My breast cancer story starts like so many others, with a short trip, this one to get a routine mammogram.
Breast Cancer Biopsy
Over the years, many of my mammograms have come back with issues that necessitated follow up, and so did this one –it revealed a spot.
I didn’t give much thought to it, even when I was told I’d need a biopsy. I’d already had a number of biopsies and they hadn’t turned up cancer.
I was lulled into further quietude when the surgeon reassured me there was only a 10% chance this tiny spot in my breast was cancerous. I knew I would ace this test like I aced everything else. Or so I thought.
Little did I realize I had already begun my safari into the Breast Cancer Jungle. We’d left “civilization” and I was now a passenger in the process of discovering a strange exotic thing growing in my body.
The first leg of this expedition took a couple of months. From the time of that mammogram to the day my surgeon left me marooned in a lagoon of words I did not ever want to hear –invasive lobular carcinoma, which was just a clunky way of saying it was CANCER.
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Cancer Family History
Other family members preceded me as passengers on this unwanted journey.
My family history of cancer includes my father, a survivor of stage 3d colon cancer, and his mother, my grandmother, who had breast cancer at a youngish age, and a single mastectomy to go along with it.
This unfortunate right of passage had reached down into the third generation, and now I too was included.
What decisions would I make? How would I withstand the pressure of this disease and the grind of the Cancer Industrial Complex?
I’m still figuring it out. The most challenging part has been going through the mental and emotional parts of this journey.
Breast Cancer Genetics
It all began when I was diagnosed with the BRCA genetic mutation in 2008. Ever since I’ve been under high surveillance for breast cancer.
Breast Cancer BRCA Gene
Still, when I was diagnosed with breast cancer, late in the summer of 2021, like many patients, I went into physical and emotional shock. First came the overwhelm, then meltdown.
I lost myself as the Cancer Industrial Complex swung into high gear.
The Cancer Industrial Complex
Waves of treatment options flooded my world.
I received calls from the radiation center and was scheduled for radiation before I had the cancer staged. It was as if I vanished when the cancer crystallized.
They were looking out for me, taking care of me, but still, I was “disappeared.” In addition to taking a pause to find myself, I needed time to gather more information.
Multiple Sclerosis and Cancer
When I came up for air, a couple of weeks later, I put on my medical detective hat and began researching the safest cancer treatments.
This was critical for me since I suffer from several autoimmune conditions including MS.
How Many Breast Cancer Stages Are There?
Meanwhile, during my search for the best treatment for me, I was making plans to get the cancer staged. There are four stages of cancer.
Staging would require surgery for the second time in less than two months.
In late September, my phenomenal breast surgeon, Dr. Stephen Johs dissected my lymph node, after a radioactive dye was injected into my nipple. I awoke to learn the cancer had not spread. It was stage 1 cancer –considering things could be so much worse, I felt great relief.
That lasted for two weeks. Then the treatment options came home to roost, and I was faced with a series of tough choices and insomnia inducing dread along with them.
Disease of Decisions
Cancer is a disease of what can seem like never ending stress and a long string of difficult decisions. Chemo or radiation? Lumpectomy or mastectomy? Single mastectomy or double mastectomy? Implants or flat closure?
Cancer Treatment Options
I was swimming in confusion and at times, buried in denial.
Ultimately, when it came to treating the cancer, I decided not to do radiation.
The MTHFR genetic mutation combined with a heaping dose of electromagnetic sensitivity and certain studies I had read made me realize this was not the right choice for me.
Mastectomy vs Lumpectomy
Rather than lumpectomy with radiation, I chose amputation –to have my breasts taken off.
This decision further made sense because the BRCA mutation gave me a high likelihood of recurring breast cancers.
Breast Implants or Flat Closure?
Now that I had resolved to remove my breasts to save my life, I faced a new set of unyielding decisions.
The impending double mastectomy meant I had to figure out whether to do reconstruction with implant surgery or have my breasts removed without replacement, referred to as flat closure.
How to Make the Right Decision?
As my research continued, I found myself vacillating between flat closure and breast implants, swinging back and forth repeatedly, and somewhat neurotically, for a couple of months.
The decision kept me up many sleepless nights.
Yes, I knew I would have my breasts amputated, but I could not decide whether to leave them with a flat amputated look or undergo reconstruction after they were taken off.
Oddly, I felt like whichever choice I made was the wrong one.
Perky New Breast Implants?
Truly, the idea of having perky “new” breasts to replace the old ones I would lose was tantalizing and I spent a couple of months researching it.
Along with this research came a stream of endless assurances from every single doctor I spoke to about silicone or saline breast implants. They’re totally safe. I was told over and over again, without fail.
Yet I never believed this would be true for me.
General Anesthesia and MTHFR Mutation
Still, if I could put aside my own fears about the risk of breast implant illness that had gained a strong toehold in both my mind and gut, I remained concerned due to the fact that reconstruction surgery would mean more procedures and as a consequence, more general anesthesia.
