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The Breast Blog – Feeling Anxious

14 Jul

The Breast Blog #3

Feeling Anxious

July 12, 2011

Okay, I confess.  In this moment I am a bit anxious.  It is getting close to 2 months now, and I still don’t have a diagnosis.

I can go for a week at a time and be as calm as can be.  And then I’ll have an appointment, or a call to make to one of the doctors, and I’ll be nervous all over again.

I am well aware that there are a number of benign conditions that could explain my three or four symptoms (abnormalities).  I am aware that there is about an 80% chance that nothing serious is wrong.  Of course, stating the obvious, that means there’s a 20% chance that I do have cancer.

To get you up to date, here are my symptoms:

  • A dark discharge was discovered coming from my left nipple.
  • An ultrasound of my left breast showed a small nodule beneath my areola.
  • A mammogram showed a “cluster of micro-calcifications” in my right breast.
  • I feel discomfort in my left breast. (Sometimes this discomfort seems to be directly proportional to how much recent abuse my breast has gone through – ie, palpation, squeezing, etc.  But other times my left breast feels warm to the touch and my bra feels uncomfortable and it just plain “doesn’t feel right.”)

During my second-to-last doctor visit, I was informed that the nodule could be any of the following:

  • A papilloma (generally benign)
  • A fibroadenoma  (benign)
  • Cancerous (gulp)

I personally have ruled out fibroadenoma as they generally occur with younger women who eat lots of fruits and veggies, get moderate exercise, and have had several births.  If they’ve been on the pill, there is a lower incidence of fibroadenoma.  I am 53 years old, eat a fair number of veggies and fruits, don’t exercise nearly enough, have born no children, and was on the pill for quite a few years. Therefore, I seem an unlikely candidate.

A papilloma is most likely.  Apparently 40-70% of pathological nipple discharge (PND) is due to a papilloma.[1]  This is a growth which appears in a breast duct and is generally benign – unless there are “certain cellular changes”[2] – ie, atypical hyperplasia, which is doctor-speak for “an accumulation of abnormal cells.”[3]   Almost every site I researched called a papilloma benign.  I had to read carefully to get to the disclaimer “certain cellular changes” part.

Once again, for most women, the chances are good that their atypical mammograms reflect a “false positive” – ie, no cancer.  “80% of all breast lumps are not cancer.”[4]  And the Mayo Clinic states:  “Generally single papillomas are thought to be an aberration and not a disease.”[5]

I am torn here.  On the one hand, I want to document how I’m feeling.  On the other hand I want to be reassuring to women who may be reading this blog.  Please know, dear women, the odds are very, very good that you have nothing to worry about.

What concerns me specifically about my situation is that in addition to the nodule in the left breast, I have these micro-calcifications in the right breast.   “Microcalcifications are quite tiny bits of calcium, and may show up in clusters, or in patterns (like circles or lines) and are associated with extra cell activity in breast tissue. Usually the extra cell growth is not cancerous, but sometimes tight clusters of microcalcifications can indicate early breast cancer.”[6]

I was told that these are benign 80% of the time.  But again, there’s that pesky 20%.

So, I have different things going on in each breast.  Each condition has about an 80% chance of being benign.  Math is not my strong suit, but I’m guessing two 20% chances of cancer is more worrisome than one 20% chance.

To tell the truth, initially I was not overly alarmed.  There seemed to be a good chance everything was benign and I hadn’t had any premonitions or anything.  However the thing that started to worry me was when I took a solitary retreat to get clear on my next course of action.  I had taken a book with me:  She Who Dreams, by Wanda Easter Burch.  In this book she documents the pain she’d been having in her breasts and the dreams which finally took her to the doctor’s and the dreams which ultimately helped guide her in her healing.  I had been reading snippets of the book when I had a sudden memory of a few dreams in recent months  in which the word “cancer” was mentioned.

The next day I spent the whole day poring over journals from the last year.  I found many marvelous dreams, several scary dreams, and thus far, two cancer dreams.  One was especially  to the point.  A woman ally turned to me and said, “How’s your cancer, Cindy?”

Uh oh.

