Breast Cancer, Again

In September of 2011, I had my third breast cancer removed. In November of 2014, I learned I have a fourth breast cancer. As with all the others, this one is different in character from the previous breast cancers I’ve had. That means it’s known as a “primary” breast cancer, rather than a “recurrence” or a “metastasis”. For reasons I don’t understand, my body makes different kinds of breast cancers. Over the years, I’ve come to learn about each one … not as well as a medical student, but enough to be reasonably educated about my treatment options and decisions.

My initial response to this news (which I got late yesterday afternoon) could be characterized as “numbness”, or maybe I’m just used to it by now. I’m not frightened by it. I’m not worried or concerned about it. Based on what the breast cancer surgeon told me, the tumor size is less than 1 cm (Stage 1), and it’s not aggressive. As breast cancer tumors go, it’s on the whimpy side. In a very real sense, it’s hardly worth getting worked up about.

But here’s the thing: this breast has now had three breast cancers, and with this latest one, it will have had three surgeries (lumpectomies) to remove the tumors. It’s also been through radiation (first breast cancer), which means:

1. Radiation doesn’t prevent further breast cancer in the breast that’s been treated (I really wish I’d known that back in 2001);

2. Skin that’s been irradiated doesn’t heal as well as “normal” skin, so my post-surgical recovery is going to be less than predictable. I’m hoping for the best, of course. I always do.

The above is so matter-of-fact, I’d have skipped it, but in case you happen to be reading this at a time when you’re trying to decide whether to go through breast radiation, I decided to give it a mention. My best advice: learn all you can about it, and (most importantly) listen to your body. My experience with radiation didn’t work out all that well for me, but that doesn’t mean it won’t work for you. Do your homework, then give a healthy dose of credence to your gut instinct.

My homework now is to try to figure out what to do about my body’s inclination to make breast cancer. Since my last “bout” in 2011, I’ve been on supplements designed to keep breast cancer away. So this news will be upsetting to my very fine naturopathic doctor, who has been my guide on supplements and inspiration for alternative treatments. I can’t say I’ve been the idyllic patient (I drink too much wine), but I haven’t been entirely irresponsible either. In truth, it doesn’t matter: the approach didn’t work. So now what? I’m sure she’ll be wondering the same thing. It’s a set-back, but I already know there’s no sure cure. How can I blame anyone for doing their best to help and it didn’t work? I can’t.

Other than the decision to go through radiation in 2001 (a decision I regret), I’ve refused all other “standard care”. That means I’ve turned down chemo, Tamoxifen, Arimidex, and the like. Why? The side-effects can seriously impact quality of life, even after you stop taking the drugs. I know this because I’ve searched the web and found far too many women posting their stories about the experiences they’ve had with these drugs, including lingering and painful side effects for years after they’ve stopped taking them. Without consulting their doctor, many have taken themselves off the drugs. All too often, I’ve read “A life like this isn’t worth living”.

A rational reader would understandably wonder why I’d assume I’d have these negative side-effects, since not all patients do. I have only one answer for that: when it comes to my health, if something rare can happen it’s going to happen to me. If you were to put me on a bell curve with other breast cancer patients, I am — in all respects — at the far edge of the curve: no where NEAR the middle. Thus, even a small chance of life-long joint pain, or debilitating fatigue, isn’t worth the risk to me.

So here I go again. I’ll research what I can find and then listen to my body. One problem right off the bat: the medical community doesn’t follow women who refuse post-surgical care. Standard western medicine doesn’t know how many breast cancer patients have survived or died as a result of refusing chemo, radiation, drugs, and/or surgery. They have little information about, or interest in, what patients are doing for themselves. That means they don’t have all the relevant information when they present findings of their clinical trials. Since they don’t track, or include, information about those of us who don’t buy their wares, their information is incomplete. Or, put another way: their science is incomplete.

At best, I can do Google searches on terms for patients like me, which goes something like this: “65 year old with history of 4 primary breast cancers”. There are many variations for this kind of search (I tried all I could think of when I was at 3; researching for 4 won’t be easier). With luck, I might find a chat room where there’ll be a woman or two with a history similar to mine. But for the most part, this is a road I’ll need to pave for myself. So far, I’m okay with that.

A Winding Journey

Recently I read a blog by another “breast cancer bandit” — someone who’s turned away from “standard western care” — who is forging a new life for herself, and by that I’m not kidding: she’s changing a LOT about how she spends her time, what she eats and doesn’t eat, how often she exercises, who she’s friends with, the supplements she takes, and I’ve got to assume it works for her.

Me? I’ve changed a fair amount of what I eat and don’t eat, my exercise, supplements, and the like. But I’ve changed in a more moderate way. I can say this with certainty because I just had a small, but very tasty, helping of brie and crackers… the antithesis of a nutrient dense approach to long term survival.

The truth is, I rarely eat cheese and crackers, but I eat them. I rarely eat sweets, but I eat them, too. The only food I appear to be able to put out of my life — pretty much entirely — is red meat, and even then I’ve snagged a bite off a lamb shank I’ve cooked up for hubby (very flavorful and so tender it melts in your mouth).

The thing about this woman’s blog — the woman who’s changed her life a LOT — is that she’s quite insistent about the changes that need to be made to beat the dreaded cancer. I’ve been giving that a lot of thought, wondering why I don’t feel so compelled even though I, too, turned away from standard western care.

Let me be clear, I don’t want to pick on this girl, or negate her life changes. There are women who will benefit by what she’s written. But there are woman, like me, who will wonder if we’re doing enough and by “enough” what do we really mean? And that’s how I came to write this entry.

I grew up in the white-bread 60s, when TV dinners were lapped up as if they were gourmet meals, and Hamburger Helper made its way into our parents pantry. The first meal I ever served to a guest, as an adult in my first home away from my mother and dad’s, was beef stew with biscuits. Back then, I thought it was classy. My mom had taught me how to make it and since this was during the “hippy” years, it was one of the few meals I knew how to make which could be cooked up in one pot: an essential when you’re living in a garage with a single-burner hot plate.

