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

Recurrence - Reducing your Risk , Making Treatment Decisions

 

On Wednesday, November 9, 2022 at 8pm ET (7pm CT, 5pm PT) the #gyncsm community will chat about Recurrence. We will cover risk of recurrence, ways to reduce risk, how to deal with fear of recurrence, and deciding on treatment when a recurrence occurs. Please join us as we also share tips for coping with the emotional and physical aspects of recurrence.

Guiding our discussion will be the following Topic Questions:

T1: Was risk of recurrence something you spoke about with your healthcare team? What should doctors be sharing with patients about recurrence?

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?

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?

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?

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

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?

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

This Cancer.net article Dealing With Cancer that Comes Back https://www.cancer.net/survivorship/dealing-with-cancer-comes-back and this OCRA article on ovarian cancer https://ocrahope.org/patients/about-ovarian-cancer/recurrence/ provide helpful information.

We hope you can join us!




Dee

#gyncsm Co-founder

August 12, 2020 Endometrial Cancer Chat

This evening the #gyncsm community gathered to chat about Endometrial Cancer - Risk, Symptoms, Treatments. We also discussed endometrial cancer care among women of color and the current disparities. We were pleased to have Adrienne Moore, @AdrienneEcana,  survivor and patient advocate, share her experience with us. We had 27 participants for this informative chat. You may find our transcript here and analytics here.

Some sample responses to our topic questions appear below. Resources shared during the chat may be found within the sample responses and at the end of this post.

T1: What increases a woman's risk of developing #endometrialcancer? Age/Genetics/Other Factors? How common is endometrial cancer and how aware are women about it? 

• Endometrial Cancer is diagnosed 60,000 X per year in the US. Cure rate 85%. Risks: Obesity, late menopause, infertility, fam history of Lynch Syndrome. Treatment surgery+\-radiation and chemo. Genomic testing recommended.
• Obesity and older age are the typical risk factors for endometrial cancer. A small number of women have a genetic risk. At a population level declining rates of hysterectomy for benign gynecologic disease has also led to increasing endometrial cancer diagnoses.
• An estimated ~3% of endometrial cancer is hereditary -- primarily due to increased risks associated with #LynchSyndrome. There are several LS genes, each with different levels of risk to develop endometrial cancer 
• Lynch syndrome can also increase someone's lifetime risk for other cancers, like ovarian and colorectal cancer. If you have a family history of these cancers, talk to your health care team + a genetic counselor to better understand your risk+ prevention options

T2: How are cancers of the uterus diagnosed? What symptoms are women experiencing that lead to diagnosis?

• Symptoms are most commonly irregular vaginal bleeding.Diagnosis is through endometrial biopsy either in the office or the operating room.
• T2/A2 I experienced heavy bleeding for 3 weeks before a doctor would see me.
• Recognizing the symptoms of endometrial cancer https://www.youtube.com/watch?v=MalYxhuIH5c&feature=youtu.be via @YouTube #WomensHealth #gyncsm
• My main symptom was abnormal menstrual cycles. I went to several gynecologist because of it and sadly not one ever brought up endometrial cancer.
• @GYNCancer - Symptoms ” warning sign for uterine cancer, including endometrial cancer, is abnormal vaginal bleeding.” In older women, any bleeding, spotting, or brownish discharge after menopause may symptom #gyncsm
• @frandrescher experienced a Delay in diagnosis of endometrial cancer due to her young age and sense from the medical establishment that she was unlikely to have a cancer. Biopsy should be done on any women over 35 with irregular bleeding. #gyncsm
• T2: Women also run into weight bias at the doctor's office when reporting symptoms. The age thing, as mentioned, can be a diagnosis barrier for most of the gyn cancers or any cancer. Not just older women get cancer.
  

T3: What are the different types of #EndometrialCancer? Are they treated differently?

