When you think you are doing everything right...

I have a seasonal dysfunction every spring: too much in my head to draw out complete, concise thoughts on paper. I write this Tuesday evening in the library. After an hour of trying to collect current thoughts, I’ve decided to send this to you. I wrote it last September and stashed it. When I uncovered it this evening, the brittle emotions had worn off enough so that I can send it to you.

I don’t often refer back to the breast cancer days, but this is important stuff you should know about.

September 22, 2016

When you are doing everything right...

I went to bed last night thinking about my friend who is scheduled to have a mastectomy today. I woke up thinking about her this morning – and praying that the cancer was only in the breast and that it hadn’t traveled to any lymph nodes.

Our lymph node system is like an interstate highway carrying and dispersing liquids throughout our bodies. And if a little cancer cell gets caught on an on-ramp, whoosh, there it goes: out of its local area, gradually making its way out and crossing borders. Then, the chemotherapy police are called to seek out the cells and blast them.

Before I had my lumpectomy in 2009, my surgeon ordered a biopsy of my first lymph node: the sentinel node. It came back positive for cancer, so when I had the lumpectomy, the surgeon took eight lymph nodes out from under my arm. One fell swoop to hopefully scoop out any neighbors that might also be harboring cancer cells. Only the sentinel node was found to be guilty.

My friend and I were both diagnosed with Invasive Ductal Carcinoma, but different formations that called for different treatments for each of us. Mine was one smallish tumor with another small satellite tumor, and cancer cells had broken off and headed for an on-ramp. Thankfully, it was only found in one lymph node, but because it had escaped, the big guns were called in.

Chemo rushed around through my body for 16 weeks looking for breast cancer cells. Then, 6-weeks of radiation to quell any cancer activity in that breast. Consequently, my left side looks like I’ve been through a radioactive battle marked by four green tattoo dots. My breast is still intact, but smaller on that side and the skin is a different hue: a ghostly-white with a ghostly-green-ish tint. I didn’t have a mastectomy, but I do have remnants of a tiny, purposeful Chernobyl.

September 24, 2016

My friend has a major recovery ahead of her as tissue heals and reconstructive processes proceed, but her lymph nodes were clear. The “what next” for her will be ironed out in the coming days. Hopefully, since the nodes were clear, no chemo will be necessary.

Today, I had my seven-year checkup with my breast surgeon to go over mammogram results from last week. This time I stayed calm the seven days between the mammogram and the appointment. I didn’t get a call back to have another mammogram, so I was confident there would be no news. After the last MRI in the spring, a change in my right breast resulted in an MRI guided biopsy. It came back clear. I didn’t need news like that again, but I knew the chance of seeing anything new on a mammogram was slim for me.

At the office today, my surgeon was late returning from the Breast Center where she was doing procedures. After waiting 15 minutes, I agreed to see the nurse practitioner, and after, “Wow, you are getting out there! Seven years!?!?” she confirmed all was good with my mammogram. Next step: an MRI in six months. I’m on the 6-month alternating plan between MRIs and mammograms – and probably will be for life.

Then, she asked if I had received the letter from the radiologist about dense breasts. When I said I hadn’t, she left to get me a Dense Breast information brochure. I didn’t need the brochure; I know I have dense breasts. I knew that’s why I had to have chemo.

On mammograms, dense breasts appear clouded with white mass. Breast cancer also shows up as white on mammograms. If a woman doesn’t have dense breasts, breast cancer is easy to spot: it’s a white spot on an otherwise mostly black x-ray. However, 40 - 50% of women DO have dense breasts and for them finding cancer on a mammogram is like looking for a teaspoon of vanilla ice cream with flecks of vanilla beans inside a gallon of regular vanilla ice cream. When she returned and started to explain this, I had to let her know. “I know all of this. I know I’m an MRI girl.”

“Well, now the state of Massachusetts has passed a law requiring radiologists to notify women if they have dense breasts; to let them know that the risk of undetected breast cancer in a mammogram is higher than those women whose breasts are not dense.”

I sat stunned letting this information soak in. There is now a law to inform and protect MRI girls in Massachusetts!?!?

Over half of the states now have these laws in effect. For my Midwest friends, Iowa and Illinois are in the process of creating similar laws, but Wisconsin has taken no action. [Check out your state on this map from DigitalImaging.com](http://www.diagnosticimaging.com/breast-imaging/breast-density-notification-laws-state-interactive-map).

I think that if my friend and I were identified as MRI girls years ago, our lives would be very different now. She wouldn’t be lying in recovery waiting for her body to mend. I wouldn’t be feeling the effects of early-menopause thanks to the year of aggressive treatment, and now the 10-year treatment plan for breast cancer. Much would be different. I am thankful for life, but I want the lives of generations ahead to benefit from the knowledge that I didn’t have. My friend and I thought we were doing everything right with annual mammograms.

This is an excerpt from the letter I found in the mailbox when I got home from my check-up:

“Massachusetts law requires any patient whose recent mammogram shows dense breasts to receive more information about what that means and where to find answers to additional questions.

“Your mammogram report describes your breasts as being dense. This means that there is more fibrous and glandular tissue in your breasts than there is fatty tissue. This is a normal pattern that is seen in 40 - 50% of women. While dense breast tissue is a common and normal finding on a mammogram, it may limit our ability to detect breast cancer and may indicate an increased risk of breast cancer. However, it is important to know that having dense breasts is not abnormal.

“You may want to make an appointment with your referring clinician to discuss your test results. Your provider considers several risk factors such as family history and results of prior breast biopsies before determining if additional screening should occur.”

Indeed, if you are an MRI Girl, you have a right to know.

For near-future generations, this could be a huge part of early detection, leading to fewer intrusive treatments, and fewer breast amputations.


Today, on the upside… My friend had chemo but is now done with treatment and is doing very well. And, I just had my 8-year all-clear check with my oncologist – which makes for a very Happy Hump Day!