Total Hormone Replacement?

[Merridith]

I feel that the ablation of my ovaries due to chemo seems to have caused premature aging of my body. I am adjuvant with no nodes, and ER-. I was premenopausal before the treatment and was thrown post-meno.

I now have very dry "aged" wrinkly looking skin. No no longer grow hair in my arm pits or legs, (Great not having to shave!) but wonder what has happened to ALL my hormones, not just the obvious estrogen and progesterone. I assume that there were other hormone quanitity/quality changes as well, but have seen no research on this topic. Additionally I can no longer engage in sex, have chemo brain and have stiffness in my leg/ankle joints. (This last 2 symptoms seems to be slowly fading as I am nearly a year out from chemo)

I went to a specialist regarding lack of sex hormones and she is going to have my blood analysed and I assume prescribe the usual... topical ointments and perhaps testosterone. But from what I understand, you only get a shadow of what you had back, so the concept isn't that "thrilling" me.

So now I am seriously considering the idea of requesting total hormone replacement as though I weren't cancerous. As far as I can tell, all hormone suppression/replacement therapy is based on research for ER+ patients, and nothing on the topic for ER-. Essentially, I might be forced to follow a protocol that would do nothing to effect the survival stats of the ER- subgroup. I am also concerned about the lack of ER on my bones, as I am extra-ordinarily fine boned anyways and can't afford early demineralization.

I am also wondering about the premature-aging effect on my body that I appear to be observing. Haven't seen anything on that topic either.

Has anyone got any info that they would like to share with me on these two topics? Has anyone actually pursued the route that I am contemplating? I have no idea how the doctor will even react to this suggestion.

Looking foreward to your comments,
Merridith

[Janet/FL]

Hello
My replies seem to be showing under the wrong subect. Oh well. to repeat what I posted and showed up elsewhere.

Hi Meridith
Since I am new to all of this, I am may not have much to add. I will say that following endometrial cancer 2 years ago, I went on estrogen replacement therapy, (it had been condsidered OK to do so) I am now 60 years old, and it was in January of 2004 that I went on a high dose of estrogen. My body seemed to just slurp it up. Then I went on a gel of testastorne applied to the arm. I will tell you that although it could have been a placebo affect, it was wonderful! I felt like a teenager again. I felt totally sexy! I had to cut down that amount as it was an overdose :-(

Then along came breast cancer and I gave all of that up. Since I am at the beginnig of that journey, I can't comment further except that I am in your shoes of being ER, PR negative and am interested in learning more about hormones and breast cancer for this type of turmor.

Janet/FL

[Patty H]

I understand how you feel. I once told my Dr. that I have made it through all this chemo, but I thought maybe the menopause was going to kill me. I haven't had the nerve to try hormones but I sure miss them. When I finished my chemo the first time, 4 months later I came out of menopause. I was dancing and prancing. My friends couldn't believe I was so excited to have periods again. I didn't come out of it the next time around. I read that if you were to climb a mountain you would ajust to the thin air as you climbed. But if they just dropped you off at the top of the mountain you would have a hard time breathing because you hadn't climbed and adjusted to the air. The same thing applies to being thrown into menopause. We didn't get to climb the mountain, we were just dropped into it
and is really hard on us. I have been in chemo induced menopause now for 3 years and I still have unbearble hotflashes. I don't know if a Dr. would even give you hormones. I always wondered who I would even ask. I have found my any Drs. or even dentist that I talk to, doesn't want to give me anything without my oncolighist permission. Let us know what kind of response you get from what Dr.? Patty H

[Lolly]

I am also ER/PR-, and had already gone through early menopause by the time I was diagnosed in '99, at age 46. So chemo didn't cause me any additional menopausal symptoms, but I was just starting to discuss testosterone ointments, etc with my PCP when I had my second recurrence, so all was put on hold until after chemo. Now I'm trying to enter the vaccine trial in Seattle, so again will probably wait until I finish the 6 month program before trying anything new. I miss my libido and want it back! Keep us posted on what you learn, and I'll do the same.

Love, Lolly

[Merridith]

Thanks for your replies. I will keep you posted. I will be going for hormone tests in early January and then have another specialist appointment with a sex therapist (Doctor) who is attached to the oncology center.

