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.

The Latest Developments

A couple days ago, I went in for the next in my series of 3-month check-ups.  A few odd numbers still show up for the blood cells, but everything else looks OK.  It’s been 15 months since the end of chemotherapy, just over a year since my last dose of radiation.  So I “graduate” to check-ups every 6 months now, and return to the annual schedule for mammograms/MRI. (Frankly, I’d prefer to skip the mammogram, but the doc likes to see one.)

So why the switch to a new schedule? After all, cancer can come back any time it pleases.

The logic goes something like this:  If it’s a supremely aggressive breast cancer, it will very likely come back during the first year after treatment.  After that first year, the chance of recurrence drops a bit and, in the case of triple negative disease, the chance of recurrence drops precipitously after the third year.  But as is typical of the confusion in the media when it comes to health information, I also read somewhere that the peak of recurrence for triple negative tumors is in the second and third years, so I don’t know what to believe.  This is one of those moments when I just turn myself over to the recommendations of the folks who know more than I do.  If the doc says don’t come back for 6 months, I’m not going to argue.

Listed below are bits of news I’ve collected about recent developments related to cancer and cancer patients in general:

  • Lest we think too much of our American advances in medicine, to the exclusion of developments in other places, here is an article describing the use of something called the Mobetron, a type of linear accelerator, in Japan.  This unit is used for intraoperative electron-beam radiation therapy (radiation delivered *during* surgery) and has been employed for patients with pancreatic cancer since 2006 and breast cancer since 2007. Its use in Japan was inspired by results from studies in Italy. This approach makes it possible to apply a single dose of radiation directly to the cancer site during surgery, allowing the patient to avoid the 6 weeks of standard postoperative treatment. Besides the obvious advantage of shortening treatment, such an approach means the surgeon can directly see the field to be radiated and there is less damage to surrounding tissues. This technique has crossed the ocean but is not widely available yet in the U.S.  If you’re interested, you can see the unit in operation (and the shameless plug for the hospital it’s at) in this video.
  • A couple of other recent studies serve well to dispel some of what are in fact myths of cancer treatment.  The first group of researchers found that depression is no more prevalent in cancer patients than in the general population of primary care patients.  The second set of investigators discovered that it may not be necessary to remove a large number of lymph nodes to assess the spread of breast cancer  – a procedure called lymphectomy that can sometimes lead to problems with lymphedema, a painful swelling of the arm.  They found that women who have only a few nodes removed for analysis have 5-year survival rates almost identical to those who have more nodes removed. I rather wish this study had come out a little sooner, but it might not have changed the picture for me after all. Extensive removal of nodes may still be necessary for those who have Stage 3 cancer. The piece of this puzzle yet to be explained is how a doctor then determines the stage of disease, since the number of lymph nodes involved is often what distinguishes, say, Stage 2 from Stage 3.  I’m sure there’s more news to come on this front.
  • A friend sent me a notice about ways to prevent thyroid cancer, the rates of which have been steadily increasing over the years, particularly in women. Some researchers suspect that this increase could be a consequence of the increased use of dental x-rays and mammograms.  Few of us know that the apron the dentist puts on you for x-rays has a flap that goes up around your neck to protect the thyroid.  There is also something called a “thyroid guard” for use during mammograms, but most technicians don’t use them unless you ask.  You can find more information about these methods of protection at one of my favorite websites, the one that investigates Internet myths and legends – Snopes.com.

Myth Busting, Part 1

A couple weeks ago, I went in for another trip to another doctor.  This visit was routine –the “review of systems” recommended at certain age milestones.

I hadn’t seen my primary care doc since the day she gave me the breast cancer diagnosis in June of 2009. Except for a few ongoing aches (the jaw, the elbow), I seem to be in pretty good shape. I got tetanus and whooping cough boosters, gave up two vials of blood for tests (sedimentation rate, thyroid hormone), and was sailing merrily out the door when I realized I’d forgotten to ask when I’m due for the next mammogram.  My last one was in July, 8 months ago, but some guidelines recommend every 6 months for a couple of years after surgery.

So back I went to the desk clerk, asking her to query the doc.

“I don’t know whether we’re bothering with the mammogram anymore,” I said, “since they turned out to be pretty useless for me.” Before I’d even had a chance to finish my comment, the desk clerk rolled her eyes and nodded.

