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
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