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

May 12, 2021 Risk of Recurrence, Second Cancers, and Other Diseases #gyncsm Chat

The #gyncsm community discussed Risk of Recurrence, Second Cancers, and Other Diseases for those diagnosed with a gynecologic cancer on May 12, 2021. We had twenty-six participants and 1.330 Million impressions - see more analytics here and you may read the transcript here.

Some highlighted Tweets from the chat may be found below each question. You will also find resources listed at the bottom of this post.

T1: What is the risk of recurrence for the main types of gynecologic cancer? Which gyn cancers have the highest recurrence risk?

• According to @CancerCenter "An est. 35% of patients w/invasive #cervicalcancer develop persistent/recurrent disease following treatment. The recurrent cervical cancer rate is lower for those w/ early-stage disease. Most recurrences occur within 2 years of treatment."
• The recurrence rate for #ovariancancer is very, very high. It can be hard to talk about with patients - and some don't want to think about it - but it also surprises too many that didn't get an open discussion after initial treatment 
• Endometrial - recurrence rates for patients with early-stage disease range from 2–15% and reach as high as 50% in advanced stages or in patients with aggressive histologic condition. (70-100%) recurrences occur within 3 years after primary treatment from a 2011 study
• vulvar cancer - Most recurrence occurs 2 years after treatment in women with inguinal lymph node involvement (32.7%) versus those without (5.1%). #gyncsm
  
• Ovarian cancer has the highest recurrence rate overall -85% (occurring in 25% of patients with early-stage disease and >80% of patients with advanced disease.) 
• There are many variables to consider (tumor stage & subtype, initial treatment, if there were tx breaks). For instance, cervical cancer is more likely to not recur if chemoRT is completed within 8 wks of starting.

T2: What is known about reducing one's risk of recurrence? How are cancer survivors monitored for gyn cancer recurrence?

• Follow-up care is imperative for preventing recurrence of #cervicalcancer. That includes exams, imaging, and blood work. Exercise and diet may help along with smoking cessation.
• I have heard that exercise may be beneficial in lowering one’s risk of recurrence
• There are only so many things that one can control when trying to reduce risk. Some things we know - Find a way to be active that works for you. Stop smoking. Lots unknown. A long-term study in AZ was looking at eating, activity and more for ovarian cancer survivors.
• While we all want to be in the group that never recurs, I think it's important to let people know the possibility. Nothing stops the shock of actual recurrence, & living in fear is hard - to be sure - but since it's likely with #ovariancancer, facts are important.
• Survivorship plans are important for continued monitoring after initial diagnosis. The balance is listening to your body and getting things checked out without freaking out.
• I know I was told very clearly by my first gyn Onc that I had no chance of recurrence, but here I am 4x later. I just hope everyone knows the possibility honestly. #gyncsm
• T2 monitoring for recurrence: Regular exams; education about symptoms to report; routine imaging not always indicated but depends on individual plan; tumor markers if appropriate. Consuder for Surveillance plan - individual pros and cons/ patients preferences
• I think survivorship plans are very important its been 10 years since my diagnosis and hardly any of my physicians followed mine because I had endometrial cancer they didn't think it was important after the hysterectomy. If only they knew 
• Kind of back to preventing recurrence. But what treatment we get initially, if we have a gynonc (or not), & what type of surgery can all matter as well.

T3: Many cancer survivors report that fear of recurrence impacts their survivorship. What are some tips for dealing with the fear of recurrence?

• We have so many great nuggets of advice on our blog (search for recurrence). A few are "Know your existence," "Own your story," Set boundaries, ask for help, journal it out, and take care of your mental health. https://t.co/25m45zv2WD #cervivor
• walking my dog always keeps me chill & works for me…. We both enjoy it
• There are some good resources - videos, podcasts, literature - about dealing with the fear of cancer recurrence because so many experience it. Know you are not alone. #gyncsm one via @CancerDotNet https://t.co/aFzmrUlrrP
• Latino cancer survivors face a tough journey. Our leader, Dr. Amelie Ramirez of @UTHealthSA, is helping launch a 6-year @theNCI study to find new ways to help Latino cancer survivors heal, recover, and stop cancer from returning!
• I think the most important thing is to show those of us who LIVE with multiple recurrences and still make a positive impact and have a happy life! It’s tough, but I’m much better off than those frozen in fear! 
• Incredibly important to address! Any plans for education and surveillance we add as MD we should be recognizing how this creates anxiety! and really should be coupled with how to get resources on coping, normal expected anxiety...
• Here is the facebook page for Survivor Slimdown https://t.co/tVeEbxSI3N

T4: What are some of the secondary cancers that those with a gynecologic cancer should be concerned about? What is the role of genetics and family history? What about secondary cancers related to treatment?

