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.

On Waiting…

If you spend any time reading breast cancer blogs, websites, and comments, you’ll run across the fact that none of us is comfortable waiting to hear the results of our tests. This comes up a lot because we have to wait a lot.

Let’s take my last week and a half or so:

1. I had an appointment with a breast cancer surgeon at Moffitt Cancer Center in Tampa Florida. It was on a Friday and the surgeon told me I very likely have Inflammatory Breast Cancer, also known as “IBC” — a highly aggressive and deadly form of breast cancer with a 5-year survival prognosis of between 25%-50%, and that’s WITH treatment. The “standard” treatment would be chemotherapy to reduce the size of the tumor, then a mastectomy, then removal of the lymph nodes under the arm next to the affected breast, then more chemotherapy, then radiation. So if you’re me, you find yourself thinking “why bother with treatment if my time is short and I want to live as normally, and as free of pain as I can, for as long as I can?”

2. I had to wait through the weekend and then through the first two days of the following week until Wednesday, when I was scheduled for an MRI, a mammogram, and an ultrasound. I’ll skip over the 2 hours I spent waiting for the ultrasound with no explanation about why I was waiting, but note the length of time here: 5 days before any testing began. That’s 5 days to wonder how sick I’d get and for how long. Would I die before the end of the year, or sometime during the next? How long does a woman who refuses treatment for IBC have to live? What options are there for pain management? Are there alternative treatments that work? How would my loved ones (especially my husband and son) feel about it all? Should I tell anyone, or would that forever change my relationship with them: we each change when we learn someone is terminally ill — it’s probably impossible to ignore that elephant in the room. What could I do to make it easier on my friends and family? Is this really happening to me? Until this 5-days of time, I thought I knew what it meant to be alone. It’s much more intense and all-encompassing than I’d known. It’s the kind of thing you can’t change by talking to others or trying to distract yourself. Your focus becomes identified by what you’re going through: you and death have come close enough to hug one another.

3. The MRI, mammogram and ultrasound were done on Wednesday (at the end of which I learned it’s unlikely I have Inflammatory Breast Cancer…more on that in a bit), and then I had to wait until Friday before I returned to the hospital for bone density and CT scans, which (‘natch) took all day. Lots of waiting between injections of dyes, for scanners to be free, ’til the next appointment time, and so on. It doesn’t matter that you have 3 hours to kill while in a town you’re not familiar with and you’ve got to have something healthy to eat for breakfast. (If you’re at Moffitt, you’re in a part of town where you’ll find a Denny’s and a Perkins. Good luck with the healthy eating thing.)

In brief, from my first meeting with the breast cancer surgeon it took a week to get 5 tests done which, in an Emergency Room (E/R) environment, could have taken a day and, let me be honest, when you hear you probably have IBC, it’s an emergency.

It’s now the weekend after the bone and CT scans, and I’m waiting for the results. If I don’t have Inflammatory Breast Cancer, what do I have? The MRI shows a sac full of fluid that looks like a large raindrop. I’ve studied cancer enough to know that a cancerous growth doesn’t have the smooth outline of a raindrop: a cancerous growth is jagged. That’s probably why the radiologist told me he couldn’t rule it out as IBC, but he doesn’t think that’s what it is.

If what I have is another cancer, has it metastasized? Great question! Unfortunately, we’ll need to wait until next Tuesday to find out. That’s when I’m scheduled to see the surgeon who will, no doubt, have a plan for what to do about the sac of fluid. Will it be drained, as the surgeon’s nurse suggested? If so, when? Will there be a biopsy? If so, when? If it’s an infection, will I be put on antibiotics and if so, when? And why let me go so long without them?

I’d heard Moffitt is a great facility. Well, we haven’t had the greatest start. The staff might be wonderful and highly skilled, but as a patient, I’m becoming impatient.

For now, my only bit of advice — should you find yourself in this unwelcoming part of life, is this — you can kill some (not all) “waiting time” by going into denial, which is what I’ve been doing ever since I learned I probably don’t have IBC. Hubby’s my partner in escape. We’ve found ways to distract ourselves and I’ve lightened up on the extreme healthy eating plan for now. It’s easier that way. Sometimes a pizza (with wine) is the exact right thing.

