Estrace cream vs Estring vs Vagifem?

hutchibk · 05-07-2008, 10:29 PM

http://www.susanlovemd.com/breastcan...ID=22&CATID=33

This link really helped me with this question and I find Susan Love a very credible source, so I am glad I found this tonight. Maybe it will help answer questions for others...

Any thoughts or differing info that I/we should consider?

Thanks all!

DonnaD · 05-08-2008, 02:13 AM

Hi Brenda,
Had this conversation with my Gyn who was recommended to me by my onc. The Gyn was for the cream but said my onc would not allow it. I never persued it with my onc. Some time ago our sisters here had a suggestion of a non estrogen lubricant but chemo brain can not remember the product name. Perhaps someone else will remember and post.

How are you? Good to meet you and hope our paths cross again.
Hugs,
Donna

hutchibk · 05-08-2008, 02:33 AM

Great to hear from you Donna - I'm good! How are you?

Lubricant is great, but doesn't correct some of the longterm effects that I am hoping to reverse...

dlaxague · 05-08-2008, 05:59 AM

I agree that there's more to the problem than simply lubrication. I think that for garden variety menopausal dryness that might be a solution but when AI's are part of the picture, the solution seems to have to involve some estrogen. I only took an AI for two years but was disappointed to find that after I stopped it, things did not return to normal. "Things" really didn't improve at all. Has that been others' experience?

This is pure speculation/brain wandering - but I've always wondered if it wouldn't be safe to use local estrogen in adequate quantities and take Tamoxifen at the same time - specifically to block any systemic leaking of the estrogen. That's what T does, right? It blocks the estrogen at the level of breast cancer cells. So even if one had moved past Tamoxifen (end of five years or progression), couldn't it still be of benefit in making the use of a little dab of estrogen safe?

My experience is that this problem moves very slowly. It took years before it got bad enough that I had to do something. For me (ERPR -), the first "something" was an Estring. At that time, it had the most information available about actual blood levels of estrogen with its use (slight rise on the first few days, within normal postmenopausal limits after that). It helped and all was good for several more years but gradually things deteriorated again. Now I have estrogen cream, the bioidentical pricey one (gyn thought it was worth it as I guess there is some hint that it might be better/safer than premarin), and I use it very sparingly. And it helps.

This is a hard decision, because there's not as much information as we'd wish for, to make the best decision. I don't know what the best answer is.

It does annoy me though, to read so many articles that claim to be able to help. They are so perky and happy and make it sound so simple - just use some lubricant and maybe some replens and you'll be just fine, sweetie. Argg.

Debbie Laxague

Hopeful · 05-08-2008, 06:48 AM

My gyn prefers to use Estrace. When I first went on it a year ago, she had me do blood draws every three weeks to monitor the ER levels. The only "spike" was with the first application, and even that was not enough to raise the circulating ER above post-meno levels. I am 80% ER+ and 50% PR+, so have been on an AI since October 1, 2006. My onc initially suggested switching to Tamoxifen, for exactly the reasons Debbie sets out in her post above, but, due to the studies I have read about Tamoxifen being a potent Her2+ promoter, I said no way.

When I saw my gyn last month for my annual (which included blood work - my ER was just above the minimum threshold for detection), we noticed there was greater elasticity, but still not enough for me to comfortably have intercourse. (By way of comparison, she could barely insert the speculum last year, and was concerned about whether she could collect enough cells to do a pap smear. This year, it was uncomfortable, but no problem.) I asked her about it, and she said even in patients w/o bc who suffer from vaginal atrophy, there is a "transition stage" (which I am in now - she said this is the worst of it) when things don't stretch very much, but, once through that stage, the body would normalize again. She said she sees this in her patients in their '70's and '80's. (I am 54). I asked her how long this "transition" phase lasted, and she said it could be "quite a while, up to 10 years" Yikes! I am not really satisfied to wait all that time; who knows if my partner will still be able to perform then?

