March 8, 2023 Open Mic and 100th Chat

What better day than International Women's Day to celebrate our 100th Chat. We had fifteen participants join us. You may find our transcript here and additional analytics here.

We began the chat by sharing our updated logo.  

The colors now reflect more gynecologic cancer awareness colors. 

We shared how #gyncsm chat sessions have been used in three different journal articles. You can view links to these as well as links to articles that reference cancer hashtag communities on our blog's  Publications page: http://gyncsm.blogspot.com .

Next we talked about our chat topics through the years. Check our Chat Topics page (http://gyncsm.blogspot.com/p/chat-topics.html) on our blog to see other topics. Here are three chats mentioned. 

• "Research Advocacy" with @RANAdvocate
• "Immunotherapy" with@CSHinrichsMD and patients @SurvivorSueWDC @mandmsportsmom who shared directly about being in a trial.
• "Reading Scientific Posters" with @KDRichardson924 and SASEP team

Next we discussed the OCRA Ovarian Cancer Screening and Symptom Awareness Consensus Statement . 

"#gyncsm re use of symptoms; important of course for early care advocating for work up but it is important re nuances also bc many pts coming blaming themselves for not knowing or coming in earlier when sometimes not be possible. I liked this summary,"

Two participants shared projects or campaigns they are working on. 

We are a nonprofit raising funds for #ovariancancer research, and promoting scientist/survivor collaboration in research. Sending 2 advocates to AACR next month to participate in SSP. #gyncsm

— Powell-Drescher Ovarian Cancer Research Foundation (@PowerOvarian) March 9, 2023

I'm starting a non-clinical gynecologic oncology patent navigator practice. I've been busy applying for grant funding. I will also handle financial matters. #gyncsm

— Codemo Writing Services (@roberta_codemo) March 9, 2023

We closed our chat in the usual way asking for TIL "Today I learned" and @gyncsm began by sharing:

From #gyncsm Chat #1:
TIL: This community is fantastic. I have high hopes for us - and glad to have found all of you. @drmarkham

TIL: A new way to connect and share with a community of people living with, advocating for and caring for GYN cancers! awesome! @eberrygynonc

— Christina Lizaso (@btrfly12) March 9, 2023

There is no chat in April but Save the date for our next #gyncsm chat on Wednesday, May 10th, at 8pmET to talk about “Urogynecology and Pelvic Health”. 

Dee

Open Mic and 100th Chat March 8, 2023

 

Christina and I are happy to invite you to #gyncsm's Open Mic and 100th Chat on Wednesday March 8. 2023 at 8pm ET. It seems like only yesterday when together with three gynecologic oncologists, Drs Dizon, Markham, and Boulay, we held our first chat in September 2013. 

To celebrate our 100th chat, we updated our logo.  

We've added three intersecting ovals (teal, peach, purple) to represent the intersection of those impacted by different gyn cancers into one community.

We thank each and every guest host and health care provider and researcher for providing important information to countless patients, survivors, advocates and caregivers through these chats. Our topic list is lengthy, but we focused our chats on the gyn cancers and their risks, advocacy, caregiving, quality of life, clinical trials, research results, news from medical conferences, genetics and personalize medicine, emotional and physical support, survivorship issues, recurrence, and how to work best with your doctor. Have a look at them all here.

On Wednesday we will open the floor to questions from this broad community in this 8th edition of an "Open Mic" chat. 

What's on your mind? 

• Do you want to discuss OCRA's  recent consensus statement on fallopian tube removal to reduce risk of ovarian cancer? Or how to participate in OCRA's program free genetic testing program? 
• Do you want to share your experience in a clinical trial? Or how to discuss clinical trials with your doctor?
• Do you want to discuss the latest research in treating endometrial cancer?
• Do you want to know what you can do to improve equity of treatment?  
• Do you want to discuss the  use of mirvetuximab soravtansine-gynx, Elahere,for women with recurrent ovarian cancer? 
• Do you want to know if others are experiencing QOL issues like yours? 
• Do you want to discuss low-dose aspiring use for ovarian cancer risk reduction? 
• If you are a health care provider, do you want to know where your patients get information? 
• Do you want to talk about getting involved in advocacy? 