• There are multiple different types of endometrial cancer, most commonly endometrioid, also carcinosarcoma and papillary serous + clear cell subtypes as well as adenosarcoma. All are treated differently due to different genetic fingerprints and susceptibility to treatment. 
• T3: Terms and types and subtypes within cancer make my brain hurt. There are 2 main types of uterine cancer - endometrial (90% of uterine cancers) and sarcoma. Then for endometrial there are varieties. Most treated with surgery/radiation/chemo.
• within endometrial cancers often divided by low risk (type1) and high risk cell types (type2). High risk types like serous, clear cell, carcinosarcoma are often treated more aggressively due to presentation at higher stages or due to higher recurrence risks. 
• Subtyping of endometrial cancer is so behind other disease sites! We having even reached the ER/PR/HER2 categorizations that define breast cancers. Research is needed on the molecular categories - POLE, MMR, and p53
• Yes both everolimus and temsirolimus have activity in endometrial cancer. We might have been stuck in applying these drugs indiscriminately instead of to patients more likely (by molecular subtype) to respond. 

T4: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity?

• Generally, barriers to diagnosis and treatment which allow for advanced stage at diagnosis.
• There are disparities particular to WOC. Doctors are less likely to believe our symptom & often misdiagnose #gyncsm
• WOC are more likely not to be believed when reporting symptoms. Racism, African American Women, and Their Sexual and Reproductive Health: A Review of Historical and Contemporary Evidence and Implications for Health Equity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6167003/  
• Assessment of Prediagnostic Experiences of Black Women With Endometrial Cancer in the United States https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2766042
• In 2019 @ECANAwomen convened survivors and researchers to come together and talk about policies to address the issues of bias in research
• @KemiDoll @ECANAwomen and others are doing great research and advocacy in this area. https://newsroom.uw.edu/postscript/spotlighting-common-female-cancer-and-health-disparity
  
• We need to make endometrial cancer information easily accessible to our young ladies as well as all ladies especially in the gynecologist office. I would have handled my abnormal bleeding differently if I had known it was a symptom of the disease 
• from ASCO20 Uterine cancer histology and stage at presentation in black & white women: A cohort study of 488,000 Compared to white women black women are more likely to be dx with serous, clear cell,carcinosarcoma, leiomyosarcomas at adv stages
• T4: Black women more often develop high grade/aggressive types of endometrial cancer. Could be genetic, environmental factors? Also advanced stage at presentation plays a role. Need to educate about sxs, address insurance, systemic racism. Devoting my career to this!
• T4: public health researchers study system-level factors causing differences in health outcomes sometimes called "social determinants of health": includes factors that create barriers to accessing healthcare/health insurance, systematic racism in healthcare, etc

T5: What are the side effects of #endometrialcancer and its treatments that may impact a woman’s quality of life? What can be done to improve the lives of women diagnosed with endometrial cancer?

• We all experience the similar physical side effects but what about the emotional and psychological?
• link to a great video we made years back with ⁦@SGO_org⁩ ⁦via ⁦@ACS_Illinois⁩ grant on hearing pt voices and experiences about risk factors and healthy lifestyle change after endometrial cancer. https://www.youtube.com/watch?v=Qm-eUROxE58&feature=youtu.be
• T5/A5 we should implement #Cancer Rehab as part of treatment plan that includes post psychological therapies.
• Help with managing side effects are listed on this @CancerSupportHQ https://www.cancersupportcommunity.org/article/side-effects-management-endometrial-cancer #gyncsm
• Long term neuropathy and forced menopause are damaging to how you view yourself.
• T5: I think, unfortunately, that surgical menopause is still down-played and women are not really prepared well for it.

Please join us our next #gyncsm chat on Wednesday, September 9th at 9pmET as we discuss Rare Gyn Cancers during Gynecologic Cancer Awareness Month. 

Stay well and safe. 

Dee 

#gyncsm co-moderator

OTHER RESOURCES SHARED:

Recognizing the symptoms of endometrial cancer https://www.youtube.com/watch?v=MalYxhuIH5c&feature=youtu.be

Assessing endometrial cancer risk among US women: long-term trends using hysterectomy-adjusted analysis https://www.ajog.org/article/S0002-9378(19)30682-9/abstract

Losing Weight Linked to Lower Risk of Uterine Cancer https://www.cancer.net/blog/2017-02/losing-weight-linked-lower-risk-uterine-cancer

Managing the Side Effects of Endometrial Cancer https://www.cancersupportcommunity.org/article/side-effects-management-endometrial-cancer

Endometrial Cancer #gyncsm Chat August 12, 2020

 

Join the #gyncsm community on Wednesday, August 12th at 9pmET / 8pmCT as we discuss Endometrial Cancer - Risk, Symptoms, Treatments along with special guest Adrienne Moore @AdrienneEcana who is a survivor and patient advocate.