A Surprising Turn…

Mar. 1, 2012 4:23 am
If you’ve been following the current episode of “Robin’s Breast Cancer Journey”, here’s what I learned after yesterday’s MRI, mammogram, and ultrasound.
There is no tumor in either breast.
The “large tumor” the surgeon felt during the physical exam turns out to be a large sac of fluid, assumedly left over from last September’s surgery. I’m told this is not uncommon, and that the plan is to drain it.
The radiologist — who was good enough to let me see the images and describe what he saw — doesn’t believe I have Inflammatory Breast Cancer but, since he’s not a breast cancer specialist, he added that he can’t entirely rule it out. Fair enough: I wouldn’t want to be a radiologist who contradicts the surgeon either.
Tomorrow I’ll get two more tests (bone density and PT scan), which will be looking for metastases. Assuming those are clear, I’m fully back among the living. When I have the final diagnosis, I’ll write more about what I’ve learned about myself during the last five days… some of it surprising even to me.
In the meanwhile, I broke my “nutritionally dense only foods” and celebrated last night with pizza and wine. A girl’s gotta do what she’s gotta do.

A Bump in the Road

Feb. 25, 2012 5:51 am
It’s not fully fair to call my latest health development a “bump”, but more on that in a bit.

The lovely (and very sweet) doctor I saw at Moffitt Cancer Center yesterday suspects I have an aggressive and advanced breast cancer — again in the left breast. I’m scheduled for next Wednesday to go through pretty much everything having to do with imaging: mammogram, ultrasound, and MRI, followed by scans of my bones and organs to look for metastases. By the end of the week, I should have a clear picture of how much trouble my body is in…if any.
It could be a common healing problem with breasts that have been through radiation. That’s the optimistic hope. The surgeon (who is Indian, and whose name is hard to spell and pronounce, so I’ll call her “Dr. K.”)… Dr. K gave me the worst case scenario: in part because I believe that’s what she thinks is going on, but also because she’d rather prepare me for the worst and if it’s better than that, hurrah! I don’t necessarily disagree with her approach unless she turns out to be wrong. I now have 5 days to get through “knowing” the likelihood of me living to a ripe old age is slim to none.
The facility I’m connected with is solely dedicated to women with breast cancer, so — all things considered — I couldn’t have landed in a better place. True, it’s an hour from where we’re “snow-birding” and 1500 miles from home but, for now anyway, it makes sense to stay the course. When we know more about what I’m dealing with, we’ll make whatever decisions seem best.
I can’t say I’m happy about the news, of course. It’s discouraging, scary, upsetting, and sad. Hubby (Mike) and I have had some difficult moments since the exam yesterday, using more Kleenex than I even knew we had in the car. (My dear Mike sees to many things without me realizing what he’s doing… and why. How lucky, and loved, I am).
And now for my thoughts on whether or not this is a “bump”. After a great deal of thought, soul-searching, and Sundays at church, I came to the conclusion many years ago that I’m not a good fit for organized religion. Instead, I’m best described as “spiritual”. Without going into a lot of detail, I believe the emotions I go through in response to the decline of my health are defined only in relation to life on earth. From a broader (spiritual) view, the sadness I feel is a response to the illusion of loss. The true “me” is part of a much bigger picture with no beginning and no end (and it fits well with the notion that we’re all God’s children, made in His image to do unto others as we would have done to us). When I focus with this view of things, I’m at peace with the events of my life and am able to love and savor each moment…and that changes “bumps” into new opportunities, phases, and greater love. I hope this makes sense.
I’ll let you know how things go.

A quick update

Feb. 18, 2012 12:46 pm
The surgery I had last September was done on my left breast which is the same breast I had surgery and radiation on in late 2000-early 2001. Statistically, a lumpectomy followed by radiation is the same as getting a mastectomy. So (needless to say) I was disappointed when I learned I had another breast cancer in the left breast.

(As a side line of inquiry, which is still unsettled in my mind, my initial thoughts were: would the second breast cancer have formed on the scar tissue left by an actual mastectomy — as has been the case for many other women? Would an initial mastectomy have limited my options for treating the second occurrence? Would the second breast cancer not have formed at all if I’d opted for a mastectomy in the first place rather than the statistical equivalent? If breast cancer begins in the breast, why (and how) does it occur after the breast has been removed? Surprisingly, I haven’t found any definitive answers. There are compelling theories, but nothing concrete.)

