Health care

The situation is not great with the boob adventure. But as before, it could be worse.

WonderSurgeon called about 7 last night to reveal the results of last Monday’s surgery. As usual, she feels she didn’t get enough out. But she seems to feel ambiguous about it, a little on the fence about whether a mastectomy is really  necessary. She did fess up to the fact that I indeed DID understand her right when she originally said she didn’t accept the 2014 guidelines for negative margins. In fact, said she (I wrote this down word for word), “the margins are technically negative. Some people would never have re-excised the second time.” And she added that there is “no tumor at ink.”

This fits the 2014 definition of negative margins. The consensus of experts at the Society of Surgical Oncology and the American Society for Radiation Oncology, which jointly published the new guideline, is that there is no difference in recurrence rates and survival between “no ink on tumor” (i.e., a very narrow margin) and 1 or 2 mm margins. So it would appear, as I have suspected, that I’ve been subjected to a fair amount of questionably necessary surgery. On the other hand, when you go to look this up, you find that over the past five years quite a few researchers and practitioners have argued that wider margins mean lower recurrence rates and higher 10-year survival rates.

Her latest effort, it must be added, is a work of art! The damn boob looks BETTER than the other one!!  Except for a five-inch incision (which of course will leave a five-inch scar, assuming the boob survives), it’s exactly the same shape as the unmolested boob, only slightly smaller and cutely perkier. Last night I was staring at it in awe and thought i wonder what she would charge, out of pocket, to make the other boob just like this? It looks like a 20-year-old’s. Helluvan improvement over the caved-in monstrosity that went into the OR on Monday.

So I said to her that she’d done SUCH a gorgeous job, I hated to see it chopped off and thrown away — at the very least we need to preserve it and display it at an art museum. She laughed.

She said the histologic grade (an assessment of mitotic abnormality in the guilty cells) was intermediate in the first and third excisions and high in the second. This is not good: the higher the histologic or nuclear grade, the more likely the DCIS will morph into invasive cancer. Or so they think: the matter is extremely complex and difficult to parse.

But she was ambiguous. She said a LOT of the tumor has been excised and that if anything remains, it’s probably just in tiny spots. I am (wouldn’t you know!) an “unusual” patient.

I asked if radiation therapy could beat it back.

She said it would be worth talking to the radiation oncologists to see what they think. Running figures through one of those algorithmic risk indexes, she said the likely rate of recurrence, with radiation, would be 20%; among any such recurrences, there’s a 50% chance of it coming back as invasive cancer. So that would give me a 20% chance of DCIS recurrence and a 10% chance of invasive cancer. At the time I felt those were not great odds, but in retrospect we appear to be looking at an 80% chance of recurrence-free survival and a 90% chance that no invasive cancer will develop.

Given my age, she believes that even if invasive cancer arises, I will not die of it. On the other hand, the treatment’s pretty effing grim.

One of our problems is that these entities are invisible to mammography — only a tiny, tiny portion was visible in the St. Joe’s mammograms and sonograms. This means that by the thing’s nature, it will be difficult to monitor, and efforts to watch it will be complicated by the distortion and scarring caused by the surgery.

She said she wants to talk with her colleagues in today’s faculty conference. She thinks because I’m an unusual case it may be worth trying radiation. We are also going to confer with the excellent man I found at St. Joe’s — she knows who he is and respects him, and so was open to asking his opinion.

I said if I were any younger I’d say let’s lop it off ASAP. She said yes, that if I were 50 that would absolutely be correct. But at this age, almost 70, it’s ambiguous. On the other hand, given my otherwise good health, she thinks I could live past 95; I said two women in my family lived to 95, but my father and both his brothers died at 84, so I’ve been figuring my life expectancy is 85 to 95. That’s 15 or 20 years. We think 25 years would be pushing the likelihood of recurrence, and even 15 years might be.

She said she felt that radiation with tamoxifen, given my age, might be a reasonable option. She says those who undergo re-excisions have local recurrence rates of 10%, and that’s for the Mayo — recurrence rates are significantly higher outside the Mayo.

As a parting shot, she expressed concern — or mild dismay at the possibility — that a mastectomy could show no further DCIS in the breast. She said occasionally when tissues are examined after a mastectomy, they show nothing. I said what they showed was “peace of mind,” and that is a great deal more than “nothing.”

So I have a call into the St. Joe’s oncologist, the one who spent 70 minutes talking and soothing my nerves. I think there’s a good shot he may think “no ink on tumor” suffices, and that if the Mayo won’t order radiation, he will. I know that the guy at Lincoln will do it if I state that I decline a mastectomy, but he is an idiot and I don’t trust him to find his way to the bathroom, much less to the facts in an ambiguous case of a disease that no one really understands fully.