Topic Questions for Wednesday's chat:

T1: What increases a woman's risk of developing #endometrialcancer? Age/Genetics/Other Factors? How common is endometrial cancer and how aware are women about it? #gyncsm

T2: How are cancers of the uterus diagnosed? What symptoms are women experiencing that lead to diagnosis? #gyncsm

T3: What are the different types of #EndometrialCancer? Are they treated differently? #gyncsm  

T4: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity? #gyncsm

T5: What are the side effects of #endometrialcancer and its treatments that may impact a woman’s quality of life? What can be done to improve the lives of women diagnosed with endometrial cancer? #gyncsm

Here are some Endometrial Cancer resources and we hope to see you at the chat.

Uterine/Endometrial Cancer:

• NCCN Guidelines for Patients - Uterine 
• NCI Uterine, Endometrial - https://www.cancer.gov/types/uterine and https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq
• NCI Uterine, Sarcoma - https://www.cancer.gov/types/uterine and https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq
• Foundation for Women's Cancer (2017): Endometrial Cancer- Your Guide
• Peach Outreach
• Uterine Cancer Awareness Network
• ECANA: Endometrial Cancer Action Network for African-Americans 
• Foundation for Women's Cancer Uterine Cancer Survivors Course 2013 - Videos
  
• Rare Forms:
• Uterine Carcinosarcoma/MMMT http://gcsproject.org/carcinosarcoma-facts/
• Endometrial Stromal Sarcoma http://ess-sarcoma.com/
• Leiomyosarcoma: http://lmsdr.org/ and http://nlmsf.org/
• Sarcomas Overall: https://sarcomaalliance.org/ and https://www.curesarcoma.org/ 

Christina, #gyncsm co-founder

 

Vaccines in Cancer Care and Risk Reduction January 9, 2019

For our first chat of 2019, we had twenty-eight participants discussing Vaccines in Cancer Care and Risk Reduction. You may find the transcript here and additional analytics here.

Some responses to our questions may be found below.

T1: What vaccines are available before you develop cancer to reduce your risk? Are there different types? 

• T1 The #HPV vaccine is cancer prevention for six cancers-cervical, vaginal, vulvar, penile, & oropharyngeal. #gyncsm
• T1: Cancers that are caused by viruses can be vaccinated against. HPV vaccine protects against cervical and other HPV-related cancers. The HepB vaccine can help protect against liver cancer
• the #HPVvaccine has been available since 2006 -- initially it offered protection against HPV16 and HPV18, the types of HPV that causes 70% of #cervicalcancer #gyncsm
• the FDA approved Gardasil 9 in 2014 -- which protects against another 20% of the most dangerous subtypes of #HPV #gyncsm 

T2: What cancers can be caused by HPV? How does the HPV vaccine reduce the risk of HPV-related cancers?

• T2 Cervical, vaginal, vulvar, anal, penile, & oropharyngeal cancers are caused by HPV. Every year in the US, HPV causes 33,700 cancers in men and women
• #HPV can cause #cervicalcancer and some types of ear-nose-and-throat, vulvar, vaginal, penile, and anal cancer. The CDC recently release a report about trends in HPV-related cancers. #gyncsm cdc.gov/mmwr/volumes/6…
• T2 -- interestingly, in recent years oropharyngeal cancers are now the most common type of HPV-related cancer. #HPV #gyncsm
• T2 The HPV vaccine protects against an HPV infection-persistent infection can lead to cell abnormalities & cancer.
• T2: It takes a long time for a persistent HPV infection to cause cervical disease and pre-cancer. The vaccine helps keep the body from being infected after exposure. Approx 80% of people are exposed to HPV at some point in their life
• It's better to get vaccinated before exposure to #HPV - that way your body is already immune!
• A2 from @cochranecollab Among women aged 15 to 26 years, vaccines reduced the risk of cervical precancer associated with HPV16/18 from 341 to 157 per 10,000. HPV vaccination reduced also the risk for any precancer lesions from 559 to 391 per 10,000.

T3: What are the current U.S. recommendations for HPV vaccination? Who should get vaccinated, when and how many doses?