I thought that my first step would be to try the ointments, but I am not feeling very optimistic about them. I will be raising my pro-hormone replacement thoughts with her at my next appointment to get her used to the idea that I am prepared to be a risk-taker.

One of the thoughts that I had is that the hormones that are used for replacement are artificial, and therefore probably slightly different from those that your body manufactures.

The other idea that I had is that if my period had returned, I wasn't prepared to take tamoxofin anyways because of the side effects. So adding a bit of estrogen probably wouldn't make much difference.

If anyone else has any prior experience or thoughts on this topic, I would appreciate seeing what you have to say.

Looking forward to further replies,
Merridith

[Lyn]

Hi Merridith, looks like we have all been wanting to discuss this but no one actually new how to put it out there. I went through early menopause at about 44 not long after I started chemo in 1998, brought on by the chemo and then had to have my tubes tied to make sure I didn't get pregnant as I could no longer take contraceptives. My sister is 12 months older than me and still hasn't gone through it. The loss of libido in my case is not only due to the hormone loss but the extensive surgery I had, a radical mastectomy, I still do not like my partner seeing me undressed even with a singlet on, making things worse is he is 12 years younger than me but we have been together 17 years so there is a lot of things contributing to my libido loss. Pain and discomfort is the other thing, after all this time I have only just gone to the Health Food Shop and bought an all natural cream for intimacy as I put it, a bit like young guys buying condoms for the first time and end up with asprin, my sisters complain that their partners are never in the mood, I told them I try and sneak into bed so I don't wake mine up, as thoughtful as he is I still feel like a dried up prune, that together with hair loss 3 times it wears a bit thin looking like a Picaso and my daughter affectionately calls me Aunti Fester from the Adams Family, I used to look like an alien to her when she was younger so with all this going on and continual drug therapy, including numb feet and finger tips, is it any wonder our libido abandoned ship. I am not trying to boast here but before this BC curse I used to turn heads, now it is for other reasons, it is pity. The worst time was when I went to the local police station and while standing there in line the reflection in the 2 way mirror was of an old boyfriend I hadn't seen in almost 20 years, he hadn't changed but me, I was just about bald the size of a beach ball from steroids, in lycra cycle pants and a huge T shirt, my wardrobe at the time, I was relieved when my name wasn't mentioned and I slipped out of their like a cat burglar, so hopefully after I have another attempt of reconstruction next year I may be on the right track but it looks like we need more input into this subject.

Love & Hugs Lyn

[Lyn]

P.S. when I had my regular smear test it came back as suspect so I had to have it re done after using an eostrogen cream then it came back normal it seems my Aromasin tablets are working because there was no sign of eostrogen in my body.

Lyn

[Sheila]

Lyn and Merridith
Looks like many of us are in the same boat. Lyn, I too have a husband who is 9 years younger....I have had reconstruction, but my get up and go has gotten up and gone...I am almost 53...my husband trys to be understanding but I dont think he really knows how devastating this whole ordeal can be and the toll it takes on a woman...after reconstruction, I look somewhat normal again, but my reconstructed side is still painful after a year and a half....then to add misery is all the comments we need to hear about what big boobs or a nice chest this girl has or that girl has...and we wonder where our sex drive has gone? I too try to sneak into bed, but I usually wake him up with all the throwing on and off the covers from those blasted hot flashes....I honestly fluctuate between needing 3 blankets and warm jammies to needing fans on while sleeping in next to nothing.
Hugs
Sheila

[*_KathySC_*]

Estriol cream - ER negative, Postmenopausal

I just wanted to add that I use 1 mg of estriol cream (the weaker estrogen) applied vaginally 2 times a week for the last year. I was dx HER+++, ER/PR negative in 2001 at the age of 47, had a total hysterectomy 7 years prior. The cream has gotten rid of my terrible hot flashes, helps me sleep like a rock for 7 to 8 hours a night and has helped with painful intercourse. Not exactly the fountain of youth but it sure helped with my life. This is a natural estrogen compound that is mixed by Medco or any compounding pharmacy. NOT A PHARMACEUTICAL CHEMICAL! Now that I have been on it a year and have not had a recurrence while using it, I feel that I can share this info with you. There is a lot of information on this subject and I would suggest anyone thinking of using it to do some homework before approaching their drs. Dr John R Lee has written a book.... What Your Dr May Not Tell You About Breast Cancer started me down this path. It works for me. I am not saying everyone should use this but its worth looking into if there is a need especially with intimacy.
Kathy

[Lyn]

Thank you for that info, I have been terrified of eostrogen because my BC feeds off it, this is the very reason why we are one big family here. In one way we are lucky, not because of the circumstances of our friendship but if we can save one another from pain and discomfort we share our knowldege.