As to the amount of the cream used, it is a dab about the size of the tip of your pinky fingernail. I started with using it every three days for 6 months, then went to once a week for 4 months, and now use it around every 10 days.

IMO, Vaginal Atrophy has been a major health problem for women post and peri-menopause, whether natural or artificially induced, that has not been recognized or publicly discussed. As with a lot of other things, now that the "Boomer" generation has encountered the problem, we want answers, and won't settle for suffering in silence. With a huge market share waiting to be tapped, I would think the drug companies would be working on a non-hormonal response to the problem that is superior to the lubricants currently on the market.

Hopeful

hutchibk · 05-08-2008, 10:16 AM

Thank Debbie and Hopeful - this is the kind of discussion I was hoping for... these are the exact issues that have had me confused. I have been on Estrace, but have been lazy about using it for the last 6 months or so. But, it's time to try and get back to business (if you know what I mean) - so I am again looking for hopefully the most current info about the topical/local estradiol choices...

I did attend a very informative talk at the Day of Caring in Denver with a Nurse who specialized in sexual issues of the b/c patient, and she suggested this type of dilator set to ease back into the stretching that often becomes necessary, as Hopeful has talked about.
http://www.vaginismus.com/products/dilator_set/
I am looking into the dilator fix as well as water-based and hopefully non-petroleum based lubricants.

Hopeful · 05-08-2008, 11:38 AM

Brenda,

I have been working with the dialators from this site for 4 months. My gyn was amazed that I had worked my way up to being able to insert the third of the four about half way. I know that I suffer from vasigimus as well as VA, and it wasn't until I got to this third size that I could actually feel the pelvic floor muscles relax with regular use. I have been very satisfied with the product. The only issue I have is that I really needed the first book to learn how to work with them properly, but they package it with a "diary" that is of no use to me and just extra money.

Hopeful

AlaskaAngel · 05-09-2008, 02:16 PM

I had been using the Estring but stopped in order to clear any estrogen out to make things simpler in order to get the Yale test for early detection of ovarian cancer.

I have to go back to doing something to help.

I don't know of any definite info about the question of using low-dose estrogen vs low-dose testosterone in terms of the effect, but am considering it since there is no evidence against it.

It is a lot more than just a question of lubrication or dilators for me. If we get our sense of differentiation of gender in childhood and puberty from our increasing hormonal levels, logically we lose a lot of our sense of gender when those levels drop -- especially when the levels drop so severely and suddenly.

For me there is no sense of being either male or female, yet I am in a very caring and committed long-term relationship (married 35+ years, with a very passionate shared history). I am interested not only in being able to perform the physical feat of intercourse without pain, but in getting back some sense of gender so that the act isn't a complete sacrifice of the self each time.

AlaskaAngel

R.B. · 05-09-2008, 03:30 PM

I posted this some years ago, but do so again as it is very powerful. There is a good article I will try and refind making the point that QOL factors have a place in treatment decisions is marginal cases, whatever the eventual decisions are.

Bone Dry
December 9 2000
Angela M. Sissons, PhD
In Memorium
August 5, 2005

http://www.cancerlynx.com/bonedry.html

BONE DRY

I'm not satisfied with the explanation.
I didn't come this far in life,
my once-fantastic sex life, to
have it stop bam!
just like that.

Why does menopause have to be
such a foolish time? Hot flashes like
angry hornets buzz inside my
head; emotional seesaws between
full moons this time, he doesn't
love me, yes he does. Oh how
can he love me when we can't make love!

It's not even a menopause I've earned.
Hormonal treatment they call it, for
systemic cancer. But its side effect
is a plunge into wasteland. What do I
do with a closet full of tampons from a
fruitful, juicy past? Tho' the cancer hit
the breast, then the lung (all north of the
equator), it's the southern state that
strangles me. Can't we make love
without pain?

