What Exactly IS “Breast Cancer Self-Care”? (part 2)
If you’ve experienced a breast cancer diagnosis, you know that it changes everything - who you see in the mirror, what you believe about your body, and how you experience day to day life.
That’s why self-care is a critical part of recovery and survivorship. It’s how we take our power back.
But you’ve got to know exactly what that means as it relates to your body and life, as you are now, on this side of a breast cancer diagnosis.
In part one of this two part series: “What Exactly IS Breast Cancer Self-Care?” I covered some of the basics like:
my personal definition of this term
why breast cancer self-care is important to you (assuming you’ve had a breast cancer diagnosis)
the background of the self-care concept in general
how to get started by identifying where you are at in your experience
the three basic areas of self-care that relate to your breast cancer experience
navigating professional vs. solo self-care
Haven’t read that post yet? You can read this one first but I would take time to check the other out as well because there is a lot of high level goodness that I’m skipping here.
So what’s on today’s agenda? I’m doing a deep dive and breaking down everything you need to know about breast cancer self-care, including how to make it effective and relevant regardless of where you are on your breast cancer timeline.
Breast Cancer Self-Care by Timeline
While certain needs are fundamental throughout every breast cancer experience (and honestly just in life in general) - think sleep, hydration, proper nutrition, etc… - other things are going to be more relevant and better prioritized during different stages of your breast cancer timeline*.
*(I’m not a big fan of the word journey when it comes to breast cancer but you can use whatever language you like such as journey, path, experience, survivorship, etc…).
So let’s take a look at what might make up breast cancer self-care based on where you are on your (insert your favorite word here).
Example #1: Newly or recently diagnosed
This is arguably the most confusing and overwhelming time of a breast cancer experience.
Less than 10% of people who receive a breast cancer diagnosis have a known genetic mutation or higher than average risk, which means that around 90% of people who are diagnosed are blindsided.
Having just had the rug pulled out from under you, you now have to navigate huge, life-altering information and decisions like choosing doctors and hospitals, surgical and treatment options, all while processing the mental and emotional weight of your diagnosis.
Plus, cancer doesn’t happen just to you, but your diagnosis also affects those within your family, friend, and career circles. Even with an amazing support system, this is a lot to deal with.
I personally find that focusing your self-care on mental and emotional support is most beneficial during this time. Here are some self-care ideas that are both relevant and helpful:
Identify resources that can help you feel informed about your specific diagnosis as you start to make decisions around what comes next. Try not to go down the internet rabbit hole of Google (or even Facebook groups TBH - for me they almost did more harm than good) but instead look for the dedicated helpers and experts:
Breastcancer.org is a great place to start or the American Cancer Society for general info
Young Survival Coalition is awesome if you are diagnosed at a younger age
Your local breast cancer non-profit - in Buffalo we have Breast Cancer Network of WNY
The resource center or patient navigator at your cancer center or oncologist office
A vetted cancer coach, consultant, or peer mentor
Gather your emotional support system through family, friends, church, etc… Don’t be afraid to keep some people close to you while setting boundaries around others.
Delegate “ambassadors” who can speak on your behalf and share information so you don’t always have to be the one everyone reaches out to for updates.
Secure mental health support via counseling, support groups, or pastoral care.
Don’t be afraid to consider things you may not have been open to in the past like therapy or medication if needed.
Focus on practical things that will help you prepare for any surgeries or treatments so that you can feel a bit more confident as they begin.
As a BRCA1+ positive woman who knew I was at high risk, I was still surprised by how hard my actual diagnosis hit me.
When I asked my doctor for a Rx for Xanex to help deal with anxiety she didn’t deny me but she also offered the idea of something more long term (and less addictive). I was reluctant at first but ultimately decided to try a low dose of Lexapro to manage anxiety and panic attacks, knowing it was going to be a long road ahead of me, and that I didn’t have to stay on it forever.
It turns out it might have been the single best decision I have ever made regarding my mental health.
