Yesterday the boob cancer flap flared up again! And I got REALLY exercised this time.

The surgeon’s nurse called to report the new pathologist’s report. In short, once again the surgeon “didn’t get it all,” to use the old-fashioned terminology. Surgeon wants to see me again, ASAP.

Then she informed me that said surgeon has left town. The soonest I can get in to see her is next Wednesday! And again, I’ll have to trudge through godawful rush-hour traffic to the Mayo Clinic’s offices halfway to freaking Payson, endure another stress-making talk with the doctor, and watch this whole mess go from bad to worse.

Damn!

So I got pretty upset. When this woman called, I was flaked out on the bed with ice packs on my boob, and believe me, I do NOT want to go through this again!

In discussing the path report, she said that the pathologist noted that the tumor has “spread throughout the breast.” I said, “Well, then you’re saying it’s NOT a DCIS, but that it’s metastasized throughout the breast?”

She now says “We don’t use that word.” (Yeah: your doctor doesn’t call it “cancer” — she keeps saying it’s a “precancer” — but you and all your nursing colleagues and every underling who gets on the phone or ushers me up a hallway call it “cancer,” a fact that does little to engender confidence!) and that it IS a DCIS.

Uh huh. Well, to my mind a tumor that has “spread throughout the breast” is not something one would characterize as “in situ.”

This is beginning to spell “complete mastectomy” to me. And now I’m starting to freak totally out.

By mid-morning I was just beside myself. So I called Young Dr. Kildare’s office, just because the man has the deepest fund of common sense of any man I’ve ever met and I wanted a sane shoulder to cry on. He agreed to see me in the early afternoon.

My son wastes his lunch hour, poor guy, to come over and try to calm me down, but he succeeds only in making me feel he’s speaking to me as though I were a ten-year-old, which gets me even more upset. Can’t blame him: I used to do the same thing to my mother when we all thought she was a hypochondriac. That was, yea verily, while her innards were merrily filling up with columnar tumors.

On the way out the door to YDK’s office, I printed out a 2010 article summarizing and commenting on research suggesting that DCIS lesions known to be “indolent” (i.e., slow-growing or possibly not growing at all, as mine is) should a) no longer be designated “carcinomas” at all and b) should be left alone, in favor of a “watch and wait” approach.

2010, mind you. This isn’t exactly breaking news.

He was startled to see it — he said he’d never heard about it. Well, YDK is a kind of GP — basically a door-keeper who tries to guess whether patients need specialized care and who refers or doesn’t refer based on his somewhat educated opinion. He’s certainly not an oncological specialist…on the other hand, this controversy hit the news in 2010; I get my news almost exclusively from Google and The New York Times, and even I had heard about it back then. So it was sorta surprising. Anyway, he said he would read the article and look up the actual science, so that was nice.

By the time I got to his place, the Mayo had faxed the pathologist’s report over to him. So he sat down and translated it, as follows:

The new excision showed the carcinoma coming right up to the inked margins, meaning she did not remove enough papilloma-free tissue to leave any margin of normal flesh. The term “metastasize” is used only to designate cancer that has spread outside of the organ where it originated. If it has not left the organ, it is not said to have metastasized. Where the pathologist says “spread throughout the breast,” YDK believes he means the tumor has grown large enough to fill most of the breast. The good news, though, is that there still is no sign of any invasive cancer.

Well, of course, this raises as many questions as it answers. For example, if the tumor is that large, why would that not have been visible on the umpty-umpteen mammograms and sonograms I’ve been subjected to? If it’s that large, why would it not be visible to the surgeon’s naked eye? And how many more of these time-sucking, stress-inducing, hair-pulling, life-disrupting, painful surgeries am I going to have to endure????? More to the point, are we looking at a complete mastectomy here? And of course, that’s all before we bring up the question of why, if as early as 2010 experts felt it was safe to simply leave a low-grade, indolent item in place and watch it, why we’re doing all this in the first place?

