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. 😀 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!
This is a very tough row to hoe. Completely agree that I would not the incompetent doctor another crack at me.
Not convinced that she’s incompetent. For heaven’s sake, US New & World Report ranks this woman among the top surgeons in the country! She has very high Healthgrades scores — the only thing she’s dinged on is explaining stuff clearly to the patient, and I certainly have not experienced any such problem with her. The only soul who reviewed her at Angie’s List panned her for communication and punctuality problems that, again, I have not experienced. She has four stars out of four on Vitals.com, plus lengthy raves from patients.
When this thing was diagnosed at St. Joe’s, the people there told me that it’s a very rare condition, rarely seen. The fact that it appeared to be two discrete lesions — readily visible as two both on the mammograms and the sonograms — and then turned out to be one suggests that something unusual is going on here. I think there’s a good possibility that this thing is just STRANGE, and that she’s running into something that’s atypical and unexpected.
If that’s the case, she can hardly be branded as incompetent.
Wow! Seems like this should be less complex.
Do you still have faith in your last surgeon?
I am in agreement with YDK and SDXB [?]. I cannot attest to the skills of the doctor who did your breast surgeries, but, why was a pathologist not part of the team while you were having the surgery? Heck, I had to have a skin cancer removed via Mohs surgery and I had to hang around for the biopsies until they came back clear before I could go get it stitched up. I would think anything with breast tissue and precancerous cells would rate at least the same caution.
SDXB certainly was thorough in her recommendation and MD Anderson is a cancer clinic and appears to have good reviews. Me, I go with a nurse’s recommendation when possible.
How do you feel about the possible loss of a breast? Being prepared for no life is not the same as life with parts missing. Not sure how I would feel.
Sending prayers to the universe for you.
It’s SDXB’s daughter issuing these pronouncements…and of course, we’re lookin’ at one woman’s opinion here.
But I will say that as the hours pass, I feel more inclined to get a second opinion. I may call my gynecologist and see if she can get me in with a breast surgeon at MD Anderson or even at St. Joe’s — though I don’t trust that outfit, either! They damn near killed me the time I had appendicitis.
Medical care in Phoenix is, in general, not very good compared to what’s available in some other parts of the country. So you’re kinda damned if you do and damned if you don’t, around this place.
I’m also thinking that I should ask if they’ll comp the cost of a third surgery, since this is starting to run up. Even if Medicare & Medigap cover everything except her bill, each surgery is $250…and I can NOT get a straight story from the Mayo about whether the itemized $13,000 for other aspects of this adventure will be covered and to what extent. No one really seems to know, or if they do, they sure don’t want to tell the patient. The second surgery presumably will raise the itemized total to $28,000, and if we go in for a third, we’ll be looking at $36,000…at least. More than that if it’s a full mastectomy requiring cosmetic repair! Holy shit!
So I’m going to ask. All she can do is tell me no.
Frankly, if I’m going to have one boob chopped off, I’d prefer to have them both go, so at least I’d be balanced. I understand they can do a pretty nice job of making you look like a normal flat-chested person with cosmetic surgery and tattoos. And one nice thing about going boobless: NO MORE MAMMOGRAMS!
I would not like to be lopsided, though.
Well, boobless = no more bra shopping!
You are right – lopsided would feel odd. Braless however would have its advantages.
It sounds pretty damn traumatic. But what the hell: women get breast reduction surgery all the time and don’t seem to be daunted by the pain and the risk.
Definitely traumatic. We have a friend who had both breasts removed after breast cancer and she is enjoying her grandchildren and feels having them both removed was right for her [her mother died of breast cancer].
I hope what ever you decide you know that you have people out here in the inter-sphere that are rooting for you. And maybe you can take advantage of all those lovely people who offered help the first go round?.
Funny…I’m so sorry to hear about this mess. I’m with others that seem to have little confidence in the current “team”. Holy crud!…My DW had a splendid surgeon who came out of surgery when she had a scare years ago and with confidence said the lumps were not cancer…claims he could “smell cancer”. And ya know what this guy was an excellent surgeon who was doing this day in and day out. And sure enough DW biopsie came in “clean”. I’m with the “military nurse”get a second opinion….those military nurses know their crap and have seen it all and done it all. AND they can smell BS a mile away. I’m also wondering how the $$’s are gonna be handled. One surgery isn’t cheap…but three? Give me a break!