As I got older, my tastes and cooking skills changed and (I hope) improved, although I didn’t turn to organic foods until after my first diagnosis of breast cancer in 2000. Back then, I thought buying organic would be all I’d need. Then, in 2006, with a second breast cancer, I realized I had to be more picky about which organic foods I made (let’s just say I learned that an organic pizza isn’t any healthier for you — not really — than a non-organic one if you’re trying to ward off breast cancer). So I refined my cooking further, dropping most processed foods, and turning instead to organic meats, dairy, sugars, grains, fruits, and nuts. By the time my third breast cancer came ’round, I panicked. All my adjustments hadn’t eliminated the underlying problem. I turned to juicing and eating only nutrient dense recipes: no meats, no dairy, no processed foods, all organic veggies and fruits, whole grains, nuts, legumes, vats of supplements.

As the year after my third breast cancer passed, I was forced to assess what I was doing because, quite frankly, I wasn’t enjoying much of anything. The juices are fine. The veggies and fruit are great. The grains can be delicious. But so little of it was familiar. The question became a looming one: am I up for changing my entire life so the last 10, or 20, or 30 years are cancer free? And, stunningly, even to me, the answer is no.

After my third diagnosis of breast cancer I was convinced I’d stay with a nutrient dense diet and everything that meant. We got all the CDs and books of Dr. Joel Fuhrman, and we watched and read them all. I made recipes from his website as well as his books and I stuck with it for about three months. I began to stray because — and I mean no offense to the good doctor — the recipes were tasting alike. In short, I got bored, eating the same flavors over and over again. I tried different recipes, looking for ones that don’t taste alike, and the closest I got was the Thai Curry which takes forever to make. Cruelly (for Dr. F.) I had found a recipe for Thai Curry years before which contained all nutrient dense ingredients and which took about 1/4th the time to make. That was the door through which I began to escape Dr. Fuhrman’s regimen.

And then came a nail I wish I hadn’t hit: I read the doctor’s October 2012 post about Breast Cancer Awareness. He started with an excellent point: how many of us aren’t really aware of breast cancer? I’ve resisted “breast cancer awareness” — and the focus it gets — in October, too. It’s as if I’m a breast cancer survivor in October, and during the other months I guess everyone forgets.

In any case, I liked Dr. Fuhrman’s opening comments so much that I read the whole article, in which he references the results of a clinical trial in support of what he was writing. Then I did what most readers probably don’t do: I read the study he referenced and, in so doing, I found that Dr. Fuhrman had cherry-picked his “datum”. The point he was making in his essay wasn’t strengthened by the study, except it looks good within the body of the text to see a reference to a study which contains the word you’re using. And that’s pretty much what he’d done. With that I lost at least half my belief in what the man has to say. Well, I have to admit: the fact that he charges for use of his website, and tries to sell cancer patients healing products, makes him seem to me a profiteer, preying on those of us looking for assurance that we’ll be alive until we die a natural death (as if we know when, and how, that might come).

So I spread my wings a bit. I started to think about what diet made sense to me and which I could stay with over the long term. I’m still in the middle of this, but here’s what I’ve found:

• I have very little problem not eating red meat, but I still like some chicken and fish… maybe once a week, sometimes less so

• I love cheese enough to keep it in my diet, but I’m generally able to moderate it so I don’t eat more than an ounce or two a week.

• I’m not usually drawn to eggs, but now and then they’re what I want (maybe once a month…or less).

• I still like wine, although my taste for it varies now: sometimes I want it, sometimes I don’t. I follow my body’s directions.

• I like fresh fruit and veggie juices, which hubby makes for me 4-5 times a week.

• I don’t react well to proceed foods, so I avoid them as much as possible.

• I like some salt and olive oil, so they’re part of what I cook with, although used in smaller quantities than previously.

• I tend to eat mostly vegetarian meals, and often vegan.

• I eat more salads than I have traditionally, but I’m still having to force myself to make them.

That’s what I’ve come up with so far, other than the fact that I’m obviously not a girl who aspires for radical change in my creature comforts. For all I know, the girl with the extreme diet is in her early 30s and hoping for a long and happy life with kids and all the rest. At 63 (still young, I know) there’s much more is in my rear-view mirror than there is ahead of me. This doesn’t make me sad or frightened. It’s the way things go. There’s nothing to resist or worry about. It’s all going to come to an end one day, and I want to be one of those who gets to say: “I had a really great life!”

I know there are those who will disagree with, or won’t understand, my admittedly half-ass-sounding approach. But to me, it’s a reflection of who I really am, and the comfort I find in that is beyond words. It’s as close to God as I get.

Sometimes, it takes time

I’ve been mulling this over for some time and finally decided to post what I’ve been mulling in case others are in the same (or similar) boat: I haven’t fully rebounded from the experiences I had at Moffitt Cancer Center in February and March of this year with an INCORRECT diagnosis of Inflammatory Breast Cancer.

Being WRONGLY diagnosed with a deadly form of breast cancer triggered more emotions than I’ve experienced with any of my previous three diagnoses. For ten days I tried to absorb the fact that it was likely I’d be dead in a year or two. And at the end of that ten days, the doctor who’d misdiagnosed me wasn’t willing to say she was wrong — despite all the tests that came up empty. She offered no comfort. And despite the fact that the outcome was as good as it gets for breast cancer patients, I’d been badly shaken.

When we returned to our home in New Hampshire, I had a follow-up visit with my regular breast cancer surgeon: the same woman who’s helped me through all three diagnoses and surgeries. She’s always known me to be a well-educated patient with strong opinions about my treatments. During that meeting, I found myself telling her things I hadn’t known I’d say.

I started by telling her the Moffitt experience had broken me. I no longer had much faith at all in western medicine and I’m offended by the lack of information on side effects of treatments, including the one that someone who’s had radiation on a breast is likely to develop another breast cancer in that same breast around 10 years later. As it happened, I was right on  time with my third breast cancer.

My thinking had evolved to this: how much am I willing to change my life to prevent another breast cancer? Change my diet to such a degree I no longer eat the foods I once thought were healthy enough? Lose weight so I’m rail thin, thereby eliminating the potential danger of fat-induced estrogen which might (repeat “might”) cause another cancer, or a recurrence, or a metastasis? Take so many supplements designed to prevent cancer that they don’t all fit in my hand? Doesn’t this add up to making breast cancer a more dominant element of attention when my goal has always been to live my life as normally as possible until I can’t any more: this is, quality over quantity?