• T3 The HPV vaccine is recommended for all girls & boys who are 11 or 12 years old. The series can be started as young as 9 years. #gyncsm
• T3 -- currently the @CDCgov suggest offering vaccination for boys and girls starting at age 9, and recommends it starting at age 11-12.
• T3 -- however, in October 2018 the @US_FDA has approved the use of Gardasil 9 for men and women up to age 45. #hpvvaccine #hpv #gyncsm https://www.statnews.com/2018/10/06/fda-expands-hpv-vaccine-use-to-age-45/
• And Vaccines for Children (VFC) Program offers vaccines ( including HPV) at no cost for eligible children cdc.gov/vaccines/progr…
• Yes -- for individuals who start the vaccine series younger than age 15, two shots of the #hpvvaccine is recommended.
• The @HPVRoundtable has a bunch of great parent materials.
• You can also check out yesterday's tweet blast by @StopHPVCancer for some great HPV resource links 

T4: What are cancer treatment vaccines? How do they work? When are they used - after front-line?

• T4: There are cancer vaccines that can be created the patient's own tumor! They have been explored in #ovariancancer as a maintenance strategy after primary treatment #gyncsm
• Specific #HPVVaccines are being combined with #immunotherapy to treat #cervicalcancer and head and neck cancers @MDAndersonNews
• T4: "Cancer treatment vaccines boost the immune system's ability to recognize and destroy antigens. Often, cancer cells have certain molecules called cancer-specific antigens on their surface that healthy cells do not have." https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines
• T4: Some cancer vaccines are made from the person's tumor sample for them. Other cancer vaccines target specific cancer antigens and are given to people whose tumors have those antigens on the surface of the tumor cells.
• T4 this article talks of the steps producing the vaccine Provenge for prostate cancer and examples of types of cancer vaccines. #gyncsm historyofvaccines.org/content/articl…   

T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area?

• I found 15 clinical trials when I searched on clinicaltrial.gov for ovarian cancer vaccines https://clinicaltrials.gov/ct2/results?term=vaccine&cond=Ovarian+Cancer&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
• Results from one #ovariancancer trial last spring via @ocrahope ocrahope.org/2018/04/vaccin…
• Cancer Vaccines in Ovarian Cancer: How Can We Improve? gives overview of research being done in this area in 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251/
• T5 -- to me, it seems that the most progress with vaccines as a treatment strategy has been in #ovariancancer. There certainly is a lot of interest in this area given the innovation in #immunotherapy #gyncsm cancertherapyadvisor.com/gynecologic-ca

Additional resources shared during the chat may be found at the end of this post. 

Be sure to join us next month on February 13, 2019 at 9pm ET for our chat "Getting Into a Clinical Trial". 

You can also join us for a collaborative chat across all #cancer communities presented by #LCSM this Thurs Jan 10th at 8pm ET/5pm PT on "Immunotherapy: What Patients Need to Know". More here: https://lcsmchat.com/2019/01/06/lcsm-chat-2019-01-06-immunotherapy-what-patients-need-to-know/ 

And on January 16 at 9pm ET join the #CervivorChat (@IamCervivor) for support and discussion about HPV and cervical cancer. 

See you there!

Dee
Co-moderator #gyncsm Chat

RESOURCES: 

Trends in HPV 
https://www.cdc.gov/mmwr/volumes/67/wr/mm6733a2.htm

Hepatitis B Vaccination : What Everybody Should Know 
https://www.cdc.gov/vaccines/vpd/hepb/public/index.html 

Recap from our #gyncsm Feb 2017 chat on HPV and Cervical Cancer 
http://gyncsm.blogspot.com/2017/02/hpv-and-cervical-cancer-chat-2817.html

@theNCI site 
https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet 

HPV vaccine: A smart way to protect kids from cancer @jburzawa
https://www.mdanderson.org/publications/cancerwise/hpv-vaccine-a-smart-way-to-protect-kids-from-cancer.h00-158830434.html 

American Academy of Pediatrics - HPV 
https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/adolescent-sexual-health/Pages/HPV.aspx 

Vaccines for Children (VFC) Program 
https://www.cdc.gov/vaccines/programs/vfc/parents/qa-detailed.html 

NCI-designated Cancer Centers Urge HPV Vaccination for the Prevention of Cancer http://www.cinj.org/sites/cinj/files/documents/NCI_HPV_Consensus_Statement_012716.pdf 

Cancer.Net 
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

Phase 2 Trial on HPV Indications 
http://ir.inovio.com/news-and-media/news/press-release-details/2018/Inovio-Announces-Initiation-of-Phase-2-Trial-in-New-HPV-Indications/default.aspx

Cancer Vaccines in Ovarian Cancer: How Can We Improve? 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251

Nov 8, 2017 #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we put the spotlight on Cancers of the Uterus. We discussed risk factors, symptoms and treatments of endometrial / uterine cancers as well as uterine sarcomas. 