Yeah. But it’s important to note that every inch along the way I’ve heard incorrect speculation and wrong information, most of it NOT emanating from the Mayo. At St. Joe’s, my gynecologist told me there was not a thing wrong — that I had no masses in either boob. Next thing I know, it’s “we need to bring you back for a second mammogram to check a spot, but don’t worry, it’s probably benign.” Then “there’s a 99% chance it’s nothing.” Then one person actually told me, staring that the mammogram, “Oh, that’s not cancer — you have nothing to worry about.” Then 30 minutes later I’m being told I need a biopsy but “there’s a 50% chance it’s benign.” Then a week or ten days later, “Sorry, you have cancer.”
None of those misleading statements came from the Mayo Clinic or from Dr. P.
At the Mayo, what I’ve heard is “It is not cancer; it is a grade 0 isolated precancer.” “It is extremely unlikely to spread.” “It is extremely unlikely to become invasive.” “It is very slow-growing. Even if it has become invasive, which we believe it has not, breast cancer is very slow-growing and we can deal with it.” “We believe we can remove the lesions and, assuming there really is no evidence of invasive cancer, you can forego radiation treatment.” “We have one lesion, not two; it is now a grade 1 isolated precancer.” “No, it is still not cancer; it is a precancer.” “It is a DCIS, not an invasive cancer.” “We did not excise a wide enough margin.” “We will remove the rest of the lesion and if there is no evidence of invasive cancer, you probably will not need radiation treatment…but you may.” “We still did not get it all out. But what we did excise still shows no indication of invasive cancer. You need to speak to the doctor to decide your next step.”
In terms of stress quotient, I don’t see a lot of difference here, except that what I was told at the Mayo was a) verifiable all along the way in reliable sources published at the American Cancer Society, at NIMH, at Medscape, and at similar sites; and b) no one ever tried to reassure me falsely with foolish guesses that nothing bad would come of the damn thing.
In terms of what I’ve been told by professionals, a lot of what I heard at St. Joe’s was bullshit. None of what I have been told at the Mayo has been out-and-out bullshit. Yet.
Really: should I believe a lady with a four-year degree in nursing whose experience is in a base hospital’s emergency room, or a medical doctor with an MD from Vanderbilt, a fellowship in oncological surgery at the NIH’s National Institute of Cancer, a residency at Case Western’s University Hospitals of Cleveland, and twenty years of surgical practice?
My money’s on the MD.
I am going to ask for a break on the bill, though. 😉
Praying for you. This is a nightmare but hopefully it will be over soon with a happy ending.
2nd opinion never hurts, go for it.
I wish you well Funny….But it has been my experience thru my folks “adventures” that the Doc are busy folks and sometimes don’t have the time or inclination to figure things out. BUT the nurses are there “soup to nuts” and more than likely have seen cases like this before. Some with good outcomes…others not so much. The important thing is that you are comfortable with the decisions that are being made….this is your life. Just puzzles me that in this age of 3D cat scans and such that they can’t tell more about this “precancer/cancer growth” and it’s size. I have seen CT scans of my Dad’s lung cancer and the growth and shrinkage of nodules that are measured in “milimeters”…in laymen’s terms that smaller than a “gnat’s butt”….
Yup. That’s what I want to know: why can’t you image this damn thing?
No cat scan has been made. The only imaging technology has been mammography (which is X-rays) and sonograms.
Have you found some good cancer blogs? Ann Silberman is really good and has a wealth of information on her site.
http://www.butdoctorihatepink.com/
I’m sorry that this situation is just dragging on and on. Whenever you get a serious diagnosis, a second opinion is always a good idea.
I am not sure what to say… it is very above my head. I do hope for the best, and it’s good that you have others to help you form an opinion when you yourself are in the middle of such mess. Keep up the hope. I wouldn’t want to subject myself to repeated surgeries either… I don’t think anyone would. So I hope they can get you an answer to “what can we do to not have surgery again?”.