Aromatase Inhibitors for Males
Are there any males on this forum who now take (or have in the past taken) any of the aromatase inhibitors (AIs) to help suppress their estrogen production? Arimidex (anastrozole), Aromasin (exemestane) and Femara (letrozole) are probably the most commonly prescribed for estrogen receptor positive (ER+) breast cancer patients. For these folks the hormone estrogen has been found to promote the growth of the cancer cells, so stopping or at least slowing down the production of estrogen---even in males---is a good thing.
For many years tamoxifen was the drug used for this purpose with male and female breast cancers, until recent trials showed that AIs were more effective in estrogen control---at least for females. But there are now a few researchers in the US who believe that the AIs do not work as well with males unless anti-luetinizing drugs are also used to stop the male testicular production of the hormone testosterone.(Estrogen is produced by the enzyme aromatase conversion of testosterone.) In fact, the January 2009 NCCN Guidelines even recommend against using AIs for males unless the testicular production of testosterone is suppressed.
So, I'd very much like to hear from any males who have had to deal with this issue and learn what their doctors recommended. Unfortunately, for us male breast cancer patients, there is very little information published on this matter.
bird
Comments
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Hi Bird,
A friend of mine, who's screen name is MREanes may be able to answer some of your questions. He hasn't logged in awhile .. but perhaps you could PM him.
If you go to the top of the page, where it says member list, click on that and then type in MREanes. It will bring up his recent posts. You can also send him a PM from there.
Hope this helps. You might also try the Nosurrender breast cancer website. Lots of info there as well. On the Nosurrender website check the forum under Cutting Edge.
Best of everything to you,
Bren
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Bren--
Thanks so much for the suggestions---I will follow up on them and see where they lead me. Being a male, sometimes I get to feeling like I am alone on this breast cancer boat. But then help from other passengers like yourself comes along and bouys my spirits.
---bird
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Hi Bird,
I see that you are triple positive ... is Herceptin being recommended for you, as well as an AI? I'll check over at Nosurrender site for you and see if I can locate my friend .. if not, I'll send him an email and ask him to look here for you.
His initial diagnosis was more advanced than yours, but I know he was taking an AI. I believe his doctors were also recommending some other type of hormone therapy as well.
Stay in touch and let me know how you're doing.
hugs,
Bren
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Bren--
Yes, I am getting Herceptin. In fact I leave for the infusion office in 1 hour for my weekly dose. I've had 20 so far with 32 more to go. Hope I'm one of the lucky ones where it does some good---
AIs are being recommended for me too--- hence my question about the anti-lueintinizing drugs.
Following your recommendation, I've also posted my question over at Nosurrender.
Thanks for your help.
bird
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Morning Rarebird,
I checked nosurrenders site and saw you had posted there. I'm sure Edge will respond quickly. I sent a msg to Gina so she could ensure Edge gets back to you ASAP.
I, too, hope the Herceptin is working for you.
Have a good day .. and I'll keep checking to see how things are going for you.
Hugs,
Bren
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Hi Rarebird,
I checked and saw that you are in good hands at the other site. I'm sure my friend will be along soon over there to help answer your questions.
Happy Holidays,
Bren
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Rarebird,
My medical oncologist has told me that the top people in the field have no idea if the AI's would be effective in men. I saw him most recently last month and the position has not changed. No one has studied whether estrogen is produced in men using the same pathways as used in women to produce estrogen. Therefore, no one knows if AIs would be effective in men. Since there have been no studies, it is very unlikely than any insurance would cover AI's prescribed for men and the AIs are pretty expensive. I had 5 years of Tamoxifen which I recently completed and will have no further hormonal therapy.
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Larry--
Thanks so much for the reply. It looks like as with so many other things with male breast cancer and the lack of basic research on men, the doctors don't really know what to do for us. Except for the surgeon, my doctors have all been less than reassuring with all the qualifiers they attach to their recommendations. My surgeon was able to see with his own eyes what he wanted to remove from my body; the others are at best just expecting that the chemo, Herceptin and radiation they offer will do me some good.
But I can't really fault them for their lack of certainty. There just aren't enough of us men with breast cancer for the researchers to cobble together sufficient participants in clinical trials to explore the various theories of how treatments might work with males. In fact, I read that a clinical trial designed to evaluate how adding groserelin to anastrozole to control the testicular production of androgens in males was abandoned since the accrual of participants was just too small. The theory was that the addition of an anti-androgen agent to an aromatase inhibitor could inhibit the feedback loop of the hypothalamus and pituitary glands and thereby give better suppression of estrogen. The testicles would not be stimulated to produce androgens which then would not be converted to estrogen by the enqyme aromatase. So the question goes unanswered.
