Test Anxiety: The August Installment

This week’s mail brought two folded papers full of numbers.

These numbers are the results from last week’s visit with my internist for my annual check-up. Height, the same. Weight, the same. Cholesterol, TSH, vitamin D levels – all normal. The phlebotomist was so good I barely felt the needle stick in my arm — the right arm, ALWAYS the right arm, because it was the left side that was traumatized by the surgery and radiation. I still have to remind myself to tell the doctor’s assistant to use the right arm for the blood pressure cuff or needle. It’s not yet habit for me to remember this myself, and I don’t need to tempt another onset of lymphedema.

I didn’t expect to see anything scary on the report from my internist.  After all, I am in quite good health (oh, except for that bout with cancer).

The previous week, I anxiously awaited the results of the annual mammogram and MRI scan. The current guidelines for mammograms vary depending on whom you ask. Anyone who’s interested in or affected by these guidelines likely knows the ongoing controversy around the usefulness and timing of the test. Agencies and physicians change their minds frequently about what’s appropriate.

Given that mammograms are less reliable in people like me who have dense breast tissue, I am extremely reluctant to put my faith in them, especially since they did not show the tumor that caused me so much grief. Still, my oncologist insists I have one each year, and my radiologist says that, though it isn’t perfect, it’s the best test we have. (To which I say, it’s about time we come up with something better.)

So, every year around this time, I trek to the radiology center to undergo the test. Four years past my diagnosis, my anxiety about the test now only kicks in as I don the cape in the dressing room, not several days beforehand. And because the same radiologist has been viewing my images and so knows me (or at least my breast tissue) pretty well, he makes a point of coming to tell me the results before I can even leave the building.

They say your diagnosis is only as good as the radiologist reading the images. I’d also say, regardless of the diagnosis, the effect of the results on the patient is only as good as how (and how soon) the radiologist delivers them. The longer the wait, the higher the anxiety spikes.  A face-to-face conversation or a phone call the same day trumps a form letter a week later, even when the news is good.

People sometimes wonder why someone would not go to see a doctor if there is something wrong. It comes down to this – if you ask a question, you’ll usually get an answer. Anxiety is what tells you the answer might not be what you hope for. If you never ask the question, you never have to hear the answer, and so some people never ask.

Immediately after Dr. P came to report the results to me (“Everything looks OK”), I was taken to the other side of the building for an MRI, something I’ve asked for each year since the end of treatment. It’s not customary to have an MRI unless the doctor suspects there’s something to find, and the MRI has some inherent problems as well, but I have asked for it precisely because the mammogram is unreliable for me. And my oncologist has readily agreed. This is no small agreement as the test costs about 2 thousand dollars (which alone spikes the anxiety level) and, as my oncologist reported to me last time I saw him, he’s starting to see insurance companies refuse to cover the MRI unless the patient has current signs or symptoms needing attention. I can understand insurance companies wanting to cut unnecessary costs, but peace of mind is always necessary. With the results of the mammogram coupled with the MRI, I can be reasonably sure that we’ve got a good picture of what is (or isn’t) going on.

Lucky for me, our current insurance approved the test — at least for this year — and Dr. P reported, when he called the next day, that “All looks good this year.”

This year.

With this good news, and the normal numbers from the internist this week, my anxiety has dropped from stratospheric to just atmospheric, where it should stay till my check-up with the oncologist in November.

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Reprieve?

In the mail a few days ago came the report of the results from my recent MRI. Along with the mammogram, the MRI is one of the ways the medical folks keep an eye on me after my cancer treatment. I am more than 3 years past the day I received the breast cancer diagnosis, and 2-and-a-half years past the end of chemotherapy. That’s when the countdown, for me, to that critical 3- and then 5-year mark began.

The MRI may seem like overkill, especially with its added expense and the dogged determination of the medical community to promote mammograms. But it’s necessary for me because the mammogram tends to fail those of us who have dense breast tissue — a factor that is finally starting to show up on lists of risks for breast cancer. Besides the annual mammogram and MRI, I visit my oncologist every 6 months for blood tests and a review of my status. My last 6-month check-up, back in April, showed only some lingering whacked-out red blood cells.

At that time, I had developed a new pain in my right abdomen, one that had hung around for a few weeks, consequently triggering my internal alarm. The pain had passed the 2-week mark I had been coached to observe. And so I followed the oncologist’s suggestion to have an abdominal ultrasound, which fortunately, like the mammogram and MRI, showed nothing wrong. (Cancer, the “gift” that can keep on giving — you just don’t know when.)