Arrrrrrrgghhhhhhhhhhhhhhh!

Well, he said that no matter what, at this point the best thing to do is to get the abnormal cells OUT, since what’s begun is begun and it would be unwise to leave the job unfinished. He did think a full mastectomy is entirely possible, but, said he, so what? Better to be rid of the boob than to keep cells that may or may not turn into invasive cancer. It will not, he observed, be the end of the world. He said he believes this is the best approach because, given my overall health, it’s likely I’ll live at least to 85 or 90. Since I’m just pushing 70 now, that means that even a very slow-growing entity could cause some very serious problems or death before a heart attack, stroke, or other issue carries me off.

Then he said, “Look, what you really want to know is how to bring a stop to the repeated surgeries, right?”

Yup, yup!

“So here’s what you’re gonna do, and you’re gonna use these words: When you see her, say to her ‘If we are going to do another surgery, I want that to be the last one. What can we do to make that happen?’” That, he believed, would elicit an effective response.

At any rate, a half-hour or forty minutes with YDK calmed me down some. But I am still not a happy camper!

Another Country Heard From…

And to complicate matters, SDXB’s daughter, an RN who has been a military nurse for decades, e-mailed her advice from Germany:

There is no excuse for a doctor not to get a mass and have the margins clearly defined on the first go, let alone the second try.  Did he pick any nodes to determine if the cancer has spread to the lymphatic system?  Did he determine the cancer type?  Did he grade the cancer?  If she doesn’t know the answers to these questions then she is not informed.  Also, Every time he is there fucking around and cutting on her he is stirring up the cancer and increasing the chance he is going to spread it. It takes one seed to get into her blood stream through her lymphatic system to become metastatic cancer,   Fire his ass and get her PCM to write a referral to MD Anderson.  You have a great MD Anderson in Phoenix.  This is a no brainer.  Why would you go to McDonalds if you want French food.  Yes, they serve French Fries, but they aren’t French.  This guy may call himself an Oncologist, but he sure isn’t acting like one.  I am surprised they haven’t removed both breasts.  Seriously.  With her family history…as her friend I would be encouraging her to get someone better. .  See list below:

We know that it’s an encapsulated papillary carcinoma, DCIS. So far, no evidence of invasive cancer has appeared in any of the path studies. When we believed we were looking at two lesions, the surgeon assigned a grade of 0. After excision revealed that it was really one entity, it was upgraded; because it’s still noninvasive, we’re at grade 1. Because EPCs are extremely indolent, it was decided that sentinal node biopsy is unnecessary, and so no; no nodes have been removed & biopsied. I’ve thought about MD Anderson…on the other hand, the Mayo isn’t exactly McDonald’s. :-D  I have no family history of breast cancer, ovarian cancer, colon cancer, or BRCA mutation; my mother died of what apparently was a gastric cancer, probably related to her 6-pack-a-day smoking habit. There’s no indication of any neoplasms in the other breast, and the chance that a another papillary carcinoma will arise in that one is set at .3%. In the first one, though…hmmmm…

1.  Get all medical records copied and sent to MD Anderson.  Their fax number is online. (Just call each doctors office and give them MD Anderson’s fax number). Give them a suspense date of 3 working days. Stay on their ass and make sure they comply.

2. She needs the hard copies or discs of all X-rays, mammos, ultrasounds, and labs done on her breast.  Gather them together…again giving each place a suspense of 3 days and hand carry or overnight them.  Some offices will do this for you.  Stay on them and make sure they comply.

3.  Have primary doctor write a referral to MD Anderson and fax it over to them.  This has to happen before they will see her so definitely push this to the max.  Be concerned if her doctor says..”.I just don’t think we are there yet.”  That just means you have probably saved your friends life.  He doesn’t know what he is doing.  Tell him you just want a second opinion.  Lie.  Just get the referral.

4.  On line there is a self referral form…the patient fills it out.  You explain what is going on…the basic history of her disease.  Your family history and past medical history. They will want to know pawn at her doctor has done up to this point and why she wants to go to MD Anderson.