After a lifetime of generalized anxiety I was able to navigate breast cancer (and the 6+ years since!) on more stable footing and it has been an absolute game changer for me.
Obviously things like exercise, nutrition, sleep, and other forms of physical self-care are perfectly applicable at the time of diagnosis also, but don’t put pressure on yourself to overhaul your lifestyle right now.
Looking for resources or peer support? You're in luck because I offer virtual “Ask Amy” Consultations where you can share, ask questions, and get what you need NOW from the intersection of personal and professional experience in breast cancer land.
Example #2: Active treatment & surgeries
This is what I call being “in the shit”. It’s uniquely hard in its own way and remarkably easy in others.
You likely have a pretty clear picture of what is going to happen and when and where you need to be, if not right in the beginning, at least as things unfold.
Mentally and emotionally you put your head down and work the system.
Surgery - decided on, scheduled, done, recovering (and hopefully not dealing with any unexpected complications or changes along the way)
Chemotherapy - you’re told how many weeks, what to expect, and you deal with the side effects as they come.
Radiation - tattooed, show up M-F for X weeks, rub the lotion in, rinse and repeat.
Bloodwork, scans, follow ups. Your doctors are on top of it all.
Reconstruction, if needed, implant swaps, fat grafting. Etc…
All the while you are putting one foot in front of the other and tunnel visioned on the light at the end - the day you are done.
Now I’m not trying to be trite as I know none of this is easy, and the list above might seem rather simplified, but much self-care that happens during this phase is reactionary depending on what your surgery and treatment protocols are and how they affect you.
If you (hopefully) have your mental and emotional support in place, this is a good time to focus on the physical aspects that are within your control. This might include:
Making room in your schedule for extra rest and sleep as you are able since steroids can affect your ability to sleep along with increasing anxiety
Getting help with cooking and finding foods that you can tolerate (or even enjoy) when your taste buds are out of whack or you are dealing with nausea and constipation/diarrhea
Finding ways to move your body whether it’s a walk around the house, around the block, or your whole neighborhood.
Using gentle skin and body care products and protecting your fingernails, toenails, and scalp
Working with integrative oncology techniques like acupuncture, massage, and reiki to help manage stress and physical side effects.
Did you know that oncology massage has been proven to reduce pain, nausea, anxiety, chemo-induced peripheral neuropathy and to improve sleep quality and body image?!
One of the greatest self-care tips I can offer during this time is to be patient with yourself. You will get through this and if at this moment you are simply “surviving” then let that be enough.
Example #3: Early survivorship (1-3 years out)
You’ve made it! The heavy lifting is over and you are ready to embrace the new normal you were promised. Or so most people think.
I’m sorry to say that for many of us this stage of a breast cancer experience is way more difficult than we anticipate. Why?
Through the media and even our own medical systems we’ve been fed the story that breast cancer is a “blip” on the radar of our lives. That we will live through several months to a year+ of hell so that we can come out on the other side “good to go” and cancer-free.
For most of us that’s bullshit.
If we are lucky enough to be declared cancer-free and for treatment to come to an end, everything we’ve been through doesn’t just disappear.
The truth is we are left with visible and unseen scars, pain, fear, and unexpected yet lasting changes in ways that no one prepared us for.
And this is typically when we are set free to figure things out on our own. Our follow ups go from daily, weekly, or monthly to every 3 months, every 6 months, or even once a year.
We feel set adrift and unsupported.
THIS is when self-care becomes critical.
In my experience, both personally and professionally, it is during this time when developing solid self-care habits and routines can make the biggest difference in our physical recovery, our mental stability, and our emotional healing.
Ideas that can be game changers from a self-care point of view:
Ask for physical therapy and/or pelvic floor therapies (you’d be surprised how rarely it’s offered but how often it’s needed).
Work with a trained oncology massage therapist for scar tissue release after surgeries and radiation therapy to reduce pain and improve range of motion.
Use tools for remembering to take daily meds like tamoxifen or an aromatase inhibitor like these awesome Took Take labels.
