What I Wish I Knew: Dealing with sexual side effects

Unexpected challenges with anastrozole

After surgery, chemotherapy, and radiation, Roberta Albany was not expecting more surprises from treatments. The healthcare team prepared her for hair loss, for pain, for drains, for fatigue, and the many other effects of treatment for stage II, hormone receptor-positive breast cancer. But shortly after starting the aromatase inhibitor anastrozole (Arimidex), Roberta, who goes by Bobbi, struggled with a new set of side effects that made it difficult to enjoy sex with her partner: vaginal dryness, lowered sex drive, mood swings, and after a mastectomy, she was struggling with the new image of her body with one breast.

No one had warned Bobbi about these effects, and when she reported them, she did not get the support she hoped for. Still taking anastrozole more than 6 years later, Bobbi, now 51, has found a helpful doctor, a support system of young women willing to talk about sex and intimacy, and methods to deal with sexual side effects. Bobbi says it’s still “a work in progress” but she is in a much better place with sex and intimacy than she was when treatment started.

For the latest What I Wish I Knew, Bobbi spoke with LBBC Copy Editor and Content Coordinator Eric Fitzsimmons about her experience with sexual side effects, techniques and tools she’s found that help, and what is still needed to help women with breast cancer.

LBBC: You started noticing sexual side effects when you began treatment with anastrozole. What happened?

Bobbi: I noticed it with the tamoxifen [Bobbi took tamoxifen briefly before getting surgery to remove her ovaries and fallopian tubes] but it became even more noticeable with the anastrozole.

When you get a cancer diagnosis you pay more attention to your body than ever before. The biggest thing I noticed was that I didn't want to be touched, I didn't have no sex drive, no nothing. I was still dealing with the fact that I had one natural breast, but the other one was removed and I was wearing a prosthesis. I wasn't feeling very sexual. You don't feel pretty, you're just down in the dumps.

LBBC: What did you do to try to manage sexual side effects?

Bobbi: I think what helped me was being online with a lot of breast cancer support groups and going to group therapy. When I started going to group therapy 5 or 6 years ago, there weren’t women that looked like me or were my age. Most of them were older and many women in the group got uncomfortable when I brought up sex. To me it was just crazy, because how do you let doctors just give you stuff and you don't tell them how this is making you feel? But those of us that are young, we talked about it, and as we started putting it together, everyone has gotten more comfortable having these discussions.

Once I talked about it and realized that I'm not the only one going through this, I went back to my doctors, but they didn’t want to talk about these things. I was told "Oh, your significant other, he'll come around." And I was like, “He'll come around, but that's still not helping me.”

Once I started talking to other survivors going through the same thing, I realized that we still have to educate the medical community. They cannot just give us medicines and not tell us what to expect. When we get chemo they tell us our hair is going to fall out, we know that. But with anastrozole and the other hormonal therapies to keep our risk of recurrence down, you need to tell women that they may experience dryness of the vagina, they may not have a libido, and all these other things. That needs to be a discussion. If they're uncomfortable, they need to refer us to a sex therapist, just like you have a therapist for everyone else. I think we need to be assigned to mental health counseling and a sex therapist as part of our survivorship care plan.

That's the beautiful thing that I love about Living Beyond Breast Cancer, when you're in the chat with women diagnosed at age 45 or younger, we talk about these things. We talk about sex because you're still trying to have a relationship with your partner. If the medical community can't help you, you look to your community. Most of my help came from the community at Living Beyond Breast Cancer, my online community, my in-person community, and support groups.

LBBC: One part of getting informed here is that you are taking these medicines for years. How does that change the relationship to this medicine when it's something you have to learn to live with as opposed to getting through?

I knew I was going to be on it for 10 years, so I had to figure out how to make the best of it. I found an OB-GYN who specializes in women who have cancer, and that's when things started to turn around for me. We got to talking about different lubricants that could help with the dryness. The lubricants had to be organic because you don't want any extra chemicals, you don't want to use anything that has chemicals because, especially with the type of breast cancer I had, some chemicals make your body think it has estrogen in your body when it doesn’t, . What helped me is the organic, raw coconut oil, and some other organic lubricants, and that's all I use. She also told me to massage the outside of the vagina, and also inside, to get the blood flowing so it can remember what it was doing before I had breast cancer.

We had to figure out what would turn me on. It's getting to know your body. I can't tell my partner what to do if I don't know what to do. My OB-GYN was like, "Be by yourself, and explore your body. Figure out what makes you get that urge, where you want to be intimate with your partner."

And believe it or not, it is work. It's not quite where I would love it to be, but it's much better than where it was when I started anastrozole. I like to tell people that it's still a work in progress.

LBBC: What advice would you share about sexual side effects with someone just starting hormonal therapy after active treatment?

Don't be ashamed. Don't be ashamed to talk about what you're feeling or not feeling. Don't be ashamed to relearn your body. Ask about the side effects and what you can do to deal with them. I definitely would suggest a sex therapist and a couples therapist. Your partner needs to understand that what you're going through is not because of them, it's because of the medicines, the side effects of chemo, radiation, the whole gamut of things. And if you lost one breast or both breasts, then you have these scars. It's definitely a whirlwind of shit that you have to go through.

This is the kind of thing I try to instill in the African American community, we have to talk about it because, whether you like it or not, it doesn't just go away. If you don't talk about it, all you're doing is burying your head in the sand, and that's not helping anyone that comes after you. This is why I do what I do, and why I'm so passionate about it.

The other thing is, the cancer community, we definitely have to educate the medical community. You can treat the disease, but you still gotta treat the whole body, the whole person. Everything goes hand-in-hand, but if no one was talking before we came along, they're going to continue what they were doing: prescribe the medication and send you on your way. We can't do that anymore. We have to find a different way.

Social media has helped too, because we’re putting stuff out there, and it's like, oh, snap, we do need to talk about the sexual side effects and marriage counseling or couples counseling. The point of it is, get into therapy, and do not be ashamed to seek out help. Do not be ashamed of it. There's nothing to be ashamed of.