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Health care

A Discovery(!) and an Insight(?)

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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:

SideEffects

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.

“Not a Cancer” Update

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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…

w00t! Medicare to the Rescue!

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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.

Surprise Surgery!

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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.

Wine: In Search of Lower Alcohol Content

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Did you realize that wine makers, especially in the US, have been quietly upping the alcohol content in some of our favorite potables?  According to the Canadians, who screen incoming alcoholic products, the worst offenders are Chile, Argentina, and the United States, but vintners in all countries do it to some degree.

The theory is that the higher alcohol proportion makes for a heartier product, more attractive to consumers. Also, we’re told, higher sugar content created by the American habit of using riper grapes than Europeans do enhances alcohol content. But because the same Canadian review found that wine makers systematically understate alcohol levels, it’s difficult to avoid speculating that, like caffeine in soda pop and nicotine in cigarettes, this is yet another device to hook users on a product by inserting a habit-making, potentially addictive drug.

I like a glass or two of wine with dinner, often a fairly elaborate affair produced, with flair, in my own kitchen and often served up at mid-day. In recent years, what used to a tasty accompaniment to the grilled filet mignon or the Greek-style baked sea bass has taken to knocking me for a loop. A glass and a half of zinfandel, and I’m ready to fall face-forward into the dinner plate! I’ve attributed that to advancing age — as your metabolism slows, your tolerance for various drugs fades; alcohol is a drug, and so it follows that you’d become more sensitive to it as you dodder toward the grave.

No. California zinfandels rank among the very highest wines in alcohol content: upwards of 14.5 percent! I’m very fond of zins. And also of petite syrah, another in the “highest” category. Others of my faves place in the “high” range: California cabs, pinots noirs, and syrahs, Chilean merlots, Australian shiraz…holy mackerel!

How did I miss this? Apparently it’s all the rage these days to seek out low alcohol-content wines.

It came to my attention earlier this week, after I’d bought a bottle of Mâcon-Villages chardonnay. Normally I don’t care for chardonnay — it’s a boring wine — but the price was right and this was something different for me. So I grabbed it off the shelf. Served it up around 1 or 2 in the afternoon with a lovely slab of grilled mahi.

It was light and refreshing and…yes…several glasses later I realized I’d swiggled down half the bottle!

A-n-n-d…I should’ve been sh*t-faced.

But I was not. I felt quite sober. Wouldn’t have gotten into a car…but nevertheless, around the house I was fully functional. Had no trouble completing the remaining little projects on the day’s list. Wrote some copy. Graded some papers. Puttered around til 10 or 11 at night.

Normally, if I have almost half a bottle of wine, it is all I can do to crawl down the hall into the bedroom and climb into the sack, where I end up sleeping out the rest of the day in a stupor. No stupor was forthcoming.

Click! A light went on. Googled “wine alcohol content” and that’s when I learned that US manufacturers are deliberately jacking up the alcohol content in our wines, that many overseas producers are following suit, and that it’s still possible to find some decent vintages with what used to be normal levels of alcohol.

Here’s what I found out:

From The Guardian:  Wine levels systematically understated; about 1/3 of samples tested by Canada. Worst were Chile, Argentina, US, but all countries were doing it.

From NPR:

Imported whites with “low” alcohol content (around 9% to 11%)

Vinho verde (Portugal)
Txakoli or Txakolini (Spain)
Riesling (Germany)

From Wine Review Online:

Categories of wine called out as particularly high in alcohol content (14% to 16%)

California zinfandels
Most California, Washington, and Australian reds
Italian wines distributed in the US

From Real Simple, listings sorted by alcohol content:

Low (under 12.5%)

Whites:

French muscadet
French Vouvray

Moderately low (12.5% to 13.5%)

Whites:

Austrian Grüner veltliner
Australian riesling
French Alsace white
French Loire and Bordeaux whites
French white Burgundy
Italian Pinot grigio
New York riesling
New Zealand sauvignon blanc [I doubt this!]
Oregon pinot gris
South African sauvignon blanc
Spanish albariño

Reds:

French Beaujolais and Burgundy
French Bordeaux
Italian Chianti
Spanish Rioja

High (13.4 %- 14.4%)

Whites:

Australian chardonnay
California chardonnay
California pinot gris
California sauvignon blanc
California viognier
Chilean chardonnay
French Sauternes
South African chenin blanc

Reds:

Argentine malbec
Australian shiraz
California cabernet sauvignon
California pinot noir
California syrah
Chilean merlot
French Rhône red
Italian Barolo

Very high (over 14.5%)

Whites:

French Muscat de Beaumes-de-Venise (fortified)
Portuguese Madeira (fortified)
Spanish sherry (fortified)

Reds:

California petite sirah
California zinfandel
Italian Amarone
Portuguese port (fortified)

Real Simple’s listings are the broadest I came across. Quite the eye-opener, eh?

Just lookit that: California zinfandel and petite syrah fall into the same category as fortified wines like port and Madeira. Ugh! No wonder I’ve felt blotzed after just a glass or two!

Dunno about you, but I’ll be cultivating a renewed appreciation for white wines, despite a strong preference for reds. And after this, I won’t buy any more California wines. We’ll be learning a lot more about French wines!

But as a caveat, do bear in mind that the Canadians discovered manufacturers are deliberately understating alcohol content. I would be very surprised if the Marlborough Sauvignon blanc from New Zealand, available in vast quantities at Costco, were “moderately low” in alcohol. Two glasses of that will have me falling face-first into the sack, just as fast as two glasses of California Zinfandel will. It looks like the only way to know will be to taste-test, consider how you actually feel after one glass, and keep a record.

