Redefining Breast Cancer Support for Mental Health
The #1 mistake most people make when facing breast cancer is also the best advice I ever received.
I can still hear her voice on the other end of the line:
"The most important advice I can offer is don't ignore your mental health. I did and 5 years later it's kicking me in the ass."
I was weeks in to my diagnosis and she was the first person who brought up the idea of seeking support to handle things mentally and emotionally.
When I reached out to others they shared their stories about:
how to decide what type of surgery was best for me
what to buy to be comfortable during recovery
whether to wear a wig, a hat, or go bald
what cream they liked best during radiation
how to overhaul my diet and my cleaning supplies
and a lot of other practical (and sometimes over-the-top) recommendations
And it makes sense.
It's all important information and these are the tangible ways we control and counteract what we go through.
These are the things that keep us up at night as we anticipate what's to come.
But the truth is focusing ONLY on these things is short sighted.
Cancer is a long game even if you are lucky enough to become cancer free.
And while it would seem that breast cancer support is everywhere, thanks to the races, the ribbons, and the “reels”, too often people aren't getting the REAL types of mental and emotional support they need:
at the time of their diagnosis
during treatment
through early recovery
and even (most often) in long-term survivorship
This week I'm redefining breast cancer support so that you can customize your path to taking care of your mental health.
But first let's talk about why mental health matters….
While groups and other forms of peer support can be helpful they are no longer the only way to process your unique experience in breast cancer land.
"If you don't have your health, you don't have anything".
Our culture has a habit of putting physical health and performance on a pedestal.
We deify athletes, actors, models, and those whose outward appearance seems to be a physical representation of living a “good life”.
We revere lean, tan, strong, “healthy” bodies to the point that in order to obtain them some will:
dope themselves with drugs that overload their systems
engage in disordered eating that damages vital organs
bake in the sun increasing the risk of serious skin cancers
and other activities that actually endanger their physical bodies and their long-term health.
In turn, we judge and pity those living with illness, with disease, those who are overweight, and who seem to be the victim of their own circumstance or lifestyle.
But your physical health is NOT the basis of how valuable your life is.
And cancer and many other illnesses are ultimately beyond our control.
Does this mean we are not worthy of a good life if and when we are sick?
Your mental health is just as important as your physical well-being (maybe more so).
When you are diagnosed with cancer it forces you to face your own mortality.
You look for reasons why this happened to you and what you need to do to get better.
Thankfully everyone on your medical team is also focused on treating you physically and keeping you alive as long as possible.
If you have an “early” stage (0-3) diagnosis, doctors may tell you this is just going to be a “lost year” as you put plans on hold in order to get to “the other side” and then your life will resume as you know it.
Anyone who has been through this will tell you that's the furthest thing from the truth.
Another truth is that there is no such thing as “lost” time.
Your life is happening to you every moment of every day, healthy or sick, rich or poor, pretty or plain, and you deserve to be as grounded and even joyful as you can be.
Your mental health is the foundation for a good life no matter what challenges you face.
One of the most profound perspectives I've ever witnessed on this subject is the story of Claire Wineland who taught the world that even sick people deserve to be happy.
This truth - that your life is valuable and meaningful, in every moment, even in the throes of illness (and the lasting aftermath) - is why finding support through breast cancer and beyond is a critical part of your long term recovery and healing.
So what is the #1 mistake that people make when living with a breast cancer experience? You've probably already guessed it….
Physical health may take all of the focus when it comes to navigating cancer but your mental and emotional well-being is just as important, if not more so. Finding forms of support can make the process easier.
Don't ignore your mental health. Ever.
Ignoring mental health and not engaging in individualized support is the #1 mistake most people make when navigating their breast cancer experience.
There are many reasons why this may be:
the focus on life-saving and life-extending treatment always comes first
the physical challenges of cancer treatment are overwhelming and exhausting
lack of access or resources depending on physical location or online availability
existing disparities and inequities within and around mental health care
personal, family, or cultural norms, myths, and ideas can play into a person's perception of mental health and what is appropriate around seeking support
Now this doesn't mean that by having support you're going to skip through treatment and beyond singing “tra-la-la-lee” without a care in the world (despite what some Instagrammers would have you believe).
But it does mean that you can find better footing to handle the challenges that come.
Prioritizing your mental health through support channels that are right for you can ensure that you not only have the opportunity to heal physically but mentally and emotionally as well.
