When a cancer diagnosis comes it’s always a shock — and Dr. Loraine Alderman was no exception.
What did surprise her, however, was that among the literature she was reading, she wasn’t finding stories about people like herself, even though she fell into the age group of women most likely to be diagnosed with breast cancer.
According to the latest data from the American Cancer Society, one in eight American women will be diagnosed with breast cancer. It is the second leading cause of cancer death in women.
At 58, Alderman was only four years younger than the median age for breast cancer diagnosis.
Much of the literature she was encountering, however, focused on narrower segments of breast cancer patients, important patient groups, just not ones that Alderman belonged to.
She learned valuable information, but it didn’t apply to her. “If you’re under 40, fight for your right for a mammogram; and if you’re non-Caucasian, fight for your right to a mammogram,” she writes in the introduction to Breast Cancer: Guidance, Advice and Personal Journeys.
Literature in recent years skews toward population segments whose overall rates of cancer are lower, but for good reason.
For women under 50, the incident rate for breast cancer is growing at a faster percentage (1.4%) than for women over 50 (1%). That increased incidence rate can also lead to an increase in mortality. Because younger women, especially those under 40, are not regularly monitored for breast cancer, by the time a diagnosis arrives the disease may be in a more advanced stage.
Among black women, statistics are particularly troubling. They have the highest death rate from breast cancer across all ages, in part because they are at a higher risk for triple negative breast cancer. So are Ashkenzic-Jewish women, who have a 2.5% chance — about 10 times higher than the general population — of carrying the BRCA1 or BRCA2 genes.
While treatable, triple negative breast cancer has a higher mortality rate due its rate of growth and recurrence.
As a 58-year-old Caucasian diagnosed with invasive ductal carcinoma and ductal carcinoma in situ, Alderman wasn’t seeing herself in the autobiographies she was reading.
During her long career as a school psychologist in the New York City school system, Alderman had written a number of books focusing on learning disabilities. So following the period of active cancer treatment, once she felt up to it, she decided to put pen to paper and write the kind of book she had been looking for when diagnosed and throughout her treatment.
Her goal, she tells the IJN, was a book that could serve as a guide for people facing a breast cancer diagnosis. For Alderman, that meant real life stories with applicable tips.
She collaborated with a medical doctor, Kit Cheng, and a psychologist, Katy Genseke, to publish what acts as a casual, unintimidating reference book — for patients and caregivers alike.
A highlight of the book is the chapter entitled “Personal Journeys.”
These are brief presentations by a wide gamut of breast cancer patients divided into three or four parts —
• diagnosis and treatment;
• top most helpful things;
• top most unhelpful things;
• the individual journey.
Each writer brings her own voice and experience — some focus on family relations, others on nutrition, others on the details of their treatments.
Presented in this bite-sized format, a reader can easily ascertain if a personal journey will resonate. If it doesn’t, the reader can simply flip a few pages and move to the next one.
Often following a diagnosis, feedback and advice follows. While almost always well-meaning, it can be overwhelming for patients dealing with what Genseke terms “the shock of diagnosis.”
Breast Cancer’s format allows the patient to choose whose advice he or she wants to hear or to navigate to the checklists he or she may find helpful.
The book isn’t only anecdotal. There is a robust chapter on nutrition, an excellent chapter oriented for family and friends confronted with the diagnosis of a loved one, and a glossary of all the acronyms a patient may confront in the course of their cancer diagnosis and treatment.
One of the most powerful chapters is the one on survivorship, the phase of a cancer journey that is often overlooked by non-cancer patients. There are the long term side effects, which can include physiological ones like weight gain, and emotional ones like grief.
While academic-based, these longer chapters are written in layman’s language and make use of subheads throughout, again, making it easy for a patient to access the information he or she might be looking for.
This may seem trivial, but for patients undergoing treatment, dealing with lower energy, fatigue and brain fog, simple layout decisions like section headlines and bullet point lists make Breast Cancer highly useable — which is Alderman’s goal.
The book feels like a place where breast cancer patients are heard, where everyone speaks the same language, even if they have different perspectives.
“These stories are not included to tell you what you should do,” writes Alderman. “They are not meant to overwhelm, compare or prescribe. Instead, they are offered as companions.”
In a journey that can often times feel lonely, companions can offer a healing gift.