Investigate 3D tattoos or try wearing prosthetic nipples to reaffirm self-perception and body image (of course only if this feels supportive to you - I’ve embraced my Barbie boobs sans nipples…for now)
Finding and investing in bras that fit and make you feel good - my absolute favorite is the “Jamie Lee” from AnaOno!
Adapt your wardrobe to your body without shame or guilt. This might mean buying tops that flatter a changed chest if you are now flat or unilateral, or buying pants that fit and feel good if you gained weight during treatment. You can find amazing accounts on Instagram that offer niched fashion styling for our community!
Get familiar with your body, as you are now, so that you can work towards body neutrality, acceptance, or love, as you are able.
Seek out ways to modify favorite hobbies or exercise programs if needed, so that they are still accessible to you without putting yourself at risk of injury or slowing your recovery, like Yoga for Cancer classes.
Become well-educated in any side or after effects and changes to your body, like risk of lymphedema, and what you can do to manage or mitigate those challenges.
This part of the experience is where things become particularly unique to you and your needs and you are likely going to need a combination of mental, emotional, and physical self-care practices activities, and routines to begin working your way toward that elusive but oft-promised “new normal”.
For more on finding your own new normal check out this previous article I wrote.
Example #4: Long-term survivorship (3-5+ years out and beyond…)
Hopefully you are one the many lucky folks who get to begin talking about their breast cancer experience in the past tense.
Some of the practices and activities you develop during those early years may continue to benefit you as time goes on, such as managing lymphedema risk or dealing with sexual health changes, but often you will begin to settle into a version of life that is not entirely familiar but also not entirely foreign.
Your self-care routines may resemble something much closer to what you always used to do or they might be completely reimagined based on your perspective and how you approach your life in survivorship.
When you are still in the midst of a primary breast cancer diagnosis you can’t ever imagine the day where you might forget all that you’ve been through, even for a moment.
Remarkably, nearly 7 years out despite being entrenched in breast cancer land professionally and personally, I can tell you that it does sometimes happen.
Not for very long and not frequently, but in these last few years I have had occasion where I rearranged and cleaned out my garage, or shoveled the walk at my office lifting heaping piles of wet snow and throwing them over my shoulder, and in the moment wasn’t thinking to myself - “Wait is this safe? Can you do this? Remember you've had breast cancer!”
Usually those thoughts come shortly after the activity, when I can feel the pull along the underside of my implants where the alloderm is stitched in to my chest to create an internal bra, or if my right arm starts to ache and I remember that oh yeah I’m at risk for lymphedema on that side and maybe I overdid it this time.
I say this to give you hope that while things will never be what you used to call normal again, there can indeed be a time when you get back to many of the things that you love and did pre-diagnosis.
Example #5: Living with metastatic breast cancer (MBC)
I also want to make sure to acknowledge the complex experience of living with metastatic breast cancer (also known as MBC or stage IV).
Someone living with MBC will likely never be done with active treatment. Their timeline is less linear with frequent monitoring (typically every 2-4 months), active and updated treatment regimens, and recovery and healing all rolled into the rest of life in survivorship.
This means they are always facing:
the potential of a “new” or updated diagnosis - tumor stability vs. cancer progression
a current or new treatment regimen depending on the results and the resulting side effects
continual physical, mental, and emotional recovery and relapse
resetting expectations of their new normal as their health and needs change
While I myself have not faced this diagnosis, I work with and have known many people who have and from what I’ve seen a person’s needs can ebb and flow depending on how they are doing physically and mentally at any given time.
With metastatic breast cancer, living with cancer becomes your version of survivorship, so it very well may include ALL of the above examples at different points or even at the same time.
What I can tell you is that despite statistics that are often all too real, each person living with stage IV is unique and no person is bound by any odds.
One of the most important things I’ve learned through being a witness to many people who have lived with and died from stage IV breast cancer, is that we must not turn our backs on our MBC community.