I'm dry as a bone, painful and sore.
My tissues are thin, the elastic has snapped.
My doc says Oh sure, no problem use
this, and this, and this, before sex.
I did, and I did, and I did, and ouch---
what's wrong with me. Am I using it
right? Astroglide, Replenish, Lubrin and more.
Why does it hurt?

Because I'm bonedry, bone dry, dry bones.

AlaskaAngel · 05-14-2008, 11:18 AM

RB,

Thanks so much for posting that, and especially for understanding so well.

AlaskaAngel

hutchibk · 05-14-2008, 02:11 PM

Hmmmm, personally I don't find it a powerful poem, it's not really my cup of tea, not my mindset, not my personal way of looking at it or feeling about it, sounds a bit more angsty than I feel, but I know others will probably relate. Each of us has a personal perspective, I suppose.

R.B. · 05-15-2008, 02:04 AM

Effects likely vary with treatment regimes, general health, body status, age, fat reserves, genes, hormonal profile etc.

Wider emotional relationship issues and related factors are diverse as are humans.

Not withstanding all of the other cancer related issues Angela was likely facing, Angela felt sufficiently motivated and driven by her experiences and priorities to put them in these unambiguous terms and publish them on a BC site.

It is a difficult subject.

It is positive that women feel able to put their range of experiences to help others and inform the treatment debate.

AlaskaAngel · 05-15-2008, 10:39 AM

Brenda,

The original question you raised was about the physical results of therapy, and this turned out to be a very helpful thread for that. I don't want to distract from that discussion, but I have a question related to it that I haven't seen answered anywhere. So if you think my question should go on a different thread I would be glad to do that.

The question I've been wondering about is this:

Are the HR+ people who have more loss of gender and menopausal effects "more" menopausal, and thus more "protected" from recurrence? I ask this because with the recent info presented that indicated extending the use of letrozole after 5 years of tamoxifen was better, it would seem logical. In that regard, DebbieL mentioned that after stopping the AI there was a carryover effect and the adverse dryness, etc. continued. I'm wondering whether the extra 5 years provides the greatest protection to those who are least menopausal (and maybe provides very little benefit to those who are more so, while adding more physical issues to deal with). In addition, from what I understand, those who are HR+ continue to be at significant risk for decades, whereas the risk for HR-'s drops over time.

From the discussion about the physical aspects, it sounds like we are all over the map in terms of what effects each of us has and to what degree.

I have wondered if the younger patients are, the less "menopausal" they are after treatment, and do not have the same degree of loss of gender.

AlaskaAngel

Cristina19 · 05-15-2008, 11:55 AM

Greetings Ladies,

I'm new to this problem after 6 rounds of chemo and, now, Tamoxifen; but, frankly, I'm surprised at how quickly dryness and atrophy set in. I've got to find a solution because, at 38--dammit--I'm not going to not have sex!

I came across these sites below, though I can't endorse them because I am also at the beginning of this research and I'm still looking for answers:

http://www.womentowomen.com/menopaus...aldryness.aspx

and

http://www.womentowomen.com/menopaus...aldryness.aspx

I also have some comments/questions:

1. I like that they suggest a lubricant in the sites above that doesn't have petrochemicals; though the Astroglide that they mention contains propylene glycol.

2. I agree that this is probably a problem that goes beyond "lubrication." Before cancer, my gynecologist had suggested olive oil as a great lubricant that is "the right pH." My new gynecologist at the cancer center encouraged me to use it or lose it (MY words, NOT his!) in order to keep the atrophy from worsening. But, it's a little hard to use it when it hurts!!!

3. Why did one of you mention in a post above that Tamoxifen was implicated in promoting Her2 positivity??? Yikes. I'm supposed to be on Tamoxifen for 5 years. What should I be worried about?

4. Can phytoestrogens improve the vaginal dryness issue? How about if something containing large quantities of phytoestrogens is applied topically? I know it may sound crazy, but would soy yogurt help??? (cf. yogurt sometimes applied to resolve yeast problems).