The Moffitt experience threw me way off balance. Everything I’d learned to appreciate about breast cancer was overwhelmed by the reality that I have no power against a deadly form of it. And here’s the kicker: I’ve never wanted to “fight” breast cancer. I’ve wanted to understand it, work within that understanding to care for my body, and take the blessings that come with “being a survivor” while setting aside the rest until it’s time to die of it, or whatever might happen that forces my focus to needing to deal with it 24/7.

I told my lovely breast cancer surgeon that I’m fully aware I’m at a very high risk for more breast cancer. I told her that spiritually, I’m okay with the idea of dying from it. I’m at peace with that, although as I said it I reached to touch my husband — who is always at my side during these appointments — and added “Of course, I don’t want to leave my husband”… and with that I began to cry. I looked up at the ceiling as I talked through my tears, trying to reassure my surgeon (and me) that I’d be okay. When I turned to look at her, she was crying too.

I’d done a lot of homework before that appointment. I’d learned that women who’ve had surgery on their breasts before they have mastectomies are at a high risk of living in excruciating pain across their chest (or around their entire chest and back) for the rest of their lives. Because of this, I’d ruled that option out. To my surprise and relief, my surgeon agreed.

I’d read more about Arimidex and Tamoxifen and their side effects which, in my case, would compound already existing and painful conditions. I wanted to rely on dietary changes and nothing more. Again, she agreed.

I wasn’t sure I wanted more mammograms, although I knew I wanted to follow up with her on a routine basis. I mentioned the possibility of thermography rather than mammograms. She told me she’s not trained in reading thermography scans but that she’d try if that’s what I wanted.

And then she something like this:

“Look at you: you’ve had three primary breast cancers and you’re still here. You’re healthy. You obviously know your body better than anyone. You also know as much about breast cancer as any patient I’ve had and you think well with the subject. So far, it’s working. So far, you’re beating it.”

We discussed what would happen if I was diagnosed with still another breast cancer. I told her if it was confined to my breast, I’d want it surgically removed with no further western treatments. She agreed. I asked how I’d know if breast cancer spread to other parts of my body, and she said that with the last breast cancer I had (Invasive Lobular Carcinoma) it often goes to the bones: she said it would be an aching that doesn’t go away. I’d also read it can go to the pancreas, which I mentioned  to her and she said “that too”. I told her I felt I should develop a relationship with a pain specialist before I need that kind of care. I have such a high tolerance for pain killers that Anesthesiologists are wary of how much I need. She thought it was a very good idea to cover that base beforehand.

We reached a new level of understanding of one another and, I believe, a mutual respect for what we can each bring to my care. I left that day feeling something profound had happened although I wasn’t sure what. At the very least I knew I had a breast cancer surgeon who’s truly on my side.

After a few weeks thought, I decided that — to date — my breast cancers have been found (and in one case confirmed) via mammograms and were then removed by my lovely surgeon. I decided that since that part of my care wasn’t broken, why fix it? So I scheduled a mammogram for late October of this year. I don’t dread it. Mammograms — for me — have been a helpful tool that’s probably saved my life a few times. There are other tools which may well be safer. Call me a traditionalist but I’m not going to switch tools now.

With my future breast cancer care more-or-less planned, you’d think I’d have been free to live by my own best lights: some changes in diet, exercise as best I can, laughter as often as possible, a life full of the activities and people I love.

But instead, I’ve withdrawn more than I’d have expected. Part of that is physical. Both my knees are in need of replacing (no cartilage in the left and very little in the right) so it’s hard to walk — and exercise is almost an exercise in futility. But here’s where the failure to rebound comes in: do I spend the time, money, and agony of knee replacements if I’m at a high risk of dying of breast cancer in the not too distant future? Do I get the expensive dental work I need to replace a tooth I lost years ago which affects my smile? To lift a line from the movie “The Best Exotic Marigold Hotel” (highly recommended), do I even bother buying green bananas?

The “futility factor” had never been part of my thinking until the Moffitt experience. The doctor there was wrong, wrong, WRONG… in more ways than one. But she managed to instill in me a sense of doubt. And although I’m solely responsible for my thoughts — including what I choose to think — I find myself stumbling over and over again into “why bother… is it worth it?” The Mofitt doctor took (or, more accurately, I gave it away and can’t get it back) my sense of unmitigated optimism for whatever time I have left. Instead I live a balancing act between knowing I might be around a long time, and knowing I might not. Put in the simplest of terms, do I have a glass of dry white wine with brie and crackers? Or do I drink my freshly made veggie juice? (My answer so far: a little of both, but less of the wine and brie than I did before.)

My optimism, which has never been fully shaken, got shook. I’ve been working on regaining it. It’s harder than I’d have imagined. But its loss is also deeper than what I’d have imagined.

I’m still waiting to rebound. Don’t be too discouraged: I have a good life. But I’m missing the entirety of one of my strongest traits. Still, I’m waiting…so my optimism about this isn’t entirely gone, is it?

A Clarification

Over the last month or so, too many of my friends have wondered if I have cancer now. Sometimes my own writing trips me up: I didn’t intend to leave anyone wondering.

The tests I had at Moffitt were thorough: I don’t have breast cancer in either breast, and I don’t have cancer that’s spread. So I don’t have cancer. If you were worried, I’d like to apologize.

To be fair to the factual side of me, breast cancer takes a long time to grow. It can be moving along, un-noticed and invisible, for 10-20 years before you’ll find out you’ve got it. With that little factoid in the back of my mind, I know I might have cancer growing somewhere, but so could you and all of our friends and family combined. So why even think about it? If it comes up, you (and I) will deal with it by doing what seems right at the time.

The experience I had earlier this year at Moffitt was what happens when a patient is given the wrong diagnosis and is left thinking she’s got a year or two left to live. It’s not a comfortable place to be. But don’t skim over the fact that the doctor was wrong. I didn’t have an aggressive and deadly form of breast cancer. I didn’t even have cancer. The “cancerous tumor” the doctor felt in my breast was really a sack of fluid that had collected after surgery I had in September of 2011. That’s all it was.

