It’s been four years since I finished my treatment for breast cancer—long enough for me to forget to be on high awareness mode and always take a friend when dealing with the world of hospitals and labs, even if things look relatively straight forward. After all, for four years, my routine mammograms had been clear.
Then, this past January while vacationing alone in Fort Lauderdale, I found a lump (explitives deleted). Thoughts assailed, almost simultaneously:
#1: I still have two weeks in glorious 70-80-degree weather while at home in Michigan temps are diving below zero….
#2: The lump is in the same breast that has survived three surgeries—two lumpectomies and one sentinel node removal—maybe it’s just scar tissue.
#3: What if it’s…cancer!?!??
#4 Yikes! What if I need surgery? My dad (a plastic surgeon) used to hate operating on radiated tissue. What if a radiated breast can’t heal? (Much later, after everything that follows here, my surgeon assured me that she could operate on a radiated breast, but the scarring would be worse.)
#5: More surgery on that side would no doubt result in huge, possibly life-long lymphedema in my right arm—the one I need to make art and books and support myself.
#6: What if I had to have chemo…I lucked out the first time, with just radiation.
What to do?
I decided, after some long walks on the beach, to wait until I got home in February and just get my annual mammogram, scheduled for March, a month early. That way I would relieve my mind if I was fine, and get the thing early if I wasn’t. I would remain calm and not ruin my remaining days with worry. And I wouldn’t tell anybody. Yet.
I thought, if I’m ok, why ruin my beautiful Florida vacation, and if I’m not ok, why ruin my beautiful Florida vacation?
Makes sense, doesn’t it? A simple solution.
Week One and Two
I stay in Florida, enjoy my vacation, and two weeks later, drive home.
What follows is a 12-Step program I hope never to do again:
1) When I get home in February, I call the Women’s Center lab to make an appointment for my annual mammogram at the same place I have always gone. They say (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) it hadn’t been a year yet so my insurance won’t pay for it. I say that I thought I’d felt a lump and wanted to get my mammogram a month early. They say I need my surgeon’s orders for that.
2) So I call my surgeon’s office and I’m told (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they will fax the order to the lab.
3) Two days later, I call the Women’s Center lab to make the appointment. They tell me (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) that they never got the fax from my surgeon’s office and that they don’t give out their fax number to patients.
4) I call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear) I am told that they don’t have the fax number of the Women’s Center. What? I say. Lots of patients in this office use the Women’s Center! Well, we don’t have it. Ok, I say. Just send the orders to me in the mail. So I am told they will send it to me in the mail, after I give them my address, which apparently isn’t in my file?
5) I call the Women’s Center for the 3rd time and (after ten minutes on hold subjected to painfully staticky music and ads over my cell phone) I tell them I will bring in the doctor’s order and they let me make an appointment for a diagnostic (remember that word) mammogram, the first appointment available being in a week.
I am still pretty calm, but I am getting irritated. How much hassle and anxious waiting can a high-risk breast cancer survivor take? I finally decide I need a support group and I share my discovery and concern with my guy and my best friend, who remain calm.
6) A week later, I still haven’t received the orders from the surgeon’s office and my appointment is in an hour. I frantically call the surgeon’s office and (after ten minutes on hold, with staticky music and ads in my ear), I am told not to worry, they are faxing it over to the mammogram lab right now. Somehow my breast cancer specialist surgeon’s office has discovered the Women’s Center fax number.
7) I arrive at the Women’s Center mammogram lab. I wait not much longer than I am usually on hold here, except there is no music or annoying advertising in my ear. A tv screen is running a video ad but I don’t look at it.
8) A very young tech with a bouncy manner takes me into the dressing room, where I change into the usual open-in-front (thankfully cloth, not paper) top gown and shortly I am in the mammogram room. It’s a different machine, I note: the new digital machine. I’m asked to tape a tiny bb to the place where I feel the lump. My breasts are then mashed between two transparent plastic plates, which the tech closes tighter and tighter with a foot pump. I don’t mind. I’ve been through so much worse. Just tell me I’m ok.
The perky tech lets me look at the pictures on digital screen. I see the bb is right in the middle of what looks like a small smiling scar. There are larger scars as well and I can see the row of staples that were used to hold the internal incisions together and are still there. I can’t see anything in any of the pictures that looks lumpish. I am relieved.
I asked the tech if she could have the mammograms read while I wait. But no, she says, the radiologist is not in. But, she says, (and this is important): “If there is a problem, we will call you in a day or two. Otherwise you will get the results in the mail in about a week.”
Do these people know how we whose lives are at stake here hang on every single word? Don’t they realize that what they say or don’t say is important? This is a Woman’s Center. This is a Mammogram Center. The last time I came for a diagnostic mammogram, I was diagnosed with cancer.
