The Haves and Have-Nots of Cancer Care by Susan Gubar

Living with Cancer

The New York Times WELL

March 30, 2017

Maryland House Speaker Michael Busch, a Democrat, spoke at a news conference in Annapolis, Md., on March 8 in support of legislation to continue funding for services provided by Planned Parenthood. Credit Brian Witte/Associated Press

 

When I decided to undergo a lumpectomy earlier this month after a diagnosis of D.C.I.S., I learned a new word that makes me grateful for my privileges but also worried about the privations of others. The word is lagniappe, a bonus, like the 13th doughnut in the purchased dozen. As I went through yet another operation, my way was eased by the kindness of friends and relatives.

The greatest extravagance came from my daughters who gave me their precious time. The younger flew in from New York City, the older from Boston. They were my lagniappes, in a sense: a bonus beyond the gift of having a potential health crisis averted. At my age, 72, and with my history, eight years of ongoing treatment for advanced ovarian cancer, I knew that their presence would bolster me.

At the hospital, I went straight to radiology in order to undergo what is called the Savi Scout procedure. A mammogram machine was used to locate the calcifications that were causing the concern and then a tiny reflective device was shot into that spot. The radiologist used a black marker to ink an X above the spot on my skin. Later, during the operation, a wand placed on the X would activate radarlike waves: Beeping would send my surgeon to the reflector’s location. It would be removed, the technician explained, along with the abnormal cells.

Then I was taken to a preoperative cubicle where I met with the surgeon and the anesthesiologist. I remember being wheeled toward the operating room, positioning myself on a narrow table, and being informed that I was being given something for sedation.

I awoke with the comforting awareness of many gifts: my daughters’ company and also the extraordinary expertise of radiologists, surgeons, anesthesiologists and nurses; the astonishing technologies upon which they relied; my excellent insurance that would compensate them; and my ability to afford the extra services I needed to make the outpatient procedure as easy as possible, including a hired car and driver to take us home.

During that ride, still logy from drugs, I received an email from a reader concerned that the Trump administration’s proposed repeal of the Affordable Care Act would seriously limit the cancer screenings that Planned Parenthood provides. Federal money is already prohibited from being used to pay for abortions, but the proposal would have cut off more than $400 million in federal funding to Planned Parenthood for other services including birth control, cancer screenings and treatment of sexually transmitted diseases.

It reminded me of a time, decades ago, when as a graduate student I went to Planned Parenthood for birth control advice. The doctor found a breast cyst and sent me to the hospital for a biopsy that happily proved the growth benign. How many women examined in these sorts of circumstances have been informed of precancerous cells or early stage disease?

Currently, Planned Parenthood provides more than 360,000 breast exams and more than 270,000 Pap tests every year. There must be thousands of underinsured or uninsured women who undergo routine testing through Planned Parenthood and discover early signs of cancer that can then be treated and possibly cured. The safeguards needed to protect the well-being of this population must not be considered lagniappes. Prevention and early detection should not be bonuses available only to those who can pay for expensive medical coverage.

As most people know, prevention and early detection are life-or-death issues when it comes to cancer. In the case of cervical cancers, as many as 93 percent could be prevented by screening and HPV vaccination, according to the Centers for Disease Control and Prevention. Stage 1 breast and gynecological cancers can generally be cured, whereas at stages 3 and 4 they tend to metastasize until they kill. An economic argument can also be made for prevention and early detection. Complicated surgeries, prolonged radiation and successive drugs become much more costly with later-stage disease.

Some half of all Planned Parenthood centers are in rural or medically underserved areas. In these regions of the country, many women cannot find alternative facilities for cancer screenings.

In my own case, even with excellent health coverage and the presence of my wonderful daughters, the lumpectomy was no walk in the park. I arrived home in a tube top with a Velcro fastener, pink of course. It took a day for me to unfasten it and look down. My right breast was badly bruised, but it was there. Maybe because the port used to treat my ovarian cancer is implanted on the right side, the area around it felt tender.

Yet it astonished me that I did not need post-op pain medication, that the scar was less than two inches long, and that I would soon have full use of my arm. The threat that the D.C.I.S. diagnosis posed has been disarmed. My gratitude is permeated by anxiety about women unable to obtain the care I received.

Thinking of all the physical, psychological and financial costs my family and I incurred in dealing with this diagnosis, I went onto the American Cancer Society website. When could women stop having mammograms and biopsies? The recommendation lifted my spirits: Women are advised to keep on testing as long as they have a life expectancy of 10 years. With advanced ovarian cancer, I do not have such a life expectancy and now — for the first time — I realized that I no longer have to follow the instructions of my well-meaning physicians.

A lagniappe: On the happy day that the legislation to repeal the Affordable Care Act was withdrawn, I determined to stop breast screening and use the amount of money equivalent to what this D.C.I.S. cost my family — in medical expenses, airline tickets, a car and driver — to make annual donations to Planned Parenthood.

Although the effort to repeal Obamacare failed on Friday, by Tuesday Republican leaders were trying again, so Planned Parenthood’s funding is by no means secure.

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