October 11: What Not to Say - Part 4

Welcome to the fourth and final installment of what not to say to a person with metastatic breast cancer, a series of posts spawned from a Bingo card (featured on October 8th's post). One last time, the intent is not to shame anyone who's said these things with well-meaning intentions, but to educate. Even I have been guilty of saying them about my own metastasis, due to how pervasive pinkwashing is in our society.

"When do you finish treatment?"

This is the question I think everyone with mets hates the most, because answering it forces us to look at the unvarnished truth. The answer is never... unless we're entering hospice. We will be in treatment of some sort for our cancer for the rest of our lives until we die from it. Scans, doctor appointments, pills, IV infusions, injections, blood transfusions, that's our new normal. There is no finish line to cross in this race. We will never be done with treatment. When we stop treatment, it means our time has come. So no, we hate this question. 


"What's your prognosis?"

What do you mean by that? Stage IV Breast Cancer is terminal. Our ultimate prognosis is that this disease will kill us. We can be doing fine at the moment, with stable disease and no progression, but that doesn't change the fact that there is no cure, and  treatment will continue as long as our bodies can tolerate it. Right now, at this very moment I'm writing this, if someone were to ask my oncologist how I'm doing, his reply would be "Great!" I've had a wonderful response to chemotherapy and anti-hormonal medication, and we hope that I'll continue to have this great response for a long time to come. But the fact remains that three years is still the average life span of someone diagnosed with metastatic breast cancer. That's my prognosis.


"So-and-so had this and she's fine."

Well, good for her. It's not unheard of for women with metastatic breast cancer to live five, ten, fifteen, even twenty years past the date of diagnosis. But each case is unique. Each cancer is different. There can be two people diagnosed with the same kind of cancer in the same stage on the same day, and one can thrive while the other passes away. There are so many variable factors that each case is unique to each patient. Looking at other people's progress or lack thereof does not tell you anything about your own prognosis. You can look at averages, but there's no way to know where at on the scale you'll fall. Some women thrive for years, and others are taken from us far too soon. We're not a cookie-cut carbon copy of each other. We all respond to the disease and treatment differently

And please, don't mention that so-and-so had this and she died. We know people die, we don't like to be reminded of it.

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And that concludes the four-part presentation of what not to say to someone with metastatic breast cancer. I hope I haven't offended and I do hope I have educated. As always, if you wish to err on the side of caution, consider how you would feel in the other person's shoes if you were asked such a question. Unless you know questions are invited, people have a right to keep their medical health private.

Part One
Part Two
Part Three

Scanxiety

I went through one PET scan prior to starting treatment, and that, along with some biopsies, confirmed the spread to my lymph nodes under my left arm, and to one spot in my liver. I was metastatic from diagnosis, and I started chemotherapy almost immediately. From December 10 to May 13, I never missed a single three-week-on, one-week-off chemo infusion. I had several CT scans during my weeks off, and they all said the same thing: each scan revealed the tumors had been reduced since the last scan. The chemotherapy was very effective in obliterating the tumor in my  breast and under my arm, and almost wiped out what was in my liver.

But I was starting to show the strain from cytotoxic treatment, I was becoming more wan, growing weaker, more bad days than good. It was time, my oncologist decided, to give me a break from chemo and try a different approach.

I'd like to take a moment to underline something here. He decided to give me a break from chemotherapy. Not end. I was not finished with chemotherapy. I would have to resume it someday in the future, but for now, he wanted to try to maintain it with anti-hormonal medication and keep it stable.

If it worked.

For several months, I received a once-monthly Zoladex injection to the abdomen, and every night without fail, took a Femara pill. Their purpose was to block all estrogen in my body, to put me in a chemical menopause, to starve the ER/PR positive cancer cells and keep them from growing. The question was if it would work at all.

Because it's not a matter of if it fails. It's a matter of when. We could only hope that it would work for a long while, and we didn't know if it would, or how well it would work.

August 19th was my first CT scan since then. It was early Tuesday morning. I had until Friday afternoon to get the results. Those hours in between became agony as I logged into my patient portal, only to find the results weren't posted yet. In the past, they were usually up in a day or two. Why weren't they up yet? Was it because there were bad results and they wanted to wait until my oncologist had a chance to break the news? What was going on? Would I have progression? Was the cancer growing despite the drugs? Would I have to go back on chemo? Maybe I just needed an increase in dosage of my current drugs. Would I have to have another biopsy to find out if I was still ER/PR positive? I know that sometimes tumor cells can change on you, and what's positive can become negative. What was going on?

I tried to sleep and would end up staring at the wall, holding my pillow in a death grip, my heart racing. I took maybe one or two Ativan more than I should, just to keep the anxiety from becoming a full-blown panic attack. Friday came and I logged back into the patient portal, expecting to see the results now. Still nothing. The hours crawled by until it was time to go to the appointment.

I popped another Ativan.

I was going to stop at the in-clinic pharmacy to have my Femara refilled while I was in my appointment, but my partner stopped me, pointing out that we didn't know what we'd find when we went in there, if he'd even keep me on the same medications at all.

Finally we were back in the exam room and my oncologist walked in. I stepped in with a few idle chatter comments, asking him how he was, that sort of thing, in an effort to not appear too anxious. He saw right through it, and I blurted it out less than a minute in. What were my results?

I was stable. No sign of progression. The Femara and Zoladex were working.

"I'm doing fine, then?" I asked him.

"No," he replied. "You're doing great. Fine is just average. You're doing better than average."

I told him I was glad to hear that, because I wanted to be around when Mars One puts the first humans on Mars in 2025.

I'm stable. It's working. Maybe it's just for now, but for now, damnitall, it's working. And it's brilliant.

The relief meant the Ativan no longer had to work to keep me calm, so when I got home, I went to bed and actually slept.