A rose bush from our garden. Photo: Miriam Díaz-Gilbert
In a recent post, I shared how my breast cancer journey began— tripping on an uneven sidewalk. This incident propelled me to get an x-ray of my rib and a mammogram. My rib was fine, but my mammogram revealed suspicious findings. A stereotactic biopsy revealed a DCIS (ductal carcinoma in situ) diagnosis.
In this piece, I share my surgery experience, my recovery, and my decision about other treatments—endocrine and radiation therapy. Seventy days after I fell, I had a partial mastectomy, also known as a lumpectomy. I had an early morning outpatient surgery on June 3.
Surgery Day
I’m happy to say my right breast partial mastectomy went very smoothly. I don’t take pain medicine. I also have eleven drug allergies. I was given only Tylenol by my lovely young nurse while waiting in pre-op. She also confirmed a fact I had read about. More and more younger people are being diagnosed with breast cancer and colorectal cancer. She said it is so sad to see. Some die. I identified with both cancers. I was having surgery for early-stage breast cancer. My husband Jon is a two-time stage IV colorectal cancer survivor and thriver. I am happy to say he is in remission.
Before surgery, I was also visited by a very young and nice anesthesiologist, an avid cyclist. He shook his head when he read in his notes that I run ultramarathons. But he understood why my vitals, including my blood pressure, are so good. We chatted about cycling and running as he inserted the needle in my left arm vein. He told me I would be given a twilight anesthesia and that I would be conscious, hear them talking, but feel no pain during my surgery. I thought that was odd.
Next, my surgeon came to quickly make sure I was her patient and to check the tiny tattoo marking on my right breast where the cancer was located and where she would make the incision.
She also said I would be under twilight anesthesia, as did the nurse anesthetist. Again, I thought being under a twilight anesthesia was odd, but I had experienced a type of anesthesia in 2012 where I was wide awake, while a very cheerful interventional radiologist had me lying on my belly while he and his team chatted with me as they painlessly inserted a nephrostomy tube in my left kidney and strapped a urine bag to my left thigh to drain the urine from my kidney. I would walk the earth with the urine bag and nephrostomy tube for seven weeks before having surgery to repair my transected ureter. The surgery was a success and I got my life back. You can read more about my laparoscopic hysterectomy nightmare here.
Unlike my hysterectomy, my partial mastectomy was a success. I felt no pain when I woke up. But I realized I had not experienced twilight anesthesia. I had experienced what I had experienced in my previous surgeries and during my over thirty endoscopies—propofol and a deep sleep. I woke up realizing I had been knocked out and had not experienced twilight anesthesia.
It was a bit jarring. I was annoyed that I was not given a warning, like “Miriam, you’re going to start feeling sleepy.” Any semblance of control was taken away without warning. Other than that, the surgery experience was a positive one.
Post-op Recovery
I woke up in the recovery room to a very nice post-op nurse. She asked how I was feeling, checked my vitals, and offered me the usual hospital fare—processed snacks and drinks that contain preservatives, additives, etc. that I cannot have. Here’s why. I told her that my husband Jon had packed what I could eat. The food was delivered to me. I had a piece of my homemade organic bread, a small carton of Vivonex, and my electrolytes hydration bottle, the same one that I run with.
She asked what Vivonex is. I explained it is full elemental nutrition made of amino acids. She also learned how I healed my eosinophilic esophagitis (EoE) when I eliminated chemicals from my diet. We also chatted about flower and vegetable gardening. We both love to garden. After I finished eating my piece of bread and drinking my Vivonex and electrolytes, she removed my gown to show me the wrap around my breasts and chest.
It looked like a thick and stretchy tube top. I would need to keep it on for twenty-four hours. I could not shower or bathe during this time. A white shoulder strap over my right shoulder was pinned to the tube top.
Sporting a surgical tube top before getting dressed and going home.
Recovery at Home
I was sent home with a surgical bra that closes in the front with velcro. I would need to wear it for two- to three days. Twenty-four hours after surgery, Jon helped me to unravel the tube top. After removing it, I measured the length of my “tube top.” It measures six yards long and six inches wide.
I unraveled the tube top and discovered loose gauze glued to and hanging over the incision.