No matter where you are in your experience - newly diagnosed, in treatment, in survivorship, living with MBC - there are ways to find support that feels right for you.
So let's get to it!
There are many reasons people don't seek support for a breast cancer experience. There are also many ways to find the type that is right for you.
Redefining breast cancer support.
When most people hear “breast cancer" and “support” the first thing that comes to mind is a bunch of women sitting around in a church basement or hospital meeting room.
I know that's what I immediately thought of and I wasn't completely wrong.
Luckily in my area we had the “standard” groups and a couple of “young” groups designed for those diagnosed under 40.
And while I was grateful for options even this wasn't an easy answer.
Some of the personal challenges I faced when deciding whether or not to attend a local in-person support group were:
I was 41 when I was diagnosed and I couldn't relate to the women in their 60's and 70's who were at such a different phase of life
I had to get permission to attend the “young” group and I still couldn't relate to the young moms (or wanna be moms) who had such unique challenges
I wasn't “surprised” by breast cancer because of my BRCA1+ status whereas most women “didn't see it coming” and this made me feel like no one got me
the meetings were on my chemo days so I couldn't attend even if I wanted to and once I was through chemo I was back to work and couldn't attend
And none of this even took into consideration:
how I connected with the facilitator
or the other individuals in the group
or how I felt about having to hold space for others while trying to hold space for myself, etc…
Now I'm not knocking all in-person support groups.
If you have one nearby and it works for you, GREAT!
But let's make sure we examine allllllll the other ways to define and find support for your mental and emotional well-being beyond the traditional breast cancer support group.
LIVE VIRTUAL SUPPORT GROUPS
Thanks to the digital age we can actually connect with people all over the world to find support.
And because of this increased access and availability we can often find groups that are more personally tailored to certain aspects of our experience.
There are now live virtual support groups for all different aspects of what we go through and who we are:
“young” breast cancer (under 40 to under 50 depending on the group)
cancer professionals (those of us who also work in cancer land)
LGBTQIA+ breast cancer patients, survivors, and thrivers
race and ethnic based groups - Women of Color, Latinx, Asian/Pacific Islander
those living with metastatic disease
shared diagnoses like triple negative or her2+
those who opt for aesthetic flat closure (aka “flatties")
and more!
Finding a group that is made up of others in a similar age, diagnosis, or identify demographic can help you feel more comfortable sharing and receiving with a higher likelihood you can relate to others in the group.
ONLINE COMMUNITIES AND FORUMS
If live groups aren't really your jam another option is the online forum.
These are typically Facebook groups, or other online communities where people can post their questions, stories, seek advice and information, and they often have the benefit of being moderated by peers.
I typically prefer the more formal online communities - BezzyBC is a great one - over a more generic Facebook group, as platforms like Bezzy are more defined and controlled for content.
With a forum you can engage when, how, and as much or as little as you want.
(NOTE: In my experience Facebook groups can sometimes be like the Wild West so enter with caution unless it is part of an existing group or guide you know and trust.)
PEER TO PEER COUNSELING
Peer to peer support can be found among cancer centers, non-profits, as well as online.
These are usually not professionals but someone who has had a similar experience to yours but is maybe a bit further along on their path.
You are typically “matched” with someone by the organization and the relationship is up to you to build and maintain.
It can be nice to have someone who “gets” it but one of the challenges can be finding a good match, whether by availability or simply personal connection.
CANCER CONCIERGES, COACHES, OR CONSULTANTS
These are often other survivors (though not always) who have some sort of additional professional experience as a therapist, counselor, coach, or other health professional.
They will work with you in a group or one on one to customize resources and recommendations that meet your unique needs.
Often the guidance they can give is founded in a combination of their personal and professional experience.
One of the benefits of someone like this versus talking to a friend is that they have the distance of professional perspective and boundaries to separate their own experience from yours, ensuring they serve you as their client.
This is how I classify myself when offering my “Ask Amy” Consultations!
INDIVIDUAL THERAPY
I will ALWAYS invite you to seek professional mental health services at any point in your breast cancer experience (personally I think therapy is great for everyone!).
The one thing I will offer is that not all therapists are created equal.
Cancer not only creates it's own trauma and possible PTSD but can also compound others from your life.
Seeking a therapist who has experience working with people impacted by cancer, trauma, or PTSD, is a crucial step to finding someone who is a good fit.
HEALH & FITNESS PROGRAMS & ACTIVITIES
Depending on where you live there are numerous opportunities to move your body while finding connection with others!
