Wednesday, January 15, 2020

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: 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
  • 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

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.

#gyncsm Co-founder

Friday, January 10, 2020

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.

#gyncsm Co-founder

Wednesday, December 11, 2019

Dec. 11, 2019 Survey Results and Open Mic

What a nice way to end 2019, by sharing the results of our Community Survey followed by an Open Mic night. We were happy to have 17 participants. It was great to see some regulars and to welcome some new folks to the evening's chat. You may find additional analytics here. A complete transcript may be found on Symplur.

We shared five graphics showing some of the results of our survey.

Who responded to our 2019 survey?

How did participants interact with the community?

What was learned and used by survey participants?

 What were the most important topics covered in #gyncsm chats? 

How can #gyncsm do better? 

We then moved on to the Open Mic portion of the hour. We opened the floor for comments or questions from the community. Comments and responses may be found below. 

1. The difficulties women with ovarian cancer have getting into phase 3 clinical trials and recruiting minorities to clinical trials. 
  • Clinical trials are tough as each one is so different and finding even the right contact person at each site is a challenge. @power4patients and others have good resource collections but still daunting
  • You can find all the clinical trials open in the country on  You can search under ovarian cancer. Or often times your local health networks will have them on their website.
  • Is it based on location, I wonder, or other factors about age, stage, and treatment? I wonder if that will change when a PARBs more readily available earlier no matter what BRCA status?
  • Women get frustrated by exclusion criteria too. Very disheartening for those who feel they’ve run out of options.
  • Helping Cancer Patients Navigate #ClinicalTrials #gyncsm #ovariancancer Via ⁦@biospace

2. It still seems that minority pops are overlooked in clinical trials, yet the data from these groups is crucial. Minority participation still stand at around 4%, well below the national averages. Why is this? 
  • That's a great question. My cancer center just opened a Health Disparities center to try to understand and increase numbers of minorities who participate. As for why - I'll start with Language barriers, travel, child care,
  • Black and Hispanic women are definitely under-accrued to clinical trials in ovarian cancer but this disparity is less pronounced in endometrial and cervical cancer
  • That question has been explored quite a bit. There are a number of findings. The first is language barriers make it difficult to explain studies to nonEnglish speaking people. The second are cultural barriers formed by mistrust of The medical establishment.
  • Those are some real issues, especially the issue of trust. But that places a lot of the ownership on the populations, not the industry. I'd include the fact that clinical trial orgs often use the old pipelines for trials & are not inclusive and they need to be.
  • Enrollment of Racial Minorities in Clinical Trials: Old Problem Assumes New Urgency in the Age of Immunotherapy | American Society of Clinical Oncology Educational Book
3. Surgery for Recurrence Ovarian Cancer Does Not Improve Survival
  • I’m still assuming that additional surgery is good for women who don’t respond well to chemo..?
  • That's disheartening. I'll have to read it later. I wonder if that conclusion applies to all cell types and grades of ovca.
4. Research and ovarian cancer advocate @Stigetta was involved in this paper that just came out: A Priorities Assessment Tool to Support Shared Decision Making, Maximize Appointment Time, and Increase Patient Satisfaction in Women With Ovarian Cancer

5. Did you see this Nature article: Both fallopian tube & ovarian surface epithelium are cells-of-origin for HGSOC

Please join us in January - one week later than usual - on Wednesday Jan 15, 2020 for our chat about “Goals of Care throughout the Cancer Experience” . 

Happy Holidays everyone! 

#gyncsm Co-founder 

Resource links shared, but not included above:

Coping with the holidays while in treatment for cancer -

Summaries of all #gyncsm chats -

The generalizability of NCI-sponsored clinical trials accrual among women with gynecologic malignancies -

Why Are Uterine Cancer Rates Rising So Drastically in Black Women? -

Friday, December 6, 2019

#gyncsm Survey results and Gyn Cancer Open Mic Chat - Dec 11,2019

We will end our chat year with a discussion of the results of the #gyncsm Community Survey we conducted in September and also allow our community to ask questions.

Some of the information we will provide about the survey is:
  • Who responded to our survey?
  • How did respondents interact in our community?
  • What was learned and how was what was learned use?
  • What were the most important chat topics we have discussed over the past few years?
  • How can we have a better community? 
For the remainder of the chat hour we will hand the "mic" over to you to bring up topics of interest. This is our 4th "open mic" chat and we always enjoy the chance to bounce around where the topics take us. You may feel free to ask us about future #gyncsm chat topics (we are working on our 2020 schedule), about something you heard in the news that you found interesting or are curious about, about what questions others ask their nurse or doctor, or anything related to this community and the cancers that impact it. If we don't have an answer, we will happily research it for you and get back to you. We hope sharing your experiences and questions may help others in their experience.

We hope you can join us on Wednesday, December 11, 2019 at 9pm ET

See you then,
Co-Founder #gyncsm 

Wednesday, November 13, 2019

November 13, 2019 Stress and Cancer Chat

The #gyncsm Community chat topic on November 13, 2019 was Stress and Cancer. We were pleased to see many familiar faces and to welcome some newcomers to our community. We had 26 participants with 1.8 million impressions. For complete analytics see this Symplur page and for the transcript please visit this page.

We began the chat by asking What is stress? 
stress is a physical, mental, or emotional factor that causes bodily or mental tension. Stresses can be external (from the environment, psychological, or social situations) or internal (illness, or from a medical procedure).” 

