One of the unique phenomenons of cancer patient care is the cancer patient support group. Not that other disease states don’t have these groups, but cancer patient support groups are generally very well attended. Patients connect with other patients and life long mentor/mentee and friend relationships develop at these groups.
Tonight I’m off to attend a local breast cancer patient support group. Working with the breast navigator at the hospital, I learned that patients wanted to hear from a BRCA positive patient to learn how she came to her decision to have genetic testing, how it has impacted her life and where she stands today.
I was able to find a patient advocate who tells me she finds that telling her story is a form of therapy for her. She is certain that the path she has been on: cancer diagnosis, finding out she is BRCA positive and surgery, is part of a bigger plan for her to help others going through the same situation. Her belief is if she can help just one woman every time she talks, she’s making a difference, and I would agree.
The discussion tonight is about connecting- sharing stories and hopefully helping someone who is too scared to ask questions, too overwhelmed by a diagnosis and too depressed, to make change in their life.
This patient advocate’s goal is not about selling more genetic testing. Pursuing or not pursuing genetic testing is a personal decision. There’s no right or wrong answer. The discussion tonight is about connecting- sharing stories and hopefully helping someone who is too scared to ask questions, too overwhelmed by a diagnosis and too depressed, to make change in their life. We’ll talk about telling others about your diagnosis, sexuality after mastectomy/hysterectomy and cultural stigmas associated with cancer and cancer related surgery.
Sometimes talking with the doctor is too scary. The real questions don’t come out. I promise you the real questions will come out tonight.
So I leave you with this thought: What are you doing for your community this week to make a difference?
- A Who? A Patient What? A Patient Advocate. (pugtato.com)
- Getting Creative with Breast Cancer Screening. (pugtato.com)
- One in four newly diagnosed cancer patients ‘lacking support from family and friends’ (metro.co.uk)
- Local woman helps start support group for those dealing with lymphedema (independentmail.com)