Anti hormone therapy, Anastrozole, sexual function

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Electra
Electra Member Posts: 7
edited September 2018 in General discussion

I am 66 and was diagnosed with early breast cancer, estrogen
positive, in June and have had breast conservation surgery and completed 16
treatments of radiation last week. On Monday I have to see my medical
oncologist who will give me the yeah or nay to anti hormone therapy on
Anastrozole for five years. The treatments seem to be getting more problematic
as I advance through them. The surgery in hindsight seems like a breeze.

The literature on the side effects of Anastrozole are mind blowing;
going through menopause (again), I am a lesbian so why I want a men-o-pause is
beyond me (joke!), nausea, vomiting, elevated cholesterol, fluid retention,
joint pains, dry vagina, bone loss, loss of sexual desire.

I have read of women who have had negative changes in the
way they view their bodies and sexual functioning and desire but I am having a
different experience. After the operation I became aware for the first time in
my life how much I appreciate my breasts and I want them to be a part of my
identity. When I first grew breasts, I saw them as a restriction to playing
cricket with the neighbourhood kids. I never saw their power and beauty before
now.

The other major change for me sexually is that the sex
switch in my brain has been turned on again. I am single and am now
contemplating and fantasising on sharing intimacy, loving and sex with another woman
as a part of my future. A number of years ago I was going through a
difficult patch and had shut down any thoughts of this to help cope getting
through everyday life.

I would love to hear your thoughts on any of the above. What
has been your experience on Anastrozole and the side effects. Thanks for
reading my story and I thank you in advance for your input. Many of the
discussions and responses on this site have helped me enormously with questions I
have had over the past few months.

Comments

  • Sister
    Sister Member Posts: 4,960
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    @electra Power to you, woman!  But it seems that many of us have struggled with sexuality after menopause (natural or forced) and AIs.  I've still to find out how Letrozole will affect me - natural menopause and chemo have had enough impact.  My oncology centre has just employed a sexual health consultant and I'm going to be seeing her on her first day!  I want to head off any further problems.  Have you joined the "Let's talk about vaginas" group? 
  • Electra
    Electra Member Posts: 7
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    Such positive words Sister. Top marks to your oncology centre for employing a sexual health consultant and all the best for your appointment with her. It does seem to be a common problem but is not addressed by the medical profession in cancer treatment. A week ago I requested to join the "Let's talk about vaginas" group but have not received a reply yet.
  • AllyJay
    AllyJay Member Posts: 943
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    Hi there @Electra ...welcome with your first post, although I gather you've been reading other posts for the past few months. I'm 60 and also post menopausal. (Was post menopausal in my mid thirties, so very early). I was diagnosed two years ago, six months chemo then bilateral mastectomy thereafter. Couldn't have rads due to preexisting autoimmune condition. Am now on leterozole, which is also an aromatase inhibitor, similar to anastrozole (Arimidex). Have been for about a year now. Some folks get all or many of the side effects listed on the information blurb, and some get very few. You really won't know until you start. For me, because I have three overlapping autoimmune diseases, with their attendant problems, as well as the cancer and other shit, it's hard for me to apportion blame for various symptoms. For example, my scleroderma gives me severe joint pain and stiffness as well as muscle and tendon pain due to stiffness of the connective tissues. So what additional joint problems are from the leterozole, and what from progression of the other? I already had osteoporosis prior to starting on the leterozole, probably from the very early menopause as well as having been on cortisone (panafcort) for years now, So the bone thinning thing is also blurred as to what is responsible for further loss. As far as Downunder and libido, well for me, to further use the automotive slant used by our own inimitable @onemargie on the sex thread, sometimes I have to give the old chorrie (South Africanism for old car) a push start and then pop the clutch to get the motor turning over. The old Bachman Turner Overdrive song thing of Taking Care of Business comes to mind. A squirt of this and a rub of that works wonders for me when I feel the need. I say give it a go, you can always stop if you can't bear it, but you won't have the same options the other way if things go pear shaped.
  • Sister
    Sister Member Posts: 4,960
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    @SoldierCrab? (I'm having a mental block which is not unusual - I have got you right as an administrator, haven't I?)
  • Sister
    Sister Member Posts: 4,960
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  • Electra
    Electra Member Posts: 7
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    What an inspiration you are AllyJay! I only see positivity and hope radiating from you. Your story is a great encouragement for me and I had a lol moment reading your method of getting the chorrie going. It is all about having fun, isn't it.
    As you say, 'give it a go', I can always stop if it is unbearable. 
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
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    Hi Electra, haven't seen request for you to join have sent you aan invite right now...
  • kmakm
    kmakm Member Posts: 7,974
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    Hi Electra, top post & beautifully written. I don't think I'm able to help you much as I'm a bit younger and was put into menopause by BC. Like @AllyJay I don't know where the effects of Letrozole, menopause and chemo start or finish! They're all mixed up together at the moment. I will say though that in the last couple of weeks I've had a couple of moments which has led me to believe I don't have a completely flat battery... so maybe all is not lost! K xox
  • Afraser
    Afraser Member Posts: 4,371
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    I was 67 when diagnosed, post menopausal of course but all normal functioning. Vaginal dryness was the most immediate side effect (no aches, joint pains, or arthritis type symptoms at all). Nearly six years on, my capacity to switch on is about switched off! Intimacy, warmth, my partner's pleasure is all fine but my own interest has died off. It may well be a combination of things. I am sticking with letrozole for all the obvious reasons and because some side effects are unlikely to reverse even if I stop. Adjustments can be made and of course not everyone gets the symptoms or to the same degree. Good luck!
  • primek
    primek Member Posts: 5,392
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    I haven't had a high sex drive since natural menopause but notice it is better on holidays etc so work pressure and endless household chores  is definitely the passion killer in my life. I'm on letrozole and although initially I had joint stiffness it has pretty much resolved. Hot flushes and sexual desire didn't change to what itcwas post menopause . Dryness was an issue immediately post chemo but is back to the dryness I've had since menopause which needs some assistance with lovemaking. 
    My cholesterol has definitely gone up so we are watching that. Bone density is being closely monitored also as I had a huge drop after menopause but my first year on letrozole has shown normal loss....so far.
  • Electra
    Electra Member Posts: 7
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    kmakm said:

    Hi Electra, top post & beautifully written. I don't think I'm able to help you much as I'm a bit younger and was put into menopause by BC. Like @AllyJay I don't know where the effects of Letrozole, menopause and chemo start or finish! They're all mixed up together at the moment. I will say though that in the last couple of weeks I've had a couple of moments which has led me to believe I don't have a completely flat battery... so maybe all is not lost! K xox

    Thanks for your kind words kmakm. A difficult time through for you going through menopause because of this disease. My heart goes out to you. Hope the energiser bunny keeps kicking in more and more. xox
  • Electra
    Electra Member Posts: 7
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    To keep all the wonderful women who replied to and read my post up to speed. I went to the appointment today and will begin to take the anastrozole as of tomorrow. It was almost as if the doctor had read my post...ha ha. She said that if I have very severe side  effects to discontinue taking it and go back and see her before my next appointment. However she said that they tend to iron themselves out within 4 months. Also because I have a low level cancer I could get protection by taking it for 9 months each year.

    The good news is that because I was borderline osteoporosis in my bone scan last year my GP put me on Fosomax. This meant that my Vitamin D blood test came back at 120 which caused the medical oncologist to remark that she had never had anyone with such a high figure.  :)
    Thanks all
  • Zoffiel
    Zoffiel Member Posts: 3,372
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    Ah, sex. I miss it so. The problem is complex. There is the lack of desire, which in itself is not insurmountable but when you couple that with the fact 'my whatname has snapped shut' things get really complicated. I might add, the whatname statement applies to pretty much anything from problems with my car to my inability to get a padlock undone on my garden shed. Chemo brain makes for odd shortcuts when trying to explain things.

    If you are fantasizing about a relationship I think you are halfway there. The changes in what is physically possible when it comes to penetrative hetro sex have a flow on effect for many of us--decades of sex following a familiar and satisfying path are overturned and we now have to not only learn a new way for ourselves, we have to figure out how to satisfy our partners as well in a way that doesn't leave them mourning what has gone. It's difficult to teach an old dog new tricks, and a couple of very painful and unsuccessful attempts can make both participants very wary. That's not such a problem if the focus is not on accommodating a penis.

    Phhftt, have a go and do what comes naturally to you.

  • Electra
    Electra Member Posts: 7
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    Oh Zoffiel, I love your directness and honesty and am amazed that you can reach out to me and validate my future hopes. All the best to you and I hope that you can find a new path to you and your partners satisfaction. I lost my car keys today in a shopping centre and sent out a request to my mother and Aunt Carrie (both deceased) to find them and get them back to me. 10 minutes later I got a call from the pharmacy who said that they had been handed in. I will send a request to them to find you and your partners mojo and have it returned.   :):)

    I have never been one who reached out to others for help, advice or for sharing a problem. This diagnosis has turned my world up the other way and I am talking to people in my daily life about it. Very much a learning experience for me but making my life richer for it.