“Not a Cancer” Update

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…