 

What better day to join with other patients, survivors and health care providers that on International Women's Day. We hope to see you on Wednesday. 

Dee and Christina

#gyncsm co-foudners

January 11, 2023 - Survivorship Chat

The #gyncsm community started the new year off with a chat on Survivorship. We welcomed patients, survivors, caregivers, and physicians to our one hour discussion. You may find analytics here. Resources (there were so many good ones tonight) are located at the bottom of the post. 

Here is some examples of the responses we received to our questions. Be sure to check out the transcript here for all the responses. 

T1: What comes to mind when you hear the term "survivorship"?

• I look at survivorship as a way of rewriting your life. Kind of a rebirth. I've changed a lot from the person I was before cancer and I can't thank @IamCervivor for helping me find that voice. I may still be dealing with the aftermath of cancer but I am living my way.  https://t.co/49DzZPjgla
• when I hear the term survivorship what comes to my mind is your life being a cancer patient after frontline treatment ends.
• When I hear "suvivorship" I think about the day-to-day of dealing with a cancer-related diagnosis. The stuff that is more guided by peer input than healthcare professional input. But it is really all encompassing I guess
• I can’t relate to the word survivorship. At least not yet. Don’t feel like I survived anything. Feel like I’m in a fight that will last the rest of my life. 
  
• as a caregiver, I always thought of survivorship as what happened "after the bell." I've come to learn that those 12 letters hold entire worlds of joy and pain and everything in between

T2: Do you seek out survivorship stories? What do you find helpful about patient stories?

• When I was first diagnosed I reached out to @cancerhopenet to speak to a volunteer who was the same age and had the same diagnosis and was out 5 years from chemo. She gave me hope! So yes, I find survivorship stories helpful .
• Absolutely 100%. In the work we do at @IamCervivor it is imperative we elevate the stories of patients and survivors because not everyone experiences the same cancer journey but someone may identify with a part of your story that can help them. 
• when I was first diagnosed I couldn't read enough survivor stories. I would try to compare each story to my own & try to find similarities which would indicate a potential positive outcome for me.
• I believe there's incredible power in patient stories - for the new survivors, who can find inspiration and a roadmap through their treatments - and for the survivors telling the stories. 

T3: Which effects of survivorship - i.e. physical, emotional, social and financial - have impacted your life most?

• The emotional is number 1. I still deal with a bit of PTSD. The physical with post-treatment side effects that will never go away. The social to really focus on what is important in my relationships and friendships going forward. And it was financial for a long time.
• I would add a new category - mental. I’m a much more negative person than I was before. My mental health definitely suffered.
• I would say the physical effects of survivorship have been the toughest. Between surgical menopause & chemo after effects, my body has changed a lot.
• so many women dx before menopause so the effects after surgery are instant and tough to handle along with a cancer dx and treatment effects 

T4: What are some of the types of support patients need at diagnosis, during treatment, and after? What tools or support have helped you with your survivorship?

• Some organizations with tools I hear good things about are @afreshchapter @livestrong @stepsthrough The amount of resources can be overwhelming but glad there are a variety. Disease-specific org's can help with recommendations 
• I would have loved to have a community like @IamCervivor sooner than I did (after treatment ended). I would have loved financial support and more information on what questions to ask at appointments, etc
• Ways to handle the added financial stress seems to be lacking. Resources and options to cover costs are a godsend.
• at dx patients should be made aware if their hospital has a patient to patient peer program. Speaking w a survivor who went through it & can provide hope was instrumental for me & the reason I am a P2P volunteer. @MSKCancerCenter + @SHAREing

T5: Do you experience a fear of recurrence? If so, what do you find helpful when dealing with that feeling?

