Webinar: What Women Need to Know about Ovarian Cancer

I have stage 4 recurring ovarian cancer. I have been treated with Chemo four 4 1/2 years after surgery. Was given 2/3 months and started treatment of HEXALEN. Is there any other treatment that you would suggest.

Would have been nice to know this is really a closed trial for patients of Mayo only. Hope they have great success!

I have stage 3 recurrent clear cell ovarian cancer. You mentioned carboplatin and taxol are the standard chemo treatments for ovarian cancer. Would you say they would be the same for clear cell? Thank you.

@marcampos

For a 53 yo women with past medical history of hormone receptor breast cancer stage 1 6 months ago with BRCA 1 and 2 negative taking tamoxifene what is the risk of developing ovarian cancer and if is a recommendation profilactive oophorectomy

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Risk is likely the same as the general population of women— 1.4% lifetime risk of ovarian cancer.

@julieserra

25 years post Stage IC, diagnosed at age 31. Just had BRCA/2 VUS. Parent testing pending. Not clear on implications for surveillance for daughters, ages27 and 29 beyond Bcps with VUS. Thoughts?

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Usually no change in recommendations based on finding of a VUS.

@cynthiawick

Dr. Weroha: participating in clinical trials DOES cost patients $$. Insurance doesn’t pay for the trial drug, true, but it may have to pay for the administration of it – even if it’s not SOC. And so patients end up paying the copay for the admin. of the drug. I paid over $110 every 3 weeks for the admin. of Avastin for a trial, plus $30 for each checkup required every 6 weeks, plus parking fees and gas etc., for 22 cycles! My mother participated in a trial at NIH and although they arranged her plane flights, they didn’t provide a place to stay, when she had to be near Bethesda, MD for about 3 days every month. Hotels in the area start at $200/night!

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Thank you for the comment and opportunity clarify. As you point out, clinical trials do not provide all-expenses-paid care, only access to drugs that are not considered standard of care (SOC) and could otherwise cost thousands of dollars per month (an endeavor that is not otherwise feasible). I can’t speak for how trials are conducted across the country but I can say that we make a concerted effort to identify potential charges to our patients for things that aren’t considered SOC at every level. This includes, but is not limited to, cost of scans, blood draws, extra biopsies, and extra tests (such as ECGs or gene mutation testing). If we catch potential reimbursement issues for our patients, we look for ways to get those tests covered or make the patient aware of such charges ahead of time. That said, we could miss a non-reimbursed charge. This would also be dependent on the individual insurance plans and coverage will vary. We have no control over what insurance will cover.
I also share your frustration regarding co-pays and checkup fees every time I get my own bills as a patient, not physician.
Also, I wish there were a way to get free travel. This is a significant limitation for patients wanting to get treatment at Mayo (clinical trial or not). As you can imagine, most of our patients do not live in Rochester, MN, a city of only 100,000 residents with one-third comprised of clinic employees. We don’t reimburse air/ground transportation or lodging for patients who come here for standard therapies and likewise, it wouldn’t be feasible to do this for clinical trial participants either. Because we don’t pay patients to participate in a clinical trial, reimbursement for travel/lodging could be misinterpreted as payment. However, The Hope Lodge has a free place to stay for Mayo Clinic patients getting daily treatment or those participating in a trial. Since it is supported by the American Cancer Society, there is no conflict of interest.
On a final note, Avastin is now considered a standard therapy for ovarian cancer. As such, your mother literally got a standard therapy of the future, but she got it many years before other women who did not participate in the trial. I hope to offer the same “VIP” treatment for every patient who is interested in a trial.

@alyssabauer

What are your thoughts on the “new blood test” that is supposed to reveal which women will get ovarian cancer (out of the UK)?

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There are actually 2 long-term studies of ROCA (risk of ovarian cancer algorithm) currently ongoing in the UK. ROCA is a mathematical algorithm that uses serial CA-125 blood tests (usually every 4 months) and calculates the risk of ovarian cancer at the time of each current blood test by comparing it to each individual woman’s “baseline normal”. This test doesn’t predict which women will get ovarian cancer; it’s designed to detect ovarian cancer at an earlier stage when it is potentially more curable. One of the studies that is going on is in high risk women (BRCA carriers and others with strong family histories of ovarian cancer) and the other is in the general population of women. On May 11, 2015, early data was published on the study in the general population (Risk Algorithm Using Serial Biomarker Measurements Doubles the Number of Screen-Detected Cancers Compared With a Single-Threshold Rule in the United Kingdom Collaborative Trial of Ovarian Cancer Screening.
Menon U, et al. J Clin Oncol. 2015 May 11. pii: JCO.2014.59.4945).