But I am happy to see that for you Tamoxifen has apparently been helpful in arresting your disease. I am beginning to lean more towards that drug for my hormonal therapy since I can't get comfortable contemplating the side effects (bone loss and joint/muscle pain) that come with the AIs which might not even work in men at the doses which can be tolerated.
Thanks again,
bird
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Hi - I don't post very often any more but I was struck by these posts.. my father had a dx of Stage II bc at 63 years of age.. there was a mastectomy and dad was followed regularly with ct scans (no MRI's in those days) as well as taking Tamoxifen.. we thought it was a miracle drug and the doc that put him on it said he would probably be on it for the rest of his life.. After 12 years the new rules about Tamoxifen came out and he was pulled off of it.. within a year he was dx'd with a new bout but this new bout had already met. all over his body.. At first we supposed that being removed from the Tamoxifen was what created the recurrence of bc.. but after I checked out some research they (medical science) really believe that being on Tamoxifen too long can set up the cancer to recur.. I am glad to say that there are other drugs to take beyond the 5 year cut off now and so if it was the withdrawal of the Tamoxifen that started the new dx then perhaps many of you will have a better outcome.. but please always be careful medical science doesn't really know how to deal with men who develop bc so you have to be your own best advocate.. One more thing - my father had been off Tamoxifen for approx. 1 year when the mets were found.. and his estrodol (he was estrogen +) was only 10 on his blood tests.. so he did not have too much estrogen in his body.. this brings me to my final warning.. if you should develop what the doc's call a recurrence make sure it is that and not a new cancer - something that might need to be treated with other/different drugs.. Good Luck!
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Deirdre--
Thank you for these comments about your father's case. They are helpful. I am sorry to learn in his case the Tamoxifen may have not cured his disease, but I suppose it may have helped him to fiend it off those 12 years after his diagnosis.
Your mention of your father's estradiol levels being monitored is interesting and seems to me like something that would routinely be done when employing anti-estrogen therapy. But my doctor has said that it is not something 'they' normally do. I don't know if that has something to do with how accurately the small concentrations of the hormone can be measured in the blood, or if it is some other reason. But it seems to me without some sort of feedback, the ER+ patients and their doctors are just shooting in the dark as they try to control estrogen, particularly when it comes to AI therapy.
Thanks again,
bird
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Bird
Absolutely! And you must insist on knowing - if the medical community suggests that your cancer is ER+ then how better to track it than the tests that are available now.. and since Testosterone can convert to estrogen then it stand to reason that your testosterone must also be measured..
With my own dx being DCIS I was blessed to find it early, and I was ER+ PR+ (high) when I did my research I found that the PR+ doesn't have the same ramifications as does the ER+ - PR+ does NOT mean that progesterone grows tumors only that tumors react to progesterone.. It's a very strange coding and there are even some in medicine that believe the PR+ should be excluded from tumor testing altogether. So you have to be the researcher and decide what to insist on yourself!!!
Best of luck and remember when my father was dx'ed he had many years left and that was years ago.. today bc is often looked at as a chronic disease that we must constrantly monitor and managed - it is no longer a life sentence!!!
With your dx I believe the stronger most important indicator is the HER2+ keep that in toe and you will live a long life!!!
Best
Deirdre
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My oncologist was originally going to give me aromatase inhibitors (after surgery, chemo, and radiation). But we took advice from UCSF who said that AIs were not good for men - so I am just about to start 5 years of Tamoxifen.
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Yeah David it's like everything else when it comes to men having breast cancer the choices are all over the map.. but I have seen reports that suggest that AL's have the same benefits to men as women.
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Deidre,
Do you recall where you read the reports on AIs giving the same benefits to men as women? I'd like to read them too.
David,
Did your UCSF oncologist give you any details as to why he feels AIs are not good for men? Right now my doctor is taking the opposite view with me, referring to the results of the ATAC trial which looks like to me was almost entirely made up of female participants. This is why am struggling to understand if those results can be applied to both sexes since the hormonal environment is much different in men and women.
bird
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1rarebird: I believe there are several studies mentioned (both sides) on the National Cancer Institute and I also remember seeing more positive info by searching under
Oncology + Aromatase Inhibitors for MalesAlso, I believe that if you do a search for Aromatase Inhibitors for Males you will find that the AL's are also being used in a similiar fashion with regard to bone strenghtening in males.. So it is not totally a "women's" drug anymore.
