I Get the News All Women Dread

 

In December of 2002, my world was ripped apart when I was told, at the age of 56, that I had breast cancer. It happened during my mammogram.  It had been two years since my last one; my primary care provider had moved out of state; and I’d been slow to identify another.

In the course of the procedure, I knew something was amiss when the radiologist was called in.  She began calling co-ordinates to the technician who jotted everything down, while I quaked.  I finally asked, “Is something wrong?  Do I have cancer?”  She replied:  “I think when the test results come back, we’ll discover that you do…But I think it’s cancer in its earliest form.”

Next, she asked me if I had a general surgeon to whom I could go, and when I said “No,” she pressed a card with a surgeon’s name into my hand, saying “That’s who I’d go to, if I needed this type of help.” She also recommended I have a stereotactic core needle biopsy, as soon as possible.

I was immensely grateful for her help.  After all, she’d given me the name of a person whose skill she admired. She took the step to make sure I had that name.  As a result, I called that doctor the next day.

My first visit to the surgeon was for consultation and discussion of the mammogram, and ultrasound results, as well as recommended course of treatment.  At this meeting, a physician’s assistant took me into a hallway between examination rooms and slapped up my film, on a device that illuminated it.  She then proceeded to point out the white dots– the signs of cancerous invasion.

Inwardly, I marveled at the insensitivity of all of this:  Here was this professional, showing me my cancer on a screen, as calmly as if we were the opening segment of the medical TV show, “Scrubs.”  The only problem?  My knees were buckling, and I wondered why she couldn’t have shown me this in a more comfortable, private setting.

When my general surgeon discussed procedure with me, she told me she recommended a tandem operation, whereby she’d amputate the breast, and then the plastic surgeon would come in to put in the expander, readying the site for future reconstruction. Her office set up my next appointment with that plastic surgeon.

At my first meeting with him, he asked me why I’d come to him, and I said “Because I have breast cancer– Ductal Carcinoma In Situ (DCIS), to be exact.” It was then he stated matter-of-factly “That’s not cancer.” He went on to argue that DCIS is a pre-cancerous situation, while I wondered why he was so intent on winning a semantics game.

As patient, I didn’t care about precise terminology and whether it fit his purist’s definition.  I simply wanted the problem ‘gone.’ I knew, too, that the hospital board would never recommend mastectomy unless they thought it were necessary.

Boards of hospitals are simply never that generous; they authorize procedures only when they believe they’re warranted.

No, the plastic surgeon was simply preening and showing off.  On a follow-up appointment with my general surgeon, I told her what he’d he said and how it had upset me. She appeared surprised and said she’d speak to him about what she characterized a ‘miscommunication.’

But I’d learn:  Communication problems with this gifted surgeon would hardly be confined to one incident.  There’d be a far more alarming one on the horizon.

On one of the earliest occasions, I came home from one hospital test when I’d had the stereotactic core needle biopsy, whereby one puts her breast into an opening in the examination table (it’s huge, as in “one size fits all”), local anesthetic is applied, and the radiologist probes the breast, from below, with a needle, harnessing ultrasound equipment, to determine exactly where to inject and take samples.

The procedure goes on for approximately one hour, during which time the patient must lock into position without moving. This procedure determines where the outer perimeter of the disease is thought to be—prior to surgery.

Finally, I was told that I could get up, with the enjoinder, “Don’t look down,” coming too late; I’d already seen the carnage below; my blood, bright red against stark white sheets lay in the hole. I went home that day, following five or six hours of testing, with a bloodied bandage on my breast suggesting a gunshot wound.

I was at war with cancer.

Following the core needle biopsy, the news came in:  There was complex activity throughout the breast, considered Ductal Carcinoma in Situ (20-25% of breast cancer detected with mammograms is DCIS, I learned.) The cancer was thought to be confined to the ducts of the breast and non-invasive, concurring with the radiologist’s preliminary assessment.  However, there could be no clearer diagnosis until surgery.