Meanwhile, among the stack of articles I’ve unearthed in various scientific journals, I’ve found one from Current Oncology, published this year, showing that the older you are, the less likely you are to experience a recurrence of DCIS after lumpectomy and radiation, and that this is true of development of invasive cancer, too. For every year you age, recurrence risk drops significantly. Over 10 years, recurrence-free survival rates for women less than 45 for those who did and did not receive radiation treatment were, respectively, 70% and 75%; for those 45 to 50 years, 88% and 85%, and for those over the age of 50, 91% and 89%. The study included 1607 women and corroborates a recent analysis of two large randomized trials. According to the Curr Oncol study, rates of recurrence after radiation therapy were 11% for women over 50, 15% for those 45 to 50, and 25% for those under 45. Divide those rates in half to show the rates of invasive cancer occurrence.

Frankly, I think those figures sound pretty good. I’m WAY over 50 and betcha that nothing much will happen if I refuse to do anything else, period. Radiation therapy almost certainly will produce an acceptable result. The Curr Oncol study was large, it focused only on DCIS, they did univariate & multivariate survival analyses using Cox proportional hazards models, they used Kaplan-Meier to calculate actuarial results…and there is the fact that it corroborates not one but two earlier studies.

So that’s where we are now. I’m waiting to hear back from Dr. Pakcaj, the WonderSurgeon, and for Dr. Wendt, the St. Joe’s oncologist, to return my phone call.

I think it’s going to be a matter of deciding which way to jump. If I decide to decline any further surgery, it’s unlikely that I’ll croak over soon, and at least for a few years I’ll have a beautiful new boob that makes half of me look like a 25-year-old girl. If I choose to go ahead with the mastectomy, then I won’t have to get radiation therapy, which may be even better than looking like a 25-year-old. Six of one, half-a-dozen of the other…

Damn, but getting old has its perks! Check out this statement from the august Mayo Clinic’s billing department:

Previous Balance: $12,192.40
New Charges: $10,198.49
Payments/Adjustments: $21,645.40
Current Account Balance: $745.49
Insurance Claims Pending: $347.17
Personal Amount Due: $398.32

Medicare has covered the bulk of that, with Medigap coverage from Government Personnel Management picking up the slack. See that amount due? Right now a stack of checks from Medicare and GPM is sitting on my desk. They total a little over $600.

I haven’t received a notice from GPM as to how much they intend to jack up their premiums after this fiasco. The hated Part D carrier, the notoriously evil Wellcare, doubled my premiums by moving me into a pricier level. I assume GPM will do something similar.

The problem with Medigap is that they do underwrite, which means that once you’ve got a diagnosis of a real or potentially serious problem — or had any treatment that cost some insurer a pretty penny — you can’t get coverage with anyone else. Under federal law, your current Medigap insurer isn’t allowed to throw you out, but there’s nothing to stop them from bankrupting you with sky-high premiums.

Part D, however, doesn’t work that way. During open enrollment you can move to other plans. This year I’m picking up Humana’s Walmart plan, whose premiums are only $15/month and whose deductible and copays are much, much lower.

Humana’s reviews are far superior to the evil Wellcare’s, too: five stars for not forcing people to accept drugs that might harm them instead of the prescribed drugs. And four stars — about as high as any of these Part D insurers ever go — for actually filling the prescriptions your doctor asks for. Wellcare has consistently refused to cover most of the drugs my doctors have prescribed over the past four years. Most of the time these days I just tell the pharmacist to give me the bill and not even bother to try to put a claim through, since it’s a waste of her time and mine.

Anyway, it looks like Medicare is going to cover most of the cost of the four surgeries I’ve had so far. Probably I’ll only have to pay a few hundred to a couple thousand bucks. That’s a relief…when I saw that first $11,000 bill, I almost fainted dead away!

Too bad Our Dysfunctional Illustrious Congress couldn’t have gotten its collective head out of its collective you-know-what and simply expanded Medicare coverage to everyone, rather than dorking around with an entire new hopelessly complicated scheme that is hopelessly contaminated by the insurance industry.

Heh. I’ve been going along all this time — the past several weeks — thinking the next installment in the interminable series of surgeries was slated for the 29th: next Wednesday.

Come Saturday, my son informed me that no, that was wrong: the actual day was the 27th. Called over to the Mayo and found yea verily, they had it scheduled for the first thing this morning.

They actually had sent an “itinerary” — a scheduling form — but since I thought we weren’t due there till next Wednesday, I’d put off opening the envelope. One of the ways I deal with this stuff is simply not to think about it until absolutely necessary: I’d planned to open the thing today, actually.

Instead, they opened me today.

So we showed up over there at  5:30 a.m. The whole gig has become pretty routine for me. And as nice as all those people are, I’m mighty weary of it.

The surgeon told M’hijito that she’d gotten clear margins, according to the pathologist who was working in real time. But that remains to be seen: she’s thought she had clear margins both times before. The acid test, as it were, is the final path report, which we won’t get for a couple of days.

At any rate, she must have sliced out a  lot more than she has before, because it hurts one helluva lot more than the previous two excision attempts did.

Fortunately, all the student papers are graded and everything else is pretty much under control, except that there’s not much food in the house.

Oh well. So it goes.