You should get a confussed batch this way
- then you can be as confussed as the doc's! Good luck! One more thing - I believe someone (was it you bird?) said that they are being followed by mammograms - that should be changed to mammo's and breast MRI's.. I personally told my doc's I would no longer get mammo's as it was a breast MRI that turned up the DCIS after years of doing self check and mammo's as well as a sonagram and a digital mammo - all were clear except the breast MRI.. The breast MRI's are of course designed for women (but then so are mammo's), but the smallest of breast tissue can be seen with MRI's - many women go 6 months mammo 6 months MRI.. and of course that depends on how much help your insurance company is. If they do challenge your doc's use of MRI's make sure you follow up with a letter of concern to your insurance company with a cc going to your Congressman/women... -
In response to 1rarebird:
To quote from doctor's report: "It is generally believed that EIs do not work in men, and they actually drive up the testosterone levels, without having any beneficial effect as far as breast cancer is concerned. Aromatase inhibitors have not been tested in this setting, but the mode of action would lead to an increase in testosterone and maybe contraindicated in a non-castrate man."
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Deirdre,
Thanks--I will do the searches as you suggest and see what comes up for me.
And, yes, I have already seen a lot of info on male body building sites about aromatase inhibitors being used to lessen the amount of estrogen in those males who want to increase their muscle mass. I suspect that is where the most AI use is in males these days.
I will remember what you recommend about MRIs vs mammograms. I still recall the irony of the situation when my wife and I went in for my mammogram after finding my lump last spring. For years I had sat in the same waiting room as my wife went in for her twice a year mamos following abnomal results one time. (Luckily it was a false positive for her, later confirmed by biopsy.) This time she had to wait on me for over an hour as the radiologist did images of both sides and then a sonogram of the left side too. After seeing the lesion on his computer screen he excitedly came out and talked to me at length about how " unusual" it was for him to see a male in his office, but that I shouldn't worry since it was so "rare" for men to get breast cancer. He wrote "low suspicion" for malignancy on his report. But that was sooo wrong and here I am seven months later after an excisional biopsy/mastectomy/PET/thyroid biopsy/6 chemo drips / 22 Hercpetion drips (so far) / 2 echo cardiograms/ starting radiation/ and now hromonal planning. Whew--makes me tired just thinking about it. So much for the rarity of it---
bird
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Thanks, David-- What your doctor wrote is similar to what I have read from doing my own ameturish research. I wish there was a way I could get your doctor and mine to talk so I can get this issue resolved. The "castrate" part of this scares the H--- out of me!
bird
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Wow Bird you had to wage an all out battle - let's hope it works well for you!! And as for your doc saying it is rare for men to get bc - that's what they know today when we are not approaching men to have them do screening.. I read an article a few years back that suggests that they are finding a great deal of bc in men but it was not found until after their passing - at the autopsy - so obviously it didn't kill them. I am an advocate for bc being approached as colon cancer and everyone should be checked - that's not going to happen until the number of men dx'ed with bc increases (and I certainly hope it won't increase) and I am afraid it will happen! My brother's should be more cautious but they are taking their doc's posture that it is "rare" instead of doing some checking! I think male doc's are a bit uncomfortable with it too IMO..
AL's bumps up the testosterone in women and yet it is used with women without a second thought - and testosterone in women and men converts to estrogen - or I should say it CAN convert.. so the problems would be similiar with both women and men...
Best
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Is not aromatization the only source of estrogen in men?
I know that users of anabolic steroids who develop gynocomastia use tamoxifen to suppress it, or aromatase inhibitors to prevent it. The use of aromatase inhibitors decreases estrogen levels and reduces bloat and gyno. Its amazing that it wouldn't do the same thing in men with BC. I agree that using an AI on a healthy male would elevate testosterone levels, as both testosterone and estrogen are inhibitor of the hypothalamus pituitary testiclar axis.
I am not a Doctor, so in the end, its the expert opinion that counts.
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Timothy--
I am no expert either and without ovaries to produce estrogen, I believe men get their estrogen primarily through the arromatase conversion of androgens produced by their adrenal glands and testes. Now, I also believe I have read that some estrogen also comes from fat deposits as well as the breast tissue itself. (maybe that should be the breast cancer tissue--I don't know--) So it seems to me the question of whether Tamoxifen or aromatase inhibitors work better in males resolves around which one of the therapies best keeps the breast cancer cells that are ER+ from getting the estrogen they need to grow and divide. Wish I knew the answer to that one.
bird
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The aromatase inhibitors reduce the production of estrogen in women. Tamoxifen is a weak estrogen which attaches to the estrogen receptors in the breast cells thus preventing the body's estrogen from attaching to these receptors. The weak estrogen does not promote cancer cell growth as does the body's estrogen in estrogen receptor positive (ER+) cells. As I stated in an earlier post, my oncologist has told me that none of the experts know if the aromatase inhibitors would inhibit the production of estrogen in men. Since so few men get breast cancer, and even fewer are ER+, I doubt that either a drug company or the government will ever fund a study of aramatase inhibitor effects in men.
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I hope you don't mind my asking, but I am just wondering if androgen receptors (AR) are tested for male breast cancer?