Love & Hugs Lyn

[Lyn]

Hi Sheila, I am glad I have someone who understands. don't do what I did when I had a hot flush in the supermarket, I put my head in a stand up freezer and a 2kilo chicken fell out onto my foot, I don't know what was worse, I can laugh about it now. The other problem I have been having is that as supportive my partner is, when we go out we never look like we are together and he can't understand how hurtful it is, now he doesn't understand why I am going on a weeks cruise with my best female friend, I told him if I went with him I might just as well go on my own. Over the last few weeks I am sure I have been going through a nervous breakdown, and with the skin mets still hanging over my head I definately need a break, it is not like I will be looking for romance.

Love & Hugs Lyn

[AlaskaAngel]

DISCUSSION: Libido, 2005:

I am really sorry I haven't followed this discussion here until now.

Those of us who feel the loss of libido are not a minority as some authorities would have us believe. We are the tip of the iceberg. There is a lot more pain over this than there is discussion.

Very, very few of us were treated with any real degree of understanding or respect in terms of providing us with even basic counseling or understanding of what it can be like as a result of treatment for bc.

I feel VERY strongly about all of this. I think we really do "owe" it to those sisters yet to be treated to do much more to push for more counseling and more explanation from health care providers PRIOR to treatment.

It has been suggested to me that if health care providers actually did that, many women would be too scared to go through with treatment. That is a LOUSY answer. Women need to have better knowledge to make better choices for themselves.

I have been posting about this on various sites for some time now. Here is a post from the past year:

10 cents from an over-50 bc survivor... Posted by AlaskaAngel on March 31, 2004:

In the pile of things to consider, even if it is only a small part of the picture, I truly feel I owe you some description of what it actually has been like to enter complete menopause so quickly, because I had NO clue prior to accepting chemo/tamoxifen. For those who have heard me describe it before, I am sorry if this is repetitious.

If someone were to have given me this description prior to choosing menopause I still would have had a hard time actually "knowing" exactly what it can be like... It is like having a lobotomy of the part of my brain that had experienced so much joy and pleasure as part of being a sexual, sensual human being. It also was a betrayal, because neither doctors nor nurses prepared me in any way for it, as though losing that part of me was something neither I nor they could possibly have cared about very much. I work with many of these other medical people and love a fair number of them... but none of them ever had chemo... For me, it was like having a huge, tender part of me amputated without anesthetic.
Losing one's hormones so suddenly also has another effect that I did not see coming. Although it does level out my mood so that I have fewer highs or lows, I feel it has also taken away the intensity of colors, sounds, taste, and touch...

I was strongly premenopausal by test prior to starting chemo, etc.
I do not know if you will have the same experience. I do not think this is how older women generally experience menopause. I think abrupt menopause is truly a much greater shock to the system and the permanence of it is something that continues to be painful in its own way.

........end of prior post......

So, does that sound familiar?

What did I experience when I opened discussion with my doctors about this?

In spite of being very shy with my male oncologist I brought it up. (Why, for God's sake, can't they ASK us?.... My answer: They don't want to deal with it.) He said he would order a lab test to see what my testosterone level was. We had the test done and he never told me the results. The next year at my annual visit I brought it up. He just said he "understood". He mentioned that for dryness I could try using the E-string, but that it wouldn't help with libido. I appreciated the suggestion for what it was; merely a way to improve the mechanical problem of sex so that my partner could be satisfied and perhaps that would be of some help with maintaining a relationship. (Why is it that all medical providers think that suggestions to help lubricate are so helpful to us that they don't have to discuss anything else, as if we are mere robots successfully going through the motions?)

I brought it up with my male internist. He too ordered another testosterone level and never told me the results.

I brought it up with a female doctor who subbed for my internist. She had no comment. She ordered the E-string for me. It helps slightly but only with lubrication.

