Rachelle Linner’s narrative of her cancer experience is infused with gratitude. She’s convinced that it was a miracle that her triple negative breast cancer was discovered when it was stage 1.
Rachelle’s Story
Linner, 66 at the time, had an abnormal screening mammogram in December 2015. A follow-up diagnostic mammogram showed calcifications suggestive of ductal carcinoma in situ (DCIS), but a core biopsy was negative. A repeat diagnostic mammogram in June 2016 showed additional calcifications and the radiologist recommended a wire excision lumpectomy. That was done in August 2016 and revealed an invasive ductal carcinoma which was not visible on mammogram. The pathology report revealed it to be stage 1, grade 3, triple negative, and she was told she would need both chemotherapy and radiation. Ultimately, she had 5 months of chemo and 33 radiation treatments.
“I feel like the radiologist saved my life,” Linner says. "If we had waited until the tumor was visible on mammogram it would likely have metastasized and been much more difficult to treat.” Because the tumor was occult her case was presented at tumor review board of two Harvard teaching hospitals. “I didn’t need a second opinion,” she said, “since I had 50 of them.”
She is only half-joking when she says she had a placebo reaction to her medical oncologist, Lowell Schnipper, M.D. (His wife, oncology social worker Hester Hill Schnipper, is a two-time breast cancer survivor; she wrote the excellent After Breast Cancer: A Common-Sense Guide to Life After Treatment.) Linner appreciated his clear explanations of the protocol, the fact that, because triple negative breast cancer is aggressive, chemotherapy is very effective in treating it. “I am one of the few people I know who preferred chemo to radiation because I wanted it treated systematically.”
She is also grateful that she had excellent health insurance. “I often think that this was the only time I could have had cancer and not been bankrupted by it. I paid $600 out of pocket and Blue Cross paid over $200,000 with no deductibles, copays or annual caps. It is still astonishing to me. My very generous employer let me work from home 25 hours a week, with full benefits, which allowed me to maintain my professional identity and not become a full-time cancer patient. And I was able to afford weekly acupuncture treatments, which helped with symptom relief and gave me a sense of emotional and physical well-being.” As a volunteer with Cancer Health Network, she has seen how challenging it is to navigate finances, insurance, and workplace issues.
The Benefits of Community
“I am single, and I never doubted that my community of friends would support me in this, but I was overwhelmed by the gifts I was given — prayers, especially, but practical help too — rides to medical appointments and shopping, books, food, movies, and visits. A few months after I finished treatment, I hosted two open houses to thank people, a way to ritualize my gratitude and mark the transition back to ‘normal’ life.”
When asked about the lessons learned from her cancer journey, she speaks of it as a pilgrimage. “I’d never been sick before and it was the first time in my life that I allowed myself to be indolent, and I learned I was good at it!” She regrets she tried too hard to be a “good cancer patient.” “I think I indulged in magical thinking, that if I was an obedient patient the treatment would ‘work’. I put too many expectations on myself for how I was going to handle cancer.”
Looking Ahead With Gratitude
Triple negative breast cancer has a high recurrence rate (34% in the first 3-5 years) and she saw an oncologist every 3 months for 5 years. “I had to deal with my fear of recurrence and inevitable ‘scanxiety’ that such visits entailed. Now I see my medical oncologist twice a year for five years and will be completely finished with surveillance in 2026.”
Linner retired in 2019 and is currently a spiritual director and freelance writer. She’s been a Cancer Hope volunteer since 2020. “I’ve worked with many volunteer organizations but none as good as Cancer Hope Network. I am so impressed by the staff, the training we received, ongoing education, volunteer roundtables, the willingness to discuss any problems, and the very suitable matches I’ve received. I love the opportunity to accompany people on their cancer journeys and share with them what I’ve learned.”
- The hardest time is between learning you have cancer and beginning treatment. Once you start you regain a sense of agency.
- Don’t be surprised if you feel depressed when you finish treatment. Just because you are finished with treatments doesn’t mean you can resume a normal schedule.
- A cancer diagnosis causes people to feel out of control. Anything you can do to assert control over your life helps. Ask for the kind of help you want and say no to what you don’t want. You might choose not to tell certain people in your life. That’s okay. This is your experience.
- You will become weak but eventually, and slowly, you will regain your strength; try to exercise even if you can only walk 20 minutes a day during treatment. After treatment consider asking for a referral to physical therapy for cancer rehabilitation.
- Avoid the Internet and don’t read anecdotal stories about other people’s experience. Consider joining a support group, which are often run by trained social workers.
- Learn to love chemotherapy and evidence-based Western medicine. Give thanks for the many skilled professionals who are laboring on your behalf, from bench scientists at pharmaceutical companies to physicians at the FDA, from patients volunteering in clinical trials, to the skilled nurses and physicians who care for you. But don’t be a Pollyanna - there are real, negative consequences to the business of American medicine.
- If you can afford it, consider complimentary treatments: acupuncture, yoga, meditation, Reiki, massage.
- You’ll be surprised how good you look bald! And your hair might grow back a different color or texture.
- Report symptoms to your medical team so they can be treated. If your oncology team isn’t responsive to treating side effects, ask for a palliative care consultant to help with symptom relief. People underutilize palliative care because it is mistaken for hospice. All hospice care is palliative care but not all palliative care is hospice care.
- Don’t be surprised if people avoid you or pretend you don’t have cancer. Some friends and family will disappoint. It’s not about you, it’s about them. Others will surprise you with astonishing loving support. Keep a list of awful things that people say; it will make you laugh, and laughter is good.
- Let yourself feel your feelings. See a therapist if you need to - help helps. Eat well. Stay hydrated. Consult a nutritionist.
- A cancer diagnosis is not a death sentence. But it’s not a bad thing to acknowledge your mortality. Think of a diagnosis as immigrating to a new country. You have to learn a new language, new customs, adapt to new neighbors, and new ways of being. It’s not a terrible place, this country of cancer. You can find extraordinary beauty and grace hidden in the nooks and crannies.
- Cancer is not a moral issue, and you didn’t do anything to get it. You have a disease of cell biology. We are biological beings, and we get sick. Avoid mythologizing cancer.
- Cancer can lead you to evaluate your life and make changes. Some people plan major trips or fill out a bucket list. But you don’t have to change; you can go back to your ordinary life with greater appreciation and joy.
- Don’t set unreasonable expectations for yourself. If you don’t have expectations, you will be less likely to be disappointed.
- If you have the energy indulge in distractions.
- Fear of recurrence is a universal experience. Don’t judge yourself. Don’t expect to handle it “perfectly.” There is no perfect way to experience cancer. It is hard but not as hard as it is sometimes portrayed.