I was ready to shower but not allowed to remove or pull the gauze; it would peel off on its own.
I wasn’t allowed to push, pull, and lift anything over ten pounds for two weeks. But I could do everything else I love to do, except run.
My recovery at home went very well. The day after surgery, I went out for a two-mile walk with Jon. Five days later we spent the day at the beach. Since my partial mastectomy on June 3, I have walked over seventy miles. Walking and movement is so important in the healing process and in staying strong.
Doing what I love continued during my recovery. Jon helped me with tending to my hens Faith and Gracie, and watering our flower and vegetable gardens the first couple of days. Then I was on my own to continue my routine. I also painted my sixtieth painting and baked bread.
I never experienced any pain or discomfort, only a temporary rash under my right breast which I attributed to the surgical bra. Applying anti-itch cream helped. The incision and the surrounding itched from time to time, a sign of good healing. My breast was a little swollen but never bruised.
Incision site. A steri-strip below it.
I received the pathology report on my patient portal. I have clean margins and no signs of cancer.
Post-surgery Visit
At my post-surgery visit two weeks later, my surgeon removed the last piece of gauze remnant that was still glued to the nice, pinkish incision; it measured a tad over an inch in length. She removed it with an alcohol swab and a tweezer. The incision Is noticeable but not jarring, and the breast area is a little concave.
My surgeon shared that when she performed the partial mastectomy, the cancer—the micro-calcifications— had all been removed when the radiologist performed the stereotactic biopsy. She could see clean margins, which were confirmed in the pathology report.
I asked if I was cancer-free and she said yes. Naturally, I was thrilled.
But I had one more lap to complete—meeting with the radiation oncologist and the medical oncologist to have a conversation about endocrine therapy and radiation.
My Decision
I met with the medical oncologist and the radiation oncologist on the same day in two separate appointments. The medical oncologist did a great job explaining the options to treat DCIS—surgery alone, surgery with radiation, surgery with endocrine therapy. surgery with radiation and endocrine therapy, and the recurrence rate with each option over the span of five years and ten years.
She entered all my data on the computer calculator. The computer revealed the chances of my DCIS recurring in five and ten years.
5-year recurrence 10-year recurrence
Surgery alone 9% 14%
Surgery and radiation 3% 5%
Surgery and endocrine therapy 4% 7%
(Arimidex or Tamoxifen)
Surgery, radiation, and endocrine therapy 2% 3%
I researched radiation and endocrine treatment options before our appointments. After reading about the side effects of radiation, I was leaning against radiation. I also read about endocrine treatments. Arimidex didn't sound inviting. It has some serious side effects like broken bones, pain and swelling of joints, muscles and tendons, numb and tingling skin, and more.
Tamoxifen was definitely not an option. Side effects include hot flashes, weight gain, headaches, and more. I was shocked to learn in my research that Tamoxifen has a black box warning. According to the FDA, Tamoxifen puts certain patients at risk for serious and potentially life-threatening adverse effects.
When I told the medical oncologist that Tamoxifen is a black box drug, she appeared a bit surprised and added that Tamoxifen can cause hot flashes, blood clots, and strokes.
I shared that I have eleven drug allergies, including a severe adverse reaction to Cipro, a black box antibiotic. I was given Cipro in 2012 for a UTI after a nephrostomy tube was placed in my left kidney to drain the urine that caused a small bowel obstruction after the surgeon, who performed my laparoscopic hysterectomy, transected my left ureter. Cipro left me with joint pain and stiffness in my hands, knees, and elbows. I could not lift my shoulders. I was not able to dress myself for eight months. I had Cipro toxicity.
The urologist who prescribed Cipro apparently did not know that Cipro comes with a black box warning and that it should never be given to athletes and runners. I recently learned that most doctors are not aware of black box warnings on drugs they prescribe. It's a good idea for patients to always advocate for themselves, to be vigilant, and to research the medications prescribed. You might want to stay away from medication with a black box warning.
After my conversation with the medical oncologist, I opted for no endocrine therapy. She supported my decision.
