online conference- sexual issues and breast cancer

[Margerie]

http://www.breastcancer.org/tips/int...8_02/index.jsp

[AlaskaAngel]

Thanks, Marjorie.

It is an interesting discussion and worthwhile for consideration. But I have to say, I thought this piece of truth was pretty lame, after all these decades of treatment:

"Why isn't sex discussed during treatment?

Question from Frustrated: In all the pamphlets they give you to prepare for a future with breast cancer, all the doctor appointments, all the survivor stories, I can't remember this subject ever coming up. Of course survival is the ultimate goal, but I think all aspects should be addressed! Why do you think this subject is bypassed?

Answer:

Dr. Leslie Schover:

I think that doctors in the oncology clinics and even the nurses and social workers are often so pressured to see as many patients as possible that it's hard for them to take the time to discuss things that aren't the highest medical priority. "

[Colleens_Husband]

Forgive me in advance for talking about this subject. I guess I was raised in a time and place where discussing sexual subjects just wasn't talked about in a public way. That time and place are now long gone, but it may be one of the reasons doctors are reluctant to discuss the subject of sex. The only reason I would bring up anything was that I wanted to make sure there is at least one husband's perspective.

What I will say to you is that you are okay. If I am the man you should spend the rest of your life with, then I will love you and accept you, no matter what. I took a vow that I would cherish you, forsaking all others, in sickness and in health. I will honor that promise with you. Baldness, scars, menopause, the smell of chemotherapy on your skin and any other physical thing isn't going to change how I feel about you. It isn't going to change how much I want to be intimate with you. I've grown to love you. I am past adolescent infatuations and I think we have something more than that going on.

Let me know what you are feeling. If you are insecure, than I will help you. If you are uncomfortable with sex, let me know and we will try different things. It won't hurt my feelings. We are in this together and we will work things out together.

[AlaskaAngel]

Hello C.H.,

Thanks for taking the time to express so well what is important about a loving, caring relationship. My spouse says it in so many ways, and has "been there" for me throughout all of our ups and downs, not just bc and treatment. We all need to have that kind of acceptance and reassurance, and I am deeply thankful for it.

Breast cancer diagnosis as I understand it, primarily affects those who are older and part of the generation where sexuality was not as openly discussed, and I am sure that too is some part of why there is a lack of discussion about it between the medical providers and the patients.

But there is a principle involved here, and it is called "informed consent". For those who are making choices about therapy, and especially those who are in a situation where it is far less likely to be of benefit, there is no genuine excuse for medical providers to cop out from spending the time to include that in discussion with the patient as a likely effect of treatment so that any decision that is made, is an informed decision. There has been a tendency that is more the rule than the exception for the provider (who isn't going to experience the actual effects) to treat the loss as if "menopause would have happened eventually anyway" and as if chemopause and menopause are synonymous.

As individuals in a relationship we are part of a commitment. As a person who wants my spouse to continue to enjoy his sexuality as much as possible, but for whom sexuality has disappeared entirely due to treatment, what is my role now?

I could have made a much different choice for both of us had there been honesty from my providers instead of the continuing excuses I see.

Respectfully,

AlaskaAngel

[Hopeful]

Sometimes, the doctor is more in the dark than you think. I had just been dx with atrophic vaginitis two months prior to being dx with bc. Romance was pretty much out of the picture through 2 surgeries and getting my head around the dx and tx choices. I am ER+, and my onc told me he was going to put me on an AI. I was aware that this would make the condition worse, and I told him at that visit, "I have vaginal atrophy." He didn't pause a beat and kept on talking. Six months later, I am at the gyn's for my annual visit, and she cannot properly insert and open the speculum to do a PAP smear because the VA has progressed. At this point, I tell her I want topical estrogen therapy, and she says the onc needs to agree. I see him the next day, and tell him what the gyn says, that topical estrogen is called for, that I have vaginal atrophy and can no longer have sex. (THAT got his attention!) He said, (rather boorishly, I thought) How do you get THAT? (He had no idea what I was talking about - no doubt why it did not register the first time). He looked it up on the internet while I was there with him. He agreed that not being able to have sex was an unacceptable change in QOL, asked me to have the gyn fax him her report, and agreed to have her prescribe the topical estrogen therapy. She did, and things have been improving ever since.

I said all that to say this - the doctors need to be educated in this, too. I was using a standard medical term for a common complication of both menopause and bc tx with a medical professional who treats tons of menopausal women with bc, AND HE DID NOT RECOGNIZE THE NAME OF THE CONDITION. How can he possibly counsel patients about something he had to look up on line while I was there?

He is around 57 years old, and a pretty hip guy, all things considered, so I was genuinely taken aback. My advice is to not hide behind the medical terminology if you have an issue - describe what is happening as bluntly as you can and insist you be given some real life options.

Hopeful

[harrie]

Margie, thank you very much for posting that question and answer session. I found the information to be very interesting. Much of what was covered has been on my mind quite a bit lately.
Harrie