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?
Thank you, Robin, for that provocative mulling blog. I’ve mulled over an issue you hit on myself, that the so-called care can be far worse than the disease. You have been so hexed by the surgeon at Moffitt that it has shaken your ability to even consider a future with a new tooth or knee replacement.
The surgeon was wrong and she probably won’t admit it due legal issues –exposure to “intentional infliction of emotional distress” actions or some related legal vulnerability. If she had apologized and admitted to the blooper it might have set you free. But she didn’t and that is a betrayal of trust. But it may just be legal cover for her. Meanwhile, you are haunted by the PTSD of what they put you thru.
How do you move forward? That’s the question we all ask ourselves when we are blindsided. Where to begin? This blog was a great step forward.You have mulled. You came, you mulled, you conquered.
Luckily you have your “home” surgeon who believes in you and your choices. You have people around you rooting for you. You have the anti Moffitt team in your corner. We are pro Robin, pro Robin going forward and putting Moffitt in the rear view mirror. They made a mistake, a serious train wreck of a mistake, but it has nothing to do with your future. You were just a passenger in the Moffitt train. Don’t let that train own you or hold onto you. They’ve done enough damage. Let your friends help you walk away from the crash. You survived and you can create a new beginning. Each day is a step away from Moffitt and into a future you deserve. Grab it. You are among fellow travelers. Let’s walk forward together. I need my teeth fixed too. Let that be a start, okay?
Hi, Robin! I wholly agree with Lynne, especially the last paragraph. There is a program called “Cancer Transitions” that is a cooperative effort of The Wellness Foundation and Livestrong.com that helps cancer survivors learn how to regain and organize their lives after treatments. When the program was offered to me through our local cancer center, I initially turned it down but after a few days, something in my gut told me to register for the program so. I did and don’t regret a minute of it. You may be out of treatment too long to be a participant but you are unique in that you have taken charge of your post treatment life, especially the dietary requirements. I’m thinking you could be a valuable advisor or consultant in that program.
Thanks Mike. I was a member of a support group after my first diagnosis for about 3 months and stopped going because it wasn’t getting at the things I wanted to tend to. I’m familiar with Livestrong and will have a look, but if you don’t see me posting, I hope you’ll understand. I also hope you continue to do well!!