Although my body seems to be recovering well, is actually intent on reclaiming its good health, I am still struggling with the mental, emotional,and spiritual recovery. My body has its own mind. The mind itself needs to catch up.

The nurse had already called me to report the MRI results, but that wasn’t enough. I needed to see the full report in print on the page in my hand.  And in that small space of silence after reading the results, when I let out the breath I had been  holding, a tiny thought crept in. A new and, for me, startling thought.

It just might be possible to be cured of this disease.

The body will know when that happens. The mind might never be sure.

Everything and Its Dog

Here’s a quiz.

Which of the items listed below is something you *do not* want to see on a pathology report after a breast biopsy?

A.  Fibrocystic changes
B.  Hyperplasia
C.  Microcalcifications
D.  Columnar cell change
E.  Atypical hyperplasia
F.  Sclerosing adenosis

The answer is E.

Thankfully, item E did not show up on the pathology report from the two biopsies I had of the right breast two days ago.  This was the good news Dr. L delivered when I answered my buzzing cell phone this morning.  Every other term listed here appears on the report. I had no idea there were so many varieties of benign cell changes in the female breast. Some of them sound pretty awful, but even hyperplasia is OK as long as it’s not atypical, a situation that could indicate the beginnings of cancer.

The biopsies were the result of some “suspicious findings” (as the pathology report puts it) on the right side on the 6-month follow-up MRI scans I had taken last week.  (Skipped those dastardly mammograms, thank you, and went directly to the big machine.) Fortunately, all is clear on the left side where surgery was done a year ago. Dr. L gave me the choice of having the biopsies or waiting another 6 months and checking again.

Look, I’ve learned a lot about mastering anxiety over the past year with stones, yoga, prayer and all those “woo-woo” techniques, but I’d have to be nuts to just wait.  So there I was again a few days later, face down on the MRI table, arms overhead as in a poorly executed dive, breasts inserted into their appropriate slots, allowing Dr. B to poke me with large needles.

This biopsy differed from earlier ones in that it was stereotactic, which means the technician calculated the exact locations of the “suspicious findings” using a computer and the MRI images.  The previous biopsies were done with me on my back while the radiologist located the problem areas using ultrasound.  A stereotactic biopsy is called for when the abnormal areas are too small to be located on either mammogram or ultrasound. The computer lines up the coordinates and the doctor can extract what is needed  for analysis and place a tiny clip in the spot that was biopsied for future reference.  Dr. B took  6 samples from a spot at the 8-o’clock position on the breast, and 12 from the spot at the 10-o’clock position.

You’d think that, with all the holes poked in my breasts by now, anything nasty would just leak out. If we keep going at this rate, I’ll be down a cup size, but I don’t think bra manufacturers make anything smaller than what I’ve already got.

By itself, the MRI procedure is nothing to fear.  No sharp instruments, no radiation. Just some loud banging and knocking. Though your position may not be the most comfortable, you do at least get a headset and your choice of music to listen to.  During the initial scan, I chose classical music, and was nearly in tears when Tchaikovsky’s “Waltz of the Flowers” came to my ears.  It’s not that I particularly love Tchaikovsky or  the over-sentimentalized “Nutcracker,” but what it brought to mind in that moment were the many dance recitals of my childhood, on the stage in my costume under those hot lights. (Surely every ballet student has danced that waltz.) In my dread of what the MRI might find, the music reminded me of a childhood long since gone.  Beauty and happiness are often recognized only in hindsight.

Next, as if to remind me of the task at hand, came The 1812 Overture. It must have been the day to play Tchaikovsky’s greatest hits. The knocks and bangs of the MRI fit nicely with the cannon shots in the music.

But there was no music during the biopsy, and when I sat up at the end, it was mildly disconcerting to see a puddle of my own blood on the tray below where my breast had been.  The MRI may be able to pinpoint a tiny lesion, but it can’t tell you where the nerves and blood vessels are, and these structures can become “collateral damage” during the procedure.  The 8-o’clock spot in particular kept bleeding, so the nurses applied a large compression bandage — lots of gauze and adhesive tape — that instantly doubled my breast size.

Frankly, size can matter, but bigger is not better.

While they were applying the bandage, Dr. B came back in to speak with me, and I asked him the question I’m sure every doc hates to hear:  “What do you think it might be?”