The findings suggest that ROCA does help detect ovarian cancer better than just using a single cutoff for CA-125 (most often this cutoff is 35, but with ROCA each woman has her own cutoff). The findings are promising, but we are awaiting data that shows whether using this blood test every 4 months improves survival from ovarian cancer. That is the true test as to whether this test will make this test a standard of care for women.

@bluhmcd

What if I didn’t have my surgery at Mayo but did have my tumor profiled through Caris, could I still do the Avatar trial?

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In order to be on the Avatar trial, live cancer tissue is needed and it is taken from within the patient when she is having surgery.

@gwenbasinger

By initial surgery for qualification for the Avatar study, do you mean surgery at initial diagnosis? I had platinum based treatment in first occurrence, 10 months NED, recurrence and now not responding to second line treatment. Am I a candidate for the Avatar study?

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The upcoming Avatar study will be open for women who are having their initial debulking surgery. Since you have already started second line therapy, we wouldn’t be able to make an Avatar for you in time to help. This process takes several months. However, there is a clinical trial open at Mayo (MC1464; clinicaltrials.gov identifier: NCT02283658) for women with recurrent ovarian cancer. This is a phase II study in which women with hormone receptor positive ovarian cancer are treated with everolimus and letrozole. As part of the study, an Avatar is made. The Avatar in this study is not used to predict response to other chemotherapies; it is used to better understand the response of the woman’s cancer to the study drugs—everolimus and letrozole. More details on this study can be found at: https://clinicaltrials.gov/ct2/show/NCT02283658?term=MC1464&rank=1

@alexsimon

I have BRCA 1 mutation – what age should I consider surgery? What if my family isn’t complete yet – are there other options?

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NCCN guidelines recommend consideration for surgery at age 35, or when childbearing complete. If not completed with childbearing, pelvic US and ca-125 every 6 months.

@tpanelas

I understand that women who don’t have either of the BRCA mutations can nevertheless have tumors that have one of those mutations or that behave as is they have those mutations. Would you recommend having tumors tested for this, and if so what course of action if the test is positive?

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You are indeed correct that some patients have tumors with BRCA mutations while the non-tumor cells (such as white blood cells) can have a normal BRCA gene. Currently there is not a tumor test for “BRCAness” that is used clinically to make decisions for treatment. There are tumor tests that are being used from a research standpoint to better understand tumors that have a BRCA mutation or behave like they have a BRCA mutation. Examples include the Myriad HRD test and FoundationOne Next Generation Sequencing. However, performing genetic profiling of the tumor will not help guide current therapies. For instance, Olaparib is an FDA approved drug for patients with BRCA mutations but it is not approved for use in the situation you describe. As such, testing the tumor would not guarantee insurance coverage for treatment and it would be considered off-label. However, it might be reasonable to test the tumor for mutations if you were interested in participating in a PARP inhibitor trial that does not mandate germ-line (or inherited) BRCA mutations. The Mayo Clinic Center for Individualized Medicine has expertise in this area and a consultation could be scheduled. The pros and cons of tumor gene profiling should be discussed with your local oncologist.

@peggycampbell327

What is the youngest age that you recommend genetic testing for 15 year old girl who’s paternal grandmother [age in the 60’s] died from ovarian cancer [no genetic tests] and who’s maternal aunt had Stage 2c ovarian cancer with negative BRCA1 and negative BRCA2 at age 60.?

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Age 18

@ellenhanlon

41 yr old-if I decided to have fallopian tube and ovary removal due to genetic testing results, did I miss the window? why is the recommendation between the ages of 35-40? is this still a benefit to have performed in 40’s?

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Yes, recommend risk reducing bilateral salpingo-oophorectomy

@melissarvh

How can I distinguish symptoms of ovarian cancer from possible gastrointestinal conditions (with similar symptoms)? I have been told that ovarian cancer is sometimes misdiagnosed as a gastrointestinal disorder.

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The symptoms of ovarian cancer are vague and can include GI symptoms. In order to fully work up symptoms, imaging (CT scan) and GI assessment (often a colonoscopy and sometimes an EGD) are often recommended. Occasionally a diagnostic laparoscopy is considered if symptoms such as pelvic/abdominal pain persist.

@camdamiller

With 2 sisters with Ovarian cancer and a third one with Breast, will I be eligible to do the gene testing and be covered by insurance?

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Will depend on insurance. Many of the commercials labs have prior authorization process. The lab will contact you with out of pocket cost after testing is ordered. If out of pocket cost is prohibitive, testing can be cancelled.