All that aside, when there’s surgery on a breast that’s had radiation, the healing is different. I knew that going in. What I didn’t know was that the breast tissue itself would also be altered. In my case, it’s become more dense. In fact, so much so, that it feels heavier than it should. And, possibly because of an over-zealous work-out during last Thursday’s water aerobics class, I noticed bruises had formed above the scar of my first breast cancer. That lead to a quick email to my surgeon who replied that it’s cause for some concern.
As it happens, hubby and I are snowbirds, currently in Florida and my surgeon is in Massachusetts. Thus, I quickly found a breast cancer surgeon at the Moffitt Cancer Center in Tampa, Florida and arranged for the reports and films to be sent to her in time for my appointment next Friday.
The bruises are disappearing now, which is comforting. My body is telling me everything is fine. Intellectually, I’m smart enough to know I need to have it checked out before I can give my body full say-so. For now, I’m at peace with this (God knows why). Somehow I’ve been blessed with a genuine conviction that, no matter what happens, I’m exactly where I ought to be, experiencing what I should be. With that thought alone, I can make it through anything.

Evolutions of Thought…and a nutrient dense recipe

Jan. 20, 2012 6:02 am
I’ve probably posted this before, but I was positive I wouldn’t get another breast cancer after my second one. So number three came as a surprise. At first I just shook my head and thought: “Damn…I need to go through this again.” After a whole lot of research, consultations, and soul searching, I wound up with a treatment plan I’m comfortable with. It’s not the mainstream approach but I’m not a mainstream patient. If it’s rare, it’ll happen to me. Or, put another way, health-wise I’m at the extremes of the bell curve, and have been pretty much all my life. A medication that would ease your pain would increase mine. It’s just the way it is.
So, if you haven’t been following my blog, I opted to pass on “standard treatment” after I had the lump removed and, instead, I’ve turned to changes in my lifestyle (diet and exercise). I’ve also recruited the assistance of a Naturopathic Doctor whose first step was to take samples of my blood to determine what parts of my immune system are in need of help. It turns out my “natural killer” while blood cells aren’t as active as they should be. So now I’m taking supplements to boost their activity.
But the real work for me has been in how I think about all this. As a seasoned “survivor”, I know the facts pretty well: one in three women die of breast cancer; recurrence is highest in the first two years after diagnosis; if you’ve had breast cancer before you’re considered a high risk for recurrence (or another one); breast cancer can spread (metastasize) to the liver, pancreas, bones, lungs, brain; after you’re diagnosed with a primary breast cancer (vs. a recurrence), there’s an 85% chance you won’t get it again; body fat aids in the production of estrogen, so if your breast cancer is estrogen receptive positive, it makes sense to get thin; red meat has been linked with breast cancer; over 75% of breast cancers have no risk factors associated with them (they just appear out of the blue) and, in my case, I don’t carry either of the known breast cancer genes.
These thoughts are in the back of my mind, probably always, although I’m not always consciously aware of them. But one or more pop up more frequently now. And, although my lower back and knees hurt from arthritis, I get myself to exercise each day (swimming, yoga, walking). When I feel a new ache, I take note (so far they’ve each gone away on their own).
None of what I’m doing is a big deal, or different from what so many others do for their own reasons. The only reason it’s remarkable is that I was raised on Wonder Bread and other processed foods of the 1960s and beyond. Learning to think differently about what I eat (and drink) has been in my world for a dozen years or so, but now it’s become a demanding necessity. How can I object? I’m already 20 pounds lighter (20 more to go) and feel healthier than I have in years.
More importantly, though, is my approach to each new day. I enjoy leisure time without feeling guilty. I laugh more. I seek and create happiness…for myself and others. I’m more lovingly honest and kind with people I care about. I don’t long for something I don’t have. I don’t wish I was younger, or that things were different. I’ve come to accept — on a deeper level than I had — that life really is what I make of it, and (not to scare you) death is ahead of me at some point. Nature has seen to that and has given me the blessing of bringing it into clearer focus. I could be gone in a year or two. Or maybe in 30 years. That’s not what matters. What matters is what I do with my life between now and then. I learned this after my first breast cancer. It’s an even stronger guiding light today.
It probably helps that I believe death is as natural as a fading rosebush… with an inherent spirit that will produce new roses before too very long. Which is to say I don’t believe death will be the end. Instead, I believe it’s a birth into the next phase of existence. It’s in that thought where I’ve found my faith.
Practicing random acts of kindness is a great way to spend a day. I’ve been dabbling in this for a while, but it’s becoming the norm now. I don’t get angry anymore (or not much). I understand everyone has their own battles and (for the most part) they’re doing their best, even if that means they’re mean or grouchy or judgmental. If it relieves their pain, God bless.
So this is where I’ve landed — back where I was after my first diagnosis, but with a deeper appreciation for the blessings of breast cancer than I had before. I accept this. I can live with it. In fact, I’m better for it.
And now for those of you interested in nutrient dense recipes, here’s one that’s easy to make and has become a staple:
Lentils, Rice, and Mushroom Casserole
Serves 10… lasts for up to 5 days
1 medium yellow onion, diced
1 clove garlic, minded
1 c. brown rice
1 c. dried green lentils (uncooked)
1/4 c. low sodium tamari
14.5 oz. can of low sodium diced tomatoes
4 c. vegetable broth
1-1/2 c. mushrooms, (cremini, shitake, button… one type or mix them together)
1 tbsp. dried oregano
1 tbsp. dried rosemary
1 tbsp. dried basil
1 tbsp. dried thyme
1 tbsp. dried red pepper flakes
1 c. nutritional yeast flakes*
2 c. kale, torn into bite-size pieces**
Directions