•  We can still get cancers that others get. According to @AmericanCancer, #cervicalcancer survivors are at higher risk for: mouth/throat, larynx, anal, vulvar, vaginal, lung, bladder/ureter, stomach, colorectal, pancreas, and acute myeloid leukemia.
• As we learn more and more about genetics, we learn more about what caners are connected and run in families. Know your family history if you can. See if multi-gene testing is advised as more is known.
• From @EKing719 in women who have had Hpv-related gyn malignancies there is a risk of anal cancer . Check @FarrahFawcettFN https://t.co/DPVvvpaqzF and at https://t.co/bheTVoAKCu
• There have been conflicting study results but generally we don't think that radiotherapy increases your risk of rectal cancer for instance. In rare instances, you can develop sarcoma about 10 years after radiotherapy.
• for basics also making sure survivors keep up with screening depending on phase in cancer care and age re #breastcancerscreening #colorectalcancerscreening #lungcancerscreening // know family history// refer for genetic counseling!!
• those of us with genetic mutations have to deal with risk of getting yet another cancer and decisions on how to prevent that
• HNPCC or Lynch Syndrome While HNPCC poses the greatest risk of colorectal cancer, women with HNPCC have about a 12 percent lifetime risk of developing ovarian and a 40-60 percent chance of developing uterine cancer.” https://t.co/QbGQXoXRD5
• Ran across this while doing chat prep: Meta-analysis and retrospective pharmacovigilance study of MDS and AML in patients receiving PARP inhibitor treatment https://t.co/LXHXHi7T6K
• It can be heavy to talk about all the additional risks, but like someone said, knowledge can help one deal with the fear and not be blind-sideded if something does come up.
• Very important point! Important to know for patients who on your medical team can best help quarterback getting appropriate tests scheduled, ordered up to date etc- sometimes gyn onc or med onc or PCP or cancer genetics team . @FacingOurRisk - great resources here!

T5: Are there other physical and mental health conditions that being diagnosed with and treated for gynecologic cancers increase the risk of experiencing?

• many already have a list of conditions prior to cancer. This just adds to the pile. Can be hard to assess what is causing what.
• PTSD is often experienced in our community from internal radiation. It may take someone years to process through the emotional toll - as for physical, there are various side effects from lymphedema, infertility, osteoporosis, gastrointestinal issues, etc.
• For women who were younger who went into surgical menopause due to surgery, this can create many physical & psychological issues.
• Issues related to sexual function; chronic changes in urinary and GI function after surgery, chemo and or RT.; early referring to physical therapy, urogyn, GI nutrition.... need to ask and talk about even if no easy answers.
• In my own situation it has increased my anxiety and depression at times especially in regards to my infertility.
• Confounding this is that the rate of #ovariancancer is higher in those who have had #PTSD prior to diagnosis. And, we know from the #ACEs study, those of us with trauma in childhood have increased risk of many diseases, including cancer.
• one of my concerns are potential cardiac issues due to cancer treatment combined w surgical menopause.

T6: What impact does having had cancer have on risk for and severity of COVID-19 and other non-cancer related diseases?

• Most research shows that having cancer increases your risk of severe illness from COVID-19. Other factors include a weakened immune system, older age, and other medical conditions.
• you can find resources at @GYNCancer site https://t.co/fvRX6dpubK

We end our chats with Today I Learned (TIL) . Here is a TIL from tonight's chat. 

TIL: Hard conversations are... hard. But let's not avoid them. Cancer stories are not all "inspirational/positive" but they are all important and provide so much value. Thanks to all who share their cancer truths.