Without test results in hand, it’s almost unfair for a patient to try to pin a physician down to a diagnosis.

Dr. B is a soft-spoken man with the delicate lilt of a North Carolina accent who raises llamas in his off hours. He has done 4 of the 5 biopsies I’ve had. If things keep on as they have, we will become good friends. As he put it, MRIs light up “everything and its dog,” and produce a fair number of false positive results, which is one of the reasons insurance companies don’t like to cover them for people like me (not to mention they’re much more expensive than mammograms).

Based on what he saw on the images, he guessed that the enhanced areas were not likely to be trouble, but we couldn’t be sure until the pathology report came back. Some of what appeared on the images had been apparent back in January and could be attributed to hormonal changes, but now that I’ve been forced into menopause by the chemotherapy, the doctors figured those changes should have disappeared.

Well, y’know, I can be a little slow sometimes.

The technician who runs the MRI told me they do about 5 stereotactic breast biopsies a day, largely for people like me with dense tissue. Numbers like these (25 a week, more than 1200 a year) for tests that produce many false positives are as disturbing as the false negatives of mammograms. Clearly, we need more accurate methods of diagnosis.

The Zap Count

Dreary day. No mountain, and only one hummingbird (Robin Hood) visiting today. My son is home with a cold — one of those that creates a drippy nose and low fever but doesn’t warrant staying in bed.  So I put him to work helping me with laundry and editing a brain surgery article.  The boy doesn’t know what a brainstem cavernoma is, but he’s got a sharp eye for grammatical errors and incorrect punctuation.

The Popsicle Report:  I can’t believe it.  I had to go to the infusion center last week for my monthly port flush (an unfortunate choice of terms, but I’m not responsible for that).  First one since finishing chemo on New Year’s Eve. The flush consists of hopping in the assigned Barcalounger and going through the motions as if I were getting chemotherapy — except without the nasty drug part.  The nurse pokes the needle into the port and essentially backwashes it with saline and heparin.  The flush takes only a few minutes, and it was during those few minutes that I reminded myself to grab a Popsicle on my way out.  After all, I was legitimately in the right part of the building to snatch one.  I sat there feeling like a high schooler going back to visit elementary school.  The rooms looked familiar in a vague sort of way. (Oh yes, I recall. This window had the stained glass hummingbird on it!)

Afterward, walking across the parking lot to my car, it hit me:  I FORGOT the Popsicle!!!!
I could have, no, SHOULD have gone back  for it, but wouldn’t you know, I had to be somewhere else on time. Grrrrrr……

This week, I’m introducing The Zap Count, a countdown of the days of radiation treatment. Today‘s count:  8 down, 25 to go.

The daily visits to Radiant Care (a name that seems to describe some new type of heating system) are routine now. Drop my son at the bus stop, drive across town to the oncology center, get zapped, drive home.  I’ve got the undressing part streamlined — same room, same locker, shoes at the bottom, hat on the hook — and the technicians continue their assembly line process.  Lights out, the technicians peer at my naked chest as thought it were a map of the moon. The linac moves and buzzes, rotates around, buzzes again.  Off the table and back through the Fish room to get dressed. Films taken on Monday, see the doc on Thursday. Though I see few other patients as I come and go, the technicians tell me they treat about 30 people per day on each of the two machines.  Sixty patients a day, 5 days a week, roughly 50 weeks all works out to 15,000 people per year, give or take.  That’s roughly the population of my hometown.  In 2006, The International Journal of Radiation Oncology counted 2,246 radiation therapy centers in the U.S.  If all of them are as busy as the one I go to, well… with a calculator, you can do the math. And realize that only about half of cancer patients go through radiotherapy.

Those numbers are one of the catalysts for a series of articles in the New York Times a couple weeks ago about the dangers of radiation therapy (link: http://www.nytimes.com/2010/01/24/health/24radiation.html).  The writers describe the horrible details of several patients who were seriously injured because of errors in their treatment, and discuss the lack of regulation of the equipment and personnel involved in delivering the radiation.  One man died after gross over-radiation of his neck during treatment for tongue cancer that he believed developed as a result of his work helping people around the World Trade Center right after it came crashing down. This particular article intends to induce fear.  Whether that fear is justified isn’t quite clear though because the writers fail to follow those journalistic principles of being “fair and balanced.”  Though the articles document numerous errors (fortunately not all as dire as the ones that caused the man’s death), it doesn’t document just how many people are treated with radiation to put those errors in context.