After meeting with the medical oncologist, I met with the radiation oncologist. He went over the numbers that the medical oncologist gave me regarding recurrence rates of DCIS with surgery alone, surgery and radiation, surgery and endocrine therapy, and with surgery, radiation, and endocrine therapy.
After a conversation about the stats regarding possible recurrence of DCIS when I am 70 and 75 years old, the successful removal of my very early-stage breast cancer during my partial mastectomy, and his supporting my decision either way, I opted for no radiation.
I also told both of them that I had a conversation with my husband Jon, who survived stage IV colorectal cancer twice in a span of five years. Jon had surgery, chemo, and radiation the first time and went into remission. But the chemo and radiation did not stop the cancer from recurring. The cancer came back—stage IV again. It required more surgery and thirty-three consecutive days (minus weekends) of chemo and aggressive radiation treatments.
I'm happy to say Jon is in remission, again, and doing well. He supports my decision not to get radiation and endocrine therapy.
Cancer-free, Remission, or No Evidence of Disease
I felt confident with my decision to forego endocrine therapy and radiation. But when I got home after my appointments, I realized I forgot to ask both the most important question —am I cancer-free? I emailed them the question.
The medical oncologist shared that she considers me cancer-free. The radiation oncologist prefers to use "remission" or "no evidence of disease" because there is no evidence that there is cancer remaining in my body. However, both reminded me that there remains a small possibility that disease remains in my body, and of the risk of recurrence.
Cancer-free, remission, and no evidence of disease is confusing terminology. Call it what you want. I'm just glad they all describe me.
Final Thoughts for Now
While a woman can't be a little pregnant, I've learned she can get a "little cancer;" that's what happened to me.
Had I never fallen on an uneven sidewalk on that one day in March, I would not have known that I had a little cancer that could potentially become a bigger cancer. My little cancer, compared to Jon's stage IV colorectal cancer, was nothing.
However, my role as Jon's cancer caregiver, trips to the hospital during his surgeries, and chemo and radiation treatments, prepared me for my small cancer journey— a walk in the park. Like Jon, I also had an excellent cancer team. And as Jon says, "We are both like Marvel super heroes. We are indestructible." It's helpful to have a good dose of positivity and humor.
Everyone's cancer journey is different. Since being diagnosed in May, I have been reading The Emperor of All Maladies: A Biography of Cancer, a fascinating 400-plus page-turner by oncologist/ hematologist Siddhartha Mukherjee. I'm learning so much from this book. Cancer and ways to fight cancer have been around since the beginning of time.
Mukherjee writes,
"The first medical description of cancer was found in an Egyptian text originally written in 2500 BC: "a bulging tumor in [the] breast...like touching a ball of wrappings." Discussing the treatment, the ancient scribe noted: "[There] is none."
Cancer is complex and complicated. There are so many kinds of cancers; some easily treatable and non life-threatening. DCIS is one of them. Early detection is key in some cancers. Some cancers manifest themselves without symptoms. Many cancers are challenging, and some are devastating.
My brush with cancer has propelled me to want to learn more about cancer. I am curious about cancer. As Jon's cancer caregiver, I had one perspective of cancer. Now, as a cancer patient, who will not skip future mammograms, I have a new, more intimate connection to cancer.
While healing, I read Making Sense of Cancer. Its author, Jarle Breivik, a professor of medicine and cancer researcher, sent me a copy after he saw my post about my cancer journey on social media. I learned so much more about cancer and why we get cancer. This book is another eye-opener. Here's my review.
Everyone's cancer journey is different. I was very lucky. I am very grateful. I hope that my cancer story and Jon's cancer journey motivate you to get that mammogram and colonoscopy. Don't delay. Schedule it today.
And I'm glad to start training again for my next ultramarathons in October—the Hainesport 12hr, ultra no. 40 and the BadgerPalooza 12hr, ultra no. 41.
©2024
I am the author of Come What May, I Want to Run: A Memoir of the Saving Grace of Ultrarunning in Overwhelming Times. Jon's cancer journey and my journey as his caregiver are themes in my book. Order it here from the publisher, Wipf and Stock Publishers, Amazon, Bookshop, and Barnes & Noble. It's available in hardcover, paperback, e-book, and Kindle.
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