“Oh dear,” she says, hearing the word “diagnostic.” “This mammogram has not been tagged as diagnostic. If it’s not, your insurance won’t cover it, since it hasn’t been a year since your last one.” She leaves the room and comes back declaring that she has done something on the computer that has changed the tag from routine to diagnostic. Whew!
This tech, though seemingly awfully young, is courteous and kind and she lets me see all the pictures, which is a first, but she misspoke.
9) I am feeling pretty stressed as I wait for my lab results, but I have been here before. As the days pass….day one, day two, day three, day four, day five….I begin to relax. After all, if something was wrong, they’d have called by now, right? That’s what the tech said and believe me, I was listening.
10) Day six, almost a week later (still no report in my mailbox), I get a call from the Women’s Center. I am to come back in for more tests right away. How about tomorrow morning at ten?
I stop breathing.
Somehow I manage to ask the caller if the mammogram had been positive, but she would not tell me. “I can’t give out that information,” she says. “You just need to come in for an ultrasound.”
This time, after I hang up, I lose it. Finally, for the first time, I weep. I weep just writing about it. I feel the blood in my body replaced by a gush of explosive anxiety. I call my brother. I call my girlfriend. I beg comfort from the man in my life. No one knows what to do with me.
11) Day Six of Week Five: I go back to the Women’s Center for an ultrasound. Two girlfriends have volunteered to go with me but, knowing that an ultrasound is painless, I turn them down. A mistake. When I am this anxious, I really need someone to be there, not just for support but to observe, be a second pair of eyes and ears, a witness. But I worry that I’ll break down and embarrass myself. I don’t want to be observed myself.
The tech for the ultrasound is a mature person who immediately tunes in on what I’m feeling. It turns out she is a two-year breast cancer survivor herself. I am by now having a hard time keeping it together. She does the test thoroughly and afterward I ask her if I will have to wait another week for the results.
“Probably,” she says. And I choke out, “I want to see them now.”
“I understand,” she says. “I’m not going to let you leave here like this. I’ll see what I can do.”
Not more than five minutes later (less time than I am usually kept on hold and subjected to staticky music and ads), the tech returns with the radiologist, who is looking annoyed. “Your tests are all fine,” he says.
“You mean, the mammogram was negative as well? No tumor?”
“Both the mammogram and the ultrasound were clear,” he says.
“If the mammogram was okay, why was I called back in?”
“It’s protocol,” he tells me. “If there’s a question of a lump, we have to do a mammogram and an ultrasound, followed by a visit to your doctor.”
“SO WHY WASN’T I TOLD THIS?”I ask. “Why was I led to believe that my cancer had recurred?”
“It’s protocol,” he says.
And what was the lump?
“Scar tissue from the sentinel node dissection.”
12) Normally after receiving good mammogram news—my “get-out-of-jail-for-another-year” card—I celebrate. I go out and party with my friends. This time, though, after calling whoever knew by now and letting them know I was okay, I still can’t stop shaking inside. I read online an article published online this very day about a study of the cortisol levels of women waiting for the biopsy results. Women who were made to wait over 5 days for their test results, whether the news was good or bad, had the same high cortisol (stress hormone) levels as women diagnosed with breast cancer. There was concern expressed that these high cortisol levels threatened these women’s resistance to disease and, if they actually needed treatment, made their recovery more difficult.
(Even without the two weeks I waited to begin this process, if I’d had to wait another week for the ultrasound results, it would have been a MONTH from my call to schedule a mammogram to the day I got my results! It’s not hard to imagine what my cortisol levels would have been then!)
This week, I find myself depressed and weepy. I do irrational things and take offense at things that, I find out later, have a much different explanation than I assumed. I come close to offending friends and clients. I work out at the health club four times this week, trying to let off steam.
Hallelujah, I am OKAY! At last, I am back to normal and feeling so lucky to be in this world and not re-diagosed with breast cancer. I decide it’s time I volunteered at the Literacy Center. Time I gave a party. Time I thank my friends and family for still being there.
•Bring a friend, especially if it’s a diagnostic test.
•Ask if there is anything you should know, such as the PROTOCOL for that procedure.
•Bring a friend.
•Insist on being treated humanely.
•Find a mammogram center that offers reasonably quick results. You’d be surprised how many centers there are within a four-hour drive—easily worth it to get that-day results—and they are competitive. Not all centers keep you waiting a week and insurance is good at all of them.
Now, I find that I really don’t mind that cold late winter weather. I’m reassured that my post-radiation treatment choice of careful diet (mostly vegan), exercise, and high quality of life really has been, for me, so far, the best medicine.
A NOTE: Yesterday I got my cell phone bill: $60 for overtime minutes, in addition to my regular bill, the first time I have ever paid for overtime minutes in two years.