• I've had one metastatic recurrence and I've feared it every day since. It's gotten a little better over the years but while I'm waiting to see if Friday's scan provides me with year number 7 of NED status...I have a ton of anxiety.
• I've found breathing exercises, meditation, reading, photography, and in all honesty - burying myself in work to help in reducing the anxiety.
• the fear of recurrence has never gone away but has lessened. I try to keep in mind the women I know who have recurred & are still here many years later. A lot of mental gymnastics
• I would describe it as less a fear of it coming back and more a fear that it never left. Despite being NED I still can’t convince myself it’s gone- especially since I still feel so sick and exhausted all the time (possibly due to PARP drugs.) 

T6: Do you ever feel survivors' guilt? How have you dealt with that?

• Definitely. I have often wondered why I am still here and others aren't. I've questioned the "what ifs". I understand things are out of my control but I can help share my story and others to prevent others from going through this. 
• When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge 
• I do feel survivor's guilt. I honor the friends I've lost by continuing all of my advocacy work. I keep them all in my heart & I always preach to others that aging is a gift.
• Every day. I lost my mentor/good friend three years ago. I'm very involved as an advocate and have lost many people I know. I keep in mind what my mentor told me: I was dx early so that I could be a voice for others, and I took that to heart. I can't turn my back and walk away after dealing with this disease.
• When I worked at a cancer org, I had a drawer with scraps, notes, memories, memorial programs. I carry those stories with me still.

T7: What has been your experience with follow-up and long-term care? After initial treatment, did you receive a survivorship plan? If so, how has it helped you during your survivorship?

• I was dx 15+ years ago, before plans were shared with patients. I am seen by an Adv Practice nurse as part of a survivorship program now. We talk & decide together what my follow-up should be based on guidelines. I can always call if I feel something not right.
• I feel that many hospitals lack adequate survivorship programs & survivors need to be better supported. I have had to find my own way & advocate for myself. We should be assigned "survivorship doulas"!
• After eight years, I recently graduated to every 6 month follow-ups. My gyn oncologist is very good at staying on top of things and I can contact him whenever I have a concern.Once you're his patient, you're his patient for life.
• This is so true —> we have much work to do to better provide #survivorship support for patients & their families.

We closed this chat as we do every one, by asking participants to share their TIL - "Today I Learned". 

TIL: Survivorship much like cancer diagnosis, treatment, etc. looks different for everyone - and there is NO shame in that! We have some really great communities blending together with resources too.

We will not be chatting in February but do join us on Wednesday, March 8, 2023 at 8pm ET for our 100th Chat which will be an Open Mic night. 

Please continue to tweet information of importance to our community using the #gyncsm hashtag. 

See you in March. 

Dee and Christina

RESOURCES

Survivor Stories:
 @ocrahope  - https://ocrahope.org/tag/survivor-stories/  

@NOCC_National - https://ovarian.org/category/stories-of-inspiration/

Tools/ Support  - Twitter Handles 

@cancerhopenet

@afreshchapter

@livestrong 

@stepsthrough

@hystersisters 

@SHAREing

@cancerdotnet 

@NOCC_National (https://nocc.ovarian.org/financial-assistance-program)

@TriageCancer  

https://www.cancerfac.org/  

Survivorship Plans / Toolkit 

@SGO_org / @GYNCancer https://www.sgo.org/resources/survivorship-toolkit/

Survivorship - January 11, 2023

The #gyncsm community will start out 2023 with a chat about survivorship. We hope you can join us at 8pm ET (7pm CT, 5pm PT) on Wednesday, January 11, 2023.

The NCI definition of survivorship states:

In cancer, survivorship focuses on the health and well-being of a person with cancer from the time of diagnosis until the end of life. This includes the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. The survivorship experience also includes issues related to follow-up care (including regular health and wellness checkups), late effects of treatment, cancer recurrence, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.

We will examine the needs and support at different stages of survivorship - initial diagnosis, during treatment, as well as care after treatment ends. 