So…. I don’t have cancer, and I won’t ever have it again, unless it happens to show up. And then I’ll deal with it.

Better?

Regaining Control and a Moffitt Redemption…(almost)

One of the most useful things I’ve learned about having breast cancer is that I deal with it best when I have control of my medical decisions. My approach involves a lot of research on my part, and it includes giving myself the right to decide who’s on my medical team.

My experience at Moffitt got off to a bad start  because I was diagnosed with Inflammatory Breast Cancer (“IBC”) which is a type of breast cancer I knew very little about. And then — before I had a chance to fill the info void — I was told IBC is so aggressive that the only way to fight it is 1) quickly, and 2) very aggressively. The standard treatment is chemotherapy, followed by a mastectomy, then radiation, and then more chemo. Those treatments happen to be ones I’ve refused in the past based on quality of life issues. I’m a patient who values quality over quantity. In the medical journals, you’ll see a lot of references to 5-year disease free survival, or 10 years, or 15, and so on. There’s no measurement for quality of life, other than use of the term “disease-free”. Please note: “disease-free” doesn’t mean “side-effect free”.

If you’ve read my prior posts, you already know the IBC diagnosis was wrong. And you know the doctor who made that diagnosis (Dr. K.) didn’t have the decency to use the words “good news” when she reviewed my test results, which didn’t support her diagnosis. Instead, she sent me off with warnings about the redness on my breast and what it would mean if the antibiotics she gave me didn’t change the size of the red area. That piece of news ruined the antibiotic treatment time (10 days) because my attention was so focused on the redness: had it changed? had it changed enough? Toss in an allergic reaction to the antibiotic itself and the entire experience with Dr. K. was a bust (no pun intended).

I was told I had Inflammatory Breast Cancer on 2/24/2012. I didn’t regain a sense of control until 3 weeks laster, when I emailed Dr. K to let her know I wouldn’t be working with her any longer. In other words, I fired her.

I know there are women who would never consider firing a doctor. In my world, I choose the doctors I want on my medical team (of which I happen to be the captain). The doctors work for me, not the other way around. When a doctor causes more angst than not, I don’t consider them a team player. And thus, Dr. K. is no longer on my roster.

I was, however, pleasantly surprised during my last visit to Moffitt, when I met with a chemo-oncologist, who I’ll call Dr. O. (The word “oncologist” applies to doctors who specialize in chemotherapy as well those who specialize in radiation; so I distinguish between the two.)

A little background before I fill you in on Dr. O:

I met with two oncologists after my first breast cancer surgery. The first became upset when I told him that the benefit from chemotherapy (which I understood would be about 6% for me) wasn’t enough to justify me going through it. His face got red and his voice got louder when he insisted I’d get a 10% benefit. I still didn’t like the odds. What I didn’t know then was that there was only a 15% chance of me getting breast cancer again anyway, so his 10% benefit was really 10% of 15%, which is 1.5%. So, for less than 2% actual benefit, the chemo-oncologist was nearly beating his fists on his desk. I told him I wanted a second opinion.

I wound up at Dana Farber where I met with “the big guy”. I hadn’t asked to meet with him: maybe he was the only one with free time. Who knows? But the staff at his clinic told me he was “the guy to talk with”. As it turned out… in my case… not so much. He was emphatic that I go through chemo because I’d “be dead in 5 years” if  I didn’t. I asked for copies of the studies that supported his recommendation and he was visibly offended, although he asked his assistant to get me two study summaries. When I reviewed those summaries, I noted that patients with characteristics similar to mine (age, cancer stage and type, etc.) had done better without chemo. I pointed that out to him and he told me he didn’t have time to discuss the matter any further with me. So I skipped chemo.

Given my experience, talking with chemo-oncologists about what they have to offer has been off my list-of-things-to-do for many years. That changed when I read the book The Emperor of All Maladies by Dr. Siddhartha Mukherjee — a chemo-oncologist. Dr. Mukherjee is clearly a doctor who cares about his subject and the well-being of his patients. He also has the decency to admit that the medical world doesn’t have a thorough grasp on cancer. There are cures for some types, which is wonderful. But the hunt is still on for other types of cancers, breast cancer among them. You can get all the treatment in the world and still have about a 30% chance of dying from it.

After my last breast cancer in September ’11, my surgeon encouraged me to meet with an oncologist. I hadn’t read Mukherjee’s book yet, so I told her I wouldn’t do it. Waste of time. But then I read his book and, soon thereafter, an oncologist practically fell in my lap as part of the Moffitt process.

I’d decided I’d use the opportunity to meet with Moffit’s chemo-oncologist to better understand the various theories of how breast cancer originates and travels, and to share my own theory, which I’ve formed as a result of what my body seems to be telling me. Dr. O is young enough to be my daughter, with an easy communication style, open to give and take. I was as willing to listen to her as she was to me (a genuine relief). I described my theory to Dr. O by telling her it feels like a cell is given the message to go to the breast and grow with reckless abandon. According to Dr. O, my theory has a name: “stem cell theory”. Using this line of reasoning, if I’d had a mastectomy after my first breast cancer (in the left breast), I wouldn’t have gotten the second breast cancer in the left breast. The second breast cancer was Invasive Lobular Carcinoma (“ILC”). If I’d had the breast removed 11 years earlier, there wouldn’t have been any lobe in which the ILC could form.

As it turned out, Dr. O wasn’t very concerned about the diagnosis of IBC (she admitted the diagnosis was probably 98.9% wrong). Instead, she was far more worried about the ILC I’d had surgically removed in September. ILC tends to occur bilaterally (meaning it’s likely to show up in my right breast), and it metastasizes in a sneaky way, making it hard to know about until it’s at Stage IV (worst case). Dr. O told me that, in her opinion, I have two options: a double mastectomy or Tamoxifen. She recommended tamoxifen rather than a newer hormonal drug (Arimidex) because the side effects of Arimidex would be very difficult for my body, and she felt I’d tolerate Tamoxifen just fine. I told her I’d research them both and would give it serious thought.

While I was at Moffitt for the appointment with Dr. O, the Clinic Manager also teamed me up with two other doctors to help me resolve some outstanding questions about the fluid in my left breast and the antibiotic treatment I’d been given. I left feeling Moffitt had redeemed itself.

