Tag Archives: breast cancer

I love electronic medical records

Hubs and I are going out to dinner to celebrate a five-year anniversary. Not ours–we’ve been married mumble-mumble years now. A different anniversary.

In the fall of 2008, I was diagnosed with breast cancer. I had the whole treatment shebang — surgery, chemo, radiation. And now, a daily pill to suppress the hormones that fed my particular brand of the Big C.

This past week, I had my five-year mammogram and…all is clear! I wish fireworks could shoot off or confetti thrown…or something! At the end of each treatment step, there were little celebrations. The nurses in the chemo room had a funny wind-up doll they would make dance on your last day of chemo. The technicians in the radiation department had a bell that patients rang when they got zapped for the last time. Everyone in the waiting room would look up, smile and applaud. Those celebrations, silly as they seem, had great meaning. They were the outward manifestation of the huge internal sigh of relief as you stepped away from that part of the cancer journey.

The five-year all-clear is another big benchmark. Most cancer statistics measure those who make it past “year five.” It places you in the “survivor” category. So, instead of dancing dolls and ringing bells, we’ll go out to dinner. And that’s fine with me.

The good news on the mammogram came to me through electronic medical records, and I must say, I LOVE them. Instead of having to wait days until your doctor calls with the results, and then possibly playing phone tag if you’re not available when the call comes in, signing up for electronic records means…when they know the results, I know the results.

Mammogram in the a.m., and in the p.m., a note in my email box to check the electronic records website for test results. There it was, from the breast health center: “benign finding.” I have to smile at their evolution in communication techniques. Last year’s results were “negative.” Now, I know that “negative” in this test is good news. But I wonder if that word scared some folks into thinking it meant something bad–negative–and so they changed their wording.

A few days later, I got another email alert to go to the website, and there was a message from my doctor’s office saying “good news” with the same test results. She’d just had a chance to look at them, I guess. Which made me grateful again for the electronic records process–I hadn’t had to wait for her read on the results to get the news myself. For many cancer patients, waiting for test results is incredibly stressful.

So, hubs and I will toast this anniversary and each other. The American Cancer Society is right — these are “birthdays.”

Speaking of the ACS, here’s a tip for women facing cancer treatment of any kind. The ACS has a program called Tender Loving Care that sells, at extremely reasonable prices, wigs, head coverings and other items for cancer patients, especially breast cancer patients. Their site is at this link.

bluecapI bought a wig and several head coverings from them, including this sweet powder-blue hat that kept my head warm at night. My sister-in-law was able to share it and other of my head gear with a friend of hers undergoing treatment for cancer, and it turns out to be her friend’s favorite, as it was mine. I am glad the little blue hat found a good home, and I hope when she’s finished with it and ready to ring her bells and see her dancing dolls, she’ll give it to another woman walking the cancer journey.

Libby Sternberg is a novelist.

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TGIW: It’s October and that means…

by Libby Sternberg

It’s breast cancer awareness month (although I have to say that it’s hard to imagine folks who aren’t aware of this disease by now).

The campaigns to raise awareness have been pretty successful. What might still be a challenge, however, is getting women to actually get tested for breast cancer. I speak from experience. I found it extremely difficult to schedule a mammogram for a very simple reason: fear. My mother had died of the disease. My sister is a breast cancer survivor. Many other women in my family have faced it, too. I was in the ignorance-is-bliss category.

So, my advice to those who shake and quake as I did: Be not afraid, ladies. You will be able to face it, whatever “it” happens to be. And “it” might be nothing. Most women do not get breast cancer. That sometimes gets lost in the breast cancer awareness campaigns. The flip side of that good awareness is a wrong implication–that testing means cancer diagnosis. No, testing often means “all clear.”

In fact, while I think of it, a good campaign might include a lot of those “all clear” voices offering reassurances to women, with the underlying message being, however, that for the minority who don’t get the positive mammo outcome, a positive future can still await.

Anyway, for me, part of the “it” I feared was losing my hair if I had to face the Big C and its treatment. I had a real problem with that. Until I got two wigs. I loved them so much I took one to a hairdresser and asked her to cut my hair in that style after it grew back.