Thanks for all your ideas!

AlaskaAngel · 05-15-2008, 12:10 PM

You can google "tamoxifen" and "AIB1" and see what you think. Some HER2's here have chosen to be on tamoxifen, but I am not entirely sure what the documentation is for that.

AlaskaAngel

dlaxague · 05-15-2008, 12:44 PM

Hi AA,

I'm not Brenda but your questions interest me. I don't think the answers are known about hormonal treatment and response, if I understand your question correctly. Are you saying that benefit from hormonal therapy might be stronger not just related to degree of estrogen receptor positivity of the tumor cells but also r/t baseline levels of endogenous estrogen according to menopausal status? As much as they've looked at benefit of Tamoxifen in all age groups, it would seem that they would have noticed if there were a significant variation. At least between the two extremes of definitely post or pre menopausal. I don't think they saw that. Tamoxifen's benefit is not usually stratified according to menopausal status, is it?

Regarding whether those who have more menopausal symptoms rather than less, regarding Tamoxifen, they do think (now) that this may be making a difference, because they are thinking that those who have few symptoms are likely to be the ones who have less of the enzyme required to metabolize Tamoxifen. If you google Tamoxifen cypd6, you'll find enough to get you started looking at that issue. My issue with this line of thought is that they are not explaining how this relates to the fact that many woman pass thru natural menopause without symptoms while other suffer extreme symptoms - and there is no Tamoxifen metabolism in the picture - so there must be other differences to be taken into account. I don't think the same enzymes/issues are involved in AI metabolism but there could be similar issues - who knows?

And lastly, I admit to not fully understanding what you mean by "loss of gender". I do feel that I had/have a fair number of side effects from my two years of Arimidex but if by "loss of gender" you mean not feeling feminine - that has not been a problem for me. I thought that if anything, my flat chest would lessen my sense of feminity but again, I still feel the same in that regard. In fact if anything (reading and writing about this thread is taking me deeper into it), I think I would say that lacking several of the qualities that would be considered most feminine (breasts and a smoothly-functioning vagina) has strengthened my sense of myself as feminine. Who I am, gender-wise, doesn't come from my parts - it comes from some place of mystery and I'm content to leave that to mystery.

Serendipitously, I'm listening to an interesting book on CD. This is a little graphic so stop now if you'd rather not hear about gender issues. I cannot remember why I put this book on my rental list but I don't think I realized what it was about. When I first began listening I was shocked at the graphic descriptions and language but there's a core of deep heartfelt emotions and love plus some great humor and insight, and I'm still listening, now more than halfway thru. It's a novel written in the first person and the person is a gay man. The author, I assume, is also gay - he talks with the voice of experience it seems to me.

Nevermind - I started to type more details and decided it might be offensive to some. Bottom line made in this entertaining and sweet novel is that how we relate to each other and how we enjoy our sexual selves is almost entirely in our minds (and I would add, in our hearts). It's not in our "equipment". Our equipment simply provides the tools for us to use. But that kernel of "us-ness" that tells us our gender - that it a mystery. Where does it come from? It's not hormones, at least not as we know them. For example, women given testosterone do not begin to see themselves as men (yes, they may have some symptoms that are manlike, but that's not the same as one's perception of one's gender). Many people who identify themselves as transgender will say that they knew from an early age (before traditional male/female hormones were even active) that they were not right in their bodies.

No answers from me. Just more questions and ramblings. There's a lot that we do not understand, and maybe that's an okay thing. Except of course as it relates to treatment of breast cancer and there we want to understand everything, eventually (or better yet, tomorrow).

Debbie Laxague

AlaskaAngel · 05-15-2008, 01:25 PM

Hi Debbie,

I hope Brenda will still respond because I don't want to derail any responses that mostly address her original question.

