9 Questions With a Surgeon: Life After Risk-Reducing Surgery

Upon discovering they have an increased risk for breast or ovarian cancer, many women with a BRCA mutation undergo surgery to lower that risk. However, according to Olga Ivanov, many go into surgery without a full understanding of how it will immediately affect their life.

Ivanov, a breast cancer surgeon at the Florida Hospital Cancer Institute, led a study involving women with a BRCA mutation to see how their sex life was affected after receiving risk-reducing surgery. She discovered that many suffered personally in the aftermath of their surgery, were not informed by their physician of these problems before surgery and continued to be uncomfortable talking about these topics with their doctor.

Can you give an overview of your study?

Ivanov presented the findings of the study at the 2016 Annual Meeting of the American Society of Clinical Oncology (ASCO), a gathering of 30,000 oncology professionals in Chicago. CURE spoke with Ivanov to discuss the importance of education and adjusting to a “new normal.”In 2012, we had a chance to distribute over 1,000 questionnaires to carrier of BRCA1 or 2 mutations who are members of the Facing Our Risk of Cancer Empowered (FORCE) organization, which is a support and advocacy group. About three out of four returned the questionnaire.

We found very interesting results based on what we asked. We had particular interest regarding women’s sexuality and libido after receiving risk-reducing surgery, such as a mastectomy or oophorectomy. About 80 to 90 percent of these women were extremely concerned about their decreased sexuality and libido. Just to give you an example, about 12 percent of the general population is sexually inactive. Among this population, though, about 40 percent were sexually inactive after receiving risk-reducing surgery.

Are there any changes — physically — that make the act of sex harder for patients and survivors?

What are the next steps of this research?

Why is it important for providers to discuss the symptoms of treatment with their patients?

Are patients comfortable speaking about their personal problems with their physicians?

Why do physicians need to be aware of problems patients face in their personal lives?

Who else takes part in caring for a patient with cancer?

How is the field evolving?

Having said that, the patients have not experienced any regret over undergoing surgery, but they did wish their physicians spent more time preparing them for what was coming and managing their expectations. A majority of women went into surgery unaware they would become post-menopausal the day after their oophorectomy.We are always improving our method of treatment. As a breast cancer surgeon, I do surgeries that would have seemed impossible five years ago, such as nipple-sparing mastectomy. This type of mastectomy maintains a far better physical appearance, causing less emotional trauma to the women undergoing the surgery. Additionally, if we cannot give them the hormones back, can we find equal — but safe — alternatives?We must improve patient education. We can’t, at this point, let patients go back on the hormones we’re depriving them of, whether it’s through chemotherapy or by taking out their ovaries. We can, however, potentially educate them and look at the complementary medicines that mitigate their post-menopausal symptoms after surgery.It’s much needed because an uneducated health care professional translates to an uneducated patient and it becomes a vicious cycle. It’s important to not just take away the breast cancer, but understand and realize what happens next. Is that life we saved worth living afterwards? How can we make it worth living? A lot of patients are ashamed to bring up their sexual lives. When they’re with a physician, they’ll talk about cancer recurrence and cancer survival. For me, it’s only when I leave and my nurse practitioner comes in that they are able to open up and discuss the problems they are facing sexually. Physicians must assure patients it’s OK to speak with them about these problems and even consider bringing up the topic themselves.As a surgeon, I may not have the solutions they need, but I still have to be aware that my patient is not just a person with breast cancer. She is a woman. I may not be able to address her specific problems myself, but I have a colleague next to me who has much more access to the patient.Treating a patient with cancer is just like a symphony. The maestro cannot conduct the symphony with no players. Cancer is treated in a multi-disciplinary fashion and involves everyone, including surgeons, physical therapists, counselors and psychiatrists.Things are definitely evolving, particularly as we find out it’s not just BRCA1 and 2, there’s all these other actionable genes. We started with two genes, now there are five genes that are actionable that do lead to prophylactic mastectomies and oophorectomies.

Why is this an important topic to address at a meeting such as ASCO?

As things are evolving, I think educating yourself and staying on top of things are very important. Before, we probably changed our pattern of practice every ten years. Now, we probably change our practice every six months to every year. That’s how rapidly things are evolving in our area.Survivorship is coming to the surface. Before, it was an afterthought. We congratulated ourselves after getting rid of the cancer in our patient, particularly in breast cancer because it has an incredibly high survival rate. Now we’re really starting to focus on what happens next. Getting rid of cancer is part A, but part B is just as important. It’s becoming an increasingly relevant topic.

This particular topic of survivorship was chosen to be presented at this conference because we’re highlighting the importance of not just curing but taking care of a whole patient and her whole life, not just the episode where the cancer began and ended.