Given that I have the MTHFR genetic mutation, clearing toxins out of my body is far more difficult than for the average person, so this was of grave concern.
Furthermore, I worried that placing a foreign object in my body would pose a potential risk to me, given MS and a multitude of environmental allergies.
Breast Implant Illness
Along those lines, the last thing I wanted was the risk of breast implant illness (BII), a condition regarded with a fair amount of skepticism and disbelief by the medical establishment, but not at all uncommon on an anecdotal level.
Breast Implant Cancer
Another concern? Breast implant cancer, known as anaplastic large cell lymphoma (ALCL).
Breast Implant Recall
This cancer of the immune system is caused by an Allergan implant1 recalled in 2019.2
Allergan Implants and Explants
As an aside, I am absolutely horrified thinking of the women who struggled to overcome breast cancer, undergoing mastectomy surgery and opting for implants.
Can you imagine going through all that and then discovering that a cancer-causing substance was placed inside your body? I can’t!
The idea terrified me, along with the thought of facing another surgery to explant a cancer causing implant.
Ultimately I chose flat closure, not to have my breasts reconstructed in any way.
Note to readers: If you are considering flat closure, Kim Bowles’ website, Not Putting on A Shirt is a must visit; you can also read more about her mastectomy and flat denial in Cosmopolitan magazine.
How Breast Cancer Feels
In the end, offering your breasts in any form to the Gods of Cancer is a terribly personal decision.
I did so for my own physical health and peace of mind, and I understand that this is only my decision in a very bad situation, one that worked for me.
There are many paths and forks in the road on the voyage into the Breast Cancer Jungle. If you are hanging from its branches, only you will know what’s right for you.
Double Mastectomy Surgery
In early February I underwent a double mastectomy, my third surgery in six months. At that point, I was physically spent, emotionally exhausted, and full of hope.
Post Mastectomy Life
Thrilled to put the surgical component of the double mastectomy behind me, my relief was short lived.
Unfortunately, the surgery on the non-cancerous side of my chest was aggressive, I was hollowed out to the point of concavity. The surgical result was asymmetrical, unexpected, and painful.
Although I inquired a couple of times, I was given no explanation.
Both the physical pain and aesthetic result do not make sense to me at this point and are a bit of an additional trauma on top of cancer and losing my breasts.
The confusion and misunderstanding around this situation makes the healing process and emotional resolution around this surgery a bit more challenging.
Putting the cancer experience behind me when I live with pain as a near constant reminder is not an easy process.
Post Mastectomy Pain Syndrome (PMPS)
Today, at more than six months out, the right side of my chest and armpit are filled with a burning neuropathic pain, referred to as post mastectomy pain syndrome (PMPS).
In the world of breast cancer, it’s easy to convince yourself that after your breasts come off, you will simply move on. I myself was under this illusion.
Breast Cancer PT and Axillary Webbing Syndrome (AWS)
I’m now heading to my fourth physical therapist for treatment of the burning neuropathic pain, along with an armpit and portion of my back that are numb, and axillary webbing syndrome (AWS), a condition also referred to as cording.
In my quest for sensation, pain relief, and healing, the helpful and caring physical therapists tell me to speak with my surgeon since there is not much more they can do for me. We will see where this leads.
On that note, I’ve found solace in Meghan O’Rourke’s book, The Invisible Kingdom, a fantastic primer on the revolving door that is women’s health care today in the US, and which I once again find myself in.
Thankfully, life goes on as I swing from branch to branch in the Cancer Jungle, wondering what will become of me since this trying year is not over.
In the fall I will have my fourth surgery in just over a year, this one a hysterectomy to remove my ovaries, tubes, and more, while hoping for a negative biopsy.
A Collection of Symptoms
And so, to the diagnoses of multiple sclerosis, celiac disease, and autoimmune thyroiditis, I now add breast cancer.
My One Year Cancerversary
July 2022 was the month of my one year cancerversary, and I’ve spent almost every day of the last year dealing with the medical system.
Some days I’m reduced to feeling like a collection of symptoms.
On the worst days, I feel like I’m breaking apart. Other days, I go on a hike and feel like I look in the photo above –happy to get outside and drink in nature.
Cancer and Toxic Positivity
As one of the survivors in a Facebook group for flat folks like myself said:
I’m not brave, thriving, happy. I’m scared, scarred, and numb.
She goes on to say that being shown only smiling women, all those brave warriors and happy survivors, burdened her with a toxic positivity that added to her anguish.
I understand this –being told you’re strong and brave when you’re falling apart can cause a bit of cognitive dissonance.
The Dark Side of Breast Cancer
Yes, I know this is an incredibly dark piece of writing for me to share with you.
I’m generally optimistic. But for me, everything about breast cancer is dark. As they say, “cancer sucks” and this writing is about that experience, that part of my life.
Life and Death in the Cancer Jungle
That wraps up this summary of my trip into the Breast Cancer Jungle.
Many with a cancer diagnosis wrestle with imminent annihilation, grasping for life itself. Even for those not at death’s door, the struggle is exhausting, stressful, and burdensome.