The loss of gender is confusing to me because like most I was only given the understanding that I would "go through menopause". Based on what I see in discussions about garden variety menopause, THIS is quite a ways beyond "menopause"...!

If you are delicately trying to express that perhaps someone who has gender issues to begin with would be affected this way, I'm open-minded and puzzled enough at this point to appreciate and consider the question; but I can only say that as far as I can tell I had a normal passionate female orientation prior to treatment -- with no history of any bisexuality or homosexuality, and a solid male-female relationship with my spouse.

For me the change included a major loss of sense of taste and smell. Some of that happens to some of us during chemo, but mine has been permanent. I don't see how that would be related to any prior gender issues, and I don't know how that would be a mental state because it was entirely unexpected too.

For example, neither the affected and radiated breast nor the unaffected breast have any sensation of pleasure from contact of any kind. I can feel the touch, but it has no pleasurable meaning. As I've mentioned before, visual stimulation such as watching what I would have considered an erotic movie now is like watching apes bouncing around, and there is absolutely nothing sensual about it whether it is male-female or female-female. The usual advice is to "try other ways" like sexual toys, etc. They are just objects and have no effect. It is as if that whole part of my brain is just plain gone. I told my PCP it feels like I've had a lobotomy of that part of myself.

Basically I am wondering if it is related as much to the lack of testosterone as it might be to the lack of estrogen.

AlaskaAngel

AlaskaAngel · 05-15-2008, 02:14 PM

P.S. We all agree that avoiding recurrence is worth a lot of hassle, but I'm wondering how well they are monitoring the changes in sexuality with prolonged use of the AI's, and at what point is enough AI more than enough? Which is why I raised the question, is being more strongly menopausal actually safer, or not?

hutchibk · 05-15-2008, 02:15 PM

Alaska - I am glad Debbie jumped in to try and answer, because I don't have a clue.

I only did one year of Tamox before being switched to Arimadex and then Aromasin... then after a net 2 years on all the aformentioned, I was taken off all AIs. (My initial DX was ER+, but my first recurrence in which we were able to do path on small resection of tumor showed it was ER-, so we assumed at that point that I was not benefiting from AI treatment).

I hope others with more info can weigh in, as I simply don't have a clue.

However, I am interested in being prudent about how I treat my menopause side effects as I want to add the least bit of estrogen back into my body systemically as possible, having already been both ER+ and ER-, I just don't want to take any chances.

dlaxague · 05-15-2008, 02:24 PM

Hi AA, perhaps we should change the subject and take this to a separate thread, so as not, as you say, to tread on Brenda's thread. But I think now we're getting back to Brenda's thread.

When you said loss of gender, I didn't understand your use of the term. And I guess that reading the book that I'm reading, I was primed to assume that you meant loss of sense of male-ness or female-ness. Which it doesn't sound like was what you meant. And which is really a completely separate issue.

And no, I had no subtle message to convey about gender identities. I was just rambling.

So back to what you're describing, which I would call more libido-related. Although libido is more generally specific to sex drive, I think that in the broader sense it encompasses the ability to enjoy sensual experience. Let me check with Webster. Nope - it defines it in terms of urges or drives, which isn't really what you're talking about. If I'm understanding you this time, you're talking more about being able to experience sensual pleasure, rather than the drive to want to do so? I do not know the word for that.

But I do know the experience that you're describing. I share the experience, although maybe in a milder form than you describe. I do still derive pleasure from touch, for example, but it takes much longer for touch to stop being, as you say, just touch. It requires some mental effort to make the shift that I'm not always able (or willing?) to extend. I nodded my head as I read your words - "uh-huh, been there, am there still, much of the time".

And how interesting that you mention the taste/smell. I think that at a level mostly below (above?) our awareness, smell is an important part of sensual and sexual experience. People lose sense of smell for reasons other than cancer treatment - I wonder if they have noticed similar issues?

'Running late for kayak class - talk to you tomorrow.
Love,
Debbie Laxague