“Useless, that’s right,” she said definitively.

Obviously, she had no more faith in them than I do. I replied, “Yeah, I just wish the media would get that message across to the public, instead of the myth that mammograms will save you.”

She nodded again and said, “Yeah, that would be great.”

That message should be even louder with the report last week that mammograms are even more useless for those of us who’ve had breast cancer.

******

Also a few weeks ago, in my e-mail, came a link to an article about a woman in Chicago who returned to work after her treatment for triple negative breast cancer. Appearing in the article is a comment I’ve seen too often now — that this form of cancer is “aggressive” and outcomes are often “poor.”  These comments have been repeated almost as if they were scripture.

As with information about any given disease, the truth of the matter is in how you slice the data. Clearly, the woman in Chicago is doing well, as am I.  Of course our present circumstances are no guarantee of continued good health, but they do work to dispel the idea that triple negative disease is always deadly. A booklet published by the Triple Negative Breast Cancer Foundation, Guide to Understanding Triple-Negative Breast Cancer,clarifies a number of the misunderstandings about this particular form of breast cancer:

  • About 10 to 20 percent of breast cancers are triple-negative.
  • Triple-negative breast cancers do not respond to “targeted therapy” such as Herceptin and Tamoxifen. (HER-2 negative tumors were actually considered the most dangerous type of breast cancer until Herceptin came along.)
  • Although BRCA1 mutations increase the risk of developing triple-negative disease, not all breast cancers from BRCA mutations are triple-negative. The BRCA2 mutation is actually more likely to appear in tumors that are estrogen receptor-positive.
  • Even if you have no family history of breast cancer, you could in fact be the first person in your family known to develop breast cancer because of a BRCA mutation.
  • Pre-menopausal women and women in black and Latina groups have higher rates of triple negative cancer than other groups of women.
  • Chemotherapy works better against triple-negative cancers than it does against hormone positive breast cancers.
  • Although triple-negative breast cancer can be aggressive, it does not always metastasize. The risk of recurrence is strongest in the first 3 years after diagnosis (some studies say 5 years, some as many as 8-10 years).  Past this time, the risk of recurrence actually falls below that of other types of breast cancer.

And most importantly, most women with triple-negative breast cancer never have a recurrence or a new cancer.

So, like the myth about mammograms, the message about triple negative breast cancer needs to change.

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.

Of Hummingbirds and Rollerblades

In this post, a collection of items related to my journey, I begin by marking a sad ending.

Last week, as my son and I sat outside absorbing some long overdue sunshine on a quiet summer afternoon, we noticed something under one of the deck chairs — a small, still, feathered body lying limp in the shade of the chair. Without needing to look closely, we knew instantly what it was.  The hummingbird must have collided with a plexiglass panel on the deck. With great sadness, we placed the tender bird in the grave my son dug near some flowers in the yard, and he suitably marked the spot with a declaration of truth.  Here, indeed, lies a hummingbird, one of the companions of my year’s experience.

In my e-mail last week, I received a link from a friend. You know those links, the ones designed to get you to sign a petition about a particular political issue. There are too many of these petitions to keep track of, and you can never be sure whether  the petition arrives at its destination. This link, however, connects to a petition to prevent what’s being called “drive-thru mastectomies.”  In the constant battle between health care providers and insurance companies (which will certainly not end despite the new federal legislation), the insurance companies are wanting to shorten the time a woman is allowed a hospital stay after a mastectomy to 48 hours. Now anyone who has undergone major surgery of any kind, not just mastectomies, knows that it is beyond ridiculous to expect patients to be ready to go home in such a short time. I signed the petition, hoping never to have to fight that battle myself.  If you’d like to sign, you can find the petition here:

http://www.mylifetime.com/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition?q=my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition

If you’d like to verify the petition or read the history of the legislation behind it, which has been stuck in committee in Congress for years, you can go to Snopes.com: http://www.snopes.com/politics/medical/mastectomy.asp

If you’re not familiar with Snopes, you should be. It’s the best site to fact-check the various e-mail petitions, chain letters, and urban myths and legends that circulate in cyberspace. (The name of the site comes indirectly from a family of characters in William Faulkner’s novels. If you know those characters, you know the irony of the name for the site. The Snopes’ would never be clever enough to think up such a service. In fact, they’d likely contribute to the legends found there.)

