Pain and Breast Cancer: Understanding, Coping, and Healing
September is Pain Awareness Month, friend.
Did you know that only 2-7% of people experience pain as their primary symptom of breast cancer?
That said pain is an inescapable truth of a breast cancer experience.
It's safe to say that I have never met anyone with a breast cancer diagnosis who has not dealt with pain at some point because of it:
as a warning bell or catalyst before a diagnosis
as a direct response to invasive surgeries and treatments
as an ongoing reminder that our bodies are forever changed
As someone who has not only been through it myself, but also worked with hundreds of others who have, this is saying something.
Understanding the relationship between pain and breast cancer is crucial because it empowers you with knowledge and insights that can help you:
identify when you need to seek care and from whom
make informed decisions about your complete health picture
gain a sense of control in a situation that usually takes it away
improve your day to day quality of life by reducing physical pain, mental anxiety, and emotional stress
This week I'm breaking down what you need to know about breast cancer and pain* so that you can understand, cope, and heal.
*while breast cancer causes pain in many forms - mental, emotional, and physical - today I am focusing primarily on the physical complexities of pain and how to manage and heal from it.
Understanding pain and breast cancer.
It would be great if I could sum this up as simply as “pain = bad, no pain = good” but the truth is way more complicated than that.
Pain is a protective mechanism for the human body. It has a job to do and it's a needed one.
It is a complex and intricate sensory experience that has evolved over millions of years to alert you to potential harm or damage to your body.
Basically pain shows up to let us know something isn't right.
And while it's TRUE that MOST breast pain is not cancer related, it's also true that there are ways people experience pain as a precursor to their diagnosis.
Ways that breast cancer cause pain BEFORE diagnosis or intervention.
Although pain is not commonly present with a breast cancer diagnosis there are ways that it can be the first warning sign of a problem:
a tumor can press on surrounding tissues and nerves sending painful stimuli through the sensory nervous system
it can create inflammation resulting in redness, swelling, heat, and pain
through the invasion of the lymph system - when lymph nodes (aka glands) are trying to neutralize cancer cells they can become swollen and tender
cancer metastases to the bones or other organs can lead to ongoing or increasing pain at those sites
In the case of people who don't experience pain prior to their diagnosis it is unfortunately almost inevitable once treatments begins.
Identifying the cause of breast pain is important for proper treatment regardless of the source. If you have unexplained breast pain seek the advice of your primary GP, gynecologist, or oncologist if appropriate.
Pain during and after breast cancer treatment.
This part is more obvious as surgeries and other interventions like radiation and chemotherapy typically impact more of the body than just the cancer itself.
I remember the first few weeks after my 7 and ½ hour surgery there were so many conflicting sensations, most of them not very pleasant.
A double mastectomy with direct to implant reconstruction and laparoscopic partial hysterectomy left me with weeks of:
numbness that ebbed into searing pain and then faded back out again to numbness
a feeling of unfamiliar weight and tightness through my chest and around my ribs
the nagging irritation of four small holes with drain tubes stitched in that constantly shifted and tugged at the tender skin around them as it desperately tried to close and heal but couldn't until they were removed 1 and ½ weeks later
tenderness in my abdomen from the small holes where they entered and removed my ovaries and fallopian tubes
the strange fact that the small incision under my arm where they removed 6 lymph nodes seemed to hurt the longest (and occasionally does to this day)
Diagnostic and surgical procedures like biopsies, lumpectomies, mastectomies and reconstruction options cause varying degrees of pain based on their extensiveness, potential complications, and an individual's unique pain tolerance.
I was fortunate to not personally go through radiation and while many people are lucky to experience something similar to a mild sunburn, this treatment can have serious long lasting and unexpected impacts (more on that to come).
Chemotherapy, immunotherapy, and hormone treatments all have their own special hell-blend of side effects that cause pain in different ways:
scalp tenderness as hair begins to fall out (who saw THAT one coming?!)
deep excruciating bone pain from chemo drugs and treatments like Neulasta (Claritin anyone?)
the pins and needles or fiery burn of chemo-induced peripheral neuropathy
splitting skin on the fingertips and loss of finger and toe nails
crippling joint pain that makes a woman in her 40's feel like she has the arthritis of an 80 year old
and so many others (don't even get me started on vaginal health and pain)
There's a good chance that many of you reading this are thinking, “thanks Amy, you're preaching to the choir here!” but it is where we go from here that makes the difference.
While most of the acute pain caused by surgeries and other treatment interventions will slowly subside, there are times when certain pains just don't go away, or even get worse if left unaddressed.
This is where self-advocacy and self-care becomes critical to coping with and ultimately healing from long-term breast cancer related pain.
(trigger warning - graphic picture next)
Seeing ourselves like this is hard. Living in pain is harder.
Coping with breast-cancer related pain.
Managing pain during treatment depends on a lot of factors:
where you live and what type of care you have access to
if you are covered under health insurance or have to pay out of pocket
It can even depend on the color of your skin
In my personal experience as a heteronormative cis-gendered white woman living in a small city with a top-rated cancer center I never had to fight too hard to make sure my pain was managed during or after treatment.
But over the last decade plus in my field, I have seen and treated so many women living in pain even after their surgeries are complete and their treatments have come to an end.
Some of the most common causes are:
tenderness and tightness from built-up scar tissue
nerve damage caused by biopsies, surgeries, and radiation
limited range of motion and restrictions from axillary cording
painful swelling in the arm or breast from breast-cancer related lymphedema
joint pain from estrogen suppressing drugs
chronic pain due to bone metastases
And the thing about this ongoing pain is that it takes its toll.