My first branch of research was to find out what had been learned about Tamoxifen since I’d last read about it many years earlier. I should note that my research always involves reading as many summaries of clinical trials that would apply to me as I can find, and also reading websites where other patients (mostly women) post about their experiences with each treatment. Two things jumped out about Tamoxifen: 1) it appears to be less effective than Arimidex; and 2) it has some heavy-duty side effects of its own, including frequent hot flashes, trouble sleeping, blood clots, bone pain, and some others which are rare but beyond-the-pale. Knowing the side effects was the first bit of information I needed. Next I needed to know the statistics about Tamoxifen’s efficacy so I could weigh the risks against the benefits. Well, finding the efficacy of Tamoxifen, for a person with my history, is like looking for a needle in a haystack. I read the absolute benefit was as low as 2% to as high as 50%. Getting at a realistic number for me to use was going to take years. I decided to email Dr. O to ask for her best estimates. I made it as simple as I could:

If I don’t take Tamoxifen:

— Percentage likelihood of ILC in the right breast? Percentage likelihood of recurrent ILC in left breast?

If I do take Tamoxifen:

— Percentage likelihood of ILC in the right breast? Percentage likelihood of recurrent ILC in left breast?

And, does Tamoxifen prevent metastases (I couldn’t tell from what I was able to find).

That was on Tuesday. It’s now Friday. I haven’t heard from Dr. O. So Moffitt’s redemption is incomplete.

While waiting for Dr. O, I switched my research to mastectomies, which I’d also done before but wanted current data. This time I came across a site I hadn’t run into before, although you’d think I would have: CancerCompass.com. On this site is a long thread (100 posts) on post mastectomy pain syndrome. I won’t weigh this down with too many details, except to say that the likelihood of having excruciating chronic (life-long) pain after a mastectomy is about 24%, and you’re more likely to get this pain if you’ve had breast cancer surgery before you have a mastectomy. Lucky me.

Despite my change in attitude toward chemo-oncologists (or at least some of them), my research is showing me (yet again) that the quality of life costs of breast cancer treatments can be crippling. Some women are willing to live with those costs. I’m not one of them. For one thing, I don’t like pain. For another, and more importantly, I don’t like the idea of living in pain when it might not make any difference in my overall survival. I’m not here forever anyway. I long ago made up my mind to enjoy my life. Why change that policy now? Just to live longer? Not if I’m in pain.

As with each episode I’ve had with breast cancer, I’ve arrived at alternative approaches to living as a breast cancer survivor. There are a lot of us. Interesting (to me anyway) that the medical world doesn’t have a clue about what we’re doing and how it’s working. Depending on who you speak with, when you “go rogue” you’re either being stupid, stubborn, misguided, or courageous. For me, it’s simply a matter of being as honest with myself as I can be, and then making choices that make the most sense to me.

Given where the medical world is with breast cancer, it seems reasonable to walk away from “standard treatment” when there are no guarantees and, worse, there are side effects that could impact your life in ways you’d hate — and in ways you couldn’t know abut unless you research outside the confines of websites funded by pharmaceuticals or other medical special interest (look closely at who owns the site).

For me, for now, I’m back to diet and lifestyle changes as my best bet for a good life — no matter how long it lasts. My next research project is pain management, since it’s possible I’ll need it at some point. Until then, onward!

 

Update as of 9/8/2012: Dr. O never responded to my questions about Tamoxifen. So Moffitt’s redemption was short lived.

A Not-So-Hot Moffitt Cancer Center Experience

Moffitt Cancer Center is a NCI facility that uses multi-disciplinary experts to oversee each case. That means the results of appointments and tests I had last week were reviewed by a “Medical Team” (surgeons, radiologists, oncologists, and I’m not sure who else). Do you see the missing ingredient in this set-up? The patient isn’t invited to the meetings about her care. In any case, this is their way of providing their best. And, since the Women’s Oncology Center is it’s “own little world” everyone knows what’s happening with every patient. Well! That sounds perfect and it probably is when it works. In my case it hasn’t worked well at all.

Let me summarize, and if you want the details, just keep on reading:

1. I had an initial meeting with a breast cancer surgeon at Moffitt who, after a physical exam, told me it’s highly likely I have Inflammatory Breast Cancer — an aggressive and deadly form of breast cancer. In fact, she said my breast looked like a “text book case” of IBC.

2. I had to wait 5 days before any tests could be made to validate or repudiate the surgeon’s diagnosis.

3. I had to wait 2 hours for an ultrasound on that 5th day because the surgeon’s directions were either unclear or the radiologist didn’t see any point in an ultrasound (I got two different stories from two different members of the staff). And the surgeon was in the O/R, so we were all waiting for her to clarify or revise what she’d ordered. My husband, who’d been in the waiting room all this time, finally decided to find out what was going on. He found the surgeon’s nurse who casually mentioned “there’s no tumor in the breast”. My husband, not liking how casual this information was provided, called for the Clinic Manager, who arranged for the radiologist who’d read my scans to show and explain them to us. That’s when I first learned I probably don’t have IBC.

4. I had to wait 36 hours before the last two tests were done (they were done on a Friday).

5. I was scheduled to see the surgeon on the Tuesday following Friday’s tests. Evidently, the surgeon saw no point in picking up the phone to let me know the test results which, in my case, showed no cancer in my breast or elsewhere.

6. Rather than wait until Tuesday, I called the surgeon’s nurse on Monday morning to find out if the results of the tests were known. Yes they were: there were no signs of tumors or metastases, but the left breast had a large sac filled with fluid which needed to be drained. The draining would be done the next day after I met with the surgeon, so “bring a sturdy bra”.

7. The second appointment with the surgeon was not a “give-and-take” discussion and, instead, felt like an effort by the surgeon to keep the diagnosis of IBC alive. She mentioned the need for additional scans because there were suspicious areas in my lower back and lungs. There are more details on this, but to give you an idea of her focus, she drew a line around the redness on my breast and told us the redness would change in size if the antibiotics work; if the red area remains the same, that’s how IBC behaves. I honestly believe she’d feel redeemed if the redness doesn’t change: that way she could go to the Medical Team and say “I told you so.” I didn’t bring this thought with me into her office, but I left with it.

