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AlaskaAngel · 06-05-2006, 12:07 PM

I wonder just how far out each of you are from surgery?

I know this post will be long; my apologies.

I am HER2+++, ER+ 50%, PR+ 95%. Like you, Astrid, I have a BIG family history--on both sides for me. I will digress briefly here about that.

A month ago, because of the aunt who had ovarian cancer, I finally caved in and was tested for BRCA 1 and 2, and tested entirely negative. Another aunt died of bc mets to the brain in the early 1960's and perhaps she too was HER2+++. I bring up BRCA testing in the event that you contemplate that as a way of helping you make a decision. After seeing the recent article noting that commercial testing for BRCA 1 and 2 has a significant likelihood of inaccuracy for some who are BRCA 1 and 2, I'm put out that the genetics counselor and the oncologist I saw who specialized in genetics either weren't aware of it or didn't feel I needed to know. To begin with, as I understand it, the number of HER2+++'s who test positive for either BRCA 1 or 2 is much, much smaller than the number for the general population of BC. Secondly, as I understand it, very few BRCA1's are ER+. Frankly, given the recent report about inaccuracy by testing in the USA, I feel that I should not have been encouraged to bother with that test and I am sorry that I and my insurance company are being burdened with paying for it. I don't feel I have any helpful information to go on, nor was I likely to get it from the BRCA testing that I received.

At surgery I was 51 and still quite premenopausal. Because I was stage 1 and my tumor was less than 2 cm but node-negative I wasn't eligible for the Herceptin trial. Oncologists have prevented me from having documented evidence one way or the other whether I should do Herceptin or not. Thank you, ASCO, for that lack of information for those like me.

At diagnosis I learned that European studies were indicating that possibly ovarian suppression or removal (plus rads for local control) plus tamoxifen might be equal to chemotherapy, rads and tamoxifen, and asked my onc about it. Even though I would only benefit from chemo by a tiny percentage, he favored chemo. There was no counseling about the traumatic effects of loss of libido whatsoever. His notion of "discussing the options" with me was to say "you will probably go through menopause". There was no discussion at all with me about the percentage of benefit with chemotherapy. I cannot describe what that loss has meant to me or how violated I feel about his complete failure to provide the genuine opportunity for true patient consent.

If that clinical trial had been offered when I was considering treatment I would jump at it no matter which arm I ended up in. Women need better answers.

At completion of chemo and rads my onc recommended tamoxifen. I specifically said that I had heard that it caused dryness. He laughed at me and said it did not. Again I tried to put trust in his wisdom. Within 2 weeks I was painfully dry and had loss of libido. That has never changed since then. I went to my PCP to discuss it and he had nothing to say. I went to my onc and he recommended the E-string. I use the E-string PLUS lots of lubrication, not for any sexual enjoyment whatsoever because there is none. I use it because it makes sex possible at all, in behalf of my spouse's needs, even if it is still rather painful.

I believe that for those who are younger, the effect of tamoxifen is gentler even for loss of libido, but conversely I would guess that also means their risk remains higher even with tamoxifen. And in trying to advise you, I have to also speculate that even if the transition to menopause is gentler for you, I can't tell whether you would end up losing much libido, or whether that would happen sooner by virtue of doing tamoxifen and/or ovarian removal, etc.

In regard to the Estring... For me there is no alternative. "Petting" and "caring touches" at 55 without entry for my spouse is like a life sentence. I read about the study in England (with a very small group) that indicated that using that kind of estrogen supplementation may very well be counterproductive for those using an AI. My personal experience indicates that could be true. The Estring is changed every 3 months, and if I happen to forget to replace it right away, my eyes are drier, my skin is drier, and I start having hot flashes again. What does that tell you?

I genuinely believe in actively participating in the search for better answers. That is why I chose to be a participant in the clinical trial using testosterone for breast cancer patients, even though being HER2+++ might increase my risk for recurrence. If they do not test using patients who are HER2+++ then there would be no evidence applicable to HER2+++ patients one way or the other. To be in that trial I had to pay my way and fly to a participating site in the Lower 48. It is just too easy for those who offer life-saving therapy not to place any significant value on our libido.

I have also read about the problem for those who are both AIB1 and HER2+++. Please note that neither my PCP nor my onc had the organizational skills and/or openness to bring that up with me for MY consideration. I had to take the question to THEM. (But then, neither of them ever even told me that I was HER2 positive in the first place, so the vacuum of their value in providing information to me is not a new trend for them.) By that time I had been on tamoxifen for 1 3/4 years. They did not even acknowledge the question. They merely responded that since by this time I was menopausal, it was "okay" if I wanted to switch to Arimidex. I had read that perhaps Femara was more effective, but the recommendation was Arimidex.

So currently I am recommended to take Arimidex--which likely isn't working because of the Estring--and causes additional loss of bone density on top of all that is lost through chemotherapy.

You would think that there would be at least enough professionalism that researchers would pause at least briefly in their stampede for greater knowledge to try to actually find a way to apply it, and that when they test for HER2 they would find a way to test for AIB1 instead of hiding it from us and leaving all of us to try to figure out how to deal with it.

I happen to believe that my PCP literally is doing the very best he can. My onc is extremely well-liked and respected by and large by both patients and professionals. On the other hand, I don't and won't accept that patients like me are particularly unable or "difficult" to be a partner in our treatment, either.

I don't know if my thoughts and experience are helpful to you, but there they are.

