Sex Drive and Testosterone

[Vic]

I was wondering if a few of you could chime in on this subject...Alaska Angel and I have discussed it before.

I saw a new gynecologist and discussed improving my sex drive after having a testosterone blood test shortly after my chemo ended. It was really low and the free testosterone and DHEA were okay, but low.

My gynecologist wrote a prescription for a compounding pharmacy for Testosterone PLO 4mg/ml to apply .5ml to inner wrist daily for 2 weeks and increase as directed.

An article in the "Los Angeles Times" in the Health Section on 12.31.7 under "People's Pharmacy" started this idea on mine when, in the article, the woman, a 64-year-old with a very low libido said a friend uses compounded testosterone cream before sex, applying it to the inner thighs, with great results. The "answer" was that small studies suggest testosterone therapy may boost libido in women and added that the FDA has not approved testosterone for improving women's sex drive. However, the bottom line, was that "a physician specializing in sexual medicine may be able to assist."

My gynecologist says she's been prescribing this with no problems and said "either it works or it doesn't." She added that this drug is not for dryness or lubrication issues and suggested K-Y Liquibeads, which is not something I presented with or asked about, but I thought I would share this here, too, since it may also apply to the topic.

Now, that I've got the prescription, I'm afraid to do anything with it. Duh. Before, I do fill it, I wanted to check in with you to see if there are any health concerns related to testosterone and breast cancer or cancer in general? The doctor did say this is a low dose and there wouldn't be a concern of facial-hair growth, acne, etc. I don't like to take drugs of any kind, but it is intriguing.

Thanks for your thoughts.

Vicki

[dlaxague]

Hi Vicki, I've looked into this but it's been awhile. There was not much good evidence about the safety of using testosterone after a breast cancer diagnosis. Nor was there good evidence that it's dangerous.

There is speculation that it could be a bad idea because testosterone is converted to estrogen (estradiol) by aromatase. So it's possible that taking testosterone is the same as taking estrogen. Or not. And if you're already on an AI - who knows? Maybe that prevents the conversion from testosterone to estradiol, making it safe. Or not. No one knew, when I researched the topic a few years ago. You might try googling it again and see what you get.

In general, I would say that garden variety gynecologists generally are not current on nuances of post breast cancer issues and the safety of hormonal solutions. You might want to talk to your oncologist, or maybe a gynecologic oncologist (oncologic gynecologist?). Would you let us know what you find out?

Debbie Laxague

[Vic]

Hi Debbie,

That's a great idea and I will email my oncologist and ask her about these excellent points you raise on the conversion theory. She is usually very good about getting back to me and maybe she can also ask one of the oncologic gynecologists who are connected with the hospital, since I don't see any of them.

It's interesting that you mention "safety," as right after I'd posted this, I wished I had used "safety" in the title, too, because that fine balance of quality of life along with safety makes our choices in healthful living much more complicated after having breast cancer and is somewhat of a balancing act.

As you mention, the nuances following breast cancer are crucial in follow-up, and I agree, many gynecologists tend to focus on the general care of patients who haven't experienced breast cancer. What may seem safe to them demands much more critical thinking on our part. Plus, many are obstetricians and their research and practice is geared in a completely different direction.

Thanks for your excellent and thoughtful response.

Vicki

[AlaskaAngel]

Although we are considering testosterone to try to see whether it helps with libido, there are quite a number of other reasons it might be helpful.

For one, it contributes to muscle mass rather than fat accumulation. Fat accumulation and distribution after menopause is a problem, and not just for the egotistical reasons related to sexuality. Maintaining normal BMI seems to be important for preventing recurrence.

Testosterone also helps to build bones rather than causing loss of bone density.

Low testosterone levels also have proven to contribute to depression.

As DebbieL says, it is possible that testosterone is prevented from being broken down into estrogen by simultaneously taking an AI.

I believe some research on all of this is being done. Perhaps preventing the testosterone from breakdown into estrogen by use of an AI may even reduce some of the positive effects of taking the testosterone. The low-dose testosterone trial I participated in was limited to 1 month's duration and did not attempt to determine bone density or BMI, etc. or cancer recurrence.

A.A.

[Vic]

Hi AA,

You raise some really good points about muscle mass and bone density, of which I wasn't familiar, in relation to testosterone use. I didn't realize these benefits were connected, but it makes perfect sense. Did you stop using the testosterone once the trial was completed, or do you continue to use it?

Since I am 5'3", 110#, fair and have had no children, I have many of the lifestyle characteristics associated with those who get osteoporosis, so bone health is important. That's why I walk and use the treadmill at the health club. Use it or lose it as they say.

