Based on comments, I'd say readers of this blog are pretty sophisticated; so at the risk of boring some, and before flying off in various directions on the topic, let me establish a few basic breast cancer bits.
First, the most basic of all: what is cancer? Most all of the tissues in your body have a cycle of life and death, as cells die off and are replaced by new ones. This is especially true of surface cells, like skin and those that form inner linings: glands, guts, various tubes. Different cells have particular rates of division and reproduction, timed exactly to replace those that die off: dandruff is proof of the process, if you need any. For a few reasons, a cell may mutate in such a way that it loses the control of the replication rate, dividing more rapidly than needed to replace its cousins. The cells formed in that division process have the same misinformation, and the process continues, producing a cluster of cells: a tumor. If that tumor grows slowly and stays where it started, we call it "benign." If it grows more rapidly, and especially if it develops the ability to invade through local barriers and into blood and lymph vessels, by which process it can spread elsewhere, we call it "malignant" -- cancer (or "carcinoma.") Cancer carries the name of its organ of origin, no matter where it ends up: breast cancer means cancer that started in the breast. If it spreads to the liver, it's still breast cancer, not liver cancer. In the breast, there are two main cell origins: the ducts through which milk flows (from which arises the most common form: ductal cancer), and the glands (lobules) that produce milk (from which arises lobular cancer.) Behavior of the two is slightly different, but the treatment is essentially the same (lobular may grow a little more slowly, but has a greater tendency to occur in both breasts.) There are a couple of rare types; and there's the whole issue of cancer in its most early -- and theoretically 100% curable -- form, ductal carcinoma in-situ. (DCIS -- an entire treatise in itself. Maybe, at some point...)
The goals of breast cancer treatment, from a surgeon's point of view, are two. The first is to eradicate the cancer from the breast, and the second is to get information about how far it might have spread from the breast, mainly by removing some regional lymph nodes for analysis. Many changes have occurred in the achievement of each of those goals.
If a breast has a cancer in it, there's a significant chance some cancer cells exist elsewhere within that breast. If the only treatment were to remove the cancerous lump, many women would in fact be cured; but at least thirty or forty percent would have recurrence. Since there's no way to determine with certainty when a woman might be in the first category, the entire breast must receive treatment. (I've seen many a frail and very elderly woman for whom I felt it best simply to remove the lump -- often in my office under local anesthesia -- perhaps adding hormone treatments (more later on that subject), and following along, expecting another of life's end-games to play out before the cancer ever would. But those are very individual cases.) As I said in the previous post, until around thirty years ago, breast treatment meant removal, usually by radical mastectomy. Over time that most radical operation was modified (known now as the "modified radical mastectomy"), still involving removing the entire breast but leaving enough skin to close the incision, and leaving the muscles on the chest wall. It's significantly less disfiguring and disabling, but still is complete removal of the breast.
The other option is to remove the cancerous lump with a rim of healthy tissue around it, and to treat the remaining breast with radiation. As both surgical and radiation techniques have evolved, the cosmetic results are usually excellent (as opposed to my description in the previous post), and the local control (meaning absence of local recurrence) approaches (but does not quite match) that of mastectomy. There are a few situations that mitigate toward choosing mastectomy (multiple or very large tumors, mainly) but for most women, how the breast is treated is a matter of personal choice. Some readers might be surprised to learn that many women prefer breast removal to breast preservation. And like many other emotionally charged issues, the choice has become complicated by factors beyond such simple matters as cure and personal comfort.
"If your surgeon tells you you need to have your breast removed, find another surgeon," says the woman who's the subject of my previous post. Said, more properly. No longer says. Took her a little longer to get it. What's wrong with that recommendation is that, first, there are a couple of situations for which there really is no option but removal of the breast. I'll get to them eventually. Second, some women simply don't want the stress of worrying about what's going on in that remaining breast. Many women have had lots of lumps and lots of biopsies before developing cancer. Surgery and radiation can cause lumps and mammographic abnormalities which change over time and which may require biopsies to be sure what's going on. Some women simply don't care that much about that aspect of their appearance (I've always thought, paradoxically, that that was the most liberated view of all -- the opposite of the "women's movement" argument). Or they elect peace of mind over concern about some aspect of appearance. It can be a strange thing: when a woman chooses mastectomy, there's an assumption on the part of some folks that either her surgeon is an idiot or a pig, or that she's in some way falling short of her obligations to.... to whom, exactly? It complicates things, sometimes.