We were pleased to have 24 participants join us including the Peach Society an organization devoted to raising awareness of endometrial cancer. 

You may find a complete transcript here and more analytics here. 

The following are some sample responses to out topic questions. You may find additional resources shared with the community at the end of the post. 

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role? 

• Risk factors for uterine cancers from @cancerdotnet https://t.co/wptvJ7lIGE
• T1: uterine/endometrial cancer risks include: Age, obesity, reproductive history, hormone therapy, as well as genetics
• T1: #endometrialcancer is the malignancy most closely associated with obesity. Of course genetics #Lynch can play a role as well.
• About 3% of endometrial cancer is due to a hereditary cause, called Lynch syndrome. If you have a family history of endometrial and colon cancers,you may want to meet w/ a Genetic Counselor to learn more  
• T1: some of the genetic links are Lynch syndrome (up to 60% risk), Cowden syndrome (up to 30% risk), and a small risk with PJS
• All of these factors increase systemic estrogen which is implicated in the most common types of #endometrial cancer. 

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

• T2: Any vaginal bleeding after menopause is uterine cancer until proven otherwise.
• T2 Via Canadian Cancer Society Signs and symptoms http://www.cancer.ca/en/cancer-information/cancer-type/uterine/signs-and-symptoms/?region=on&utm_content=buffere910b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
• @OncLive: Dr. Haldorsen on the Role of Imaging in the Diagnosis of Endometrial Cancer  http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer
• My main symptom included abnormal bleeding.

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects? 

• @CancerDotNet website : surgery/radiation/ chemotherapy https://www.cancer.net/cancer-types/uterine-cancer/treatment-options
• T3 Most are treated surgically with up to 50% receiving radiationa as well. 10-20% receive chemotherapy.
• T3: We discussed radiation oncology during our July 2017 #gyncsm chat - recap and resource links: http://gyncsm.blogspot.com/2017/06/radiation-oncology-what-is-it-when-is.html
• Post treatment side effects are related to the type and intensity of treatments used
• vaginal brachytherapy is a kind of radiation treatment

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

• Sarcomas are more rare, and often more aggressive. They often start in the muscle tissue of the uterus
• T4: Uterine Carcinosarcoma (formerly called MMMT) - info: http://gcsproject.org/carcinosarcoma-facts/
• T4: Leiomyosarcoma is a rare type of uterine sarcoma.
• T4: Endometrial Stromal Sarcoma - Info: http://ess-sarcoma.com/
• T4 : Brittany Sullivan’s Story w/ Sarcoma https://connection.asco.org/magazine/society-member-news/conquering-sarcoma-clinical-research-doctor-and-her-patient-are-paving

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

• T5: For all the gynecologic cancers, @GYNCancer (The Foundation for Women's Cancer (FWC)) had great guides and resources.
• T5: Resource | Foundation for Women's Cancer (2017): Endometrial Cancer - Your Guide http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Endometrial-Cancer-Your-Guide-website.pdf
• For support some great organizations like @CancerSupportHQ and for one on one support @CancerHopeNet are two I would recommend.
• Short overview of uterine cancer via @gyncancer http://www.foundationforwomenscancer.org/category/blog/uterine-cancer/
• @Peach_Society: You can get more information at http://www.peachsociety.net/ 

Please join us next month on Wednesday, December 13, 2017 (9pm ET/ 8pm CT / 6PM PT) for a chat on  I've Survived - Dealing with Side Effects and Other Losses

Wish all the members of our community a very Happy Thanksgiving!

See you in December. 

Dee
Co-founder #gyncsm 

RESOURCES

@MayoGynecology video obesity and endometrial cancer https://t.co/rJcT0ryuRL

Peach Outreach symptom cards, visit: http://peachoutreach.com/symptomcards/

Imaging and endometrial cancer diagnosis http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer

Nov #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we will be putting the spotlight on Cancers of the Uterus or Cancers of the Womb as it is called in the United Kingdom. We will discuss risk factors, symptoms and treatments of endometrial / uterine cancers. We will also discuss uterine sarcomas and how they differ from other cancers in presentation and treatment.