After all this is done, the whole team at MD Anderson will review the chart, tests and her letter and determine if they can help her.  I got Joe Senior to go for his prostate cancer.  He was amazed at the treatment he received.  Here is the wonderful thing about MD Anderson…you don’t lose control of what is happening.  You are part of the team deciding how things are going to go.  You have the best doctors finding out the best plan of treatment, nurses finding out the best diet to support you through treatment, pain specialist to ensure your quality of life is not affected by the drugs, and a pharmacist reviewing all treatment to ensure that no medication interactions happen and chemo doses are correct, and psychiatrists to ensure that depression doesn’t kick in and your outlook is positive.  But, you have the final say in all treatments.  There is no judgement.  And, for once in a lifetime, you will be treated like a person in a doctors office.

Get her into MD Anderson now.  Seriously.

To coin a phrase: Holy shit!

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PinocchioWe’re told — I forget where, offhand — that the present generation receives the word “lie” as unforgivably rude. So, to spare any Millennial blushes, let  us discuss the Art of Prevarication.

Isn’t it amazing, what people get away with? They get away with it so frequently and so sublimely that they regard it as part of life, their natural privilege.

Ms. Neighbor — the one who was prevented from boarding my ship because my son had the cojones to go across the street and tell her “no!” — called the day before yesterday to wish me luck in the surgery and mumbled some sort of apology that I didn’t hear fully because I didn’t want to listen to her voice and so hung up on the answering machine. However, my son, a born diplomat, had told me that I should go over there and tell her how sorry I was that he ordered me not to take her in and extend my sympathies on her predicament.

He’s so polite.

So this morning I returned her call and reached her at her house, soon to be her former house. Said she, “Oh, dear, oh dear, I would never have suggested it if I had known you were going to have surgery yesterday!”

Say what? REALLY?

Does she think I don’t recall saying, “But I’m going to the hospital tomorrow for a second round of breast cancer surgery”?

Does she think I don’t recall her saying, “Oh, but I can be of help to you! Now my refrigerator can fit right here…”

Well, of course she does. Or she thinks she can make me think I don’t recall it, not quite like that anyway.

One of the things that accomplished liars prevaricators understand is that most people tend to believe the most recent thing they’ve heard. You can kind of “overwrite” a previous conversation or fact by saying something different with enough confidence, especially if your listener is elderly or not too bright.

I guess she thinks I’m a little bit of both. ;-)

She must be an accomplished manipulator. That’s prob’ly why her relatives don’t want her moving in with them.

It wasn’t until I was in my 40s that I became aware of the number of people who lie as easily as breathing. So repressed was I as a child that even to this day I find it uncomfortable to fill in a fake name, phone number, and email address on a form to get another nuisance “member card” for some retailer. So it seems to me that an awful lot of people are very, very good at lying, and they do it as a matter of routine.

When I was about 45, I met and befriended a young couple who practiced insurance fraud. The ways they collected would beggar your imagination. They awed me. I’d never met anyone like that. Interestingly — or, hell: maybe “not surprisingly” — their professional prevarication slipped over into their personal lives. You really couldn’t know for sure when some story one of them told — whether it was an episode of ordinary daily life or some High Drama — was true or not.

There’s an art to prevarication. It’s like acting: you have to practice at it. Method prevarication, as it were.

The result of coming to know people like Ms. Neighbor and the Insurance Fraudsters is unfortunate: most of the time I don’t believe anyone. When a student comes up with some excuse for why she can’t turn in thus-and-such a paper, I assume she’s lying. When a salesman claims he’s required to tack on thus-and-such a chargeable service, I assume he’s lying. Today I question the truth of just about anything anyone says. And about a quarter of the time, I’d estimate, that’s justified.

Maybe that’s just Life in the Big City?

Image: Pinocchio. Enrico Mazzanti (1852-1910). Public domain.

 

 

 

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