I think I read female bc tumors show androgen receptors up to 20% of the time. I would certainly wonder if my tumor had any AR as a male.
Cite: see Cliff Hudis' work/trials on AR's, Memorial Sloan Kettering (MSK).
Good luck you all.
Tender
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My tumor was tested for both Estrogen and Progesterone receptors. My tumor was also tested for HerNu2 genes.
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Tamoxifen seems to work again gynocomatia:
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Since my last post to this thread, I have read a report which references research that shows "the testes produce 15 - 20% of circulating estrogens" in men. It goes on to say that of course substantial amounts of the androgen testosterone are produced there as well and that testosterone can be converted (with aromatase present) to estrogen in the peripheral tissues of the body (outside of the testes). Other sources of male estrogen are stated to include "minute quantities" produced in the adrenal glands which also produce androgens such as dihydroepiandosterone and androstenedione that are converted to estrogens in the adipose (fat) tissue of the body. Other places where estrogen can be produced include mesenchymal cells of the skin, bone, endothelium and brain that use aromatase for the synthesis of estrogen. Most suprising to me was the statement that the cancer cells and/or their surrounding stromal cells contain aromatase enzyemes that can convert hormone precursors to estrogens at the breast cancer cell sites.
So, it seems to me that even if aromatase inhibitors can effectively stop the aromatase conversion process of estrogen in males, that leaves a significant amount of estrogen (the original 15 -20%) still being produced by the testes, and these could be enough to stimulate any strongly estrogen positive breast cancer cells. The only solution to this problem that I have read about is to stop the testicular production of estrogen (and testosterone at the same time) by administering Luetinzing-Hormone (LHRH) Agonist drugs like luprolide, goserelide, or histerlin acetate that work to stop the production of testosterone and estrogen in the testes. Of course, this has the same effect in males as surgical castration, so there are other significant impacts as a consequence of this type dual hormonal therapy for treating male breast cancer. Sometimes choices are really hard to make fighting this disease.
bird
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As you can see from my diagnosis I have advanced metastatic breast cancer. I have taken most of the available cancer drugs. When the cancer recurred (spread to my spine) in the beginning of 2008, my local oncologist took me off tamoxifen and put me on arimidex. However, when I went for a 2nd opinion at Moffitt Cancer Center in Tampa, Fl. my lady oncologist said that arimidex by itself would not work and could cause the cancer to spread. And so in 5/08 I was put on leuprolide (Lupron) to stop testosterone production. This regimen worked for a while (stopped the cancer) but in 10/09 the cancer was once again spreading in the spine. And so, in Jan 2010, I was put on Aromasin along with Lupron. My condition (spreading of the cancer) will be reassessed in April. If the Aromasin doesn't work, I will probably be put on Tykerb and Herceptin or Xeloda.
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retjohn1--
Thank you for posting your experience with Tamoxifen and AIs as you fight your cancer. Although not successful in stopping the spread of disease completely, perhaps the Arimidex and Lupron did slow it up some. I hope that you will find better results by changing to Aromasin, and I believe you have another good anti estrogen receptor option to consider in the drug Faslodex, if necessary.
But since you are HER2+ I believe you have a very good approach to treating the cancer with the targeted therapeutic drugs you mention: Herceptin and Tykerb. You can find very good information about the promise of Herceptin and Tykerb on this site as well at the Her2support.org website ( http://her2support.org ) Also, there are some strong positive opinions and reasons for them regarding Faslodex for fighting metastatic male breast cancer posted at the NoSurrender breast cancer website ( http://www.nosurrenderbreastcancersurvivorforum.org ) . I encourage you to use the search engine features at each of these websites and you should find valuable information to help you as you plan your strategy with your doctors. Please send me a personal message email if you think I might be able to help.
Good luck--
bird
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Well, after a long discussion yesterday with my oncologist regarding AIs and Tamoxifen for treating my early stage ER+ (95%) BC, we decided to go with Tamoxifen as long as I am a high metabolizer as shown by the CYP2D6 enzyme test. My blood was drawn for the test and we expect the results in about a week. I will wait a couple of more weeks before starting the TAM, since my doctor wanted me to be better recovered from the radiation treatments I just finished.
Basically it came down to my doctor counseling that either AIs or TAM could work well for males and there are good arguments for using either one in my case. Given the side effects profile of the AIs plus a GnRH, Tamoxfen was certainly more appealing to me. He did not agree that watchful waiting was a choice that should be pursued with strongly ER+ BC.
I appreciate the feedback everyone has given me on this subject. It has been a hard decsion to make.
bird
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Hi Bird,
Glad to hear you have finished radiation. I hope the Tamoxifen is good to you and you tolerate it well. Stay in touch ...
Thinking of you,
Bren
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