8. I had to check in twice to the same facility on the same day because the appointments were 3 hours apart. (I’d been checked into Moffitt one day the previous week, just once, when I had appointments that were 4 hours apart and in two different buildings.) No explanation.

9. My appointment to have the ultrasound/fluid drainage was cancelled and it took 10-15 minutes to reschedule me, with no explanation of what happened or why.

10. The breast cancer surgeon mentioned wanting me to see a medical oncologist but didn’t give me the name of the oncologist she’d refer me to, nor did she let me know she was going ahead with a referral.

11. I had to initiate checking out of the clinic and scheduling my next appointments.

12. The schedule I was given had a follow-up appointment with the surgeon and a doctor I’d never heard of.

13. During checkout, I had to push for appointments for an MRI and CT scan, per the surgeon’s comments about my lower back and lungs.

14. When the surgeon’s nurse finally got the order for an MRI, she told me the CT scan for my lungs wasn’t really needed and that the recommendation had simply been to keep an eye on it.

15. There was no way to schedule a follow-up visit with the radiologist who’d drained the fluid (and who’d told me I’d likely need to have drainage done several times more) because the surgeon would need to order that when it was needed. The “team approach” appears to apply in meetings but not in real time.

16. My husband and I left Moffitt yesterday (after the fluid was drained) and I told him I felt as if I’d been thrown against a cement wall, bounced back, thrown into the wall again, bounced back again, thrown into the wall again, and didn’t feel I had much bounce left in me.

