Survey on Coping with Changes in Sexual Life after BC

Outfield

Well, I'm glad somebody's studying it. It's an imperfect instrument, but at least someone's interested.

When I think about it, I am so angry that nobody warned me what would happen to me. It wasn't on my radar to think to ask - I was too busy worried about dying. Maybe I would've regularly used a dilator if I'd known. At least the ball would have been in my court to do something. I don't walk around bitter and negative, but all the time spent on how to deal with all the other issues, like bone loss, and nobody ever even mentioned what the drugs would do to my sex life.

Momine

Sara,

KB, ditto

Outfield, I also can't help but think that men going through prostate cancer, which does similar things to their sex lives, get better info and counseling than we do.

Moderators

Bumping this thread, as they would like more completions (already have 284). Thank you for your help, and inputs.

amarantha

I would like to add that, yes, sex is painful now, penetration even with a finger is to painful to contemplate, being touched by the most darling of husbands still feels too uncomfortable to bear. But while the physical difficulties can be helped by lubricants, the real problem is that sex has been amputated from my brain. Enjoying sex - yes I remember it, in theory, but the whole idea of sex has been blurred out. Talk of it now, or tasteful sex scenes in movies on tv, have become annoying and boring, like when they talk about sports on the news, I mentally tune out, hope for it to be over soon. And this from a gal who used to have one of the most tyrannical sex drives ... Luckily my husband is in a similar place at age 81, and is probably somewhat relieved by my lack of interest. On the other hand, cuddling, kisses, touching, rolling together, enjoying physical closeness, declaring our love over and over, that is all wonderful. It is like my whole tyrannical urgent passionate crazy sex drive has moved into my heart.

Sara536

Thank you, Amarantha, That is beautiful! There is precious little talk here about Love. Too much talk of making “Slam, Bam Thank you Ma'am" possible - as if that is all love and sex is!

Outfield

Momine,

Of course they get more! They're men! I work a lot with men who have or have had prostate cancer. They definitely get warned that basically any treatment they could choose carries the risk of erectile dysfunction.

Momine

Amarantha, you make some good points, and I am glad that you have such a good relationship with your husband. I am sure your experience of libido loss is not uncommon.

In my case, however, my libido survived just fine. The AI may have something to do with that. Since it prevents the conversion of testosterone into estrogen, I presumably have a fair bit of testosterone floating about, with the result that I ogle pretty boys just as eagerly as I always did Problem is, I can't do much more than that.

Outfield, I think there are elements of care that are missing from BC treatment. 1. I think all women who have lymph nodes removed should receive lymphedema prevention and LE physical therapy as a matter of course. None of this waiting around till there is an irreversible problem. 2. Any woman going through this ought to get some counseling about sexual issues etc., as a matter of course. Doctors are not equipped to do this, which is fair enough. But then get someone on staff who is.

Outfield

Momine, I absolutely agree with you.

calidancer

Curious why they excluded DCIS from this survey? We've had many of the same treatments except chemo?

Moepeanut1324

Wow, I've just been dx with bilateral BC. Getting all the prep tests done, then on to some combo of tx which includes a double mastectomy.

I am a very sexual person and my partner and I have enjoyed an active intimate sexual relationship. Since the dx though I have found that she is not do inclined and distant. I have tried talking with her about it, and she excuses it to being tired. If this is happening now before sx I expect there will not be any after sx.

This is extremely hurtful to me and I'm just in the beginning stages yet!

Any thoughts/advice.

Thanks.

Momine

Moepeanut, sorry you are dealing with that on top of dealing with DX, doctors etc. Why don't you ask if your doc/hospital has a counselor available. For you, I mean, to get some tips on how to approach your partner. It is difficult for partners in many ways. She may be afraid of hurting you, or afraid of losing you.

Moderators

Moepeanut1324, indeed, we too are sorry you are dealing with this. A cancer diagnosis really does affect the entire family, and sometimes in ways that are difficult to predict.

If possible, it could be helpful if you can be honest and direct about how you feel, which you may already be doing. Many find it helpful to get help from professionals (e.g. therapists), as needed.

We are here for you

Moepeanut1324

Thank you for your support. We continue to talk, and yes as it turns out she is afraid of hurting me and in the anger phase of accepting this is happening to me. I do think attending some counseling sessions and support group would be a good idea, for me and for her.

Thanks again.

Momine

Moe, glad you are making some progress.

lunamoon97367

why does this only involve statge 1-IV why not people that have stage 0 that have BRCA estrogen + Cancer as well. I mean I had DCSI but because i carry the BRCA gene i have had to have a bilateral double Mastectomy done and now have alot of more tests. My sexual drive has gone down since this has happened. So im not sure why stage 0 wouldn't be included in this.

Julia0804

Does anyone know if you stop taking AI's will the damage reverse?

Sara536

I was hoping it would. I only took anstrozole for four days and quit because I couldn't tolerate it. It seemed to have killed my immune system, at least temporarily, because my mild diverticulosis (which many older people have) became diverticulitis immediately. The meds for that were very painful also but at least were short term. I feel that I have never recovered from the anastrizole but maybe it is just my arthritis progressing as it might have anyway. Now I seem to be on the road to hip replacement. I don't really know if the AI set that in motion, but at this point I have no intention of going back on.

Sara536

I deleted my post regarding damage from anastrozol because I realized the question related to changes in sexuality, not arthritis.

Moderators

Closing this now with 656 completions. Thanks Everyone for filling out the survey, and for your very important comments!

With Gratitude,

The BCO team with the Dana Farber Cancer Institute