A Discovery(!) and an Insight(?)

Okay, so late Friday, the St. Joe’s oncologist called me back and listened to my sadly puzzled story about the ambiguities incidental to the latest boob surgery. I told him that Dr. P (aka WonderSurgeon) thinks the Mayo’s staff might consider radiation and tamoxifen despite her considered opinion that the 2014 standards for “clear” margins don’t suffice.

He said, “I don’t think you should take tamoxifen. There’s a better alternative for older women.” Turns out that if you’re post-menopausal, aromatase inhibitors work better at preventing recurrences in the guilty boob, are more effective at suppressing new growths in the other boob, and  have fewer dangerous side effects.

Tamoxifen is a dangerous drug. It has some very nasty side effects. Aromatase inhibitors also cause some conditions you’d prefer not to have, but fewer of ’em. Videlicet:

None of these are anything you would willingly bring on yourself. But then, neither is invasive breast cancer…

I’ve already got osteoporosis and don’t need a drug to make it worse. To control this effect, you have to take Drano In A Pill, aka Fosamax. It also has nasty side effects, one of them is to eat into your gut. Doesn’t that sound jolly?

With the bone thinning, I take my chances rather than taking that stuff.

So: aromatase inhibitors… My hair, which has yet to turn gray, is damned spectacular and I do not relish “thinning.” I keep the high blood pressure under control with exercise and weight maintenance, and I do not care to take a drug that will aggravate that issue and that has been shown to make me sick. I have plenty of joint pain, thank you very much, and do not need more. As for depression: well, creative types are prone to depression, and since I’m already iffy enough about riding this train to the end of the line or jumping off a bit early, it probably would be unwise to swallow a drug known to aggravate that tendency.

And tamoxifen… Holy God! Stroke? Deep vein thrombosis? Blood clots in the lung? I heard about one woman who got a blood clot on the outside of her chest — they  had to remove a rib to treat it. Uterine cancer? A dear friend of mine who was on tamoxifen had to have a hysterectomy to deal with that. Vaginal bleeding? Honest to God, I would rather die than have periods or period-like bleeding come back on me! And that is not an exaggeration.

I’ve highlighted the so-called “rare” side effects in gray. But experience has shown — consistently — that if a drug has a “rare” side effect, that is the one I’ll get. So we need not speculate that one or more of these will crop up during the five years I’ll be required to take the stuff . We know it.

So, OK. I made a discovery: there’s an alternative to tamoxifen and it is more effective in older women. It has fewer effects that are likely to be fatal. The commoner side effects appear to be even less desirable than the common side effects of Tamoxifen. Its uncommon side effects appear to be significantly less horrifying than Tamoxifen’s.

Ducky.

And over the weekend, as I was thinking about this nightmare tangle of decision-making, it occurred to me that a woman who has been told she needs treatment for DCIS after a lumpectomy has two choices and only two, with no middle ground. You can do one of two things:

a) Subject yourself to radiation treatment that has the potential for ugly, potentially fatal long-term effects, and then spend five years swallowing a drug that has side effects that may kill or cripple you; or

b) Have a mastectomy.

Doctors rarely tell women that breast radiation therapy  has effects than can crop up as long as thirty years later.  Among these are leukemia, myelodysplastic syndrome, new cancers, hypothyroidism, bone damage, lung damage, heart damage, lymphedema, restricted arm and shoulder movement, and permanent discomfort to the affected breast.

Mastectomy, as unpleasant as that prospect may be, would solve the problem. All of these matters are obviated by mastectomy, because with no cancer-prone breast tissue left, you are no longer eligible for either radiation or hormone therapy.

As far as I can tell, there’s no in-between. For example, I am no longer a candidate for radiation alone. And apparently no one suggests hormone therapy alone.

So here’s what it boils down to:

For a woman to keep a blob of damaged flesh attached to her chest, she has to accept a panoply of risks from radiation and drug therapy all of which are unpleasant and some of which are life-threatening.

Frankly, when you look hard at these issues, they make mastectomy look damn good. In fact, if I can get Dr. P to come up with some excuses to convince Medicare it’s medically necessary (the chance of new DCIS arising in the second boob is higher after it appears in the first boob, and radiation therapy increases the occurrence of new  lesions in the other breast), I may ask her to lob them both off.