Since then I have been searching for a better solution. I am ER+, PR+, HER2+++. I am currently in a clinical trial titled:

Low-Dose Testosterone in Improving Libido in Postmenopausal Female Cancer Survivors

Despite the advanced education that my health care providers have, they did not help me to find this clinical trial. In fact, I would guess they would be opposed to it because of the concern that testosterone (as I understand it) breaks down into an estrogen precursor in the body. But like one of the women who posted above, I truly feel that health care providers should provide the information and let ME decide. It is NOT kinder or more professional for them to leave me to stumble around trying to find some answers to a very real and very painful result of the treatment they recommend.

The clinical trial is only 8 weeks in duration. I am halfway through the trial.

Frankly, in my mind breast cancer is an ENDOCRINE DISEASE and toxic chemicals are a very poor solution to what is gradually becoming an EPIDEMIC among women, who are left immunologically impaired, physically impaired, and emotionally impaired.

Please find a way to talk with sisters who are only now being diagnosed, not to change their mind about any choice they desire, but to be sure they have more genuine knowledge about the choices they make as they travel this road.

AlaskaAngel

[Lyn]

You hit the nail right on the head, 'SATISFYING FOR OUR PARTNERS" what about us, it is like we are being held to ransom just to hang on to them. Not all partners are like this but I think it is not isolated, just embarrasing to talk about, but lets face it, we can't see one another blush over the net, I know I find it very painful even with a lubricant, so how are we supposed to feel pleasure over pain? Then the risk of using a eostrogen cream, the mental turmoil of are we stirring up more cancer cels so we can look forward to more treatment. My partner always says I never initiate being intimite, go figure, like I want to hit my own thumb with the hammer, I explain and just get "oh sorry", until next time, and for some time afterwards I end up with an iritated bladder, not unocmmon I believe after having a discussion with one of my close friends who ended up in our elete BC club, a couple of years back. I don't have the answer yet but be assured I have been looking, I am determinded to stay around for a lot longer and don't want to be a dried up old prune.

Love & Hugs Lyn

[Merridith]

Hi everyone:

I really have to agree with the poster who said that the oncologists really don't prepare you for what "menopause" means when it is brought on by chemo.

I thought that I would be (if I even went through it because I was pretty confident that I wouldn't!!!) experiencing some hot flashes. By some I mean maybe 5 or 6 a day. I actually envisioned that they might be somewhat pleasant because I am typically a "cold" person and feeling extra warm for a few times a day might be pretty good because I work in an office where everyone likes the temp down..... NOT!!!!!!!!!!!!!!!!!!

No one mentioned that I wouldn't be able to have ENJOYABLE sex. Probably for the rest of my life!!!!!!!!!!! This is not a minor side effect as far as I am concerned. I certainly hope that the non-challant attitude isn't because as women we are labled as not as sexually inclined?! as men according to the medical establishment. (Although I suspect if men were told that this was "the last time they could do it EVER enjoyably" - there would be a screeching outcry)

Lubricants as far as I am concerned don't do it. Even when I was pre-menopausal I didn't like them. Lubricants are more "sticky" than naturally produced lubricant. And more importantly MORE isn't produced as you need it, instead the stuff gets thinner so that you actually have a time limit before you screech to an unpleasant hault. "Tolerating" the act doesn't do anything for me physically or emotionally.

Bottom line: Libedo loss is a VERY big side effect. We should know about it and make our decisions about losing it. Relationships, love, pleasure are all major parts of our lives. There is nothing minor about being taken by surprise by this side effect. It is CRIMINAL that I, ( and from the looks of it many others) weren't informed about what we were in for. After all, chemo only helps a small percentage of women survive compared to the percentage that are saved by surgery alone.... ( I mean in the adjuvant stage, which statistically the bulk of bc patients initially fall). There are women that might make different choices when faced with the ramifications of the chemo choice. And I beleive in only fully informed choices. Chemo menopause is NOT equal/the same as natural menopause. Don't delude us into thinking it is.

Thanks for letting me rant,
Happy New Year
Merridith

[Lyn]

To Merridith and other ladies, found info on our problem and posted in new topic for all to see, a magic potion or not? We can all debate this one.