Once you’ve entered, the Cancer Jungle will chew you up and spit you out. There are no silver linings here.
I am one of the absolutely incredibly lucky ones, and still, this is very, very hard.
I first published this post on August 8, 2022.
Dear Elana, thank you for your honest, raw and painful journey-of-healing story. Making all those decisions must have been incredibly daunting. My heart goes out to you. You are a true Healing Warrior Goddess!
You’ve inspired me for over 12 years (went GF for Hashimoto’s) and continue to be awesomely inspirational, giving me courage to keep going when I lose hope. ‘Sending you major good Mojo and healing prayers. Blessings to you and your family.
Alberta, no one has ever called me a Healing Warrior Goddess before and I am going to take the compliment and let that name stick. Sending you and yours healthy blessings :-)
Dear Elana, I’m so incredibly sorry for this extra heavy health burden being a part of your life over there the past year plus. You were the first gluten free blogger I found in 2011 when my 18 year old son and I learned of our Celiac disease. I have followed you ever since here and on IG. However life has had some big challenges for me in the past couple years and I have missed most of this story. I thank you for your willingness to share it as I’m sure others feel comforted that they are not alone in carrying multiple health burdens.
I pray that you are able to end the neuropathy and begin to see your health grow and your pains to subside.
Someone whose voice I’ve come to appreciate on living through a life with overwhelming and unexpected suffering is Kate Bowler. She’s has a book, a podcast and is active on social media. She speaks often about the toxic positivity in our culture and how abusive it can be to our hearts.
May beauty be your daily comfort and offer ever increasing joy to your life.
Katie, appreciate everything you have written to me here. I read No Cure for Being Human last fall and fell in love with it. Thank you for your support and for inspiring me with your wonderful comment.
Thankyou for being so open and honest. You are an incredibly strong woman and an inspiration!
My heartfelt prayers are with you
Thank you PinPin.
This… is what real people NEED to read, hear and feel. This is brilliantly explained and my heart pains for what you’re going through. No one wants to hear the C word — it’s the ultimate mind F. I so feel like it’s just a big money making machine…. watching my mom go through unrelated lung and brain cancer was a nightmare I’d wish on no one — and I was just a bystander. I can’t imagine what it FELT like in her inner spirit. This gives me a glimpse and I thank you for that. Your way with words is truly a gift to us all.
April, I can’t tell you how grateful I am for the words you left me here. I really needed to hear them todat.
Elana, I have followed your journey and made your recipes a regular part of my health reclamation. You are a uniquely inspirational and courageous warrior for physical, emotional, and spiritual health. Thank you for your honest and raw sharing of this challenging leg of your journey. You are clearly held in love and gratitude by so many…myself included.
Zoe, thank you for the absolutely beautiful comment.
Dear Elana, I am another longtime fan who was turning to you yet again for cooking- related inspiration, but instead found inspiration much more profound — thank you for being a role model for honesty and bravery, and continuing to educate and share with your community even in the hardest of times. You are incredible, and I hope you soon feel as great as you look in your photos;-) Wishing you a full recovery, and sending much strength and appreciation for enriching my world.
Hello to another Elana! Thanks for your super sweet supportive words.
Dear Elana, I have been following you and baking your recipes for a long time (have your books too). I am sorry for the pain and heartache you are going through. I would like to mention that it was wise to not get the implants for breast reconstruction. I had to have my implants removed due to BII. It is real and the journey to health after is hard. Although nowhere near your journey. Thank you for sharing your journey and all your wonderful recipes! Sending you love and prayers. Hugs.
Rebecca, thanks for your sweet words. Your journey sounds super challenging –getting implants put in is so hard, and then to have BII and experience the gaslighting of the entire medical establishment, and THEN to get those implants out. My heart goes out to you. I hope you’ll keep me posted on how you’re doing.
I started following your site about ten years ago when my son was diagnosed with Celiac and we became a gluten free family. We have enjoyed all your recipes over the years but I had not checked in recently because I too was diagnosed with stage 1 BC last August. I had a double mastectomy to flat in October with no chemo or radiation. My son requested your pumpkin pie muffins today and I was so surprised to read how similar our paths have been this past year. I am in physical therapy now trying to deal with issues on the non-cancerous side as well. If you ever want to chat please feel free to email!
Stephanie, thanks for sharing your story with me. I would love to connect.
Kristin, thanks for your comment and for sharing your story here. Pema is such a treasure and I love her writings, especially When Things Fall Apart. I LOVE what you said here: “too often these days we portray what is not true, but what we wish it to be”
Thank you for sharing your journey so bravely and clearly. I, too, had breast cancer and two separate mastectomies. I know this is difficult however, your journey is more complicated than mine and I am sorry this is true. What amazes me is how you kept up your helpful and educational website during this very difficult time. When I was going through my surgeries and recovery the one thing that helped is baking. Your website was always my first go to for recipes.
May you heal and be well. Teresa
Teresa, another BC sister in our club. Thanks for your kind words about me and my work, appreciate the support.