It's another paradox: much as it's a step forward in healthcare that people are taking more and more charge of their medical decisions (the days of the god-like doc telling a patient what will happen and expecting no questions are happily and long gone) there are times when choice ain't all it's cracked up to be: when faced with a deadly disease, many people want someone to take charge and tell them what to do. It's a copout, in my opinion, when a doc basically tells a person, well we could do A, B, C, or D. Let me know when you make up your mind.... I think it's a doc's obligation fully to inform, lay out the pros and cons of the various options, but also to state an opinion of which is the better choice, if that doc has such an opinion. For breast cancer, I'd get asked for my opinion very often; and in most cases I'd honestly say I thought the options were equal and that it really came down to which the person felt, at her core, would make her most comfortable. When there were specific reasons why I thought mastectomy was safer, I'd say so. And when I thought there were reasons why lumpectomy and radiation might produce a less than satisfactory cosmetic result, I'd say so; likewise, when I thought post treatment surveillance would be an issue. I ended up doing a fair number of mastectomies: whether that reflected an unconscious bias on my part, I can't say with certainty. Twenty years ago, when the data were young and the radiation treatments were less reproducible, I'd have to say yes. In recent times, I don't think so. I know I had no problem with women choosing preservation in the vast majority of cases. But if it were me, or my wife -- and as a male person I happen to be among those that deeply loves the female form, visually and tactilely -- I'd start with the idea mastectomy (for its lowest chance of local recurrence, for avoiding the hassles of radiation, for simplicity of followup) and work back from there. For a small tumor with favorable parameters (guess that's another thing we need to get around to, eventually) it would probably seem like overkill. That's just for the record, since this is a personal blog. It in no way means women who choose otherwise are making a poor choice; not one bit, whatsoever. And my wife would make up her own damn mind, thank you very much.
We still haven't talked about lymph node testing. That's next, among other things.
16 comments:
If you get a choice, it is nice to have guidence. Many of the survivors that I speak with are confused by the choices at a time when they are in a deep state of shock and fear. My surgeon was awesome. My cancer was such that there really weren't a lot of choices that I could make, but everytime I asked her why we were doing it this way, she would explain it to me again. It took me until I was finished with treatment to fully understand what had happened.
Very informative. I enjoyed reading it and look forward to reading more. I'd also be interested in reading your thoughts on prevention, when and should you get around to it.
As a cancer survivor, (not breast), I can't tell you how much it meant when my doc. gave me all my options. He told me all the pros and cons of each. I then made up my mind as to what I wanted. He spent atleast one hour with myself and my husband on that day. He used medical books, and atlases to make me understand what was happening inside my body. I appreciated it so much!
This is all very informative. Thank you!
I always wondered, if breast conservation surgery was done, how does a surgeon know he really has clean margins? How does he, or she, feel confident they've gotten it all?
anonymous: it's a good question. We can't always tell. When there's an obvious lump, you just give it room. Then the pathologist looks at the edges under the microscope. It's not entirely accurate. Sometimes you find that cells have streamed away from the obvious lump, via the ducts, and you have to go back and take more. Most of the time it's done by look and feel: you give the lump what you know to be enough room, and you can tell grossly that the tissue you are cutting through is normal. But it's hardly precise, and not always correct.
When I had breast cancer 8 years ago, my surgeon presented the choices but obviously leaned toward biopsy and radiation so that is what I had. Later, on reading more about the risks and discovering I probably carried a BRCA gene, I tried to get a bilateral mastectomy for preventative reasons and was refused another surgeon I was referred to. I detest the way some people make this a political issue and a choice they make for others.
As a breast cancer survivor, I had NO choice-two sizable tumors in one breast would have made for a bad result with lumpectomies. I was 40 at the time, but living to bounce my grandbabies was more important that looks at that point. I had a modified radical mastectomy on that side followed by a simple mastectomy on the other. Yes I did bilateral reconstruction. I am now at 3 yrs 2 months of survivorship. My kids were 2 and 7 at diagnosis.
I also did chemotherapy and radiation. I chose life, and did not look back. I did have excellent surgeons and doctors.
Deb
feralhiker: I don't disagree with anything you said. If you indeed carry the gene, I'd assume you'll be able to get bilateral mastectomy covered, if that's what you choose.
Anonymous: sounds like you are doing great! Glad to hear from you
I'm a little late coming to this series, so forgive me for commenting on both this and the previous post.