Love & hugs Lyn

[Janet/FL]

A few days ago I posted on this subject and now want to add somemore comments. For me loosing estrogen, from menopause and endometerial cancer which was a TAH-BSO operation no chemo or radiation), left me with what some of you described as "chemo brain". Sex drive about nil also. Then I was put on estrogen, an estradoil patch, and low and behold, my brain started working again! My memory and ability to reason sharply came back. I could remember where I parked my car! I could hold my own in an agrument and remember jokes.
Last summer testastorne was added, by gel on the arm, and my sex drive came roaring back! Had to cut down on it as it was too much. Did have side effects of mustache growing and probably thinned my hair also. It was fun while it lasted. Kind of like going on a vacation to a fun place but have to come home eventually. The kick was not nearly as much when I bought the testastrone level down to something like normal for a younger woman.
Since going off the patches--had a ring and a patch of estradoil also to boost the estrogen in my system, and off the testastrone, I am back to having a brain that has a difficult time recalling things. It could be from stress as this is the same reaction I have under stress, but I think it is the estrogen. Sometimes my mind is just blank when trying to recall things. Forget about remembering jokes--can't remember one.
Now the sex drive, well, we will see. I am under too much stress, had surgery 12-07-04, to think about that.
Since I am ER-PR negative, estrogen might be OK for me, but I don't know. Estrogen only may protect against estrogen postive breast cancer as some study showed, but at this point int he back of my mind, not from any study, I would wonder if it just caused the estrogen negative.
Hope we all get more information about this. I had asked my endocrinologist about testastrone several years ago (he said he had no way of prescribing a correct amount)and just last year, 2004, he offered it to me as if the idea was something new to him.
Janet/FL


THIS IS MY ORIGINAL POST
Hi Meridith
Since I am new to all of this, I am may not have much to add. I will say that following endometrial cancer 2 years ago, I went on estrogen replacement therapy, (it had been condsidered OK to do so) I am now 60 years old, and it was in January of 2004 that I went on a high dose of estrogen. My body seemed to just slurp it up. Then I went on a gel of testastorne applied to the arm. I will tell you that although it could have been a placebo affect, it was wonderful! I felt like a teenager again. I felt totally sexy! I had to cut down that amount as it was an overdose :-(

Then along came breast cancer and I gave all of that up. Since I am at the beginnig of that journey, I can't comment further except that I am in your shoes of being ER, PR negative and am interested in learning more about hormones and breast cancer for this type of turmor.

Janet/FL

[Merridith]

Hi Janet/FL:

I have been following your posts. Thanks for the info. I will be bringing your article with me to my appointment. I also suspect that the lack of ER might have something to do with chemo brain.

The great thing about this forum is that if we who are affected, all bring the issue forward with our doctors at once it will be like getting a room full of oncologists to offer their differing experienced opinions & research to us. We will be able to pool our answers and possibly come up with cutting edge solutions that some of our doctors might not be aware of or considered.

Yay! for HER2 teamwork.

Merridith

PS: Did you know that the world's biggest selling genre of fiction novel is.... ROMANCE?

[Lyn]

Hi there, maybe we have been a bit critical on the chemo blaming it for our brain malfunction when it may be hormonal, I know sometimes I can go off like a stick of dynamite over the smallest thing, my family just stand back and think I am weird and scatter.

Love & Hugs Lyn

[Sandy H.]

I have been reading these posts and I will add my 3 cents for what ever its worth. I read some where and it may have been in one of my chemo books from oncology that chemo shrinks the muscus membranes and they loose elasticity. This causes great discomfort when having intercourse! In this article it said that when this happens, and it sounds like it has with many, one needs to take a vibrator or dialator with plenty of lubricant and insert it severals times to stretch the tissues. Need to do this each day until entrance is comfortable. It said by the patient doing it she can control it by starting out slow, and working at it to what she can tolerate. Best lubricant for most it said is K-Y and helps to warm it up. Under no circumstances should one use vaseline. One person told me she tried it and it worked for her. Hey, sounds like worth a try to me for those that are having this problem. I hope I haven't gotten too personal? We are now getting down to the nuts and bolts here!! Have a great New Year!!!! Hugs, Sandy

[AlaskaAngel]

Sandy, I'm moving my reply to the new discussion about this in the other string above... don't want to lose the topic....

A.A.

[Lyn]

Hi Sandy, no you haven't got too personal, we have created a whole new string above so we have plenty of room, the questions are out there but I don't think anyone was game enough to stick their head out before, I think a lot of us thought we had to put up with this as a consequence of chemo and still being alive, and not menopause, so now we have cleared that up we want to LIVE to the fullest, if you get what I mean.

Love & Hugs Lyn