Okay, so after I had arranged an appointment with the medical oncologist my gynecologist wants me to see for a second opinion about the advisability of further surgical attempts at a successful lumpectomy, Young Dr. Kildare became concerned enough that he unilaterally scheduled an appointment for me with his choice of oncologists.
Interesting. I decided to take a chance that I will have to pay for one or both of these worthies out of pocket — surely there’s a limit to what Medicare will cover — just to see what TWO of them would say.
Yesterday I spoke with YDK’s guy.
He seemed like a very nice man — certainly has a thriving practice: there must have been 20 cancer victims sitting around the waiting room. He seemed very smart, very empathetic, and open to answering all my questions, which are manifold.
So as he’s talking, he says something that really drops my jaw. And he says it more than once.
He says that ALL incidences of DCIS turn into cancer. Therefore what remains in my boob must be removed, and if I were his wife, he would recommend going straight to a mastectomy.
Well. There are several good reasons to turn directly to a mastectomy without trying again for a successful lumpectomy. But “all incidences of DCIS turn into cancer” ain’t one of them.
It simply is not true.
It is not true that all DCIS turns into invasive cancer. By 2010, M.D. Anderson researchers were estimating that 40% to 50% do so — meaning that even then, they thought 50% to 60% do not do so. More recent estimates peg the conversion figures at closer to 15% to 20%.
So that was unnerving: a specialist in breast cancer treating God only knows how many people who directly contradicts the facts. And contradicting my surgeon, my gynecologist, the Mayo’s medical oncologist, and the Mayo’s radiation oncologist, all of whom seem to have managed to get their facts right.
He also interpreted the records from the Mayo as saying the surgeon had found two growths in the boob: the EPC*, which he says she has removed, and a DCIS, which she has not yet fully excised. That’s not what she (or anyone else) has told me: the EPC is the DCIS. So, either the Mayo team is obfuscating or this guy has no idea what he’s talking about.
Wow! This is one scary trip through the medical funhouse!
*EPC: “Encapsulated papillary carcinoma”: a rare type of DCIS, a condition thought to be preliminary to development of breast cancer.
Holy crap! I wouldn’t know whether to be astounded, or furious. Well, probably both.
I dunno which, either.
The question is, is he lying or is he ignorant?
It’s hard to accept the latter — he is, after all, board-certified in internal medicine, oncology, and medical oncology. So you would imagine he’d be aware of developments that began to appear in the literature in 2010, and probably sooner.
My guess is that there are doctors who develop a patter to persuade patients to do what they (the doctors) think is best. They believe you may lose your life, and to save you, they need to get you to comply with what they believe to be the best course of action. To accomplish that, possibly some of them emit some disinformation.
Consider: when you are told you may or may not have a cancerous lesion in your body, or that you have a lesion that COULD develop into cancer but may not, what are you to think? First, the very word “cancer” strikes terror in your heart. You are simply scared shitless. Even if you’re not afraid of dying, you most surely are afraid of the suffering that so famously surrounds cancer.
Second, the treatment is highly aversive. You do not WANT to have somebody slicing pieces of your body off. You do not WANT to be surgically mutilated. And you certainly do not relish repeated uncomfortable tests, invasive biopsies, and surgeries extending far into the indefinite future.
Some people’s natural instinct, faced with this predicament, will be to run away from it. A certain number of patients will say “thank you very much” and walk out. Another number will resort to wacko alternative “treatments” that may do no immediate harm but that will delay effective treatment until it will do little or no good. Some people, given all the facts, will make an educated decision to take their chances — indeed, if I had known the full story about EPCs, I probably would have elected a watch-and-wait strategy. Fully armed with the facts, there’s a very good possibility that I would have declined surgery at this time.
All these possibilities run counter to any doctor’s motives. A good doctor would like you to live out a generous life span and to do so in good health. Thus to persuade you to do what he believes has the best chance of making those things happen, he may massage the facts in such a way as to herd you in the direction he wants you to go.
