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Thank you, Dr. Dizon! I was diagnosed w/Stage IIIc high grade serous ovarian cancer on 11/20/15. Estrogen receptive,Non BRCA. Just had my first recurrence. Started Doxil/Carboplatin on 5/18, 2nd dose is tomorrow, oh boy :). Do you feel there are viable treatment options in Germany &/or London that might benefit some of us if we are able to pursue it at some point?
In September I will be leaving MGH and will be the Head of Women's Cancers at Lifespan Cancer Institute and the Director of Medical Oncology at Rhode Island Hospital in Providence, RI. I am excited to take on that as a new opportunity.
Most cases of epithelial ovarian cancers (which include primary peritoneal and fallopian tube) are still felt to be sporadic, which means not hereditary and otherwise, without a known cause. However, the field of genetics and cancers is ever expanding and we are learning there are other mutations that are associated with these tumors.
At MGH, we are recommending REPEAT genetic counseling and testing if a woman was tested for a BRCA mutation >5 years ago, primarily because the field has advanced so much since then.
Thanks for the question Rgtater63! We want to make sure these questions and answers to provide useful information to the entire community. Dr. Dizon, can you answer this in a general sense?
Surgery with the intent to remove all visible tumor is still the primary treatment. While medical therapy is important, we cannot treat this disease with curative intent without it.
Sure! There are several such as mirvetuximab, which targets the Folate Receptor, and novel combinations, including immune checkpoint inhibitors plus another drug, whether it be chemotherapy, a PARP inhibitor or an angiogenesis inhibitor. In general, I think immunotherapy will only work in combination with something else. Sadly, we have yet to identified a mutation or target for a new drug, like they've been able to do in subsets of lung cancers.
PARP inhibitors = Poly ADP Ribose polymerase inhbitors. We thought they were only relevant for tumors associated with mutations in BRCA, but with the approval of niraparib, it seems like these agents benefit women with a platinum-sensitive recurrent ovarian cancer...
A corollary to that question is what other mutations do we know give us a higher chance of developing ovarian cancer beyond what is known about the BRCA mutations.
I am also wondering how can I tell my friends to talk to their doctors about ovarian cancer.... it seems so manydoctors are missing symptoms or assigning them to other problems but wen your doctor is just pushing you aside, how do you get them to listen
I think the answer is be persistent- if you are not satisfied with your doctor's response, keep pushing. Clinicians are there to help you, not the other way around. Engagement means that both sides matter, and work together to help. So, if your friends (or you) are having symptoms, and your concerns aren't being met- assert your concerns. If it's truly about a fear it might be something like ovarian cancer, go so far as to ask for a CT scan (abdomen and pelvis).
Thank you for this encouragement. Why do you think it is that GPs are so quick to overlook ovarian cancer as a possibility? Even when a woman has a history of breast cancer? I know it is a rare disease but is there something in the way docs are educated (or perhaps NOT educated) about ovarian cancer that makes them discount it?
There is a saying in medicine: When you hear hooves, think horses (not zebras). Ovarian cancer is still a rare disease, and the symptoms are so nonspecific and are associated with much more common conditions (reflux, irritable bowel, endometriosis...)
But, these do not excuse doctors from not looking for ovarian cancer when there is even a hint of suspicion (on their part or on the woman's part). I think you have to think about the diagnosis to rule it out. In a busy medical practice, one tends to think of the common things seen every day, not the rarer things that might be so much more serious.
I encourage women to be very proactive in making sure their concerns are heard, and addressed.
That is true. I wish sometimes that ovarian cancer got more attention and recognition, because it seems that if we were all more attuned to it, fewer women would be diagnosed at the later stages. And it often seems like the onus is on the patient to push doctors to hear them. But doctors are busy people too, and it is a balancing act for everyone. Thank you!
That depends. In the US, access to clinical trials can be tricky, for non-US residents, especially if they are funded by the National Institutes of Health. Alternatively, access to treatments might be more available in Europe, but at a significant cost for those who live in the US. If you are thinking or looking at treatments outside of your home country, make sure to look at the evidence underlying them- talk to your personal docs about what you are looking in to, and get their take on the data (or lack thereof, as it might be).
Well, HRD can only be tested in a tumor, so called genomic testing. This is very different from testing for a germline test using blood or saliva, called genetic testing. For PARP inhibitors, Rucaparib specifically can be used if there is a genetic mutation (blood or saliva) for a mutation in BRCA OR the tumor shows a mutation in BRCA (which can be seen even if there is no inherited BRCA mutation) or shows HRD. However, niraparib does not require testing for either a genetic or genomic mutation.