Whether you like the more traditional walks and races like the American Cancer Society's Making Strides Against Breast Cancer or you want something more unique, it's likely out there.
Here are some way cool options for the breast cancer community:
dragon boat racing
crew or skull boats
free gym memberships
fly fishing outings
skiing and snowshoeing
hiking and more!
Here in Buffalo, NY our local non-profit the Breast Cancer Network of Western New York offers free restorative health classes at our facility Monday through Friday!
SPECIALIZED RETREATS & SUMMITS
Many of the online communities now offer opportunities to gather in a conference or retreat like setting.
Usually 2-3 days, these are chances to come together with the community at large while also connecting in small groups.
There are themes, activities, workshops, and offer a well-rounded chance to learn and connect with others who get it.
I attended my first breast cancer conference (that wasn't related to my professional work) in February 2023 with the Young Survival Coalition.
It was an experience I didn't know I needed and one I will never forget.
INTEREST-BASED COMMUNITIES
Just like some survivors and thrivers become coaches or consultants, some start businesses and non-profits that focus on a shared interest beyond the diagnosis.
Wildfire Magazine & Writing Community is one of my favorite recommendations for finding support.
Whether it's quietly by yourself in the stories and images of the magazine's pages or with others in a prompt-style writing workshop, writing is a way to make meaning of your breast cancer experience.
Wildfire was one of the first forms of support that really resonated with me because I could see myself in the women who wrote and I knew I wasn't alone.
If you don't consider yourself a writer, you might find healing through art therapy, connection through a podcast, or self-confidence via photography experiences.
ONLINE WORKSHOPS, COURSES, & PROGRAMS FOR RECOVERY
Recovery is as individual as the person who is going through it but there are often things we can all use as we move thorough it.
Often hosted as self-paced or short live sessions, these online programs, courses, and workshops focus on a specific aspect of your well-being such as:
sexual health and intimacy after cancer
nutrition and exercise
fear of recurrence
One of my favorites is Christi Nelson's “Think Outside (the boob)” which uses nature as a recovery guide.
My own “Dry Brushing for Breast Cancer” is a way to learn about and support your lymphatic system as it has been affected by breast cancer (because it almost certainly has).
Online learning like this supports your mental health by empowering you take healing into your own hands and gives you tangible, actionable ways to make progress toward your goals.
FINDING YOUR KINDRED SPIRIT
My final and favorite form of mental health support that I'm sharing today is to find YOUR people.
Whether it's one special person who gets you and gets “it” or a handful, these individuals are often the ones who are there for the long haul.
My own breast cancer land besties allow me to:
lean on them when I'm feeling sad or afraid
vent when I'm feeling triggered
rage when I learn about another stage IV diagnosis or loss
laugh about the ridiculousness that is often life after a breast cancer diagnosis
and generally just be me despite cancer
It can take some time to find these folks, and some will come and go, but if you find even one, cherish them and give as much as you get.
Well! Now that you have all of this new information how do you work with it?
It's not as hard as you think….
Support comes in many forms. Whether in a group or on your own, it's a critical part of healing.
Figure out what is right for YOU, NOW.
I'd love to say it's as easy as clicking some of the links I've shared or hitting up The Great Google and searching for the rest but honestly nobody has that much time to spend trying to sort it all out from scratch.
That's why I've identified some guidelines that can help you figure out what is right for you, right now.
1. Start with where you are at in your experience and what you need.
You are going to need different things at different points in your breast cancer experience.
What you need in the way of support when you are newly diagnosed vs active treatment vs living in your unique form of survivorship will vary.
Start here.
Based on where you are at in your experience NOW, identify your greatest challenges and one or two goals.
Once you have a sense of where you are and what you need you can start to lay the path for where to look.
Don't focus on future worries or challenges.
Stay in the present and take one thing at a time.
2. Focus on who you are as an individual.
I've said it before and I'll say it again:
"You can have 100 women with the exact same diagnosis and exact same treatment plan and you still have 100 unique breast cancer experiences."
That's because you are an individual and the way you walk through this is unique to who you are and what you bring with you.
So focus on yourself instead of the support.
Consider your values, interests, availability, and budget.
Are you an introvert or extrovert?
Do you prefer solo or group interactions?
Are you currently in crisis or on stable ground?
Do you love pink or hate it?
Do you need to feel like a warrior or do you need more grace?
Do you want to be a part of the pink ribbon brigade or run from it?