We look forward to you joining us at the next #gyncsm chat on Wednesday, June 9, at 8pmET (new time for 2021) when we’ll discuss “GYN Cancer Research News” from #SGOMtg and #ASCO21

Dee and Christina

#gyncsm Co-Founders

 

Resources 

@AmericanCancer - Can I Do Anything to Prevent Cancer Recurrence?

https://www.cancer.org/treatment/survivorship-during-and-after-treatment/understanding-recurrence/can-i-do-anything-to-prevent-cancer-recurrence.html

HealthDay - Obesity And Overweight Associated With Increased Risk Of Developing Several Types Of Cancers 

https://consumer.healthday.com/5-10-obesity-raises-odds-for-10-common-cancers-2652899715.html

@sloan_kettering MMSKCC - 6 Tips for Managing Fear of Recurrence

https://www.mskcc.org/news/six-tips-managing-fear-recurrence

Meta-analysis and retrospective pharmacovigilance study of MDS and AML in patients receiving PARP inhibitor treatment  

https://mds-hub.com/medical-information/meta-analysis-and-retrospective-pharmacovigilance-study-of-mds-and-aml-in-patients-receiving-parp-inhibitor-treatment#MDSsm

Ovarian Cancer Patients at Higher Risk for Mental Illness  

https://consumer.healthday.com/ovarian-cancer-patients-have-higher-risk-for-mental-illness-2651500318.html

@GYNCancer Foundation for Women's Cancer - Education Courses  https://www.foundationforwomenscancer.org/events-courses/upcoming-education-courses/

@GYNCancer - Covid resources

https://www.foundationforwomenscancer.org/patient-resources-for-covid-19/

Post-treatment surveillance and dignosis of recurrence in gynecologic malignancies - SGO recommendations  

https://www.ajog.org/article/S0002-9378(11)00317-6/fulltext

American Cancer Society - Second Cancers after Endometrial Cancer 

https://www.cancer.org/cancer/endometrial-cancer/after-treatment/second-cancers.html

 

@CancerDotNet - Heart Problems

https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/heart-problems

Risk of Recurrence, Second Cancers and other Diseases 5/12/21 Chat

 

This month on Wednesday, May 12, 2021 at 8pm ET, the #gyncsm community will discuss Risk of Recurrence, Second Cancers, and Other Diseases among those diagnosed with a gynecologic cancer. 

Recurrence can be a tough subject that sometimes isn't adequately addressed following initial diagnosis and treatment. Yet, depending on the stage at diagnosis, we know that recurrence is an issue survivors deal with frequently. We will discuss what is known about reducing the risk of recurrence, monitoring for recurrence, and addressing the impact of the fear of recurrence. The risk of second cancers, especially for those with a genetic risk, will also be discussed along with the risks of other health conditions that can come with treatment for gyn cancers. We will finish our chat discussing the impact of Covid19 infection and other illnesses among women with a gyn cancer, including mental health issues.

We will use the following Topic Questions (T:) to guide our discussion:

T1: What is the risk of recurrence for the main types of gynecologic cancer? Which gyn cancers have the highest recurrence risk?

T2: What is known about reducing one's risk of recurrence? How are cancer survivors monitored for gyn cancer recurrence?

T3: Many cancer survivors report that fear of recurrence impacts their survivorship. What are some tips for dealing with the fear of recurrence?

T4: What are some of the secondary cancers that those with a gynecologic cancer should be concerned about? What is the role of genetics and family history? What about secondary cancers related to treatment?

T5: Are there other physical and mental health conditions that being diagnosed with and treated for gynecologic cancers increase the risk of experiencing?

T6: What impact does having had cancer have on risk for and severity of COVID-19 and other non-cancer related diseases? 

We hope you can join us,

Dee and Christina

Jan 15, 2020 - Goals of Care Throughout the Cancer Experience

As we start a New Year, many people make resolutions or aspirations. We thought it the perfect time to chat about Goals of Care Throughout the Cancer Experience. We had 18 participants join us to discuss goals from initial diagnosis, through treatment and after treatment. While we will provide some sample tweets posted during the chat in response to our topic questions, you may find the complete transcript here and the analytics here. 

T1: At diagnosis, what are some of the goals for care? Patients - What were your main goals?

• A1: I think the main goals should be 1. Clear understanding of diagnosis. 2. Clear understanding of treatment plan. 3. A comfortable rapport with the care team where all concerns, questions, and side effects can be openly discussed now and later.
• In addition to learning everything I could - Of course my goal was a cure - for forever . But my short term goal was making to my niece’s wedding the following May.
• T1. I didn’t understand the difference between remission and cure so had some unrealistic expectations
• I planned to get cured of Stage 4 disease and get back to normal life!