“Stress is the body's reaction to any change that requires an adjustment or response. The body reacts to these changes with physical, mental, and emotional responses.”

Below are a few topic question responses. Please refer to the transcript for all the responses. 

T1: What are some of the internal and external factors which can lead to stress/tension when dealing with a cancer-related diagnosis? How can stress differ at diagnosis, during treatment, and following initial treatment?

  • T1: Stress morphs throughout the cancer continuum. The stress of "not-knowing" at the beginning, the stress of the schedule and treatment during therapy, the stress about potential recurrence after the completion of therapy #gyncsm
  • T1 being newly dx'd can itself be stressful internally. letting stress continue has been known to increase cancer-related mortality
  • T1 External stress can be visits from family or holiday prep
  • Internal things include our thoughts and emotions we are experiencing and how these influence our behaviors and coping. (T1) #gyncsm
  • T1 This is an area where #SDOH comes into play. The stresses associated with social determinants of health can contribute to mortality rates for minorities dx'd w/ gynCA #gyncsm
  • T1:Financial concerns were an enormous stressor for me. What if I couldn’t work? How would I support myself. #gyncsm

T2: What are some changes doctors and other healthcare providers could make to reduce stress along various points in the patient experience?

  • T2 Social workers or navigators trained to help with practical things helps.
  • T2 Physicians and other clinicians can take care of themselves so their stresses aren't projected onto patients. #gyncsm
  • T2: Establish with the patient ahead of time whether they prefer to receive a cancer diagnosis in person. #gyncsm
  • A2: Social workers trained for specific cancers. I met an #AYACancer social worker at @MDAndersonNews at the AYA clinic and it was life changing! She really understood my issues and had solutions. #GYNCSM
  • T2 try & keep to the schedule & not have patients waiting endlessly in waiting room to be seen #gyncsm

T3: What steps can patients take to reduce stress and to address the physical, mental and emotional responses to stress? What do you find to be helpful?

  • T3 I exercise - blow off steam #gyncsm
  • A3: Be honest! With everyone! Care team, family, friends, coworkers, spiritual advisors, neighbors, it doesn’t matter. Share what you need and don’t feel bad about it!! Need space? Cool. Need food and Netflix? Invite me! #GYNCSM
  • Early access to #PalliativeCare can improve symptom control and cancer-related outcomes. Our group helps deal with stress and anxiety as well! #gyncsm
  • T3 therapy. Ask for help finding a therapist who is skilled at working with folks with a life-altering illness and uncertainty. #gyncsm
  • No one likes this answer - but EXERCISE Improved quality of life during treatment and in survivorship. 30 minutes, 5 days a week @AmericanCancer #gyncsm
  • T3 seek out support from others LIKE THIS GROUP. There is strength and growth in connection. #gyncsm
  • T3 Patients should work with their doctor and/or therapist to develop coping mechanisms. Yoga could be a possibility or simple #mindfulness exercises or recreation #gyncsm
  • I also tell patients to decide on a goal - have something to look forward to. A trip, a birthday, an anniversary... #gyncsm.
  • T3: Address #stress in a whole-person approach: adequate nutrition, rest, daily movement, emotional support. One of the things I found most helpful was a good therapist & support group. That, and giving myself permission to not be okay. #gyncsm

T4: Some studies show use of a stress-lowering heart drug (beta-blocker) by women w/ #ovariancancer is associated w/ a longer OS (overall survival).
(2015) Is this drug and/or other stress reduction protocols now included in treatment plans?

  • This study #gyncsm is fascinating. But whether an improvement in outcomes from a beta-blocker is generalizable for all patients with ovarian cancer is yet unknown.
  • T4 I just quicking review NCCN guidelines for Ovarian CA and survivorship and at this point beta blockers are not included in recs. #gyncsm
  • .@DrRamondetta went on to combine this with chemotherapy in a #clinicaltrial - it was feasible! The study was too small to determine if the combination impacted survival outcomes #gyncsm

T5: What are some signs that stress is becoming "distress" and/or impactful enough on daily activities that additional help is needed? What is known about PTSD in patients?
T6: A recent study showed stress is associated w/ #ovariancancer risk What is the difference between associations, correlations and causes of cancer?
T7: Overall, what does research show about the relationship between the nervous system and the spread of cancer?
  • There is this recent article on nerves and the spread of cancer #gyncsm An interesting article.
  • T7 I think the research is fairly basic in this space. There needs to be more robust study of cancer survivors. #clinicaltrials #gyncsm
  • T7 part 2 study of survivors in terms of risk for recurrence, coping, anxiety, depression, other stress sources, supports etc. #gyncsm
  • Measuring stress is tricky. What's stressful for one person may not be so bad for another. Definitely we need more tools and research #gyncsm.
  • T7 Central Nervous System Metastases in Patients With Cervical Carcinoma. - PubMed - NCBI #gyncsm
You may find resources mentioned during the chat at the end of this page. 

Please join us for our Open Mic and Discussion of #gyncsm Survey Results chat on Wednesday December 11, 2019 at 9pmET.

Wishing our community members in the US a very Happy Thanksgiving!

See you in December!

#gyncsm Co-founder


Stress in Cervical Cancer Patients Associated with a Higher Risk of Cancer-specific Mortality

PTSD Linked to increased risk of ovarian cancer 

Cancer related PTSD

Correlation, Causation and Association What Does It All Mean

Central Nervous System Metastasis in Patients with Cervical Cancer Carcinoma