maven&meddler

Mr. Maven came running into the other room, saying “Hey, come watch this thing about breast cancer. You might be interested.”

Yes, you could say so.

You see, Fox News reporter, Jennifer Griffin, was telling about her new battle beyond the war zones of the world - it was with Stage III, Triple Negative breast cancer. The deadliest kind.

That’s what I had.

Reporter battles deadliest breast cancer

I wish they had spent more time on what makes a breast cancer a Triple Negative, but perhaps that’s my job.

I was diagnosed in 2002, upon a second opinion examination at the University of Texas, M. D. Anderson Cancer Center in Houston, Texas. In Reno, where I live and first got the news about having cancer, they’d told me that they’d caught it early, and it was very small.

Hardly the correct picture, hence the critical need for a second opinion.

My tumor, upon biopsy and examination was huge, more than six centimeters across. The cells, upon microscopic examination, were negative for HER 2 protein Receptor, so the targeted therapy of Herceptin would not be available to me.

Furthermore, my tumor was Estrogen Receptor negative, and Progesterone Receptor negative. Hormonal therapies like Tamoxifen would also not be effective, especially as a first assault. They did not ‘express’ the genes for those receptors.

Hence the characterization of Triple Negative.

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The only effective treatment would be agressive chemotherapy - to begin BEFORE surgery. This is referred to as neo-adjuvant chemotherapy.

Had I been treated in Reno, I was schedule to receive surgery first and probably - I say probably because I hadn’t even been sent for a consult with an Oncologist, but rather to a surgeon only - chemotherapy afterward.

I would also probably be dead to today, since that is not the Standard of Treatment for this stage and type of breast cancer. Unvortunately, it’s the type of treatment that women will still get out and around the country, away from the major cancer centers. The neo-adjuvant treatment enabled my team to assess, during treatment, whether or not the chosen chemo drugs were effective by measuring the tumor with calipers after each round. Had the tumor been removed first, they couldn’t do this and would, essentially, be guessing.

Watching the video, I was glad to see Jennifer getting chemo before her surgery. It sounds like she is one of the lucky ones. I’ve been to too many funerals here at home for those who didn’t seek a second opinion, and get the right care.

Jennifer mis-spoke about Triple Negative being new as a diagnosis. I was fully aware of the Triple Negative issues in 2002, and found plenty of information online about it then. Certainly, the experts at MDACC were very familiar with it, which is the reason to seek treatment at a comprehensive cancer center where they see it all - frequently.

Here’s what cancer researcher, Dr. Susan Love has to say about this:

In the mid-1980s, when it became apparent that hormone therapies only worked in tumors that were estrogen receptor (ER)-positive or progesterone receptor (PR)-positive, pathologists began to routinely test all breast tumors for their hormone status. As a result, for the past two decades, we’ve divided women with breast cancer into two categories: those whose could benefit from hormone therapy and those who would not.

This categorization began to change in 1998, when the FDA approved the use of Herceptin for women with metastatic breast cancer that overproduces a protein called HER2. From that point on, all women with metastatic disease also had their tumors tested for their HER2 status. The biggest change, though, occurred in 2006, when the FDA approved the use of Herceptin in the adjuvant setting (after surgery) to reduce the risk of recurrence. With this development, pathologists began to test all tumors for their HER2 status in addition to their ER and PR status.

Gradually, over the past couple of years, instead of describing a tumor as ER negative, PR-negative, and HER2-negative, we began to use the shorthand term “triple negative.” This also resulted in a number of news stories about this “new” type of cancer. But it wasn’t really new. It’s just the use of Herceptin in the adjuvant setting led us to start thinking about these tumors in a new way.

I try not to think about the fact that she is quite right about Triple Negative’s uncanny ability to recur, and the fact that there are still no really effective treatments if it does. The good news is that I’m fully eight years out from date of diagnosis, come June of this year, which is well past the zone of highest probability of recurrence of two to three years out.

Another point worthy of mention is that although primary tumors may be Triple Negative in all ways, distant metastasis - such as lymph nodes- and I had three fully involved - may characterize differently, which is why I was later started on Tamoxifen for four years, and am now taking Arimidex. Both are the targeted therapies I referred to earlier.

As my Oncologist, Dr. Marjorie Green, at the Nellie B. Connally Breast Center at the Unversity of Texas, M. D. Anderson Cancer Center, said, “cancers are a diverse population, and may be quite different the further away from the primary tumor they are.” There is no one-kind of cancer, but rather many sub-types.

The takeaway here: You can’t take chances with half measures in Triple Negative breast cancer. You have to hit it and hit it hard to survive.

I’m living proof of that.

NOTE: 

You may wonder what may have ‘masked’ my breast cancer. Jennifer’s was masked by pregnancy. Not all breast cancers are ‘lumps’.

Mine was a lobular cancer, right in the middle of the breast behind the nipple.

A lobular cancer is rather like a round flat pancake, and due to having breasts that were very fibrocystic and extremely dense, the cancer was not felt. In fact, my doctor at that time didn’t even feel it, but got all excited over an inflammed duct in the opposite, healthy, breast.

Lobular cancer also doesn’t show up well under mammography. It only really shows up clearly with ultrasound, which begs the question of why are we doing more screening ultrasounds for woman with dense fibrocystic breasts.

Hmm. Could be an issue of money.