Do you want to be a “breastie" or just plain old you?
Do you have the time to commit to on going sessions or programs?
Is it easier to slip in and out of an online forum?
Will healing physical concerns increase your mental well-being?
Do you have the funds for a larger program or do you need free options?
Do you need to rely on insurance or do you have the ability to self-pay?
There are no right or wrong answers when it comes to this stuff.
But knowing who you are will help you determine what's going to work best for you when you are looking at various forms of breast cancer support.
Forcing yourself to participate in a style of support that doesn't feel right to you is more than likely to backfire.
3. Let your support evolve with your experience.
The nature of life is evolution and change.
Wherever you are now is not where you will be in the future.
This means that as you identify and work through your support systems you need to leave room for them to evolve with you and your experience.
If you try something and it doesn't work for you, try something else.
If you were doing something and it stopped working for you, allow yourself to move on.
Be open to being surprised that a form of support that you once shied away from might start to intrigue you when you are entering a new phase of your experience.
Our lizard brains are resistant to change and work hard to keep us safe.
What they don't always realize is that sometimes in doing so they actually keep us from becoming safer.
You, the individual, need to be at the center of your support search.
What I got right.
In my own experience, thanks to my friend's unique but oh-so important offering, I continue to make choices to protect my mental health.
These have been the game changers:
1. I opened myself up to anxiety medication to help me “get through” the hard parts.
Turns out it may be the single best decision I ever made in my life and I remain on them to this day.
What started as a treatment for acute panic became a long-term answer for a lifetime of generalized anxiety and my life is infinitely better for it.
2. I seek therapy whenever I need it, related to cancer or not.
I've always been open to counseling and while not currently in it I know that I will never NOT seek it out when appropriate.
I've had at least 3 relationships with therapists since diagnosis and they all served me well.
3. I have people I can be myself with when I need support.
I have a couple of kindred spirits who have also had breast cancer and I keep them close, not just for what we share but for who they are.
4. I allow myself to grow with my experience.
There are many things that I have done since my diagnosis that have surprised me:
I got over my fear of flying and went paragliding!
I joined the board of a breast cancer non-profit
I bought a pink mini-fridge for my office.
I am not who I was when I was diagnosed with breast cancer.
I am not who I was before I was diagnosed.
I will not be who I am now when I hit my 10 year mark in four more years (regardless of whether I will be lucky enough to still be cancer free).
Accepting the nature of change and allowing myself to be a part of it allows me to move through healing at a pace that is unique to, but also right for, me.
What I got wrong.
And, because I am human, there were things I could have done differently or better along the way:
1. I allowed my “triggers” to overrule my need for connection.
There were times I could have used support, especially during treatment and early recovery, but despite or because of a lifetime in cancer land, my actual diagnosis brought a lot of unhealed trauma to the forefront.
I was hostile towards:
anything pink (especially if it had a ribbon)
the battle language often used with cancer
people who danced their way across Instagram with a chemo pole
the mere idea of “support groups”
This meant that I isolated myself from places where others were sharing their breast cancer experience.
I will caveat this by saying that it is OK to dissociate or detach from things that are triggering to you if you are not grounded enough to face them.
But when something triggers us it is often a sign that we need to bring that pain to the light for further examination.
I have worked on this aspect of my healing for several years (and still am) and I'm proud to say while I’m still not putting on a pair of pink boxing gloves, I've learned to appreciate the way others live their experience even if it’s very different from mine.
2. I hid behind my professional veil in order to not face my personal pain.
My professional education and experience in integrative cancer care was such a source of support when it was my turn to face a diagnosis.
It also allowed me to pretend that I knew it all and to hide from the personal healing I needed to do.
The more I have opened up to sharing myself beyond the letters behind my name, the more I feel like I am making real progress in living beyond the diagnosis.
One of the best days of my life. July 2023, Ochinensee, Switzerland.
How I can help you find support.
Personalizing a self-care plan is one of my favorite things to do with my clients.
MENTAL HEALTH SUPPORT IS CRITICAL SELF-CARE WHEN YOU'VE HAD BREAST CANCER.
If you would like individualized support beyond what I've shared here, I am now offering two versions of my “Ask Amy” consultations that you can book online at your convenience!
I work with women from diagnosis through all forms of survivorship including many living with metastatic disease.
Choose from a 30 minute or 60 minute expert consultation and let's identify the best ways for you to prioritize your mental health NOW.
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