Without having experienced it myself, I believe that perhaps the most important element of self-care when living with a stage IV diagnosis is to remember that your life is still worthy and beautiful.
For anything related to MBC I do my best to defer to people and resources that focus on this population specifically.
I wrote this article, titled “We Need to Talk About Metastatic Breast Cancer”, during Breast Cancer Awareness Month in 2023, and can only hope it does justice to the subject.
My Work as Your Breast Cancer Self-Care Specialist™
Though I never used to think of it as such, I have been in the self-care game for more than a dozen years.
I went to massage therapy school to learn to help others through the power of touch but what I didn’t know is how it would change how I care for myself.
I’m not gonna lie - this self-care specialist was not always a self-care princess…. Ready to get real?
I smoked for 13 years - sometimes heavily, sometimes less, but consistently from 18 to 31.
I used shopping as a crutch spending money I didn’t have during times of stress (which only created more).
I drank and ate whatever I wanted without giving much thought to how that would affect my life in 20, 30, or 40 years (ok I still drink and eat whatever I want but I’m more thoughtful about it these days…).
I’ve always been a night owl and still struggle with solid bedtime and morning routines.
But as life went on and I grew up, and I experienced more physical, mental, and emotional traumas and challenges, I realized that sometimes self-care was the only way to keep from falling apart.
Ultimately it was through my own diagnosis that I realized the professional skills I had been using with others for years could be turned into my own self-care practices.
The sense of control I felt when I understood my risk of lymphedema and was able to do my own manual lymphatic drainage on my affected side was how I knew that cancer had not won.
I took lessons from past clients - the ones who allowed me to work with their mastectomy scars and not only lessen their pain but help them open to a new connection with their changed bodies - and used them as my own.
And now I see my work for what is - even when my hands are the facilitators - real, relevant, effective breast cancer self-care.
My in-person clients come to me because it is a step THEY are taking to care for THEMSELVES. I have the skills but they are the ones prioritizing their time, their money, and their energy to make and keep their appointments.
They are the ones who recognize the benefits of time set apart just for them, of deeply effective work in a non-clinical environment, of connecting with another who has been in similar shoes.
I’m just there to assist.
And that is where the idea of As We Are Now LLC, my online expansion for breast cancer self-care education and support, came from.
To take what I know how to do, what I learned to use for myself, and teach you to do the same.
Because to quote author Lalah Delia, “Self-care is how you take your power back.”
I hope breast cancer self-care is crystal clear to you now.
I first launched As We Are Now because I knew that empowering women to take healing into their own hands could be the difference between passively recovering and actively healing.
To be honest it’s been a winding road figuring out exactly what this is supposed to look like but like many things in life, it’s an experiment and a practice that I keep getting a little better at all the time.
Do you still have questions? No shame in that! You can contact me here or find me on social media, where I'm always happy to answer any questions.
One thing you can do to get started with your own form of breast cancer self-care is take my online workshop “Brush to Body: Dry Brushing for Breast Cancer”.
I hope this post has been helpful!
Any questions? Comment below or shoot me a DM on Instagram and don’t forget to check out my previous posts here on The Sunday Self-Care Chronicles!
NOTE: The Sunday Self-Care Chronicles and all content written for Amy Hartl, LMT and As We Are Now LLC is written from my perspective as a cis-gendered white woman. Because this is my lived experience and what I know and can speak to, and because MOST people diagnosed with breast cancer are assigned female at birth (AFAB), I often use terms like “she, her, woman, etc..” However I recognize that breast cancer does not discriminate by race, by gender assignment or expression, or any other label or identifier that we use in our society. Therefore, this space, my free content, and my online services are all available to you, whoever you are, if you are living with a breast cancer experience.
I am also well aware that many people who are diagnosed with breast cancer will never see an end to treatment. For those still living with breast cancer, especially metastatic breast cancer, life “after” or “beyond” breast cancer may refer to diagnosis vs. an end to treatment but I use this language interchangeably and invite you to apply it how you will to your personal experience.
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