Failing 'Good Patient 101'

You may know that once you have had cancer, even when you are declared cancer-free, it is not over. There is often ongoing treatment to help prevent you from getting cancer again, as well as regular follow-ups with an oncologist to screen for recurrence. Just when you want most to stop thinking about cancer, it seems you have to go see someone and talk about it some more.

When I last saw my oncologist, it was February, when I had the abnormal mammogram. I would have seen her again in May, except that over the ten weeks it took to get a successful biopsy of the suspicious area, I was poked and prodded a lot of times. When I finally got the thankfully negative results at the end of April, it seemed to be overkill to see another doctor again in two weeks. We moved the appointment to July.

I thought this was quite fortuitous, as I had fallen off my healthy eating wagon with an enormous thud and was hoping I could put the extra time to good use. I could do the elliptical trainer every day for 2-1/2 months, which would get me into good enough shape to run after that damn wagon and make the leap aboard. That was the plan.

Only, I didn't exactly do that. Still overwhelmed with fatigue from treatment-which I thought would have passed by now-I found that I can't manage even three minutes on the elliptical machine. Heck, I can't run up the stairs without gasping for air anymore. I became dejected. And food, well, that's my own damn fault. Unless I can blame it because IT TASTE SO CRAZY GOOD! Okay, no, that isn't an excuse, as it turns out.

So, I was absolutely dreading going to the oncologist, as much as I love my doctor, because I'd have to get on the scale and then talk to her about what a failure I was at getting my act together. I would not be a grade 'A' patient. I would not brighten her day. I hate that.

The reason my weight even matters is that, for breast cancer, losing weight is one of the best defenses against recurrence. A number of studies have shown that pretty much any weight gain increases a woman's chance of getting breast cancer again...even as little as SIX POUNDS! Which, by the way, is not the amount I'm struggling with. I wish! So, we were going to have to talk about weight for sure.

Throughout June my sense of dread built up so much that I considered moving my appointment to the end of August with some breezy excuse of, well, you know how summer is, what with the kids and vacation and all. Only, I don't have kids and I never take vacation. More importantly, I doubted my ability to fix all in a measly six weeks.

So, I showed up.

The technician who takes my vital signs always is fun to talk to, so we shared what she was up to. She has applied to med school and is trying to enjoy what may be her last weeks in San Francisco as best she can. I nudged the bottom weight on the scale to the right while we talked (I guess it's good that everyone thinks I weigh less than I do, but let's not weigh me all day) and we laughed about this and that. Then she took my blood pressure and stopped joking around. She looked at me seriously and in a quiet, low voice, she told me my blood pressure reading.

Never having heard a number like that in regards to my body, I was speechless. Omigod. This makes my hypochondria a little less funny, that's for sure!

The nurse practitioner saw me first, gathering information for the doctor and doing a physical breast exam. Because I hadn't seen this NP since October, I had to fill her in on the fact that I'm not taking Tamoxifen and why. She told me that it seems a small percentage of younger patients have intolerable emotional side effects on Tamoxifen; she has two other patients like that. I felt a little better, momentarily, knowing I was not alone.

Then the doctor came in and it became a little chaotic. The N.P. went to go find the surgeon's nurse to look at my biopsy incision while my doctor asked me questions. Including, of course, about what the heck I was doing with my weight. My desire to please my doctor and prove I am a sensible person struggled with the indefensible truth of my physical state. Let's face it, my body condition is not for lack of knowing what to do. If knowledge mattered, I'd be skinny as all get out, with the strength of five women. But it doesn't matter. I started to feel like I was going to hyperventilate and I don't remember what I said.

The surgeon's nurse came back with the N.P. and she started to inspect my breast. It is almost three months after surgery, yet my incision won't close completely and continues to drain a clear fluid. It's not draining as badly as it did after my lumpectomy, but this is going on for longer. Up until now, care had been managed by phone. That care involved putting me on three separate courses of an antibiotic that I had to take every six hours, wearing a bra 24 hours a day for EIGHTY-FOUR days, and cleaning and dressing the wound daily. Yet nothing has changed and redness is spreading.

Turning to the doctor, the nurse asked about my current treatment. The oncologist explained, "She wasn't able to tolerate Tamoxifen and so we've discontinued that. I recommended ovarian suppression which she has said no to, and so...we're hoping for the best."

That last bit was said with a strained smile that made me want to shout, "Hey, hey, HEY!" I pointed out that I did not decline ovarian suppression forever, just not right now. But I was really reacting to "hoping for the best," said by a doctor who is trying to work with a patient who is refusing the only care she can offer. I want to say she is trying to scare me. Thing is, I know she is actually just telling the truth.

Here's the deal: for a hormonally-responsive cancer like mine, after surgery, all treatment is about reducing risk. It gets complicated because each thing that you do - such as chemo or hormone treatment - reduces your statistical recurrence risk by a percentage. Hormone treatment (which is really about withholding estrogen from breast tissue, one way or another, so that cancer cells can't feed on it) has the biggest impact on recurrence. It can reduce risk by as much as 40%. What that means is that if your recurrence risk is calculated to be 25%, hormone treatment is believed to take 40% of that 25%, dropping you down to 15% risk. If you choose chemotherapy, that would drop it down more, but it wouldn't be as big a drop as the hormone treatment.

When I had the Oncotype-DX test done (the one that analyzed the genes in my cancer cells) it said that in the next 10 years, assuming I completed hormone treatment, I had an 18% chance of developing metastatic cancer. This is why I chose to do chemo. I thought 18% was too high. So, I went through a few months of hell and screwed up my body, just so I could drop the number from 18% to maybe 12%, or 10%.

Only, then I found I couldn't handle hormone treatment. So what does that mean to my risk?

The Oncotype-DX report doesn't say what my risk was without hormone treatment, perhaps because that's not in the data. I'm guessing maybe 27%? 30%? I really don't know. It's possible that by doing chemo but declining hormone treatment, I still have a 20% risk of developing stage IV cancer. That would be a higher risk than what inspired me torture my body with chemo in the first place.

So, yeah, she's absolutely right. We are hoping for the best. I am not doing what she would recommend for me. There was really nothing for me to say.

She reminded me that I could email her any time when I changed my mind about having my ovaries shut down. (Absolutely NO ONE is on the side of those little puppies except me.) I promised I am still considering it, and that actually is true.

Unwilling to hold this tension longer, I changed the subject with a question about something that had been driving me crazy. "Have you ever had patients who had problems with their head sweating profusely? Ever since I started chemo last year, whenever it is hot or I exert myself, my head is like a fountain! It's so gross. What is up with that?"

Both my doctor and the nurse looked at me and said, "Hormones." They explained that I am actually having hot flashes. Having read plenty about hot flashes and knowing that this is not the power surge experience I read about, I became indignant.

"But no, no, it's not my whole body. And it's not all the time. It's just my HEAD. When it is HOT. Outside!"

"Hot flashes take many forms," the nurse said, looking at me sympathetically.

My doctor snapped my file shut and stood with a smile. "It just means you are closer to menopause - that's great news!" She patted my arm as she strode out of the room.

Wow. Thanks a bunch. Smile like that again when it comes time for your ovaries to withhold their youth juice! And on an accelerated schedule, no less.

The next day, after talking to the surgeon, the nurse called me. She said that I need to a fourth round of the same antibiotic (I would have switched me to another one, but I don't have a medical degree) and they want me to come back in two weeks to inspect the incision. Because I have nothing better to do with my time, I agreed.

Assuming that goes well, everyone leaves me alone until October. This means I better dust off that elliptical trainer. The countdown timer is ticking yet again.

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