Several women in this group have been diagnosed with clear cell ovarian cancer and have read that this type of ovarian cancer may be less responsive to the standard chemotherapies. What makes clear cell different? Is current research being done to determine what therapies work best for the different ovarian cancer tumor types?
Great question. I wish we knew why they were not more responsive than serous carcinomas. We do know these are less likely to be associated with mutations in BRCA and that when you look at the tumor's genome (genetic code) it resembles other clear cell cancers from other places, like the kidney. There is a very early hint that clear cell cancers of the ovary MIGHT be more responsive to immune checkpoint inhibitors. I am hoping to launch an industry sponsored trial looking at this specifically, and I am not alone in these kinds of efforts.
Women with end-stage disease often have severe issues with their abdomen: pain, profound constipation, severe bloating, persistent nausea. Shortness of breath is present in many patients as a result of fluid build up around the lungs (pleural effusions). Extreme fatigue is also present.
No, ascites is not always present, but it is in a large majority of patients- it doesn't signify end-stage disease either- it's common to see it at the time of an initial diagnosis!
A few women on here also had questions about specific nutrition or diets for ovarian cancer. Is there anything diet-wise that you recommend to your ovca patients across the board, or general tips?
It's really important to remember a woman is more than her ovarian cancer! I always advise a heart-healthy diet. Everything in moderation is fine. I do not advocate a starvation diet and also don't think it's necessary to stay away from sugar- a little cake will do you good. BUT, moderating intake is important. People sometimes think cancer will make you anorexic, but ask anyone who's done first-line chemo for ovarian cancer- it changes your metabolic rate and most end up gaining.
It's my understanding that the TP53 genomic alteration is pretty characteristic of those of us facing this OC challenge... (for example,TP53 V272L). Are potential treatments recommended for that type of alteration, or supportive approaches to approach this in the near future? Thanks so much...
What are the current thoughts on hormone replacement therapy in patients diagnosed with ovarian cancer - either in remission or treatment? What do you recommend for post-hysterectomy vaginal dryness?
In general, women who had surgery for ovarian cancer (meaning removal of ovaries and uterus at minimum) are candidates for oral estrogen therapy, so there is no contraindication in my eyes. If the issue is primary a vaginal issue, though, it might be as useful to use vaginal estrogen rather than oral estrogen. I think the main point: we do not believe (and there are no data) it has a negative impact on survival.
I am interested in your research, Dr. Dizon. What are you working on currently that you're most excited about? And what research in the field of ovarian cancer do you think is the most promising?
I am also very interested in the survivorship experience after ovarian cancer, given the risks to women are so different from breast cancer. I think the needs of women with ovarian cancer may differ (a lot). So, I am doing some foundational work with Teresa Hagan (now at Pitt) and a postdoctoral fellow at MGH right now.
When will clinical trials admit patients by cancer genomics instead of by organ of origin? I have serous carcinoma but started in the uterus (though the surgeon thought it could have started in the fallopian tubes) so I am ineligible for "ovarian cancer" clinical trials.
Great question. There are such "umbrella" trials looking at different groups of patients based on genomic findings, like the MATCH trial or ASCO's TAPUR study. a subgroup of uterine serous carcinomas also overexpress HER2, and there is a trial specifically enrolling these patients using HER2-directed therapy.
At what point do you bring up clinical trials with your patients? And do you encourage them to look up clinical trials that are on-going at other institutions? Does your facility have any resources that can help patients find clinical trials that match their situation regardless of whether or not a trial is being conducted at your institution?
The clinicaltrials.gov website is currently being redesigned, so I am hoping it will also be user friendly, including the potential to match. I have no issues referring patietns to other centers for a trial, if it is not open at MGH.
This "Ask Me Anything" with Dr. Don Dizon is now closed. We have locked the thread, so that no more questions can be posted in the thread. However, we will keep the post on the community so that you can see all of the questions and answers.
Thank you Dr. Dizon for your time and energy answering these questions! Now you can give your typing fingers a rest. And thank you to all those who submitted questions! Still have questions? Consider starting a new post on HealthUnlocked to start a discussion among your peers.
If you would like a free copy of Dr. Dizon's book "100 Questions & Answers about Ovarian Cancer", please email your address to programs@sharecancersupport.org.
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