For the full “unmasking” of care (in my case) at Moffitt Cancer Center, read on. You’ll note I don’t mention any staff member by name. That’s because the surgeon might be a wonderful ally and partner for other women (and I suspect she is), and the same is so for other staff. This is the story of what happened with me, and shouldn’t impact the experience others have had at Moffitt.

~~~~ The full story ~~~~

To be fair, no one is a good fit for everyone. That’s the kindest way I can frame the relationship between me and the breast cancer surgeon I’ve been seeing at Moffitt.

The test results don’t support the surgeon’s initial diagnosis of Inflammatory Breast Cancer, so — after she knew the test results — I expected her to enter the room with a “Great news!” approach. But that wasn’t to be. It went more like this: a friendly, professionally distant smile and handshake, which translated in my world as “you’re just another patient, so let’s get down to business”. Not even a hint of champagne or confetti.

She told me what I’d already managed to learn from others (no sign of IBC or metastases; I’d have the fluid drained and be put on antibiotics). I’d gotten this information by taking as many back doors as I could find. Waiting for test results is too uncomfortable to wait even longer just so you’ll hear it from the “right person”. Why didn’t the “right person” know that a patient who’s been told she probably has IBC is waiting for the phone to ring to confirm or deny the diagnosis?

After the surgeon officially shared the news that the imaging scans were negative for cancer, she went on to tell me the bone density scan showed some “uptake” in my lower back (the bone absorbed some dye I’d been given prior to the scan). “The Medical Team” wants to get a more magnified (MRI) image of this because there could be cancer there. (I’ve had osteoarthritis in my lower back for years, diagnosed in 2008 via an MRI, so I’m betting on that as the outcome.) She also said there are small spots on both my lungs which should be followed. So much for celebrating any good news.

The surgeon wanted to take a sample of a swollen lymph node to make sure there was no cancer in it, and she wanted a sample of the skin on my breast to make sure there was no cancer there either. And “the Team” wants me to see a medical oncologist. Most curiously, she added that I could still have IBC but, for now, it’ll be treated as an infection — with antibiotics. The main message I was getting is this: “we haven’t found proof of IBC yet, but I haven’t given up looking for it”. This could be a good or bad thing for a doctor to do: if she’s ernest and really wants to make sure I don’t have IBC, she should keep looking. But she’d be wiser to keep this to herself at a time when the patient has been given enough good news to renew her hope.

I’d already decided to let the surgeon know that — by telling me a week earlier I had a “text book case of IBC” — I’d been through some very difficult days. She’d already explained her reasoning for giving me the worst case scenario (to prepare me), and I wanted her to know her approach can have unnecessary and painful consequences. But I wasn’t able to tell her that, although I tried. She feels it’s the best approach. Mind made up. No room for feedback.

NOTE: from the research I’d done before this second meeting with the surgeon, I learned that IBC is often misdiagnosed, usually as an infection rather than the deadly form of cancer it is. It’s evidently known to be difficult to diagnose. Given that, how could she have been so sure I had IBC on a physical exam only?

I reminded her that I’m the kind of patient who does a lot of research, which I’d been doing on the web about IBC and other causes of redness and tenderness of the breast. She said (and I paraphrase): “you have to be careful about what you read on the web: it doesn’t tell you everything.” So I told her about just one of the (many) experiences I’ve had — in person — with doctors who don’t tell everything either. Oh yes, she understood that, said she. Even she uses the web to do research. At this point I knew I had no chance of getting anywhere with her.

She was obviously fulfilling the “things-to-do-with-Robin” list, formed by “the Medical Team”. Every step falls within the “standard of care” which can be a roadblock for clinicians because they can get caught in one way of approaching things and thereby miss seeing other approaches (reference: “The Emperor of All Maladies”; another reference “End of Illness“.) The surgeon practices the boundaries of “standard care” and anything beyond that is outside her scope. Unfortunately for both of us, I tend to go beyond the boundaries, almost always.

I’d already reasoned the following before I entered her office: If I have an infection, then the “puffy” lymph node (found on a previous ultrasound) is likely enlarged because of the infection and, if that’s the case, it’s premature to biopsy it for cancer. So when she brought that up, I told her I wanted to wait and why. She agreed with my reasoning. At last: some common ground.

Her nurse went off to let the radiation staff know I wouldn’t be having the lymph node biopsy, although it was understood I’d be having an ultrasound later that day to guide a radiologist in draining the fluid from the breast.

As for seeing a medical oncologist, I agreed to that, but suggested it would be more productive if I saw someone who’s open to alternative approaches. I don’t believe in chemotherapy or in hormonal treatments for my body. These beliefs are based on several things: the statistics on disease free survival over 5 years — and what can happen in the 6th year with a woman my age and my history; the side effects, and (probably most importantly) my body has given me clear messages that it’s not the right path for me. I added that I didn’t want to waste the oncologist’s time. She nodded.

Then, for reasons I still don’t comprehend, she told me my situation is a troublesome one because I’ve had 3 recurrences of breast cancer and that suggests an underlying problem we need to get at. I agreed with her about the underlying problem, and my situation being troublesome, but (said I) “I haven’t had any recurrences. I’ve had 3 primary breast cancers.” My husband, who joins me always for appointments like these, asked if we have different definitions of “recurrence”, which gave me a new direction to try: “If I misunderstand the difference between primary and recurrence, please let me know.” But that didn’t happen. Instead, she said: “You’ve had three cancers and that’s cause for concern”. Well, duh.

It was around this time when the doctor launched into a mini-lecture which I’d hear again later that day (almost word-for-word from another practitioner): “We’re not here to make money. We don’t make recommendations to increase our profits. We’re here to help you get better, and we’re not going to force you to do anything you don’t want to do. We form a partnership with each of our patients so you’re comfortable with your care.”

Well-pick-my-jaw-up-from-the-floor: my new partner first scared the shit out of me, then didn’t offer an apology (or even an “oops”) and, instead, made sure I understood I could still be very ill. Call me hasty, but that’s the kind of partner I want to divorce. No offense: no one is well suited for everyone.

I asked if she’d automatically forward her notes, the scans, and lab results to my surgeon in Massachusetts. She told me I hadn’t given directions to do so, so no, that hadn’t been arranged. I reminded her that I’d given her a 5-page summary of my medical history (including doctors, their addresses, and their phone numbers), and that next to my breast cancer surgeon’s name in Massachusetts, I’d written and highlighted a section that said “Please send copies of all your notes, scans, and pathlogy reports to this doctor.” It turns out that information didn’t make it into my patient file, or into their computer system, so I’d need to go to medical records to sign a release.

The surgeon looked in her file several times, assumably for test results or recommendations from “the Team”, and she quickly made notes now and then which is probably why I didn’t see her write out a prescription for antibiotics and hand it to my husband without telling me about it. I had to ask when I’d get the prescription and when I’d start taking them. “Today” she said. “I’ve given the prescription to your husband.”

NOTE: when I learned my husband had the prescription, I was confused. Why had the nurse told me the day before (on the phone) that the fluid would first be looked at in a lab to find the antibiotic that would be most effective. Given this, I figured the antibiotic prescription would be called in to our nearby pharmacy, once the right antibiotic was determined. I didn’t even try to bring up the conflicting stories. It was obviously not an environment for expressing my thoughts or concerns.

Although in retrospect I should have pressed the same argument against taking a biopsy of the skin on my breast as I’d used for the lymph node biopsy, I was wanting to be as cooperative as I could be, so I agreed to let the doctor take a sample of skin from my breast so it could be biopsied. Since her nurse hadn’t yet returned from telling radiology the lymph node biopsy was off, the surgeon didn’t have the right container to put the removed skin sample in. She looked around and placed the piece of skin into an open plastic container which had been sterile a minute or two earlier when she removed an instrument from it. I don’t know enough about sterilization to know if it’s wise to place a skin sample in a container that had been used for something else, but she clearly needed to put it somewhere.

She put in a stitch at the biopsy site and then told me not to go into a pool, hot tub, or soak in a bath that covers my breasts for the entire time I’m on antibiotics (2 weeks). Another jaw-on-the-floor moment: before she’d taken the tissue from my breast, she knew my husband and I had plans for a cruise next week. Does a true partner withhold information that will prevent full enjoyment of a cruise until after she’s taken irreversible action…an action which could easily have been delayed until after the cruise? I don’t think so. Divorce is getting closer.