I've seen the female surgeon on TV, the one you have been alluding to, though it's been at least 10 years since I last saw her. What I recall is her being plain-spoken about breast cancer, and explaining this disease in easy-to-understand manner. What I most remember is her saying that it's not the tumor in your breast that kills you, it's the spread of the tumors to your lungs, liver, brain, etc. that is lethal.
I think she was one of the first surgeons to write a book about breast cancer, though I'm sure there have been others since then. How sexist she was/is towards male doctors, I can't comment on, but I don't think it's an attitude that does anyone any good. At any rate, her books have helped increase the knowledge about this disease amongst women.
You mentioned about the women's liberation movement and the decision to not have reconstructive surgery. I first became aware of this choice reading the book 'Our Bodies, Ourselves', which was written by women who were/are involved in liberal side of women's issues. The book had a photo of a woman showing her mastectomy scar, and not being ashamed of it.
And last, but not least, the French and their propensity for radiation therapy. France is where radioactivity was first discovered, by Pierre and Marie Curie, and other physicists. And it evidently is the country where radiation therapy for cancer was first developed. So, they have a long tradition using this approach, and are proud of it.
Ren: thanks for a great post. And I agree, and as I said, she indeed wrote an excellent book which I've suggested to many a patient; and she dropped her shtick over the years..,
And, coincidentally, "Our bodies our selves" was written by women who were friends and classmates of my wife in college... (Some or all of them -- I don't recall for sure)
Sid,
Unfortunately it is not true. My mother had a cancerous lump and BRCA gene diagosis. Then she had several more lumps that weren't cancerous, but made her worried sick. She was 60 and really wanted a bilateral mastectomy. Her doctor agreed with her too. But the insurance company (she worked for U.S. government and had decent insurance) said no. They said not until she had another cancerous lump!! I feel very sad she had so much needless stress in her life. She then got colon cancer diagnosed at stage 3 (she got a colonoscopy the year before, was the healthies person you'd ever meet) and the little southern town she'd just moved to delayed everything so long it turned inoperable. She then got a lot of breast lumps. At that stage in the game of course why torture her by a lumpectomy. Healthcare in the country is truly terrible.
cybergrace: that's a very sad story, and highlights another reason why I favor (as I wrote in this blog) some sort of single-payor system: it would eliminate (hopefully) the wild differences among plans, all of which are trying as hard as possible to avoid spending money. Assuming -- which isn't a sure bet -- that the rules would 1) make sense and 2) be applied fairly.
I finally got my insurance and my doctors on the same page. For the past 2 years, I've been trying to get a prophalactic mastectomy. Well, finally got it (I had a strong feeling they would find cancer but hey, what do I know), and it looked okay... except the path report came back that I had a 2.3cm of ILC. Thank the gods of surgery, the margins were negative. Unfortunately, no SLND was done. Rats. But we did go ahead and do an axillary lymph node dissection later. 12 out of 12 negative. Can't say I'm happy but the future doesn't look too bad. The cancer is ER and PR positive, HER2 neg. The only bad spot is that the Mitosis rate was 10 on a 1 to 10 scale.. Not too sure what that indicates but after reading the St. Gallon International report from 2011, I can say it's probably not a good thing. So here's the rub. First no one would believe I needed this surgery (family fought it, docs didn't agree, etc., etc.) now, having had the mastectomies and not having immediate reconstruction, the docs don't understand why I don't want ANY reconstruction. So I finally hauled off and said to my surgeon, and oncologist, reconstruction for whom? I want another surgery so some man can look at me and feel comfortable? I don't think so (I'm 62 and this attitude is pretty sensible in my opinion).
Funny how styles of thinking follow the ability to do things - I mean if cosmetic surgery wasn't were it is today, would they be pushing reconstruction like it was your obligation to go through with it? And as far as women's rights, I remember back in the day when women's rights included burning your bra. So I figure I'm just taking the bra burning one step further.... hmmmm.
This and you others on other posts are excellent comments! Thanks for them.
My wife choose not to have reconstructive surgery after a bilateral mastectomy. Straight people mostly didn't understand. It helped that we're a lesbian couple and had a more supportive community. Therapy was also very helpful in dealing with the negativity from society. Loved the sister who told her surgeon, why get reconstructive surgery to make someone ELSE comfortable. Amen! I think Jesus would say that too.
Thanks for posting this. It's a complicated and freighted decision, for which the opinions of others ought not weigh very heavily. I like what some women have chosen to do with tattoos, too!
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