Still, it prompted me to ask Dr. W some questions when she called me today.  She had seen the articles and assured me that Radiant Care has well-trained personnel that does regular checks on equipment, and everything is double- or triple-checked precisely to prevent errors. That’s the reason for the films taken every Monday — to ensure that the patient is in the same position for every treatment and the plan is enacted meticulously.  In my case, that means they watch very closely to ensure that the linac avoids zapping my heart. I was as relieved by Dr. W’s comments concerning the articles as I was for the real reason she called — to report the findings of the biopsy I had last week.

In a previous update, I mentioned that the docs sent me for a mammogram of the left breast and an MRI of both as follow-up to last summer‘s surgery and to lay the groundwork for radiation. For a few days, because of what appeared on the MRI, I feared I was once again in the maw of the beast. A tiny area in the right breast “lit up” (as the professionals say) on the MRI. Barely a month since I finished chemo– how could it be? And so I made a third and fourth trip to the radiology center for a mammogram, then an ultrasound, and then a biopsy of the 4 millimeter spot.  The radiologists didn’t think the spot was cancer but thought it best to check it out thoroughly “given my history” (as the professionals also say).  It turned out to be a harmless cyst, new since last summer and likely the result of fibrocystic changes related to hormone changes (despite the chemically induced menopause) and it collapsed as soon as the biopsy needle went in.

Once again, I deeply resent the fear this disease incites, but I learned much about how radiologists differentiate between harmless and harmful lesions on breast images.  Malicious things light up on MRIs.  On ultrasound images, they have tentacles (“like a starfish,” the technician said) and cast a shadow below them. And cancer doesn’t collapse when you poke it. Your average harmless cyst is nice and round, wider than it is tall, and doesn’t cast a shadow.  I know this because I asked to see the images, in the same way I asked the technician to see the images of the mammogram (which showed nothing!!!!), and I watched the ultrasound image as the doc did the biopsy.  My internist was the one who put me on to this tack last summer by saying “every patient has the right to ask” — to see the images, the records, or whatever it is you need to get answers.  And so, I asked.

And this is what I know: Women fuss about them. Men fawn over them. But except for feeding babies, breasts are highly over-rated.

So now I’m back to just my everyday level of fear (perhaps it’s time to develop a color-coded chart to echo that created by Homeland Security) and I’m determined to push through the radiation, even though it’s a daily reminder that I’m a member of a club I don’t want to be in.  I’m keeping in mind the key word a woman gave me after church last week.  Yes, another one who spotted the telltale headscarf and approached.  She had been watching for me, and flagged me over as we were walking out after the service. She was worried because she hadn’t seen me for a couple of weeks and I explained that we had been out of town and I missed one service because of a cold. Since I didn’t know her, I wondered why she was watching for me. She explained that she’d had breast cancer 7 years ago and understood what the scarf meant. The word she gave me, even forced on me when I said I have breast cancer, is had.  Not have cancer, but had cancer. And she’s right.  Those three letters trigger a vastly different way of thinking.

And  now, for some vastly different identities to go along with that new vocabulary, take a look at these photos:

Incognito

Sr. Mary Audacious

Parrothead.

I’m looking for my last shaker of salt.

In the Beginning…

So here’s where we are today, June 4, 2009, the beginning of my own personal Odyssey:

The MRI yesterday showed that the lesion in my left breast is about 1 cm, smaller than I was expecting given the size of what I felt after a shower a just before Memorial Day. It “lights up” on the images, which indicates malignancy.  The docs noticed another area on the left that didn’t light up but that they wanted to check out, along with checking the right side.

So today I had another ultrasound of both sides.  The second spot on the left is smaller and they don’t think it’s a problem but want to be sure, so I have a biopsy for that tomorrow. (The ultrasounds are quite comfortable — the biopsy, well, that’s another critter altogether.)  Everything on the right side looks OK. We’ll probably have the results of that biopsy on Monday.  And I’ll talk with an oncologist early next week to get his input.

The malignant lump needs to come out, so I anticipate some sort of surgery mid to late next week.  If the second spot is benign, we can do a lumpectomy and they’ll check the sentinel lymph node.  If the other spot needs to come out too, the surgery will be more extensive.  For a lumpectomy, it’s “same day service.”  For something more extensive, it’s an overnight stay.

More to come as the drama unfolds….