Last week also brought a few spots of humor.  A woman in the U.K. sent me the link to her blog about navigating chemotherapy with style and humor.  You can find her here: http://glamotherapy.wordpress.com/

And I credit my brother for sending me this link, which is too good to save for its corresponding holiday:

The Dad Life: http://www.youtube.com/watch?v=DOKuSQIJlog&feature=email

And here, for the moms, is the companion piece:  http://www.youtube.com/watch?v=80olbDws8r0&feature=related

At the ending of this post, I’d like to mark a couple of beginnings. First is a nod to Western Washington Oncology, the center where I have undergone treatment.  The staff and physicians at this center are the ones who saw me through chemotherapy and radiation and connected me with all those supportive ancillary services — massage and Reiki, acupuncture, naturopathy, yoga for survivors, and a counsellor , all under one roof, — which have made the burden of treatment easier to bear. As of next month, patients who are newly diagnosed with cancer can have an initial meeting with their entire medical team and support staff, which includes a patient navigator to shepherd them through the overwhelming and complex maze of cancer treatment.  My conversations with friends from other parts of the country indicate that such an approach is not common. So here’s to a new way of helping patients at perhaps their greatest moment of need.

And finally, with the return of summer and my strength, I have begun again to don my rollerblades.  Here’s to many days of  zipping ‘round parking lots in the sun.

Trust Your Dog, Not Your Mammogram

This Sunday’s newspaper included the usual issue of Parade magazine.  Those of you familiar with Parade know that it includes articles about celebrities, topics of general interest, a few comics, and some mental puzzles, with lots of ads about TV shows, cosmetics, weight loss systems, and trendy gadgets.  I usually skim through it quickly before I read the newspaper, but this week’s issue had me poring slowly over the cover articles, all of which deal with cancer (www.parade.com).

The cover’s photo is of Lance Armstrong, decked out in biking gear, holding his year-old son.  Most of us know that, besides winning the Tour de France a record-breaking 7 times, Lance Armstrong is also a cancer survivor.  He was diagnosed with testicular cancer at the age of 24 and has, since then, been instrumental in putting the spotlight on research for cancer.

The first article details the experience of two other cancer survivors who also received their diagnosis at a young age — a man with leukemia at age 25, a woman with bladder cancer at age 41 — and describes some of the medical problems that can linger after treatment for cancer: pain, fatigue, and cognitive impairment, among others. According to this article, I’m a NED — someone with No Evidence of Disease.  Thankfully, I don’t have the problems the article talks about either.

The second article details the valuable work of hospice caregivers, while the third article tells you how to beat colon cancer through early screening. Later in the issue, a chart lists the top 10 cancers along with the amount of funding the government supplied for each in 2009:

Lung and bronchus:                   $246.9 million
Colon and rectum:                      $264.2 million
Breast:                                              $599.5 million
Pancreas:                                           $89.7 million
Prostate:                                          $293.9 million
Leukemia:                                       $220.6 million
Non-Hodgkin’s lymphoma:     $130.9 million
Liver:                                                  $70.3 million
Ovary:                                               $110.1 million
Esophagus:                                        $28.8 million

These numbers come from the National Cancer Institute.  As you can see, they don’t reflect the impact of the various types of cancer. They also do not include funding from the American Cancer Society, which also spends more on research for breast cancer than any other type.

That’s good for those of us who’ve had breast cancer.  Not so good for people with other types. (And we can only speculate about why researchers are significantly more interested in breast cancer.  Is it because there‘s more money to be had?  Or are breasts more interesting than, say, lungs.)

But it was the last article in the series that really made me sit up.

Perhaps you’ve heard about the ability some dogs have to predict earthquakes and the onset of seizures in people with epilepsy.  Now, it seems they might also have the ability to detect cancer.  In a study done in 2006, five dogs “were able to correctly spot breast cancer 88% of the time and lung cancer with 99% accuracy — rates that compare favorably to chest X-rays, CT scans, and mammography”  (“Sniffing Out Disease” by Susan McCarthy, www.parade.com/health/2010/06/20-dogs-sniff-out-disease.html).

Well, shoot. Why did I spend all that time and money on mammograms that did me no good? I could have just cozied up to my dog.