1.
Pre-heat oven to 350°
2.
In a large dutch oven, mix together all ingredients except for the nutritional yeast flakes and kale (they come toward the end of the baking process).
3.
Cover and bake for 90 minutes, stirring every 30 minutes to keep the casserole from sticking.
4.
When there are 10 minutes left to bake, add the nutritional yeast flakes and kale and stir well. Cover and finish baking.
*Nutritional yeast flakes are available in the organic section of some grocery stores (under the “Bob’s” label), and is available in bulk at health food stores. It adds a cheesy flavor and texture to whatever you add it too.
** Kale is one of the most nutritional dense foods on the planet. It blends in so well that you might not know it’s in this dish.
I’ve used this dish as a hot meal, a cold salad, and as taco filling! It’s versatile and tasty.
Cheers!

The Way Things Go

Oct. 17, 2011 6:48 am
Lately I’ve been giving myself time to mull things over: what do I really think about such-and-such?…. what makes me feel most at ease with myself when approaching this or that?… do I have what I need to call the shots in my world? And am I being fair and loving to those around me?

After a third diagnosis of breast cancer, a girl can’t help but wonder about things like this, because things happen that prompt the need to newly evaluate them. People who love you respond differently to the news of a potentially terminal illness. At first, everyone rushes to assure you they will always be there to help however they can. And then, in as little as a few days time, some withdraw entirely — to the point of not showing up after making and confirming a date. And then you don’t hear from them again.
I figure those who withdraw like this are protecting themselves from the potential pain of loss if I die from an illness rather than an accident or old age. Had I not told them about my breast cancer, they’d still be around. I noticed this phenomena after my first diagnosis in 2001. Some people dropped all connection with me until I was “all better”. When I was diagnosed the second time, I was more careful in how I shared the news, aided by the fact that it was precancerous, so it wasn’t that scary. But this time, even I couldn’t hide from the fact that the news of a third breast cancer isn’t good. Sharing it became my biggest concern: do I tell those I love, or keep it to myself so they don’t have to wrestle with the fear of losing me? I made the best calls I could, and this time I’ve only lost one connection, although I’m not sharing my experiences and thoughts as freely I have previously.
For the first time in my life, I’m practicing a credo I formerly tossed about without making it a rule: I’m keeping my own counsel.
An example: I’ve been politically moderate for most of my life, beginning in 8th grade when I first read the Declaration of Independence and the Constitution. That changed after 9/11, when I found myself painfully uncomfortable with the invasion of Iraq. I spent years passionately arguing with those who felt differently, regardless of how upsetting those conversations were. Now, although I continue to have the same moderate views, I’ve decided that impassioned debates use energy I no longer want to spend on ideological differences. I think what I think; others think what they think; and we’ll either come to a compromise or one side will overwhelm the other, which will prompt a backlash at some point and eventually we’ll have to give it up anyway. I’ve concluded there’s no reason to expend energy trying to change minds that don’t want (or have no perceived reason) to change. So I’ve begun to invoke my right NOT to discuss topics that, in my experience, don’t produce anything but discord. When you’re dealing with a third breast cancer, creating or contributing to discord and disharmony is an unhealthy prescription. Despite years of believing otherwise, I’ve ceased arguing my case when the odds of getting anywhere are nil. This makes my body happy: it’s a healthier approach for me to take.
When you stop behaving in ways people have associated you with, it changes how they react to you. To continue with the example of political leanings, I’ve had an ongoing debate with someone who is much further to the right than I am, and incredulous that I could agree with “the left leaning socialist agenda”. So when I invoked my right not to talk about it, it shifted the dynamics in our discourse. We’re forced now to talk about other parts of life and, to my great relief, those discussions are fun: they make us laugh. And although I’ve known this for years, my current mulling has reconfirmed that laughter is one of my highest values…. right up there with loving my neighbors and doing for others as I would have done for me.