I am ER- and don't take an AI, so I wonder if the breakdown into estrogen is a factor for those of us. AA, if you are no longer on testosterone, why did you choose to discontinue it?

Thanks for your insights. It's always nice hearing from you.

Vicki

[AlaskaAngel]

I've been looking at our shared histories to see if there are commonalities, as reasons why we have a strong interest in this question.

Vicki and I both had CAF. I'm not sure what you had DebbieL, although you were treated long enough ago that you might have had CEF? I am more curious about this now that there is better information about the adverse effects long-term with 5-FU.

Another commonality is being recurrence-free for at least 5 years. Is the passing of time making it more tiresome to deal with, maybe because we originally had more hope that we could find alternatives? Or is it actually getting worse with aging? Or both? Is that why others with more recent diagnosis are not yet as concerned about it?

Vicki, after the trial was completed I was hoping to learn from the results of the trial when they were published, but that took years. I was using the Estring to solve the vaginal dryness, which increased the risk. If I could have taken testosterone with the knowledge that my experience would continue to be taken into account in behalf of us all I would have continued taking it. I wanted it to "count" if I was going to be taking it at some unknown level of risk.

My PCP doesn't pretend to know any more about this question or even as much as we do, so is not overly enthusiastic about it. What medical doctors cannot document by seeing physical evidence is generally dismissed. I have discussed it again with my PCP, who is supposed to get back to me about taking testosterone while adding an AI. I have stopped using the Estring.

While I understand the hesitation by medical providers, in comparison to the decades of use of the unknowns of toxic drugs like 5-FU and the minimal success with them I think using the excuse of failing to adequately objectively test substances like testosterone is pretty weird logic!

I don't think oncs are any better source of info about GYN issues than GYNs are about breast cancer issues, and they both seem to like it that way.

AlaskaAngel

[dlaxague]

Hi AA, I always enjoy your discussions.

As for commonality - I think that you hit it with the time from treatment part. It's not so much that's it's getting worse (although I am using estring AND occasional dabs of estrace cream) as that at this point, I see a long(er) future as a real possibility and that changes my priorities a little.

In early the years after treatment, I was grateful just to be breathing and didn't dwell much on the changes. That is still true but to a lesser degree and some of the things like the desert-in-the-vagina-issue, the tendon/muscle issues, and the short term memory thing are seeming like larger problems than I'd previously seen them as. Not that they're worse than they were but that their presence bothers me more.

Definitely a good news/bad news kind of thing.

Regarding 5FU - if I recall the study correctly (and perhaps I don't), it was not necessarily that that particular chemo was any worse than many others - that just happened to be the one they looked at in the most recently-reported study. (I had A/C and Taxol)

This leads to an interesting question. For those of us who are, say, 5 years out from primary diagnosis, and who experience some aftereffects of treatment - do you regret anything about your treatment? I do not know what particular part of my treatment allows me to be here and so I'm grateful for all of it. Well, maybe not the arimidex. But we did the best we could at the time, made the best choices that we could. At that time, in those circumstances, knowing what we knew (or didn't know) then.

Debbie Laxague

[AlaskaAngel]

Me too, DebbieL. We learn a lot from each other.

It isn't very common I think, but I've never been as worried about cancer as I have been about treatment.

Your question about regrets is a good one. As someone who has worked in the medical field and as a patient I value informed consent (honesty). I do very much regret the treatment I agreed to do, because I know beyond any doubt that I was not provided with informed consent at time of treatment. I certainly expected better from those treating me. I also believe I would have made a different choice for treatment if I had -- and that should have been MY right.

The 5-FU issue involves changes in brain tissue. I am wondering if the effect on that tissue is part of what is affecting the libido.

I don't accept the status quo on the QOL issue for that same reason. There is only vague mumbling about the possible/likely effects of chemical castration (and, pardon me for anyone who is sensitive to that term, but I'd rather not have the term doctored up to deceive anyone by making it sound less offensive than the effect actually is). "You probably will go through menopause" is not an adequate description of the loss of libido, which affects far more than just sexuality. But that is the most common extent of discussion about it prior to treatment.

"Don't look back " in moving forward doesn't fit, if we want anything better for ourselves or others. Do we really want to accept the status quo and not push for the basic research to at least answer the questions such as testosterone? Especially considering its helpful properties compared to the synthetic treatments we are currently recommended to use?

I am certain other countries than the US are willing to take these genuine concerns more seriously, and are not as willing to leave this question unanswered, and are investigating it further in the hope of providing better answers. I'm quite willing to participate further if a legitimate opportunity arises.

As ever,

AlaskaAngel

[Sherryg683]

One of my friends did the testostrone cream for awhile and it did help her, but after awhile she did develope facial hair and got off it. Don't know how low her dose was...sherryg683