The email that raised my hopes… and then let me down.
From the Sunday Self-Care Chronicles | 7/5/26
Hey friend.
Yesterday I opened an email from my former cancer center with so much hope in my heart. It was a feature on survivorship care plans offering a “road map” for life ahead once treatment is done.
Like, hello? Are you finally hearing us? Is the system catching up with the reality of life after cancer?
Most people I meet living in cancer survivorship – across a spectrum of diagnoses – all deal with ongoing physical, mental, and emotional challenges, but feel like they are left to figure out how to address them on their own. So a subject like this coming from a nationally recognized cancer center appeared to be a major win.
As I read through the full article though, I felt my shoulders sink and once again, felt let down and left behind.
When I read a headline like, “What follow-up care do I need after cancer treatment ends?”, here’s what comes to mind:
An actual care plan that offers ongoing support providing time and space for each individual to share evolving needs and receive relevant guidance
Context and education about common existing and potential secondary physical side effects like chemo-induced peripheral neuropathy, lymphedema risk and symptoms created by radiation and lymph node removal, pain and movement restriction from scar tissue, medication-related joint pain, and sexual dysfunction from surgery, treatment, and premature menopause
Professional recommendations for local integrative oncology practitioners such as oncology trained massage therapists and exercise specialists, Certified Lymphedema Therapists, physical therapists, acupuncturists, pelvic floor therapists, nutritionists, and mental health professionals
Guidance on self-care activities and practices that can be done at home in between appointments to manage issues alongside professional care teams increasing benefits and results, and increasing comfort and confidence in enjoying day-to-day activities
Resources for mental and emotional health to address lingering issues like anxiety, depression, confusion, identity and body image concerns, and changes to relationship with others that so often accompany a cancer experience
Opportunities for community and connection via professional and peer support across a variety of activities and interests to find your people and where you fit within the larger community, instead of having to fit into a pink ribbon mold
Here’s how this article describes a survivorship care plan:
“A Survivorship Care Plan provides details about your diagnosis and treatment — for example, the total amount of radiation and the specific chemotherapy drugs you received. That information will be very important when your medical care shifts from your oncology team back to your primary care provider.”
Instead of focusing on “survivorship” as the day-to-day life of the person living it, they chose to highlight the need for:
Documenting specific information about diagnosis and treatment and potential side effects so primary doctors can be on the lookout for treatment-related related problems like heart disease or chemo-induced leukemia
Genetic testing results if applicable
The names of each doctor on the cancer team
Recommendations for future tests and imaging and how often they should be done
A schedule for annual follow-ups
To be fair, this is important information and they did include a brief list near the bottom touching on a few of the things I mentioned above as part of “restoring wellness,” but as someone in my 9th year of survivorship who is way more concerned about how it feels to live in this changed body, it read as an afterthought and for me, continued to center the disease instead of the human affected by it.
I truly admire and respect the doctor who runs the survivorship program at this particular hospital. I think she does see the bigger picture and in the right environment perhaps things would be different. But as a patient of this institution for over seven years, I was never even offered the chance to see her.
And while some of the resources I laid out do exist here – CLTs, PTs, acupuncture, pelvic floor therapy, and support groups – it is too often on the patient to know and ask for what they need, and then have to beg to actually be seen.
I know that this is not solely an issue of this particular institution AND I’m sure there are cancer centers out there doing great work in survivorship care beyond the strictly medical. But systemically this is an ongoing gap in cancer care that I am so tired of being overlooked. (I talk about this more on my website)
I also know that when you heard those words, “you have cancer,” you probably only cared that your team knew what they were doing and would do everything they could so you could hopefully one day also hear “you are cancer free.” I get it, me too.
But at those early appointments, I’m betting that you didn’t know what the long-term effects would really be, and if offered the chance, you would wish for the same care and oversight now that you received then.
The truth is it’s not possible for one doctor, practice, hospital, or even a giant institution to be the best at everything. It’s why we need local and national organizations focused on everything from support to research to raising awareness. It's why we need people with the lived experience and professional expertise creating resources and bridges for others. And still, none of these can give you everything you need in one package.
But that’s why I do the work I do. To be a part of the bigger picture. To create something that fills in the gaps where I can.
This is what my entire business is about, from hands-on care, to virtual consultations, to online at-home resources, and starting this week (!), my comprehensive program, As You Are Now: A Breast Cancer Self-Care Program for Real Life.
I’d love to know what your experience has been with a survivorship care plan. Were you offered one? Was it what you hoped? What would you like to see in a survivorship care plan if you had a say in creating your own? Hit reply and share your thoughts with me.
Maybe together we can make a difference.
P.S. In no way am I criticizing the medical care I received during my diagnosis and treatment, nor any one individual within this center. I was lucky to have an amazing team and they achieved what we all hoped for back then – 9 years and counting NED. I just wish that amazing care extended beyond my cancer status to me as a whole human being.
P.P.S. If you are looking for a place to start in your own survivorship care, consider my free self-care starter kit, The Survivorship Starting Point.
P.P.P.S. If you would like to have a no-pressure conversation about my upcoming program to see what it’s all about, click here and I’ll send you a message.