Guiding our discussion will be the following Topic Questions:

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role?

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects?

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

You will find helpful information on this month's topic in a booklet produced by the NCI What You Need to Know About - Cancer of the Uterus. 

We look forward to you joining us on Wednesday, November 8, 2017 at 9pm ET (8pm CT, 6pm PT).

Dee
#gyncsm Co-founder


Related Chats:
Radiation Oncology - What is is? When is it used? 2017
You never heard of Primary Peritoneal Cancer and Gestational Trophoblastic Disease? 2017
Gyn Cancer Awareness Month and Spotlight: Uterine and Endometrial Cancers 2015
 

March Chat Genetic Counselors and Gynecologic Cancer Risk

"Genetics is an integral part of cancer prevention. Know your genetics. Get to know a GC."

-Mary Freivogel 

For this month's chat, we were joined by the National Society of Genetic Counselors (@GeneticCouns) Past President Joy Larsen Haidle (@JoyLarsenHaidle) and NSGC President-elect Mary Freivogel (@MaryFreivogel) to discuss Genetic Counselors and Understanding Gynecologic Cancer Risk. We had 45 participants and achieved over 1.7 million impressions.  Additional analytics may be found here. 

A small sample of the responses to each of our topic questions appear below. You may read the full transcript here.  (Please scroll down for a list of valuable resource shared during the chat. )

T1: What is genetic counseling and why it is recommended prior to genetic testing?

• @GeneticCouns help estimate #cancer risk, discuss test options & explain how test results might be used in your medical care 
• We (Genetic Counselors) help to make sure genetic testing is the right choice for you and your family! 
• Not everyone would benefit from a genetic test. Talk to a #geneticcounselor to learn if testing is useful for you.
• Genetic counselors help people understand & adapt to med,psych & familial implications of genetic contributions to disease… 

T2a: Who should consider genetic testing? How does it help those already diagnosed w/ a GYN cancer? Does it impact treatment plans?

• T2A @SGO_org recommends genetic testing: https://t.co/Q3rMU66Qey
• Cancer diagnosis before age 50 or strong family history of cancer often warrants genetic testing.

T2b: Have you had genetic testing? What influenced your decision? If yes, did you have a genetic counselor?

• T2 #Gyncsm: Family history of #ColonCancer, brother tested positive for #Lynchsyndrome. Having a child influenced decision, and yes! 
• T2 My gyn onc spoke to me about genetic testing. I then talked to a genetic counselor re: my "pedigree" and she recommended the test
• T2 yes had genetic testing. Breast & ovarian cancer in family. #brca mutation 3 generations 

T3: Which genetic mutations are known to increase risk for gyn cancers? Do these mutations also impact risks for other cancers?

• T3 At least 24 genes are associated with ovarian cancer risk. Several have uterine cancer risk.
• T3 A genetic counselor can help determine the best test based on your personal and family history. #gyncsm @GeneticCouns 
• Many more than BRCA1/2! Lynch syndrome is colon, uterine, ovarian, stomach cancer, etc... Talk to a GC if you are concerned! #gyncsm 
• T3 Many mutations associated with Gyn Cancers: BRCA 1/2, Lynch Syndrome, Cowdens' Syndrome. Li Fraumeni . Often other cancers too.
• T3: Many people, even PJS patients, don't know that Peutz-Jeghers Syndrome adds risk for gyn or breast cancer

T4a: How can people access genetic counseling? What prep work is needed? Are referrals required?

• Find a Genetic Counselor near you at https://t.co/JHZReh6ReE #gyncsm @GeneticCouns 
• Most large programs have a cancer genetics counselor within the program. Ask your doc for a referral. 
• My @GeneticCouns blog will help you prepare for a genetic counseling visit. https://t.co/murxf0ekQH
• Before a #geneticcounseling meeting, discuss #familyhealthhistory with relatives. Learn type of #cancers & age at diagnosis. 
• Knowing who in the family had what type of cancer diagnosed at what age is helpful for proving pts w/cancer risk assessment.

T4b: Does insurance cover genetic counseling? Are there protections against discrimination based on genetic test results?

