Cancer: How Did I Get Here?

Ok, I know this is not my best look.

Later I found out that I had a substantial dreadlock in the back of my head, adding insult to injury for the above photo.

I also took a moment to toss this on the way home from the hospital:

But let’s back up a bit.

December 10, 2018: Routine screening mammogram = Read as normal

December 18, 2019: Routine screening mammogram = Read as abnormal

The picture above was taken at Christmas 2019, when I knew the mammogram report wasn’t normal but I didn’t yet know why. I got a call a few days before Christmas that the radiologist needed to compare the recent images to old ones, then a call on December 26th that I would need to come in for more images and possibly a biopsy.

With the holidays in full swing, I had to wait until January 2nd. I would have gone the same day if I could have.

I returned to the radiology imaging center and for the first time, I learned that there were two areas of concern, one on the right and one on the left.

The technicians pointed out what they were observing. The left side showed a scattering of what looked like seven grains of salt – tiny calcifications – on an otherwise dark background.

The right was different. I could see that there was a larger area and it was right up against my chest wall. This scared me, both in size and location. It looked like it would be difficult to access and seemed like it could easily spread into the underlying muscle.

After about 45 minutes of additional images, I was advised that I would be getting an ultrasound of the worrisome area on the right.

The ultrasound technician started the scan on the right and immediately I could see it was a cyst. It was smooth, like a jelly bean, and had clear fluid within it. Although breast imaging is not my specialty, nearly 20 years of performing OBGYN ultrasounds has made me capable of identifying a cyst. I knew this was benign and that was a relief.

The left side was another story.

The small area of calcifications – those seven grains of salt – could signal cancer and I was advised that I should get a biopsy. I was offered to have it done on the spot or to make an appointment and return.

I wanted the answers now.

The biopsy was a more complicated process than I expected. There were parts that reminded me of doing an OBGYN procedure called a D&C, one I have done hundreds of times, where a thin tube with suction attached takes pieces of tissue and collects them in a small filtered container. The tissue pieces have to be X-rayed to ensure the calcifications are present in the sample (parallel to floating products to my OBGYN friends), and if the sample seems sufficient, a pressure dressing is applied.

And then you wait.

The radiologist who did the biopsy – and she was very lovely and professional; when she walked into the room I knew I was in good hands – called me the next afternoon and asked if I’d already received the report.

I had not.

Her message was very simple: “I’m sorry to tell you that this is an invasive cancer.”

I had to write it down. I didn’t trust myself to remember.

And then I had to hold it together to see a few more patients before I could go home and totally fall apart.

The next two weeks had a flurry of appointments: MRI, pre-op exam, meeting with a breast surgeon, meeting with a plastic surgeon, getting fitted for mastectomy garments (truly awful, and I hope you never have to wear them), etc.

The wait to surgery was excruciating. I spent my time walking on the treadmill at the gym every day for up to three hours, just to escape my brain. Even though I was told it wasn’t necessary, I stopped drinking all alcohol because it seemed like I could go to a melancholy place if I had it on board. I’ve never taken medications like Valium or Ambien so I also didn’t have these crutches. I only mention this because in general, I think I have pretty good coping skills and my career involves having difficult conversations every day, and if I was mightily struggling during this time, I don’t know how others do it. I hope that comes out the right way.

Because it seemed like the cancer was now just on the left side, I was offered a few options: a lumpectomy on the left PLUS several weeks of radiation to the remaining breast and armpit area, a mastectomy on the left or a bilateral mastectomy.

This is the point where I am obliged to say that every patient is different and everyone should make the choice that is right for their situation, but I knew that for me, nothing short of the double mastectomy would suffice.

One reason for this decision was due to recurrence risk: I was advised that if I did anything short of a double mastectomy, I would enter into a complex screening algorithm for surveillance of recurrence or a new breast cancer, and that my risk was 2% per year, or 50% over 25 years.

Another thing that everyone was very clear about: the type of surgery selected does not reduce the risk of dying from breast cancer. A double mastectomy will reduce future recurrence risk but will not save your life over a less aggressive approach. This is scary.

But here’s the real reason I chose what I did: Regret management.

I talk to patients about Regret Management All. The. Time.

Regret management is making a decision now to (hopefully) mitigate future feelings of not doing enough when the opportunity was there. In my work, it usually translates to patients trying IVF or continuing with ongoing fertility treatments before the proverbial clock runs out.

For me, I am far from feeling like I am done living, and I felt like I needed to do everything I could right now in the most aggressive way possible.

Although it felt like a million miles away, the surgery date eventually came: February 13th. I had an all female physician team: breast surgeon, plastic surgeon and anesthesiologist. Of course I loved this.

My overnight hospital stay was uneventful and I was home by noon the following day. I was told things went well, but the final pathology report is still pending and I will learn the stage and what comes next in the upcoming weeks.

^^^^ Also not my best look but I am home.

Early recovery has been … ok … I guess. The pain is more robust than I thought. I tried to avoid taking any prescription pain meds but woke up at 4 AM on Saturday in so much pain that I could not move. I had to rethink my decision for Ibuprofen-only.

Recovering from a mastectomy also has many limitations: you cannot raise your arms above your head, no lifting greater than 15 pounds, and there are two drains – one on each side – that are sewn into place but have to be cautiously avoided for tugging/pulling and must be emptied several times a day. This also translates to not being able to get a coffee mug down from the cupboard, washing your hair, driving, etc. It is strange to be so restricted.

The drains will remain in my sides until the output is low for two days straight. This usually takes a few weeks and means I am wearing my terrible mastectomy garments (which have convenient pockets for holding the drains) until then. I criticize them for their lack of fashion but they are really necessary and I am grateful for a friend who sent me one to wear. Having said that, I never want to see these again when this is all said and done.

A final comment: I had a nice sob in the middle of the night the first time I caught a glimpse of my body, which seemed very disfigured. Intellectually, I know this is far from the final product (I got temporary expanders placed in the OR), but the reality sunk in when I looked into the mirror. I am grateful for my skilled and artistic plastic surgeon, who is also a friend, and I know everything will turn out ok in the end but we are not there yet. The breast surgeon is new to me but also extremely cool, someone I could see myself being friends with, and she did an excellent job, too. I really hope the three of us can laugh over drinks sometime. My debt to these skilled women is huge.

For now, I continue to recover, physically and emotionally. I appreciate everyone’s kind words, friendship and support.

3 thoughts on “Cancer: How Did I Get Here?

  1. Jani,
    You are the most Beautiful Soul !
    Thank you for sharing your cancer journey with us.
    May your recovery be successful & swift.
    We think of you often!

  2. My friend! Your strength and courage is amazing! Sending big Texas hugs to you! Again, thank you for sharing this chapter of your life! Xoxo JD

  3. I keep up with your blog, Jani, because I enjoy your wit, phrasing, and glimpse into your life. I am so sorry to hear this news. I will keep you, Maxwell, Beatrix, and Tony in my thoughts, and pray for a smooth recovery. ❤️ Kate

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