Breast Cancer Retrospective By Elizabeth Hurlow-Hannah
This was written in 2009. I lost my “Stage IIIA Breast Cancer Survivor” status in late October, 2015 when I had a bone metastasis to my cervical spine. For THAT story, please look at https://www.caringbridge.org/visit/elizabethhurlow-hannah
“The tumor from your mastectomy tissue is about eight years old. It’s invasive lobular carcinoma–estrogen receptor positive,” my surgeon said. He continued, “Remember we sent the sentinel node sample to pathology, and they said it was inconclusive? Further study proved it was cancerous. You need an axillary dissection surgery to remove more nodes.”
Then, he lobbed another bombshell, “You also have to have radiation.” I gasped, and then cried, “I’m 62! What about my 10 years of good mammograms? If I’d been pregnant when that tumor started growing, I’d have a third-grader now!”
How do you like my introduction to Breast Cancer 101? This trial and error learning was born of ignorance and fear. If you can profit from the following, you’ll discover the 10 things I wish someone had told me five years ago.
What activated those cancer cells? Did it start in 1983 after my partial hysterectomy, when Premarin, a hormone replacement therapy (HRT) drug, was routinely prescribed for hot flashes? Or in 2003, when a general surgeon aspirated three cysts in my breasts, and said, “Stop taking Premarin–it’s fueling these cysts!” I flushed the pills down the toilet and went cold turkey, which caused ferocious hot flashes and night sweats because I didn’t wean myself off Premarin more gradually.
Four months later, my gynecologist felt a mass in my left breast. A frenzied week of mammograms, sonograms and a surgical biopsy revealed a tumor. There was no history of breast cancer in my family. I was so obsessed with getting rid of the tumor, that my brain was temporarily grounded, with disastrous results. I refused a referral for second surgical opinions. I didn’t analyze treatment options or long-term consequences, and I never considered the physical trauma to my body.
Cheryl Aylesworth, M.D., my medical oncologist, explained the sequences of breast cancer in the following way:
“A lumpectomy removes the tumor; a modified radical mastectomy removes the breast, and often the axillary nodes,” she said. “Lop it off,” I answered, “I’m never going through this again!” I agreed to the sentinel node procedure, and a radiation tracer and blue dye were injected into my breast at 9 a.m. That afternoon, during my mastectomy, the sentinel node (first to the armpit) was made visible by radiation and blue dye. My surgeon sent a sample to pathology and waited for the results. If the result was “positive,” he would have taken more axillary nodes but the result came back “inconclusive.” A pathologist at another hospital discovered a second tumor in the mastectomy tissue, which vindicated my decision. Dr. Aylesworth continued explaining.
“This can be started after the mastectomy surgery or at a later time.”
“Because your primary tumor extended to the edge of the breast, it’s called ‘a dirty margin.’ Schedule an appointment with a radiation oncologist.
“If your surgeon finds four positive nodes, you’ll need six sessions of chemotherapy, (Adriamycin, Cytoxan and Taxotere), once every three weeks. He or she should install a Mediport in your chest for the intravenous (IV) chemotherapy.”
Was Dr. Aylesworth clairvoyant? Six of the 13 nodes were cancerous. Dr. Aylesworth told me that I would start chemotherapy in two weeks and to expect the following after-effects: “Week One–you’ll feel like hell. Week Two–you’ll feel somewhat stronger. Week Three–you’re almost back to normal. Then the cycle repeats. Hair loss begins a few weeks after the first session.”
I was mortified, sad and self-conscious when my hair came out in handfuls. I recycled my thick hair for bird nests. After the mastectomy, my plastic surgeon inserted a tissue expander into the breast cavity and made the first of a series of saline injections. Eighteen weeks later, my overstuffed breast looked like a balloon ready to pop.
Three weeks after chemotherapy, I started the first of 33 radiation treatments. I was tattooed to help the external beam radiation kill any errant cancer cells, now or in the future. That stimulated dormant hair follicles in my chest, causing an itchy rash, which aggravated the radiation burn on my reconstructed breast. After my final treatment, my health insurance told me that my doctor must wait four months before installing the implant because the breast needed time to cool down after radiation.
I always thought that the reconstruction surgeries in April would bring down the final breast cancer curtain. No one warned me that a minefield lay ahead. When I tripped on it, I was clueless. While visiting family in Portland, Oregon in December, the oversized implant was surgically removed.
Either the axillary dissection surgery or radiation might have triggered lymphedema, an accumulation of lymphatic fluid in my arm’s soft tissue. Since then, I have had physical therapy and wear a prescription pressure sleeve when flying or if my arm gets swollen.
I joined the “Living Beyond Cancer” support community at Gilda’s Club Desert Cities in Cathedral City, CA, in 2006. They identified my crying jags as post-traumatic stress disorder (PTSD), rooted in the aftermath of living through breast cancer. Psychologists say it takes two years to overcome the trauma of breast cancer, hence my obsession with obituaries and mortality statistics. Three of my friends, my dad and his brother lost their battles to cancer. Would I be next?
I call my short-term memory and word-finding problems “Chemo Brain Charades.” Given enough clues, my husband can discover the word I need.
We have been fortunate to travel full-time in our motor home since June 2005, and I transferred my medical records to M.D. Anderson Cancer Center in Houston, TX, in 2007. As a five-year survivor, I will graduate from six-month checkups to annual visits in 2010.
I was introduced to “late effects of cancer” when I was diagnosed with “heart weakness due to chemotherapy and radiation” after a cardiac catheterization at the Texas Heart Institute in Houston, TX, in April 2009. More drugs for life.
And because my cancer was estrogen receptor positive, I complete my five-year program with Arimidex, a postmenopausal drug that suppresses estrogen, in February 2010.
All cancer survivors fret about their future. We thrive on good words like “no evidence of disease” and “remission.” We dread bad words like “recurrence” and “metastasis.” A basal cell carcinoma was surgically removed from my nose this past July, using the Mohs procedure, which has a 99 percent success rate.
To be truthful, I’m terrified that the invasive lobular cancer will appear as a mirror image in my other breast. M.D. Anderson has scheduled a breast cancer surgeon consultation for me to discuss a prophylactic mastectomy. I’d do anything to dodge those chemotherapy and radiation bullets. Statistically, one in eight women will be touched by breast cancer in their lifetime.
Here are 10 things I wish I’d known five years ago:
- Use breast cancer specialists at a breast cancer center.
- Take the time to process a breast cancer diagnosis.
- Get second opinions from specialists.
- Take advantage of the many resources available.
- Be your own advocate.
- Study your health insurance coverage.
- Develop multiple levels of support networks, including oncology social workers.
- Join a support group.
- Study the late effects of breast cancer mentioned earlier.
- Finally, I repeat, use breast cancer specialists at a breast cancer center.
Elizabeth Hurlow-Hannah is a freelance writer based in Bethesda, MD.
American Cancer Society
Army of Women Breast Cancer Research
Dr. Susan Love Research Foundation + Avon Foundation for Women
Dr. Susan Love Research Foundation
Johns Hopkins Breast Center
AZ&Me(tm) Prescription Savings program for people without insurance (AstraZeneca produces Arimidex)
CURE: free magazine for cancer patients 2014 UPDATE – no longer published
Dr. Susan Love’s Breast Book
Gilda’s Club: cancer support communities
Imaginis: women’s health resource website
National Cancer Institute (NIH)
Nellie B. Connally Breast Center, M.D. Anderson Cancer Center
Network of Strength (formerly Y-Me)
Susan G. Komen for the Cure
The Red Devils: supporting Maryland breast cancer patients/families
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