So far, I’ve concluded it’s okay for people to withdraw entirely. It’s something they need to do, even though I miss them. I’ve also welcomed those who’ve stayed with me, and some new folks who’ve arrived — adding new dimensions to my thinking. I’ve decided it’s okay for me to abstain from involving myself with anything that isn’t in alignment with what I need to be doing.
I guess it boils down to trusting myself. Of course I keep my antenna open for new thoughts and ideas, but I now know those new thoughts and ideas need to go through my own filter and, since keeping my own counsel can take time, I don’t rush the process. I feel closer to being at home with myself than I’ve ever been… except maybe when I was 4, and the world was my oyster.
For those who’ve made it this far in this post, thank you for allowing me to wander. As an effort to make it up to you, here’s a recipe I’ve found which has turned out to be a very good Thai Vegetable Curry. It’s from Eat To Live, by Dr. Joel Furhman, with some modifications by me (or course… modifying recipes is likely something I’ll never get over).
Note: This dish involves a lot of preparation, but if you’re going for “nutrient dense”, it’s worth it. I’ve been eating like this (nutrient dense foods only) for the last 6 weeks, having preceded that by 3 weeks with fruit and veggie juices. I’ve lost close to 20 lbs. in the last 9 weeks. This is a Good Thing.
Thai Vegetable Curry
Serves 8-12 (it makes a lot)
Ingredients:
4 cloves garlic, finely chopped
2 tablespoons finely chopped fresh ginger
2 tablespoons chopped fresh mint
2 tablespoons chopped fresh basil
2 tablespoons chopped fresh cilantro (I use more because I love the stuff).
2 cups carrot juice
1 red bell pepper, seeded and thinly sliced
1 large eggplant, peeled, if desired & cut into 1 inch cubes (I “sweat it” with salt for about half and hour)
2 cups green beans, cut in 2 inch pieces
3 cups sliced mushrooms (shitake, portabella, crimini, or whatever you can find)
1 (8 ounce) can bamboo shoots, drained
2 tablespoons Mrs. Dash, original
3-4 tbsp. curry powder (the recipe calls for 1/2 tsp. I love curry, so I use what tastes good to me).
1 cup watercress leaves
4 tablespoons unsalted natural chunky peanut butter
1 pounds firm tofu, cut into 1/4 inch thick slices
1 can light coconut milk
1/8 tsp. red pepper flakes
1/2 cup chopped raw cashews
1 tblsp. Bragg Liquid Aminos
unchopped mint, basil or cilantro leaves, for garnish (optional)

Instructions:

• Set the over to 375°.

• Peel the eggplant and cut into 1″ pieces. Set in a colander and sprinkle with salt to cover each piece. Let sit in the sink for about half an hour. The salt will “sweat” out any bitterness in the eggplant. After the half hour of sweating, rinse the eggplant to wash off the salt.

• Cut the tofu into 4 or 5 slices and set between paper towels while you prepare the other ingredients. Then, using more paper towels as needed, press on the tofu to remove as much liquid as you can. Then cut the slices into 1/2″ pieces, and toss in a bowl with about 1 tblsp. lemon or lime juice, 1 tblsp. of curry powder, and 1 tbsp. of ginger power. Place on a lightly oiled baking pan and cook in a 375° oven for 30 minutes.

• Cut up the garlic, ginger, mint, basil, cilantro, bell pepper, green beans, mushrooms and watercress and place in a large soup pot with the 2 cups carrot juice and eggplant. Add the bamboo shoots, Mrs. Dash, red pepper flakes, and curry powder. Bring to a boil, cover and simmer (stirring occasionally, until all the veggies are tender). Meanwhile, prepare and bake the tofu.

• Mix in the peanut butter and stir. Add the tofu, Bragg Liquid Aminos, and coconut milk, and heat through. Toss in the cashews and it’s ready to serve. Garnish if you like, although so far I haven’t found then need to add another thing.

Note: This can be served over brown rice or quinoa.

Interesting tidbit: According to Joel Fuhrman, author of “Eat To Live”, mushrooms (even one a day) help prevent breast cancer because whatever’s in them regulates the production of estrogen to keep it in balance. So, says he, if you do nothing else, have at least one mushroom a day. If you can have it with some onion, you’re boosting your anti-breast cancer odds even more. See my previous post for a nice recipe to help with this.