T1: What comes to mind when you hear the term "survivorship"?

T2: Do you seek out survivorship stories? What do you find helpful about patient stories?

T3: Which effects of survivorship - i.e. physical, emotional, social and financial - have impacted your life most?

T4: What are some of the types of support patients need at diagnosis, during treatment, and after? What tools or support have helped you with your survivorship?

T5: Do you experience a fear of recurrence? If so, what do you find helpful when dealing with that feeling?

T6: Do you ever feel survivors' guilt? How have you dealt with that?

T7: What has been your experience with follow-up and long-term care? After initial treatment, did you receive a survivorship plan? If so, how has it helped you during your survivorship?

Join us as we share organizations and resources to help you have the best survivorship possible.

See you on Wednesday, January 11th, at 8pm ET.

Dee and Christina

December 14, 2022 - Looking Back, Looking Forward

We ended the year with a chat titled Looking Back, Looking Forward. During the chat we reflected on what we did in 2022 and looked ahead to 2023. Sample responses may be found below. 

You may find a transcript here and analytics here. 

T1: What are some things you did in 2022 that brought you satisfaction? What steps have improved your overall quality of life?

• Got back to doing some family traveling this year and really cherish this time as both of my kids are now teens.
• I got organized and I asked for help. That has helped tremendously! I've also made time for meditation and breathing exercises.
• Family, fur-kids, friends and lake time. Reminding myself to keep my self-care a priority.
• In 2022 we made a lot of progress with our free awareness poster program for Gynecologist we are now expanding to include Retirement Centers.
• I am learning that I must take care of me so that I'm healthy to take care of others.

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2023?

• Our CCAM theme this year was "Take Care of You in 2022." Self-care is a crucial part of our work in the cancer advocacy space.
•  I wish I could have done more fundraising we are deciding to stay located in Dallas and next year we plan on getting connected so we are able to get the funding we need to take care of our patients, survivors, and caregivers
• I wish I had taken more long walks with my dog in the local parks. And spent more time painting. Which makes me think I need to prioritize my time differently
• Giving myself permission to use my anxiety medication (before I’m already in an attack). Plans are for better sleep habits. 

T3: What are some of the "wins" for gynecologic cancer advocacy/treatment/care over the past year or so? Where are we seeing progress?

•  It has been great to see all the global collaboration around #cervicalcancer and #ovariancancer. Also was pleased to see @ocrahope expand a bit beyond the ovary in its focus. And always love how @IamCervivor embraces all areas of gyn cancer and women's health.
• Patients are advocating for better treatment. More research is being conducted. Talking about gynecological cancer. We still have more work to do.
• I know we're beyond thankful to have been a part of the launch of the National Breast and Cervical Cancer Roundtables! Super grateful @tamikafelder was able to represent @IamCervivor and our community with the opening remarks for @FLOTUS
• I am seeing more focus on ovary preservation whenever possible and why it should be done. Hopefully that will become standard of care. Glad I was able to keep mine.

T4: What are some areas within the gynecologic cancer space that you want to see more progress made over the next year? Any projects/action steps you already have planned?

• I'd LOVE to see survivors continue to share their stories, for GYN cancer communities to join together to make a bigger impact, and for the patient voice to be included more.
• It's been my wish for 17 years now but I sure would love to see a detection test for ovarian cancer . I wonder if work on ctDNA might hold the key?
• I'd love to see continued collaboration across gyn cancer and cancer groups. I'd also love to see more programs on basic anatomy and health as a starting point entry to gyn cancer awareness.
• Providers to actively LISTEN to the patient and their concerns. Too many are so preoccupied that they don’t/won’t listen. Also, applies to insurance companies.

The next two questions related to the #gyncsm community and our mission. 

#gyncsm mission: Provide a place where - Those with a gynecologic cancer-related diagnosis and their caregivers can find reliable information and support and - Health care providers can gain insight into the patient experience, discovering what topics/issues are most important to gynecologic cancer patients. 