The only course of action recommended was mastectomy, with reconstruction, if I chose.  My doctor explained that my case, along with her diagnosis and prescribed treatment, would come before a review board for their consensus.  I was encouraged to go for a second opinion, if I wished. With that, I sent my records to my brother’s colleagues, oncologists and surgeons at his medical facility, in another state. They concurred with my doctor’s assessment:  The breast had to go.

The day before surgery, I arrived at the hospital for a nuclear injection whereby a dye was injected into my veins, to provide a visual roadmap of the course from breast to lymph nodes, facilitating sentinel lymph node dissection, to determine if the cancer had become invasive. Twelve hours later, I went in for surgery that would put an end to any remaining questions.

Paul and my daughters spent the entire day in the hospital waiting room, awaiting the outcome of the surgery.

When I awoke in the recovery room, my chest felt as if an anvil were on it, and I had trouble breathing.  I barely mumbled what I felt when I began wretching a green, viscous fluid.  With each convulsion, I endured blinding pain, as new stitches strained.

Cardiac specialists were summoned when staff in the recovery room feared I might be in the throes of cardiac arrest.  All awaited tests on my blood enzyme levels.

They determined, in due course, that my vomiting was a reaction to anesthesia. After a prolonged period, I ended up in a crowded Intensive Care unit with high towers of machinery blinking about. I was heavily medicated and recall little of that period.

At the end of two days, I was moved to another room whose only other occupant was a man, a diabetic who’d lost both legs, beneath the knees.  At one point, in his movements, he shifted the sheets, exposing his private region, and I was shocked, indeed. I had always thought hospitals operated with the rule:  Male and female patients are assigned different rooms.

When I told my older daughter of his physical condition (when she visited me later,) she offered: “Hmmm…He has no legs, while you have no breast.” “Mom, it’s like you’re in the Land of the Misfit Toys.”

Following my brief room assignment with him, I was discharged.  An orderly brought me down to the sidewalk, in a wheelchair, where the family car awaited.

My mastectomy and attending crises had resulted in two nights in ICU and a few brief hours in the step-down room.  Then I was apparently deemed fit for dismissal.

The irony was:  Had I voiced an inability in taking care of myself (as in “I can’t do these drains,”) I would have gotten more in-hospital time.  Instead, I was discharged, with the plan that a visiting nurse would come to my home, once a day, over the next week, to change the drains and check my vital signs.

I’d learn from this, too:  There’s such a thing as being ‘too able.’

Now, I am 16 years out from a diagnosis I thought would bury me. I was made as whole again as is humanly possible and I must say, I looked better after than before (chuckle…chuckle.) I share that news with audiences.

And, too, I met many women at Dana Farber (I ended up there for a a tie-breaking opinion when my doctors were dueling regarding drug therapy)—women who were successfully beating stage 4 cancer.

I know I missed posting this for October Breast Month (blame my book, Boomerrrang’s final edits), but Hell, as far as I’m concerned ALL months are critical. My yearly mammogram is coming up, one always fraught with concern, but I’ve already had extension of my life as a result of that procedure.

I encourage all women (because my doctor says younger women are presenting with breast cancer,) to make your appointment today, and if you have any questions, feel free to PM me. I’ve already accompanied some of you on this journey.

P.S. I learned to ask for anti-nausea medication during surgery (my surgery last 6 hours) in all future operations, since hospitals don’t give you that automatically and you don’t want to be coughing up in recovery, as I did. In next 18 months, I underwent 3 more procedures and all went well.

I also learned what worked and didn’t work with reconstruction.

If you’re on this journey, I feel for you but take heart: There are many of us out here who have already made this journey.

***Please feel free to share this post with other women (men are diagnosed, too) to give them hope. I apologize if the Share box doesn’t work…I’m getting website updated soon. In meantime, copy and paste the link.

 

 

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