Pain creates worry. Is the cancer back? Has it spread? Should I tell my doctor?
Pain wears you down. Physically, mentally, emotionally.
Pain steals joy. It limits or prevents you from engaging with people and activities you love.
Pain disrupts sleep. It impedes your body's ability to of its best healing while at rest.
I've had clients tell me time and again that living with and trying to manage the pain and challenges of life after treatment is almost worse than what they went through to get rid of the cancer itself.
When they ask their doctors for support they are most often offered over the counter medications like Tylenol or Advil or written a prescription for a stronger pain killer.
Typically though these are bandaids and don't address the root cause.
So how do you go from coping with pain to actually healing through and beyond it?
Some clients say that living in chronic pain is harder than their actual cancer treatment.
Healing from breast cancer and pain.
There are fews ways to completely avoid pain through a breast cancer experience but this does NOT mean it is acceptable to live with it indefinitely.
If I hear one more client tell me their doctor, PA, or nurse told them that their chronic breast cancer related pain is normal and that it's “just the way it is” I'm going to hunt that practitioner down, stomp on their toe and ask them if that feels normal while they hop around on one foot.
Just because something is COMMON does not mean it's NORMAL.
Pain is a signal that something isn't right in your body.
Can all pain be eliminated completely?
No probably not, especially after extensive trauma like some cancer experiences.
But there is too much dismissiveness within allopathic (what we sometimes call “Western”) medicine these days.
It shouldn't be on the patient to find their own path to healing but unfortunately it too often is, so here is how to get started if you are living in chronic pain:
IDENTIFY THE PAIN:
If you haven't yet figured out the source of your pain it is imperative to seek professional guidance.
This might be via:
your oncologist, radiologist, or surgeon
your primary GP, gynecologist, or other appropriate doctor
a Certified Lymphedema Therapist or Physical Therapist
a chiropractor or appropriately trained massage therapist
another integrative practitioner like a naturopathic or functional doctor
your local cancer resource center or patient navigator
YOU CAN'T TREAT OR CHANGE WHAT YOU DON'T UNDERSTAND.
If you don't get answers from one, or if you feel dismissed, KEEP GOING.
Just because one professional may not know what is going on doesn't mean another won't have the answers you seek.
I know this because I speak from experience.
TRY THINGS YOU HAVEN'T TRIED YET:
When available to you, think outside the box.
Integrative and complementary therapies are becoming more well-studied and delivering evidence-based proof that they are beneficial for pain management:
Oncology Massage Therapy is proven to help relieve pain in multiple settings as well as other cancer-related symptoms like fatigue and anxiety
Acupuncture can help with pain caused by neuropathy and nerve damage and can even be found in some cancer centers
Physical Therapists and Pelvic Floor Therapists can identify and address pain and are often covered by insurance
Wound Care Centers can have surprisingly beneficial results even in the absence of an open wound (I've seen this with a bad case of radiation fibrosis)
Join a fitness program that meets you where you are at right now - exercise is a surprisingly helpful way to treat many common musculoskeletal aches and pains (it also helps reduce risk of recurrence!)
Alternatives to medication - CBD tinctures and creams, topical or homeopathic arnica or magnesium, and more can be found in natural health stores (always consult your doctor for any contraindications to current meds etc first)
Medical or recreational marijuana can ease pain and other symptoms during and after cancer treatment
ASK FOR HELP:
You might have to steer the ship but that doesn't mean that others can't help adjust the sails.
Demand a referral to a specialist that might understand what is going on:
Pain Management practices and clinics specialize in identifying and treating chronic pain
Palliative Care is all about comfort and pain management (this is not synonymous with end of life care as some believe)
Breast Cancer Recovery Coaches and Consultants (like myself) are able to talk you through your experience and help guide you in the right directions so you don't have to do all the work)
If you need financial assistance talk to the practitioners you are reaching out to and see if they offer discounts or equity pricing for those in need
SEEK SUPPORT CLOSE TO HOME:
Often times one of the hardest things is to be honest with the people you love about what you are dealing with.
Many times friends and family assume we are “fine” or “all good” if we are lucky enough to see treatment end.
But if that's not true, letting them know how they can support you can make a big difference, mentally, physically, and emotionally:
Ask for help with household chores while you are working on healing your pain
Ask for more quiet and rest if needed to recharge your internal batteries
Ask for comforting physical touch like a gentle back or foot rub if it feels good
Ask for emotional support and compassion when you don't feel good
Allow them to be there for you if they are expressing that desire
While already a long list, this is truly just the start of how you can go about reducing or evening eliminating chronic pain.
The most important thing to remember is that you don't have to accept living in pain without trying to change it.
There are ways to work on improving your pain if not eliminating it completely.
How I can help you heal from pain.
Pain management is one of the main ways I support people and not just with my hands.
Without bragging, I can honestly say that I have been the catalyst and the momentum to help a number of my clients receive proper diagnoses and treatment for pain and other cancer-related issues.
Having witnessed so many different outcomes and experiences of people affected by breast cancer over the course of my career, I've learned a lot about how to ask the right questions and guide you toward the next step.
Taking care of your body after a breast cancer diagnosis can be overwhelming.
You don’t have to do it alone.
If you need personalized 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 get you started towards ideas, resources, and recommendations on how to heal your breast cancer related pain.
PS: For those that live in Buffalo, NY my hands-on practice is also a great way to begin or expand your journey toward pain management and relief.
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