With sincere sympathy,

AlaskaAngel

06-05-2006, 12:07 PM	#4
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	To the oncs and researchers at large.... I wonder just how far out each of you are from surgery? I know this post will be long; my apologies. I am HER2+++, ER+ 50%, PR+ 95%. Like you, Astrid, I have a BIG family history--on both sides for me. I will digress briefly here about that. A month ago, because of the aunt who had ovarian cancer, I finally caved in and was tested for BRCA 1 and 2, and tested entirely negative. Another aunt died of bc mets to the brain in the early 1960's and perhaps she too was HER2+++. I bring up BRCA testing in the event that you contemplate that as a way of helping you make a decision. After seeing the recent article noting that commercial testing for BRCA 1 and 2 has a significant likelihood of inaccuracy for some who are BRCA 1 and 2, I'm put out that the genetics counselor and the oncologist I saw who specialized in genetics either weren't aware of it or didn't feel I needed to know. To begin with, as I understand it, the number of HER2+++'s who test positive for either BRCA 1 or 2 is much, much smaller than the number for the general population of BC. Secondly, as I understand it, very few BRCA1's are ER+. Frankly, given the recent report about inaccuracy by testing in the USA, I feel that I should not have been encouraged to bother with that test and I am sorry that I and my insurance company are being burdened with paying for it. I don't feel I have any helpful information to go on, nor was I likely to get it from the BRCA testing that I received. At surgery I was 51 and still quite premenopausal. Because I was stage 1 and my tumor was less than 2 cm but node-negative I wasn't eligible for the Herceptin trial. Oncologists have prevented me from having documented evidence one way or the other whether I should do Herceptin or not. Thank you, ASCO, for that lack of information for those like me. At diagnosis I learned that European studies were indicating that possibly ovarian suppression or removal (plus rads for local control) plus tamoxifen might be equal to chemotherapy, rads and tamoxifen, and asked my onc about it. Even though I would only benefit from chemo by a tiny percentage, he favored chemo. There was no counseling about the traumatic effects of loss of libido whatsoever. His notion of "discussing the options" with me was to say "you will probably go through menopause". There was no discussion at all with me about the percentage of benefit with chemotherapy. I cannot describe what that loss has meant to me or how violated I feel about his complete failure to provide the genuine opportunity for true patient consent. If that clinical trial had been offered when I was considering treatment I would jump at it no matter which arm I ended up in. Women need better answers. At completion of chemo and rads my onc recommended tamoxifen. I specifically said that I had heard that it caused dryness. He laughed at me and said it did not. Again I tried to put trust in his wisdom. Within 2 weeks I was painfully dry and had loss of libido. That has never changed since then. I went to my PCP to discuss it and he had nothing to say. I went to my onc and he recommended the E-string. I use the E-string PLUS lots of lubrication, not for any sexual enjoyment whatsoever because there is none. I use it because it makes sex possible at all, in behalf of my spouse's needs, even if it is still rather painful. I believe that for those who are younger, the effect of tamoxifen is gentler even for loss of libido, but conversely I would guess that also means their risk remains higher even with tamoxifen. And in trying to advise you, I have to also speculate that even if the transition to menopause is gentler for you, I can't tell whether you would end up losing much libido, or whether that would happen sooner by virtue of doing tamoxifen and/or ovarian removal, etc. In regard to the Estring... For me there is no alternative. "Petting" and "caring touches" at 55 without entry for my spouse is like a life sentence. I read about the study in England (with a very small group) that indicated that using that kind of estrogen supplementation may very well be counterproductive for those using an AI. My personal experience indicates that could be true. The Estring is changed every 3 months, and if I happen to forget to replace it right away, my eyes are drier, my skin is drier, and I start having hot flashes again. What does that tell you? I genuinely believe in actively participating in the search for better answers. That is why I chose to be a participant in the clinical trial using testosterone for breast cancer patients, even though being HER2+++ might increase my risk for recurrence. If they do not test using patients who are HER2+++ then there would be no evidence applicable to HER2+++ patients one way or the other. To be in that trial I had to pay my way and fly to a participating site in the Lower 48. It is just too easy for those who offer life-saving therapy not to place any significant value on our libido. I have also read about the problem for those who are both AIB1 and HER2+++. Please note that neither my PCP nor my onc had the organizational skills and/or openness to bring that up with me for MY consideration. I had to take the question to THEM. (But then, neither of them ever even told me that I was HER2 positive in the first place, so the vacuum of their value in providing information to me is not a new trend for them.) By that time I had been on tamoxifen for 1 3/4 years. They did not even acknowledge the question. They merely responded that since by this time I was menopausal, it was "okay" if I wanted to switch to Arimidex. I had read that perhaps Femara was more effective, but the recommendation was Arimidex. So currently I am recommended to take Arimidex--which likely isn't working because of the Estring--and causes additional loss of bone density on top of all that is lost through chemotherapy. You would think that there would be at least enough professionalism that researchers would pause at least briefly in their stampede for greater knowledge to try to actually find a way to apply it, and that when they test for HER2 they would find a way to test for AIB1 instead of hiding it from us and leaving all of us to try to figure out how to deal with it. I happen to believe that my PCP literally is doing the very best he can. My onc is extremely well-liked and respected by and large by both patients and professionals. On the other hand, I don't and won't accept that patients like me are particularly unable or "difficult" to be a partner in our treatment, either. I don't know if my thoughts and experience are helpful to you, but there they are. With sincere sympathy, AlaskaAngel