Stacey Tinianov: Interjecting the advocacy perspective into the final symposium session “From the Trenches” at SABCS24

Stacey Tinianov, Co-founder of Advocates for Collaborative Education (ACE), shared on LinkedIn:

“Yesterday, I spent 90 minutes on the SABCS24 stage, interjecting the advocacy perspective into the final symposium session ‘From the Trenches’.

The session is designed to help distill the meeting highlights and focus participants on what they may change in their clinical practices on Monday morning and includes sections for medical oncology, surgical oncology, and radiation oncology.

Grateful to San Antonio Breast Cancer Symposium organizers and the American Association for Cancer Research for the inclusion. And oh so thankful for the support of my panelists. But I am most grateful for the advocates pictured below, and countless other patients and advocates with whom I have learned alongside and from.

I don’t have stage fright but I was nervous that I would not do justice to the perspectives of my advocate community in such a tight timeline so, it meant more than I can express to get an ‘I’m proud of you’ from so many of my advocate friends and heroes.

On the mainstage, I shared my words but those words were simply amplifying their voices on the following themes:

Words Matter

For instance, using the phrase ‘de-escalation of therapy’ can be unsettling to individuals who may feel they are getting ‘less than’ in the way of treatment. In reality, we are, and should be, ‘right-sizing’ their care.

Manageable and Tolerable is Relative

As an example, treatments are typically deemed to have manageable side effect profiles when those side effects are limited to Grade 1 and Grade 2. However, I challenge anyone to share how manageable and tolerable adding ‘3-4 additional loose, watery stools above baseline’ would be in their lives.

People with Cancer are as Heterogenous as the Disease Itself

We can discuss progression free survival (PFS) and overall survival (OS) but we must consider that decision making should always take risk, benefit, and personal impact into consideration. This includes physical side effects, financial toxicity, mental health impact, long-term effects, etc.

Everyone Just Wants to be Seen, Heard, and Held

Everyone. Not just individuals with a diagnosis or history of cancer. When you provide this for people, you can have constructive discourse, on so many levels, including in the clinic. When clinicians ask ‘what’s important to you?’ and listen to the answers, truly person-centered shared decision making can begin.

While the concepts above were shared in a breast cancer symposium, the sentiments are broadly applicable across all cancers, and likely every disease interaction.

I’m heading home from the week feeling that while we have come so far, we have so, so, so much to do. Many of the individuals in the room last year, are no longer on planet this year and this is never lost on me.

Now, as always, I am overwhelmed with gratitude to the researchers, clinicians, industry partners, and others who continually push to improve equitable access to quality cancer care. Thank you.”

More posts featuring Stacey Tinianov.

Stacey Tinianov is a board-certified patient advocate. As a co-founder of Advocates for Collaborative Education (ACE), Tinianov advises companies like Ciitizen and CareLoop, ensuring patient-centricity in their initiatives.

She serves on boards such as Bay Area Young Survivors (BAYS) and Camp Kesem SCU, advocating for cancer survivors’ needs. Tinianov’s influence also reaches policy and research spheres, contributing to organizations like the National Coalition for Cancer Survivorship (NCCS) and UCSF’s Breast Science Advocacy Core (BSAC).