The nurse finally made her way back to the office, with containers for the skin sample and news that radiology would try to fit me in closer to 1:00 than the previously scheduled 2:00. They were able to do this because we wouldn’t be doing both the lymph node biopsy and the ultrasound drainage. The surgeon and nurse suggested hubby and I go off for lunch and come back a bit before 1:00. Which is what we did. By the way, if you’re looking for the cafeteria at Moffitt Cancer Center by following the signs, you could wind up almost anywhere. Ask someone wearing a Moffitt badge to direct you (the cafeteria is in the basement).

After lunch we had some time to kill, so we decided to go to the Medical Records department and sign the release the surgeon had told me I’d need to sign. If you’re looking for the Medical Records department at Moffitt Cancer Center by following the signs, you’ll wind up at a desk where a young woman is signing people up for blood draws. We asked where we’d find Medical Records and she said, without blinking an eye: “Oh, we don’t have a Medical Records department any more. You have to go to the information desk and fill out a release, then drop it in the box.” And that’s what we did. But rather than have the files sent to my surgeon up north, I asked that they be sent to my home. I no longer trust Moffitt’s communication system and want to know 1) that the records arrive and 2) that they’re complete.

Stepping back into the “Women’s Oncology Center” at Moffitt at quarter to 1:00, the receptionist told me my ultrasound had been cancelled. I don’t have a word to express my feeling at that time so I’ll use “stunned” and hope you get the gist. It took 10-15 minutes to get me back on the schedule, with no explanation of what happened or why.

I had to sign in again (I don’t know why I had to sign in twice, but I did). When I met with the input staff member, I asked if any follow-up or further appointments had been scheduled for me. She told me I had a follow-up appointment with the breast cancer surgeon but that was it. I said: “Well, the surgeon mentioned me getting another MRI, a scan of my lungs, and a meeting with a medical oncologist. Doesn’t it make sense to you that these could be done on the same day?” The girl at check-in agreed, and went to find the surgeon’s nurse. When she came back, she told me to tell the radiology staff — where I’d be getting the ultrasound/fluid drainage as my last appointment for the day — that I’d need to go through checkout to make the necessary appointments. I asked “Do you mean it’s my job to push for appointments that the doctor recommends?” She said “yes”, adding “hopefully by the time you check out, the orders will be there.” (Even if you don’t skip ahead, your gut instinct about whether or not the orders were there is probably right.)

At 1:40, I was called in for the ultrasound/fluid draining (great timing considering the prior cancellation). The assistant who got me set-up mentioned that the radiologist would just be taking a sample of the fluid which would be sent off to the lab. I understood that part, but I thought he’d be taking all the fluid before I left. As mentioned above, in my world, the surgeon would phone our pharmacy once the lab had tested the fluid for the right antibiotic, but my world and Moffitt’s are clearly a misfit. The assistant told me the radiologist would arrive any moment and he’d fill me in on what would be happening.

The radiologist turned out to be the friendliest, most open practitioner I’ve met so far at Moffitt. He was engaging, reassuring, and transparent. His first comment: “There’s not a problem with that lymph node… I wouldn’t touch it.” (Hurrah!) Next he told me I have a very common post surgical complication, although the sac of fluid is larger than most and it will probably fill up again and, therefore, several aspirations will likely be needed before it stops filling up. “We can always fit you in for that” he said.

And then he gave me the second mini-lecture on the fact that Moffitt doesn’t make any money by doing these procedures; they’re here to treat the patient with as much care as is needed and are not trying to make a profit by doing things that don’t need to be done. I liked him anyway, so I didn’t hold it against him, but it struck me as odd that two doctors had now told me the same thing. Is this patter they’re trained to say? If so, why? Is it connected to the rumor going around within the facility (heard by me from a nurse) that Moffitt, like other large medical centers, is likely to announce a layoff in the not too distant future? And aren’t these layoffs connected to profits?

When the radiologist drained the fluid, he told me it didn’t look infected much (if any), and that the redness on my breast was my body’s effort to try to resolve the problematic sac of fluid. When the drainage was done, the breast was considerably smaller, and the tenderness was (and remains) minimal. I was told I’d be given a special bra to hold the breast tightly and then he shook my hand, gave me a genuine smile, and left.

His assistant (who’s upbeat and friendly) brought me what looks and feels like a corset. I asked her why the nurse had told me to bring my own “sturdy bra” when they had these other things? She didn’t have an answer. I said it seems to me no one knows what the others are doing in this place. She shrugged. Finally, proof that my memory is still intact, I told her I needed to through the check out process. She ushered me to the check out waiting area.

Given that the surgeon had now had plenty of time to work up orders for additional tests she’d mentioned that morning, I figured the check out lady would have all the information she needed by the time I reached her desk. She didn’t. All she had was a follow-up appointment with the surgeon and another appointment a half hour later with a doctor I’d never heard of who was listed on the schedule sheet by name, followed by “MD”. All I could figure was that the surgeon I’d been seeing might be out that day so this was a back-up appointment with another surgeon, just in case…??

As luck would have it, the surgeon’s nurse was nearby, so we asked her about the unknown doctor and the missing orders for tests. The nurse told us the heretofore unknown doctor was a medical oncologist, and that no further tests had been ordered. Why? “Welllllll…..” she began…and I lost it: “I’ve been caught in some very bad scheduling here, including having the ultrasound cancelled today…” I began. The nurse interrupted: “Radiology did that, not me.” (This is a “team” approach?) I ranted a bit more about the logistics of my situation, and my health issues, and my feeling that I don’t seem to fit in their system and it’s disconcerting.

The nurse agreed to find the surgeon and ask her about the other tests she’d mentioned that morning. So we waited, and the check out girl got visibly annoyed: arms folded across her chest, frown on her face, and (curtly) “Is there something you need me to explain?” We sat is silence until the nurse returned.

The nurse reappeared with the news that the other tests hadn’t been scheduled because that would be the job of the medical oncologist. I reminded the nurse that we have to travel an hour each way to get to Moffitt, so if we could get the tests done in one day (which seemed doable with the 2-week advance notice we had), it would make it a whole lot easier on us. The nurse said she’d have to go back to ask the surgeon about that but — lucky thing! — the oncologist was in the room right next to the surgeon’s office! (Is that great, or what?!)

We waited again.

When the nurse came back (with a big smile) she had an order for an MRI of my lower back on the day we’d next be at Moffitt. She added that the recommendation to re-scan my lungs really wasn’t necessary at this time. It was simply a suggestion from “the Team” that it be followed. She added it’s not uncommon to see the kinds of small spots that were on my scan. Why hadn’t the surgeon told me this earlier in the morning? Why has this been such an unpleasant experience at an institution that’s considered to be so good?

In my opinion, Moffitt has adopted a “breast cancer boutique” approach to treating breast cancer. Note there was no suggestion of a second opinion (I already had it covered, but it wasn’t mentioned). Note I wasn’t consulted about the oncologist to whom I was being referred — and that I wasn’t even told I was being scheduled to see him or her). Note that I was told two plans for what kind of antibiotic I’d be getting. It’s as if the nurse and surgeon don’t even talk to one another. Note that the surgeon didn’t tell me the spots on my lungs are common but her nurse later did. Note the differing opinions given to me by the surgeon, two radiologists, and the surgeon’s nurse — which prompts an obvious question: is the Medical Team a competitive, rather than a synergistic, group of specialists?

Now… what do I do with all this? Well, first of all, I’ve washed off the ink line the surgeon drew on my breast. I won’t let her scare me any longer. Secondly, I’ll get over it. If I ever have to go to Moffitt again, I’ll ask for a different surgeon because this first surgeon and I haven’t bonded and, at this point in my medical journey, I need a strong partnership with my surgeon, which is what I have up north. My surgeon up north doesn’t agree with every decision I’ve made, but she’s rooting for me anyway. That’s a team player.

If, in the unlikely event I DO have IBC, I’ll likely get palliative treatment rather than anything else (probably hyperthermia which is offered at Tufts in Boston).

My focus remains on the quality of my life, not the quantity. I have more to write about that but, for now, the frustrations with Moffitt and similar centers, leads me to speak out about the state of affairs from the point of view of a patient who doesn’t fit neatly into a “boutique” system — and therefore does a lot of homework to fill the gaps. What’s happened with my body over the last 11 years has been unpredictable and not comparable to the “average patient”. Had the Moffitt surgeon taken the time to thoroughly read the medical history I spent hours putting together, there would have been a more solid understanding, right from the start, of the kind of patient I am. Instead, the surgeon tried to get me to fit, like a square peg in a round hole.

It’s not gonna happen.