• Most but not all insurance covers both the genetics consultation and the testing 
• GC for BRCA1/2 testing is often covered as preventive service as per the Affordable Care Act. Check your policy for details. 
• Talk to your GC/MD about testing options--if cost is a barrier, there may be financial assistance available to help! 
• Risk of genetic discrimination is very low. Often far outweighed by info gained from genetic testing. Talk to a GC!
•  Life insurance is a HUGE problem , not protected under #GINA. Seek coverage PRIOR to genetic counseling/testing. 

T5a: Let's talk about the term "risk". If mutations are found that increase my cancer risk, what does that really mean for me?

• Everyone has a chance of developing cancer. Having a mutation raises the chance above the general population.
• #Cancer risk is not the same with all genes. Some genes confer low, medium or high risk.
• An average woman has a 1.5% chance of developing ovarian cancer. BRCA1 mutation raises chance to 45%. Lynch 4-24%. 
• Some women will consider surgery to decrease their cancer #risk. Speak to a @GeneticCouns to discuss your cancer

T6: Where can those with a genetic mutation find the latest info and get help weighing options for preventative action or treatment?

• @GeneticCouns has resources. Talk to a genetic counselor to help gather current info tailored to you. https://t.co/6DC5QzpmDQ
• We recommend people see only CGC Certified Genetic Counselor
• Where can you find the latest info and get help w options for prevention or treatment? A genetics counselor!

T7: How and when to share test results with family can be tough. What are some tips?

• My blog on @PearlPoint has tips for you to share your #familyhealthhistory https://t.co/DR2P3XsZx8 https://t.co/QLOX0VlPiC
• we did a #family #bulletin email. For immediate family we had a get together https://t.co/obGa83KFTr 
• Find out what tests will help, and if there is any specialized treatment, before scaring yourself or others with yr Dx.
• Sharing Genetic Testing is covered with CGC'S Certified Genetic Counselor they have templates for letters & conversations 
• I encourage families to share information to help protect health. Sharing empowers relatives.

If you would like to continue this discussion, feel free to join us on Smart Patients at https://www.smartpatients.com/gyncsm.

Be sure to mark your calendar for our next chat on Wednesday, April 10  at 9pm ET as we discuss Re-envisioning Ovarian Cancer Survivorship. Our guests will be Dr. Don S. Dizon (@drdonsdizon) and Dr. Teresa Hagan ( @TLHagan). We hope to see you then.

Dee

#gyncsm co-moderator

RESOURCES:

Find a Genetic Counselor near you at https://t.co/JHZReh6ReE

@GeneticCouns blog will help you prepare for a genetic counseling visit. https://t.co/murxf0ekQH

Is Genetic Testing Necessary- http://www.bustle.com/articles/146564-is-cancer-genetic-testing-necessary-7-things-you-should-know-about-getting-a-screening

@BeBrightPink Collect Family History  https://t.co/S8JvCebcpE

SGO position statements on genetic testing https://www.sgo.org/newsroom/position-statements-2/genetic-testing-for-gynecologic-cancer/

Surgeon General's Family Health History Initiative https://t.co/0ynYRl339L

Genetic Discrimination information https://t.co/xJhGNF7VnZ 

GENETIC TESTING, PRIVACY AND DISCRIMINATION https://t.co/x2Z1aTACg1

https://t.co/o8hs49pDGn genetic discrimination laws and protections

OCS:Development of the Risk of Ovarian Cancer Algorithm and RoOCA Screening Trials http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572791/

Hereditary cancer risk resources: @FacingOurRisk @BeBrightPink @Sharsheret @Hc_chat @BRCAinfo @BRCAresponder 

@ShewithLynch @MyGeneCounsel @LguzzardiM 

Communicating genetic test results: https://t.co/waFU48JsXi

After receiving +test results https://t.co/ROLi0rlFbc via Cancer Communication Research University of South Florida 

Oct 9,2013 Genetics and Personalized Medicine Chat https://t.co/T0ZjaCI4Bg

Genetic Testing and Ovarian Cancer  #gyncsm Community: https://t.co/uMVhorzjFa 

Genetic Counseling - Understanding Genetics - NCBI Bookshelf  https://t.co/Zi3UwQpRoE

Genetic Counseling Infographic  https://t.co/SZKjfF1caj