And all doctors have to make a living. The more treatment and surgery the doctor can dispense, the better that living will be. Thus all doctors have a financial motive to get you in their system and keep you there. An unscrupulous doctor could very well sculpt the facts in such a way as to persuade you that you need as much treatment as he or she can offer.
Whatever the motive — altruistic or avaricious — I personally do not appreciate being fed incorrect information, especially when that information seems tailored to panic me into doing as I’m told.
*speechless*
Funny, I’m sorry you’re going through a very frustrating time. As a friend of mine says, there will never be a cure for cancer. There’s too much money in it.
LOL! Right on!!
I find the medical edifice in our country (probably in any country) frustrating no matter what the ailment.
WOW….Is this Doc about the same age as the first Doc? My thoughts are if so they were “educated” about the same point in time and therefor their thought processes would be very similiar. BUT to say that DCIS ALWAYS turns into cancer… just isn’t so. What a dilemma! First Doc with less than stellar performance and then second-opinion Doc who doesn’t know what the hell they’re talking about. As for me I’m a big fan of the wait and see. And suggested this with my Dear Dad’s lung cancer. But the Doctors insisted we move forward quickly and my Dad agreed. I will always wonder if we did the right thing. Which…IMHO…is what you will always wonder….
It’s even harder to tell before the fact than in retrospect, and even in retrospect second-guessing is always a difficult enterprise.
Some lung cancers can be held off for quite a long time. A friend of La Maya’s lived for quite a few years with lung cancer, and during the periods when it was in remission, he had a decent life. As I recall, he was being treated at the Mayo. On the other hand, one of the neighbors here in the ‘hood has it; he did go into remission after a course of treatment, but not for long. Within a few weeks it came right back. It probably depends on what type of cancer you have and how long it’s been lurking around.
The five-year survival rate for lung cancer that has not metastasized is 52%. Not very good odds, but not so bad that one would want to throw in the towel without at least trying to beat it back. Here’s an enlightening short article explaining what “survival rates” actually mean and how you can use them to help make decisions about treatment: http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517
“Always wonder” is pretty much the name of the game, isn’t it? I suppose in most endeavors we can’t really know whether we’re doing the “right” thing as we move forward. And in retrospect…well, it’s sure easy to second-guess. But even then, we have no way of knowing whether a different decision or sequence of choices would really have led to a better outcome.
The doc in question is 45, according to Healthgrades, which gives him a middling score overall. But for crying out loud: he’s board-certified in oncology. He SHOULD know something about the characteristics of DCIS, no matter what his age.
The problem with survey sites like Healthgrades and Vitals.com is that they require you to leave your e-mail address. It’s a problem and not a problem: obviously anonymous reviews could be slanderous. On the other hand, some of us have grown wary of giving out our e-mail addresses. I now flat refuse to do it, and if forced will give a g-mail address whose sole purpose is to catch spam. So I’m sure doctors annoy many people who are not about to post a negative review if they have to divulge an e-mail address to do so.
The “defining moment” for me in my Dad’s fight was when I asked how long he would have if we did nothing. The Doc replied ….he could have 6 months….the key word being COULD….which IMHO is the biggest five-letter word there is and should never be confused with the words Would or Will…. Of course he COULD have 10 years…who knows. The most frank discussion which I appreciatted was with his surgeon who removed his lower lobe when we were discussing the “game plan”. He discussed the removal, what it entailed and recovery as well as the need for chemo as a possibility. I summarized …”So your doing this surgery and chemo if we need it in the hopes this will keep the cancer at bay long enough for something else to kill him”…Without batting an eye…he replied..”EXACTLY”. And added if this happens he did his job…Been 2 years this month… just hope the ol’ guy realizes what a gift this is…. Good Luck Funny…
So your dad is still living? That’s huge!
It’s the same thing with breast lesions in women over about 70 or 75: breast cancer grows so slowly (in most cases, especially in elderly women) that you’ll probably croak over from some other natural cause before the cancer gets you.
Hey. You’ve gotta die of something. Of what probably doesn’t matter, if you can evade intense suffering and lengthy disability. My plan is to drop dead of a heart attack; failing that, it’s a flying leap off the North Rim of the Grand Canyon.