T5: What are some of the things you appreciate about the #gyncsm community being on Twitter? What do you find helpful about #gyncsm?

• I like that on Twitter there are so many varied groups that can pop in&out of discussions as there is interest. I also really appreciate the healthcare provider participation. Which on some patient community websites, those folks are not there - sometimes by design.
• I appreciate the researchers and gyn oncs who share the results of their studies or when they and other patient advocates tweet live from the oncology meetings they attend.
• I enjoy being able to connect with other survivors, physicians, nonprofits, etc. We cannot do this work alone and we are most certainly stronger together.
• Providers sharing knowledge. The sharing of support for gynecology oncology.

T6: What are your plans for staying or leaving Twitter? Which other platforms have you tried or are you considering? Any thoughts on the future of #gyncsm and what you'd like to see? 

• Not sure I'm ready to start over anywhere. Heard about Hive and Post as things to maybe try. I belong to a patient community @smart_patients but it isn't the same as an open forum - different goals - and of course it isn't a place for awareness/education.
• Taking it day by day with . Currently on FB, IG and TT.
• I love that we are all able to connect and help each other be great advocates!

Our current plan is to hold 6 chats in 2023, meeting every other 2nd Wednesday at 8pmET. Save the date for our next chat Wed, Jan 11, 2023 at 8pmET when we’ll discuss “Survivorship”. Hope to see you then.

Interested in what might come next for the #gyncsm community in a post-Twitter situation? Keep in touch by joining our email list: https://docs.google.com/forms/d/e/1FAIpQLSd6wIqLCEihexj93JcUPuqO5eZDH3j0VuLyniIEG2pZV657FQ/viewform

Dee and Christina  

Looking Back, Looking Forward Chat - December 14, 2022

We invite you to join the #gyncsm community as we close out our 2022 chat series. On December 14th our topic will be Looking Back, Looking Forward - a chat topic we have not covered since December 2015. We will use our one-hour time slot to reflect back on 2022 and share our goals heading into 2023 - for ourselves, for gyn cancer advocacy, and for the #gyncsm community. We continue to monitor and assess our Twitter-based Community under the new ownership of Twitter and will include that in our discussion. Here's our six Topic questions:

T1: What are some things you did in 2022 that brought you satisfaction? What steps have improved your overall quality of life?
T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2023?

T3: What are some of the "wins" for gynecologic cancer advocacy/treatment/care over the past year or so? Where are we seeing progress?
T4: What are some areas within the gynecologic cancer space that you want to see more progress made over the next year? Any projects/action steps you already have planned?

T5: What are some of the things you appreciate about the #gyncsm community being on Twitter? What do you find helpful about #gyncsm?
T6: What are your plans for staying or leaving Twitter? Which other platforms have you tried or are you considering? Any thoughts on the future of #gyncsm and what you'd like to see?

We hope you can join us at 8pm ET on Wednesday, December 14th and share your thoughts. 

Interested in what might come next for #GYNCSM post-Twitter? Join the #gyncsm mailing list: HERE

Dee and Christina 

#gyncsm Co-founders

November 9, 2022 Recurrence - Reducing your Risk, Making Treatment Decisions

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)

T2: How likely is a recurrence with each of the main GYN cancer types? Has overall risk changed in recent years with the availability of maintenance therapy options or other advances?

• 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.

T3: Are there things that have been found to reduce the risk of recurrence? What things have you tried or are still doing to reduce your risk?

• 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. 

T4: Fear of recurrence is common. What are some coping mechanisms to reduce the impact of that fear on daily living? What have you found helpful?

• 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.

T5: How does treatment for recurrence differ from first-line treatment? What needs to be thought about differently than the first treatment plan?

• 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
   

T6: Are there resources to help make treatment decisions when a recurrence occurs? Should trials be considered? Should patients ask about genetic and genomic testing?

• 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

T7: What are some tips and resources to help patients and families cope with the emotional and physical impact of a recurrence?

• @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