If you’re afraid of the test, however, let me offer some advice: Find a good breast health center and have your mammogram done there. The center I go to seems to do everything possible to take the stress out of the event. The decor is soothing; background music calming; staff helpful and solicitous. They seem to go out of their way to minimize the wait, and you need not wait in a public room but can read quietly and deal with your fears alone, if that’s your style, in single small dressing rooms.

This particular center also assigned a nurse to me once the diagnosis came in. She provided me immediately with a helpful booklet and acted as my “shepherd” through the process. I was shocked–and delighted–when she showed up for my first visit with my oncologist. When I had questions about direction, I often turned to her first; then she helped me figure out how to approach my doctors.

My second piece of advice, actually, comes from her: You are the captain of your ship. That is, you do what you want to do after weighing all the advice and information given to you by the experts. In my case, that meant opting for doing the whole enchilada in one surgery, not two–mastectomy and reconstruction at the same time. It was a lollapalooza of a surgery, but I didn’t want to go under the knife twice. Yes, I knew I risked some tissue damage if I needed radiation (I did), but opted to take that risk.  This meant arguing with doctors at times. I’m good at that, though. Arguing, that is. 🙂

Being captain of your ship, by the way, means choosing the right doctor’s practice for you. Notice I use the word “practice.” You might find a terrific oncologist, but if the staff seems surly, do you need that stress? When you’re in distress, you don’t want a curmudgeon as the gatekeeper to the doc.

Being the captain of my own ship also meant thinking of ways to ease my tension. Anyone who’s faced breast cancer knows that any lump raises concerns. But after surgery, some lumpiness can be….nothing. To reassure myself, I cut out a piece of a dress pattern in the shape of one particular hard spot and used it to judge if there were changes occurring. My oncologist was impressed.

And being captain of my ship sometimes has meant saying no to procedures I don’t want. Every year my doc would ask me to get a bone density scan to check for osteoporosis because one of the meds I’m on can apparently lead to bone weakness. But I am not interested in taking any meds to correct that condition, should I have it (and there’s no evidence I do), so why bother with the test? At one recent visit, the office nurse asked me if I’d gotten the test. I said no and explained why. She smiled and said: Good for you.

More advice: subscribe to a magazine called Cure Today if you or a loved one faces a cancer diagnosis. Of all the waiting room reading material, this magazine stood out. It’s upbeat without being sappy. It’s intelligent and speaks of research and treatments, while also covering the psycho-social aspects of this disease. It was in this magazine that I read of the fearsome “cast off” feeling after treatment ends. After being seen by medical professionals virtually every week, suddenly you’re told: see you in a year. Feeling apprehensive then is normal. Good to know.

More advice, but this is for friends and loved ones of those facing a cancer diagnosis.  A few do’s and don’t’s:

  • Don’t say “My mother/sister/friend died of that” upon hearing of someone’s diagnosis.
  • Do tell a cancer patient about survivors you know.
  • Don’t send cancer patients stories or tips about “cures the pharmaceutical industry doesn’t want you to know about.” If just eating lots of ginger and drinking certain teas could cure cancer, it would be gone by now, doncha think? Besides, when you send these “no side effects” cure ideas to cancer patients undergoing the grueling slog of chemo or radiation, what vaseyou’re really saying is “Aren’t you the fool for putting yourself through that when you could just drink this tea instead?”
  • Do think of thoughtful, helpful things to do to help a patient through that treatment regimen. My sister-in-law visited during one session and cleaned and cooked with no instruction. My sister sent me a gift package with magazines to read during chemo and other fun things. My kids sent flowers on my first day of chemo.

And an aunt sent me  one of those breast cancer pink items that companies manufacture, using part of the proceeds for research or awareness. It’s so lovely I include a picture here–a Lennox vase with a faint pink pattern. I use it often. It’s a reminder of family, love, hope and beauty.

And that’s what this month should be about, too.

Libby Sternberg is a novelist.

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