Tonight the #gyncsm community chatted about gynecologic cancer recurrences. Fifteen participants joined us for this important discussion which can be summed up in this TIL (Today I Learned): Recurrence is a tough topic, but avoiding the conversation can make things worse. Here's to having the hard conversations and mixing hope with being grounded.
You may find the transcript here and the analytics here. Scroll down for resources shared during the chat.
Some responses to our questions appear below:
T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence?- Recurrence can be a super uncomfortable topic, but I just remember hearing from far too many ovarian cancer patients that they were completely blind-sided when they recurred - and then learned about the >85% recurrence rate.
- This is so true. We want to remain optimistic and provide hope, while also giving patients the information they need to make the best decision for them.
- No this was not a discussion my provider had with me. It was only after I finished treatment that I was knowledgeable enough to find that information and available resources for myself
- Yes I did. I did brachytherapy for stage1Bgrade1 uterine cancer to lower my chances of recurrence. Gyno onc & care team should talk to patients about their chances of recurrence, the most likely location of recurrence, & symptoms of recurrence to look out 4
- I tend to let patients guide my timing - sometimes I’ll get asked at the time of diagnosis or during active treatment. Most often, this seems to come up as surveillance starts. Your point about the importance that pts not be blindsighted is so true.
- it was definitely understood esp at dx stage 3 but still not happy when it left and came back (and went away and came back, over and over like an unpleasant relative)
- Ovarian cancer has one of the highest recurrence rates of the gyn cancers. Over 85% - but that of course depends on staging, etc. for each individual person. @ocrahope has a breakdown on their page https://ocrahope.org/patients/about-ovarian-cancer/recurrence/
- Cervical cancer recurrence risk can range from 11-64%. Staging matters of course. Not sure about for uterine cancer.
- Vaginal and vulvar cancer being much rarer, statistics are tough and generalization harder.
- seems inevitable with HGS ovca but with multiple PARP therapies as maintenance (with limited tx duration) we keep pushing the line out for new methods and therapies
- This is why getting the best initial treatment of cancer is so important. Also why at every stage of the cancer continuum goals of care should be discussed.
- There have been some long term studies around diet and exercise in ovarian cancer. There are now also maintenance therapies to consider. There is not a whole lot under our control, but there are small things.
- I wish we understood more about the diet & exercise piece. Hopefully more work on this in the future. Things that are within our control can really feel empowering.
- I think that discussing and making a plan for continued monitoring and talking about what to watch for can help reduce anxiety. Also knowing what will happen - what are the steps - should a recurrence be suspected.
- Scanxiety is real. Have something that you treat yourself with on a scan day. Give yourself grace in the days surrounding scans. Name that feeling and then be kind to yourself. It is a normal reaction
- I have found exercise & wildlife/pollinator gardening have helped me deal with fear of recurrence
- Here's a nice resource from @CancerDotNet Coping With Fear of Recurrence https://www.cancer.net/survivorship/life-after-cancer/coping-with-fear-recurrence
- Unfortunately, I think it is something many of us don't think about or connect with immediately after first round treatment. We are literally still trying to catch our breaths but definitely something we should have a toolkit prepared for. "Break Glass..." mentality
- My recurrence happened 12 or so years later and by that time the dust had settled and I had to learn how to get back in the trenches again. It can be a process.
- Ask about the benefits of routine scanning. They may not be worth the risks to everyone.
- As @temkins mentioned earlier, goals of care may change - it can be time to review your values and goals knowing what you know about your first line experience and where you are in life now.
- Resource from @CancerDotNet - Dealing With Cancer that Comes Back https://www.cancer.net/survivorship/dealing-with-cancer-comes-back
- I am grateful for all the advancements that have happened in Gyn-Oc in general and hopeful for that that is taking place in EC. I have communities of friends in the right places that I am sure would help guide good decision making for my best outcomes and overall QOL
- The @theNCI has good info on their page for endometrial cancer recurrence #gyncsm https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq#_334
- How you responded to your initial treatment, may guide your options for treatment of a recurrence. There are also more and more tests available that can guide treatment decisions.
- Staying informed and empowered is our best defense. Cancer/ recurrence is unpredictable but leaning on the things and people we depend is not as fragile.
- Depending on 1st line therapy & additional patient & tumor factors, potential options are systemic treatments or targeted radiation. Even if RT was used previously, depending location & prior dose re-irradiation is possible. Talking to your doctor is key #gyncsm #knowledgeispower
- And get a second opinion. There may be more than one treatment option and finding the one that fits to your goals of care is worth it.
- For ovarian, @ClearityFnd has a Treatment Decision Support program https://www.clearityfoundation.org/treatmentdecisionsupport/; @theNCI has a Cancer Information Service https://www.cancer.gov/contact; @CancerCare has Resource Navigation https://www.cancercare.org/resourcenavigation
- @ASCO just updated the PARP guideline to reflect latest research on use of PARP as maintenance and in the recurrent setting. https://t.co/Z4NoDLCZ9e
- Anytime can be a great time to consider a clinical trial, but especially when experiencing a recurrence. It can be overwhelming, but there are great resources out there for those with interest in trials.
- Genetic and genomic testing has come a long way for many cancers. @PanCAN has an amazing tumor profiling program for pancreatic cancer. Patients should ask about what testing can be done
- Patients - esp #ovca and Endometrial should ask about genetic testing. Trials should be considered too. The @NCCN guidelines are helpful when looking at treatments for recurrence. And of course an in depth conversation about your options with your gyn onc.
- Clinical trials are always worth considering but especially at times of recurrence. And yes - in our current era, genomic & molecular testing is really important for treatment & counseling considerations. Ask your MD about this of they don’t bring it up first.
- there may have been updates to genetic testing options for inherited mutations (aka germline testing) depending on when someone was 1st tested. Check in w/ genetics provider to make sure your test is up2date
- @cancercare has oncology social workers and @stepsthrough is a program for ovarian cancer patients needing emotional support.
- Emotionally I think talking to another women with a recurrence helps - Support groups and orgs like @CancerHopeNet , @SHAREing can provide information and support.
Our next chat, Looking Back and Looking Forward, will take place on Wednesday, December 14 at 8pm ET. We hope to see you then.
Wishing all a very Happy Thanksgiving. We are thankful for our moderators, supporters, and all participants.
Dee and Christina
Co-Founders #gyncsm
RESOURCES
Patients perceptions of communication with their health care team during chemotherapy for their first recurrence of ovarian cancer https://pubmed.ncbi.nlm.nih.gov/20667778/
@ClearityFnd Treatment Decision Support program https://www.clearityfoundation.org/treatmentdecisionsupport/-
@CancerCare has Resource Navigation https://www.cancercare.org/resourcenavigation
@theNCI has a Cancer Information Service https://www.cancer.gov/contact
@theNCI has good info on their page for endometrial cancer recurrence https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq#_334
@ocrahope has a breakdown on their page https://ocrahope.org/patients/about-ovarian-cancer/recurrence/
@CancerDotNet Coping With Fear of Recurrence https://www.cancer.net/survivorship/life-after-cancer/coping-with-fear-recurrence
@CancerDotNet Dealing With Cancer that Comes Back https://www.cancer.net/survivorship/dealing-with-cancer-comes-back
@ASCO updated PARP guideline including maintenance and recurrence https://ascopubs.org/doi/full/10.1200/JCO.22.01934
Related - May 12, 2021 Risk of Recurrence, Second Cancers, and Other Diseases #gyncsm Chat http://gyncsm.blogspot.com/2021/05/may-12-2021-risk-of-recurrence-second.html