T2: Patients - Is a specific discussion of "goals of care" something you had with your doctor? Did they help you define your goals? 

Providers - Is this a discussion that you have with your patients and, if so, how often?

• T2: My gyn doc who tested me pretty much referred me along to other providers. My breast surgeon and I specifically discussed goals, which I appreciated. But I think I should spend more time thinking and actually write some things down. For myself and clarity in appts
• A2: I started treatment during summer, so my oncologist asked me about my summer and vacation plans. I appreciated this! My main goal was being well enough for my brother’s birthday, a month and a half after my first surgery.
• T2: I was in such shock at diagnosis (was told a likely cyst) that it was cancer. That was post-op day with nerve complications. I wasn’t prepared for extent/length of surgery. It felt like I was put on a treatment treadmill I couldn’t slow down.
• T2: An actual written plan of care done together would be great. There’s a big learning curve regarding disease, treatment, maintenance & clinical trials. It’s overwhelming for a while.
• As a provider, I think this is critically important to discuss as early as possible! Incorporating shared decision making with a patient, her provider and the family can help set realistic (and hopeful) expectations.

T3: When considering a treatment or clinical trial do you have a discussion about the research results or guideline recommendations? Do you try to match these to your/the patient's specific goals/needs?

• A3: This is obviously a health care provider question, but I as a patient was sure to make sure my voice was heard for my treatment preferences. I also regularly ask about clinical trials and are happy to do them if is a good fit for me.
• Treatment preferences can be important to speak up about and be sure that the "standard of care" or whatever is being offered you fits with your goals/daily life and preferences
• I would encourage every patient to ask her provider at every treatment decision making time point if she would be eligible for a trial—often this is how we can offer exciting, new therapies (sometimes in addition to the standard of care)
• A3 Initial DX I researched the trial I was offered and also talked to my PCP about it. When I recurred I asked for all my options then I took a month to research what option I wanted to do. I was offered a clinical trial but chose surgery then chemo. 
• T3: #gyncsm I was interested in clinical trials, alternative/integrative approaches, things such as fasting during chemo & nutrition but those were not available (as would have been my plan). Made most of drug trials available & clinical team explained process beautifully.
• Many gyn cancers do have treatment guidelines available from @NCCN Patients can ask if their doctor is following the guidelines and have a discussion about why a variation for your case. So much is put on patients when diagnosed
• @ASCO has clinical practice guidelines too that can be reviewed 

T4: What are Progression Free Survival (PFS) and Overall Survival (OS)? How do these endpoints line up with individual treatment goals? with clinical trial goals?

• Clinical trials have end points - Progression free survival or overall survival. Some trial results have better PFS but may not offer any longer overall survival
• T4. Aaah! One of my fave topics! There is much confusion in the PARP community about OS vs PFS. Many patients want PARPs because they think they’ll live longer.
• T4: Here's the best brief overview of the concepts of progression free survival vs. overall survival: https://www.focr.org/clinical-trial-endpoints Any of our healthcare folks have a boiled down couple sentences? So much terminology hurdles in cancer.
• T4: From patient perspective, progression-free survival is jargon & focus on it rather than cure/survival alienating, academic or for benefit of battling drug companies. I’d always thought cure was goal of oncologists & research. Reality has been sobering/depressing.
• @theNCI does have a Cancer Terms widget/dictionary that can be helpful https://www.cancer.gov/publications/dictionaries/cancer-terms
• Yes. It’s not always clear what prolongs length vs. quality of life, what is done with intent to cure rather than delay recurrence, & benefits & risks of them if BRCA negative.
• T4 providers use endpoints like progression-free survival and overall survival to understand the impact of particular treatment on the cancer... but other endpoints like patient reported outcomes (PROs), time without symptoms, quality of life may be as (or more) valuable

T5: How do goals of care change over time? Are they reassessed upon recurrence? How can readjusting goals impact treatment decisions and also daily living?