And since you may be getting a lot more alcohol than you think, don’t ever drive after imbibing even one glass of wine.

High Inefficiency: Washers and Rx Plans!

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So this morning I take it into my pretty little head to do the laundry in my fancy new(ish) Samsung high-efficiency top-loading washer with the fun clear lid that lets you watch the clothes sloshing around, just in case you’re feeling unusually bored.

To do that I have to…

• Sort clothes (colored, white…said not to be necessary, but watch this space…)
• Sew up the mesh bag that split apart the last time I washed a few items
• Put jeans into mesh bags, one bag per pair
• Sneak one pair of cut-offs into a mesh bag holding a pair of jeans
• Put socks, panties, and camis into several more mesh bags
• Haul bagged laundry out to the garage, whereinat the fancy washer resides
• Load washer
• Measure portion of  radically expensive “high-efficiency” laundry detergent into stupid little cup from which the machine dispenses it
• Clean the mess created by laundry detergent dribs of radically expensive “high-efficiency” laundry detergent that splashed from stupid little cup onto machine’s lid and tub rim
• Set machine to “bedding,” the only cycle that dispenses enough water to get a load of jeans and T-shirts clean…in AN HOUR AND TEN MINUTES!
• Go away for an hour and ten minutes but don’t leave the house because no one in her right mind would leave an appliance full of water sloshing around unguarded for a hour and ten minutes or for any length of time unless what she most loves to do is mop up gigantic messes

An hour and ten minutes. Figure there’s got to be a better way. Now I drag the whites into the bathroom, wash them in the vanity sink, rinse them in the bathtub half-filled with cold water, traipse them out to the garage, and hang them up.

By the time I finish this job, the washer has ALMOST filled with water and started to slosh its FIRST laundry cycle.

Got that? I washed an entire load of laundry by hand, in the bathroom goddamn sink, in less time than it took the wondrous high-efficiency washer to even START to wash the load I stuffed into it.

Okayyyy…. Now we understand why these amazing machines so “efficiently” save water and power: when you don’t use the thing, you don’t use water and power.

Wash four crocheted shirts by hand and lay them out on the tile floor to reblock and dry.

These items could also have been laundered in the wondrous high-efficiency washer. But I wanted to get them clean sometime during my foreseeable lifespan.

The khaki dye and the orange dye from two of these Nordstromsy made-in-Asia shirts leak into the sink water. Therein lies the reason we STILL separate the whites from the colored clothes, even though we are assured that it’s ever-so-much more highly efficient to launder all the clothes together. No doubt it is, if you enjoy wearing grunge-grey “whites.”

Moving on…

Now I decide I should go online and sign up for a new Medicare Part D (prescription drug) plan, since my outfit, Wellcare, is doubling its premiums. I decide to select Humana’s Walmart plan, whose premium is about what I’m paying now and whose copay is significantly (as in HUGELY) lower and which has four- and five-star ratings across the board as compared to my present plan’s three-star complaints ratings. You can sign up for these plans on Medicare.gov, in the same app that allows you to call up and compare plans. However, what you can’t do is figure out whether signing up for the new plan automatically unenrolls you from your present plan, or whether you have to jump through 15 to 30 minutes of phone-tree hoops to get disconnected from the folks who have been ripping you off for the past year.

Navigated to Arizona’s version of SHIP, a bureaucratic fragment that usually employs some uninformed volunteers to answer your questions. Checked the FAQs; this particular (very obvious, IMHO) question was not answered. Called the phone number. Got an obnoxious robotic answering machine, saying if I would leave a message maybe someday they would get around to calling me back (fat chance!) and maybe then I could ask the question whose answer I need now, not sometime in the remote future.

Found a phone number for Humana at the Medicare.gov site. Dialed it, expecting another obnoxious robot.

Mirabilis!!!!!!!! Got a human being!

Yes. You do get disenrolled from the old plan when you sign up electronically for a new one. But would I like for her to sign me up, as long as we were on phone?

Sure.

It took FORTY MINUTES to get through the tape-recorded boilerplate bullshit Humana’s doughty CSR had to play into my ear. At the end of of each of three long-winded segments of boilerplate bullshit, I had to answer, clearly and unmistakably, “YES.” This, she explained, is taken to be a telephonic “signature.”

God. All. Mighty.

The washer was almost done by the time this tedious experience ended.

So now I’m signed up for a new Part D plan, though it won’t kick in until January 1. This is good, because the plan I’ve got is the biggest rip-off ever to come down the pike.

I hope the new one won’t be a rip, too. There’s some reason to believe it will be slightly better:

• User ratings show a lower tendency to deny coverage of drugs prescribed by your doctor and to try to substitute drugs your doctor specifically says you shouldn’t be taking.

• Co-pays are much lower. In fact, if you can wait for them to send your pills by snail-mail, co-pays are sometimes zero dollah. What I’ve had is so ridiculous that I’ve given up even asking — I’ve just been paying out of pocket. The last Rx the Mayo prescribed was denied because, the pharmacist said, Wellcare didn’t like the doctor!

Got that? They don’t like a surgical resident in the service of one of the most prominent, high-powered, respected oncological surgeons in the country. The same surgical resident whose last three prescriptions were honored without quarrel.

Hauled the laundry out of the washer. Hung it up to dry. Cursed the double time-suck.