I know Rethink Breast Cancer had to work hard to get patients included in the medical conference, although the organizers never did formally recognize our attendance. Attendance by patient advocates is now commonplace at other cancer conferences (ASCO, San Antonio, Canadian Cancer Research Conference), so it is good that Canadian breast cancer medical community is catching up.
To be frank, as metastatic breast cancer advocate I found the agenda underwhelming (www.breastsymposium.ca/agenda). Although I recognize that the issue of de-escalating cancer treatment among node negative/early stage breast cancer patients is important to reduce short term side effects and long term morbidities from (possibly unnecessary) treatment for these patients, it is hard when your friends are dying (as are about 20% of breast cancer patients) but metastasis doesn’t even merit a full stand-alone session.
The other missing piece in the conference was any session on dealing with psychosocial issues and shared decision making with patients. Fortunately, Rethink did host a workshop on the Friday afternoon which covered some interesting discussion (full disclosure, I was the patient representative on the panel) and hopefully will evolve to something more and be part of the main agenda in the future.
Here are some of the elements from the Symposium of interest to metastatic breast cancer from my layperson’s perspective:
Highlights from the panel on “What’s needed next to meet the challenges of breast cancer care”
The medical oncologist Dr Ellen Warner highlighted disparities in outcomes for young (under 40) and older (over 70) patients. For the younger patients, because of the tremendous “PYLL” – potential years of life lost. She highlighted several databases that have been established to track young survivors (for example RUBY in Canada (www.womensresearch.ca/ruby-study/). For older patients, she argued that they could benefit from a geriatric assessment to identify health conditions to be addressed to make sure treatments are better tolerated. She also highlighted that cutbacks were increasing workloads just as cases were becoming more complex.
The researcher Dr John Bartlett from the Ontario Institute of Cancer Research (OICR), gave the most interesting presentation from my viewpoint. He identified 3 challenges –
He noted that because of these challenges – large randomized clinical trials are going to become less possible (Aside – the kind that the Canadian provincial drug funders rely on to make decisions).
Dr Margaret Trudeau from CADTH spoke on the drug funding process in Canada – the mechanics and also the recent history of decisions. She noted the addition of the CDIAC to the process and that this organization is looking at drug sequencing and also the possibility of expanding a drug’s use from the original indication. She reviewed some past drug approvals that were later shown not to have improvement in OS (overall survival) and thus felt better economic models are needed.
Information on how the process works can be found: https://cadth.ca/pcodr/how-pcodr-works
Vesna Zic-Côté and MJ Coteau (founder Rethink Breast Cancer) represented the patient voice on the panel. Ms Zic-Côté wondered if the breast cancer community was perhaps too good at emphasizing its successes, and for that reason metastatic patients and their need for new treatments were being ignored. She argued that this false messaging has implications for early breast cancer patients too, as they and their primary care doctors are, as a result, not as aware of recurrence risk and diagnosis of metastasis is delayed.
Ms Zic-Côté did an excellent job of speaking to the priorities for people living with metastatic breast cancer –
Figure: Shared Decision Making, Source: Rethink Breast Cancer
Figure: Emerging HER2+ treatments, Source: Dr Sunil Verma, Canadian Breast Cancer Symposium.
Figure: Vesna Zic Cote at the Canadian Breast Cancer Symposium, Source: Rethink Breast Cancer
Figure: Patient advocates, Source: Rethink Breast Cancer
The Canadian Breast Cancer Symposium – June 13-14, 2019 – One patient advocate’s perspective
by Heather Douglas
I had the honour to join this group of advocates at the Canadian Breast Cancer Symposium earlier this month in Toronto.
New Advances Session
The new drugs and studies were presented fast and furiously in this session – here are some of the standouts from my perspective.
Triple negative Breast Cancer
Dr David Cescon highlighted the following developments to watch in TNBC MBC:
HER2+ Breast Cancer
Dr Sunil Verma presented a full slide of drugs in the pipeline (see below). He also highlighted the emergence of antibody drug conjugates, such as DS-8201a which is now in phase 1 trials, and HER3+ as a new target.
New Advances Session (continued)
ER+ Breast Cancer
Dr Christine Brezden Masley highlighted a Korean study that found that endocrine therapy (palbociclib and an AI) was better than capecitabine as a first line treatment for MBC.
She noted that the US FDA has approved alpesib and the liquid biopsy for identifying patients with a pik3ca mutation. The Bylieve trial is investigating use of alpesib after CDK4/6 inhibitor treatment. She remarked that Canadian oncologists have now lost everolimus as a treatment after palbociclib.
Earlier in the day, Dr Andrea Eisen made a thorough presentation on management of patient with high and moderate risk germline mutations. As the cost of genetic tests fall, this test is becoming easier to order. She recommends the NCCN guidelines as the gold standard.
Shared Decision Making Workshop
Rethink Breast Cancer will be pulling together a discussion piece for the Shared Decision Making Workshop…stay tuned!
From the introduction, Dr Karen Gelmon and Dr Christine Simmons presented the physician perspective. Emma Reel from St Michael’s spoke on research they are undertaking to understand the barriers faced by South Asian immigrant breast cancer patients. And I spoke on my own evolution with self-advocacy as a patient as I tried to find appropriate clinical trials and gain access to new treatments.
Conclusion & Thank Yous
Thank you to the Canadian Breast Cancer Symposium for taking this first step in allowing patient advocates to attend. Thank you to Rethink Breast Cancer (and Shawna Ginsberg-Rich) for championing the inclusion of patients advocates. Thank you to the Canadian Breast Cancer Network's Jenn Gordon for being part of the working group that supported this inclusion.
The health system has many challenges and the solutions won’t be found if we all stick to our own silos. I’m looking forward to seeing how the next Symposiums build on this experience.