx with Estrace cream for my VA. My gyn insisted on blood work every week to monitor ER levels. My baseline, before starting the cream was <50 pg/ml (the lab sets the cut off for post-menopause at 130). After the first week, the level was up to 112; in week two, it was 106. I couldn't get to the lab the third week, but did go for the fourth and fifth. I got the results of my third blood test today, and the values were back to <50, where I started. I am assuming the results of the final test I took will be the same. I see my doctor in two weeks, and will find out the next step in my tx then. I am feeling much better, noticing increased sensation and less tenderness and some improvement in elasticity. I have noticed some increase in the frequency and intensity of hot flashes, but they are VERY mild compared to what I endured when I went through menopause. Thus far, I am very pleased with the results.

Hopeful

AI's and supplemental vaginal estrogen use
 

Your results are very interesting, Hopeful, and I hope you will continue to post as you find your way through the confusion about the issue of supplemental vaginal estrogen and use of AI's.

As long as AI's "work" in terms of avoiding cancer it is just too easy for doctors who are not putting up with the problems from them to give lip service to the side effects because their own sex life is not affected and they are getting what they want out of the deal.

Better studies need to be conducted to show what the possibilities truly are for using supplemental vaginal estrogen for Vaginal Atrophy. The intimacy of this issue is leaving too many of us without solid answers, and too many of us struggling with problems that have a major impact on our daily life.

Thanks so much,

AlaskaAngel

Sex
 

Last year someone posted a string from BreastCancer.org called "I want my Mojo Back" I don't know how to bring it over, but you can go to breastcancer.org, get into Community Knowledge Exchange and do a search.

It's been several weeks since I posted, but wanted you all to know what happened after my onc referred me to a GYN oncologist. This guy told me I have the vagina of a 60-70 year old. I'm 48. He prescribed Premarin cream full dose for 2 weeks. Oh man, what a difference that made. Then, I went half dose, about 1 tablespoon, 2 times a week, for about 8 weeks. He says I'll be able to titrate it down to a fingertip application, as necessary. I can't tell you how much of a difference it made. I still use Replens, but it doesn't hurt.

Between my onc and the GYN onc, I feel like I'm in good hands. They both think if I'm going to recur, it won't be because of the estrogen cream. There are forces much greater at work.

In the meantime, I'm able to have sex with my husband with relatively no pain. Now, if I could just get a little desire going.

Oh yeah, NO UTI's or pain in my bladder for several weeks either.

Hope this helps some other "old ladies" out there.

VA follow-up appointment with gyn
 

Yesterday I had my 8 week follow-up with my gyn after starting the Estrace therapy. To say she was delighted with all the results, both the blood work and the tissue health, would be an understatement. She told me to continue to use the ointment as I have been, (a dollop about the size of a pea every three days) that I don't need to increase the usage or amount, and that the Replens (which I have been using for over a year) actually makes the tissue need less of the estrogen cream. She said the difference in the tissue quality before and after was striking, just using this little amount twice a week. She believes that the tissue is soaking up the estrogen, preventing it from being released into the blood stream. She said the tissue was better hydrated, there was appropriate moisture and elasticity is returning. She said no more blood survelliance; I am to have another level check done in Dec. and then see her 3 mo. after that. Since my annual is due in April, I'll just extend that visit by another 3 weeks. At that time, she said we will see if there are any new agents we may want to switch to. She said as long as I am comfortable with using ER, it is ok with her. She said straight estrogen was not as dangerous as combination hormonal therapy.

As a postscript, I got the results of my final blood work today (for some reason, the lab took 9 days instead of the usual 4 to issue a report). The ER levels were up slightly, to 79 pg/ml (130 is the upper end cut off for post meno levels). My gyn indicated to me in our discussion that so long as the levels stayed below the cut off for post-meno, she was ok with it. I guess the levels will bounce around a bit.

I am very positive about the effect this treatment is having on my quality of life, and feel any associated risk is far outweighed by the benefits.

Hopeful

WOW I can write a short post after all...
 

Brenda, I just happened upon your post and estrogen creams. I tried the hyperlink and got NO MATCH. Could you check it out. Perhaps you typed a wrong letter or dashed when you should have dotted.

I am interested re HOT FLASHES. But all your information is good to know when and if other issues arise. Thanks.

Andi :)