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Deciding to Change Doctors

14 Jul

June 23, 2011 

After discovering I had “suspicious” mammograms and ultrasounds, I was referred by my primary doctor to a breast specialist. I was decidedly ambivalent about him.  He was certainly charming enough.  I liked him, was even a bit attracted to him.  But I found myself frustrated with his communication skills.  For instance, two different times I went to his office assuming I was getting my biopsies done.  Apparently, this was not on the agenda either time.

In retrospect, I guess I was terribly naïve.  But I’m a hospital novice!  (I am one of those blessed few who has never been admitted to a hospital.)  And I’m certainly a novice when it comes to breast concerns.   This is all new to me.  I wish someone somewhere along the line had explained the course of action a bit better.  All I knew was the mammograms and ultrasound showed two different concerning situations and I assumed biopsies would be the next course of action.  So why was I having repeated consultations with this supposed specialist?  Twice!  It felt wholly unnecessary.  I wasn’t really sure why I was seeing him.  What was he supposed to be doing?  It was all rather strange and confusing.

When I returned for my second appointment – having once again psyched myself up for at least one biopsy – I found out that we were again in consultation mode only.   Frustrating to say the least!  But what was worse was that he told me what he planned to do.  His plan of action was:  1) Do what is called a stereotactic biopsy* on the right breast, where “a cluster of micro-calcifications” had been found.  And 2) schedule me for the OR so that they can remove the nodule found in my left breast and then do a cannulization of the involved milk duct(s).*

It took me a few days to realize that I was pissed at him.   And even more time to figure out why I was angry and what I was going to do about it.

March 10, 2016

Now, almost five years later, I realize that these were reasonable  courses of action.  But I hated the way he presented this to me as if it was a done deal.  If he had said, “I propose we do” thus and so, I might have been more receptive.  But when he said, “This is what we’re going to do,” I got offended.  I’m an intelligent woman and I wanted to be more involved in the whole decision-making process.  And I wanted to understand more fully what was going on and whether or not there were other options.

I don’t think he fully understood that THIS WAS MY BODY we were talking about. This was all an extremely BIG DEAL!  I just wanted to feel more involved and respected.

June 23, 2011

It took me several days, plus breakfast with a friend, plus a therapy session with another friend, plus a day away “on retreat” before I got clear that I wasn’t ready to rush into these procedures and I certainly wasn’t ready to rush into them with him.

Okay, let me back up a bit to that first week of discovering that something was amiss.

I had been remarkably calm during the first visit with my primary doctor and for a large part of the following week.  But when I went for the first consultation with the breast doctor (what I foolishly thought would be a biopsy), I was suddenly freaked out.  I realized I had put all my emotions aside and focused on everything BUT the fact that I could have breast disease, could lose a breast, could need chemotherapy, etc., etc.  And all the sudden I realized, YIKES!  Perhaps I should have sat with this a bit longer.

I called a girlfriend who is a breast cancer survivor.  It was only 7:15 or so in the morning, but as she is a mother with a school-age child, I took the chance of calling.  She was perfect.  She said basically, “Most cancers are quite slow-growing, therefore there is no rush to decide anything.  It is appropriate to sit with your options and consider what is best for you.  A few days are not going to hurt you.”

This was extremely reassuring to me.  Everything had happened so fast.  From the first call to the doctor, I’d had an appointment with my primary, mammograms, an ultrasound, and two brief meetings with radiologist in five days.  And my guess is it would have been even faster except that the Memorial Day weekend fell between those appointments.

Fortunately, I had just begun (finally) to share my experience, my concerns and fears with a few friends.  On Monday, a friend highly recommended this woman who specialized in breast care.  She was noted for her willingness and ability to talk out all the options and concerns of women facing breast disease.  A couple friends recommended her very highly.  She was rather well-known.

It wasn’t until I got clear that I wanted to, at the very least, get a second opinion, that I looked her up online.  To my surprise and delight, she was a doctor!  In fact, she was a surgeon with an excellent reputation.  And here I had thought she was a counselor!  Not only that, but she was open to women pursuing any avenues which might lead to greater healing.  And she was a master Reiki practitioner as well as a doctor!  This was my kind of doctor!

The more I thought about it, the more I realized I wanted to work with Dr. DuPree and her colleagues.  This is the way healthcare should be provided.  It should be caring.  It should be clear.  It should be professional.  It should feel like a team.

I want these people on my team!!!