• A5: I really think this comes down to having a good relationship with care team. A recent example: At my last appointment in December I requested my cancer follow ups to go to yearly instead of bi-yearly. I explained why and they allowed it!
• 5. I realized after end of frontline that I might recur and have to let go of my”cure” fantasy. When I did recur, my goal was to get on a PARP at end of 2d line treatment and have me a good long remission.
• T5: Adjusting goals is part of the process but seems bittersweet - freeing, maybe clarifying, but also tough. As mentioned, having that good relationship with your doctor where goals are part of discussions can help set clear expectations and ease readjustments...
• Side effects impacted my treatment on recurrence so my goals had to change. As we learn more about mutations that could change our goals and treatment too.
• A5 Right now my goal of care is to educate as many women as I can about EC and in the process heal from the scars it has left behind. I’m finding strength there and know now that You fear what you don’t understand

T6: What are some things to consider when setting patient goals for care and in communication between providers and patients about goals of care? What are your tips?

• Care team, be honest! That is what helped me map out some of my future after my diagnosis. They didn’t tell me “you take the thyroid out and you’re done!” A line often repeated by those who don’t understand #thyroidcancer
• It doesn’t hurt to seek outside help. There are lots of resources if you need them. Therapy, a pastor, support groups. Getting help is courageous.
• Being sure we have access to the best and latest information on treatment for our cancer , including clinical trials is crucial in helping set goals of care.
• @abrewi3010, in addition to advocating for goal discussions at every care interaction, suggests that patients share about themselves as a person and get to know their provider as a person. Even a couple minutes can lay foundation for working as team
• A6 Always consider a patient’s level of support. Emotional, Physical and Financial. It has a direct relationship with compliance.
• Great question. I think matching the care to the patient rather than the patient to the care. Being partners & collaborators & open to new ideas, possibilities & approaches.

A recent study involving survivor/advocate @Stigetta "Ovarian cancer survivors' acceptance of treatment side effects evolves as goals of care change over the cancer continuum" was shared https://www.gynecologiconcology-online.net/article/S0090-8258(17)30885-5/abstract

We ended our chat, as we always do, asking for participants to share what was learned during the chat in what we call the TIL - Today I Learned. Here was one response:

TIL that goals should be discussed more at every appointment. Both care goals (exercise, diet, sticking to medication routine) and patient’s goals (school, marriage, new job, birthdays.) Once again: Communication, communication, communication!

Please join us for our next chat on February 12, 2020 at 9pmET when we will be discussing Cancer Pre-hab.

Dee

#gyncsm Co-founder

Goals of Care Throughout the Cancer Experience

Christina and I hope you will join us one week later this month on Wednesday, January 15th at 9pm ET for our chat discussing Goals of Care Throughout the Cancer Experience. We will touch upon goals of care on initial diagnosis, as well as on recurrence. We will also chat about goals when you are involved in clinical trials and the value you place on drugs that provide Progression Free Survival (PFS) but not necessarily show benefits of Overall Survival (OS).

So start off the New Year by meeting, supporting and being supported by others who have been impacted by gynecologic cancer.

Our discussion will cover the following topic areas:

• Goals for care at diagnosis
• Discussion of goals with care team
• Matching goals to treatment plan
• Endpoints - Progression Free Survival (PFS) vs. Overall Survival (OS)
• Readjusting goals
• Tips on setting goals for care

Also during January, which is Cervical Cancer Awareness Month, please see the website of our supporter, Cervivor for specific information about cervical cancer .

See you on the 15th.

Dee
#gyncsm Co-founder

Re-envisioning Ovarian Cancer Survivorship -April 2016 Chat

Tonight our guests were Massachusetts General Hospital and Harvard Medical School's Dr Don S Dizon (@drdonsdizon) and Dr Teresa Hagan (@TLHagan) . We discussed various aspects of ovarian cancer survivorship with our 43 participants. More chat analytics may be found here.

Below are our topic questions with a few responses. For the complete transcripts please visit this Symplur page.

T1a: What does survivorship mean to you? What is it to be an ovarian cancer survivor?

• Survivorship in all cancers is defined as any time after diagnosis.
• Learning to live one's best thru treatment & beyond despite uncertainty, loss of control that ovca dx brings
• survivorship is defined by the individual. If they like the term
• Survivorship seems so straightforward, yet it's so subjective and personal
• Although "survivorship" is defined, everyone interprets differently

T1b: Do you use the term survivor? If not, what term do you prefer?

