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Old 05-15-2008, 12:44 PM   #1
dlaxague
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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
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Old 05-15-2008, 01:25 PM   #2
AlaskaAngel
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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
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Old 05-15-2008, 02:14 PM   #3
AlaskaAngel
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P.s.

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?
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Old 05-15-2008, 02:24 PM   #4
dlaxague
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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
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