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 his or her care. In any case, this is their way of providing their best. And, since the Women’s Oncology Center is its “own little world” (their words, not mine) 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 (“IBC”) — 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 five days before any tests could be made to validate or repudiate the surgeon’s diagnosis.
3. I had to wait two hours for an ultrasound on the fifth 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). As it happened, 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 then arranged for the radiologist to show and explain the scans to us. That’s when I first learned I might not have IBC.
4. I had to wait 36 hours before the last two tests 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, as it turned out, 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. Instead, 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. In fact, it 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 she was going to prescribe actually worked, adding “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 so she can 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 three hours apart. (I’d been checked into Moffitt just once on for appointment the previous week, and they were four 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 an Oncologist but didn’t give me the name of who she’d refer me to, nor did she let me know she was going ahead with the 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 hope 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 Chemotherapist. Most curiously, she added that I could still have IBC but, for now, “it’ll be treated as an infection, with antibiotics”. The message I was getting is this: “I haven’t found proof of IBC yet, but I haven’t given up”. This could be a good or bad thing for a doctor to do: if she 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 that 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 her, 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 “textbook IBC” after 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): “Uou 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 you everything either. Oh yes she understood that, said she, adding that even she uses the web to do research. I realized 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 (two references off the top: The Emperor of All Maladies; and End of Illness.) The surgeon practices within the boundaries of the “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 Chemotherapist, 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 five years — and what can happen in the sixth year for a woman my age and with my history; the side effects, and (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 three 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 three 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 five-page summary of my medical history (including doctors, their addresses, and phone numbers), and that next to my Massachusetts surgeon’s name I’d written and highlighted a section that said “Please send copies of all your notes, scans, and pathology 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 (over 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 had been determined. I didn’t even try to bring up the conflicting stories. It was obviously not an environment for expressing my thoughts or concerns.
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, but 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 (two 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 Mike and I go to 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 anymore. 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. By this time I’d decided that rather than have the files sent to my surgeon in Massachusetts, I’d have them sent to my home. I no longer trust Moffitt’s communication system and want to know that the records arrive and are 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 an Oncologist. Doesn’t it make sense to do these 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 here.” (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 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 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 go through the check out process, and 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 an 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, 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 in 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 Oncologist. I reminded the nurse that we have to travel an hour each way to get to and from Moffitt, so if we could get the tests done in one day (which seemed doable with the two-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 because I’d sent a photo of the redness to my surgeon in Massachusetts before I ever stepped foot on Moffit’s campus) but it wasn’t mentioned). Note I wasn’t consulted about the Oncologist to whom I was being referred. 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 nursem which prompts an obvious question: is the Medical Team a competitive rather than 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 so I could ss if the redness was shrinking. 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 one and I haven’t bonded and, at this point in my medical journey, I need a partnership with the surgeon. My surgeon in Massachusetts 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, in case you might need to know this, 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 of the kind of patient I am, right from the start. Instead, the surgeon tried to get me to fit, like a square peg in a round hole.
It’s not gonna happen.
Oh, Robin, what an ordeal you have gone through. You are shining light on the coarseness of the relationships between “provider” and patient. Everyone who goes through the runaround you experienced thinks they’re the only one. The details of your story would have worn a lesser woman down but you lave lived to write about it.
My concern is that they have been telling you you’ve had three different cancers. No one brought up that your initial biopsy may have spread the cells throughout the breast. In that case you would have only had one cancer that they mangled.
Most of the scans are tea-leaf reading. Some aren’t but the radiologist pretty much has to say something needs to be followed. He has to cover his hiney. So (1) you may be going through this nightmare just be cause of incompetence in your initial diagnostic procedure and the subsequent explanation of your recent “recurrences.” Or (2) the hiney coverers are making it worse by putting fear in your mind.
You and your hub seem to have strong minds and the ability to assess what’s wrong –for example the doc’s lack of warmth showed total lack of concern. Lack of concern translates into incompetence, sloppiness and a failing grade for the doc. You have been hexed.
You will rise above this, Robin. You both will. Don’t give up. Remember, there are a lot of people who go home hopeless just because they got bad care. You have gotten beyond that and written this awesome blog. You are an inspiration.
Thank you for your on-going support and valued input.
To clarify: my first b/c was in 2000. I didn’t have a biopsy and went direct to a lumpectomy (the look of the growth was enough to make me want it gone). Margins were good. It was triple negative, and I had radiation (no chemo). There was no further problem with this breast until last July when some oddity was noted on an annual mammogram. It turned out to be ILC (ER+/PR+). Again, I had it removed, this time with wider margins than is standard. The surgeon removed a lot of tissue.
I’m less worried about botched biopsies (although I know they happen) than I am about women who don’t even know they have the right to be part of their care and that it’s important to know the potential outcomes and side effects.
As for me, I’m beginning to suspect that wheat might be causing a big part of the underlying problem of systemic inflammation. I’ve dropped it from my diet entirely. I’ve yet to revisit your study on Iodine but will have another look soon.
I read every word of this post. It’s terrible what you have had to go through with this “team” that is the opposite of what a team should be.
You are an amazing person and you set a really good example in so many ways. Taking the time to put this down in an effort to help others, is just the tip of it. Your ability to deal with these things in life in such a sane way is really special. Your ability to “get over it” and bring your life back to the peaceful and centered place where you are, is inspiring. I know it’s not all easy, but you do it and you still have time to give to others. That’s a life worth living. I have so much respect and love for you.
Robin, hi. I have read this over three times now. I have to admit that I’m a little confused. No, thats wrong. I’m a lot confused. There is so much I am trying to understand. One thing I know for sure is you are without a doubt the strongest woman I’ve ever had the pleasure to meet. Thank you for allowing me to be a part of your most incredible journey. I know its not much, but I pray for you every night and look for recipes that I thik you may be interested in. I will hold a good thought for you each day when I wake up in hopes that today is the turnaround point. Continue to be strong my friend. Know that I am here for you and I’m in your corner. I wish I could be there in person to offer my support. You’re fortunate that you have a husband/partner to go through this with you. Hope to hear from you again when you can get here.
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Thank you. I took a break for a bit (the Moffitt experience took a long time to get over). I’ve had (yet another) breast cancer, and will write about that once I figure out how to keep the format I started with. I appreciate the search phrase. 🙂
My experience at Moffitt has been even worse. I feel validated by your courageous letter.
My experience with Moffitt nearly took away my spirit to keep going. To have an even worse experience than mine is heartbreaking to read. I hope you’re doing okay. I stopped writing on my blog after my husband was diagnosed with terminal cancer. I’m finally coming back around to what interests me. I’ve had yet another breast cancer (new problems!) which I want to write about, but first I have to figure out how to copy the format I started with. Let me know how you’re doing if you get a chance. And thanks for the comment. — Robin
Robin, I messaged you on Facebook
Thank you: I read it and am surprised to find there are a rare few who get entirely different primary breast cancers over time. Why isn’t the medical field interested in that? It’s stunning. I urge you to listen to your body (your gut): it’s the best advice you’ll get. Please keep me posted! — Robin