• My wife prefers the terms "Experienced cancer" She's an 8 year CML survivor still in treatment. She doesn't like "survivor"
• I use the term remission. After all I have researched it makes the most sense to me
• While in tx for 1st recurrence questioned if I really was "survivor," Decided I am as long as I am breathing in & breathing out
• I'm in search of JUST the RIGHT word to replace 'survivor', personally; I am a well person with a history of cancer.
• think that "survivor" has baggage for many because it has been linked with NED, so some folks w/mets feel left out of term.
• everyone should feel free to use whatever word fits best for them. Too much pressure to be positive, to fight & survive

* note: The October #gyncsm chat topic will be on the terms used by those diagnosed with cancer. 

T2: What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?

• I certainly hear from some of my clients that the mental health/emotional coping wasn't addressed as fully as they needed.
• Things happened very quickly first-line. No major complications. Lots of concerns AFTER tx ended. Thank goodness 4 support grp!
• I feel what is missing is more stories of women living with OC. When I was first diagnosed I was sure I would not survive
• Just because many are still alive doesn't mean they're doing well. #QualityOfLife issues are minimized.
• I think honesty is lacking in those up front days with regard to the spectrum of emotions: shock, grief, loss, fear, panic.
• Women seem to seek first to know they are not alone and also practical concerns that come with treatment.
• Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support
• palliative care needs to be integrated with the entire experience

T3: How was the topic of recurrence addressed with you? Did you find it helpful or not helpful at the time - and now looking back?

• Recurrence is such a hard topic, but I've read too many stories of women who felt slammed b/c it wasn't discussed at all
• It was addressed but I was told the likelihood was considerable. When I wanted to remove my power port I was asked why.
• so worried about trying to figure out how to avoid recurrence and survive, what we really need is help to focus on living
• Discussion about weight is an opportunity to impact risk of other disease and length of life 
• thinking of the experience as chronic is so important regardless of disease state

T4a: What are your needs and concerns now? (After recurrence or As you live past diagnosis and initial treatment of ovarian cancer)

• Now that third remission is 8+ years, distinguishing btn symptoms indicating another recurrence and normal aging process
• 7 years from recurrence Still worry. Then there is  Chemobrain and neuropathy
• Was far more afraid of recurrent ovca that I had, than new cancer that MIGHT show up 10 years down the road, fast approaching

T4b: What issues - physical, emotional or other - currently give you the most difficulty?

• Need clear guidelines 4 long-term remission after multiple recurrences follow-up-scans, CA-125. GynOnc & MedOnc opinions differ
• Leg pain from carb/taxol still present. Issues with my sleep. 6 months post chemo. Told leg pain was a chemo gift and would stay
• Knowing reporting ANY gyn symptom gets me a ride in a machine, concerned w/past rads exposure (25CTs 5PETs +rads for BreastCA)

T5: What actions have you taken in living past your ovarian cancer diagnosis and treatment? Were you given a Survivorship Care Plan?

• Serve ovarian cancer community as research advocate and provide peer support. I was not given ovarian cancer survivorship plan
• Refuse to let ovarian cancer define who I am. Take frequent breaks from being all teal to being just me
• Went back to running. Completed two 5ks in last two weeks. Working on my diet and trying to find ways to reduce stress
• Don't always have to be a survivor. Sometimes its good to just be you
• Lynch team at Dana Farber gave me a Lynch plan. No other plan given except come back every three months. I have to call and book

We always end our chats by asking participants to complete the phrase "Today I learned..." (TIL). Here are a few from today's chat.

TIL: Survivor is not necessarily the term of choice. Need to continue to work on the language around this for gyn cancer patients

TIL there is still room for growth in making sure that all #gyncsm patients feel that their mental health & QOL are supported.

TIL We still have work to do to improve gyn patient education on side effects emotional needs 

TIL dismissal of pt needs, fears and lack of transparency in Communication impedes pts attainment of quality of life

We appreciate the support and RT's by our followers especially OCRFA, NOCC and SGO.

Do you want to join in the conversation or continue to discuss this topic? Join us on Smart Patients at https://www.smartpatients.com/gyncsm

Our next chat topic will be "Getting Social with Your Health". Join us will special guest @teaminspire on May 11 at 9pm E.

See you then.

Dee
#gyncsm co-moderator

Link shared during chat
Living With Cancer: Coming to Terms by Susan Gubar
http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?_r=1