The Hill Becomes a Mountain........

12/4/12--Tuesday--Day 52--Shock and Disbelief, Yet Again

So as much as I was trying NOT to count down to my Thursday post-op doctor's appointment, I was shocked to get a call at lunch today from the doctor's office.  I had returned to work after staying busy at home most of yesterday and feeling fine.  The morning was busy with activity and my mind was focused.  As I drove out of the parking lot to go home for lunch, my phone rang. "Blocked" told me it was probably the Cancer Center checking on me.  Sure enough, it was Melissa, Dr. Byrum's assistant.

At first I thought it was just a standard post-op check as she asked how I was feeling, how were the incisions, etc., but then she said she had the pathology report.  I stopped breathing for just a second.  She confirmed what we knew, the mass was larger than expected, but then delivered the great news--the margins all came back completely clear--the areas that were taken all around the mass were cancer free--Dr. Byrum had cut everything out.  Hallelujah!  My heart jumped.  "Oh my gosh!  That is great new!" I said and Melissa, in her overly optimistic way completely concurred, "That is wonderful news!"  Still in her positive, upbeat tone of voice, Melissa then explained the report also showed the cancer was micro-invasive, but in a very minut way.  "The micro-invasion on one of the lymph nodes was just a microscopic speck.  Basically there are a few cells in one of the nodes that tested positive for cancer," she said.  But then she quickly explained that it was a new, very finite test that picks up these microscopic details.  A year ago before this test, my node would have tested negative with no invasion at all, but this new test just picked up more microscopic cell detail.  "So what does that mean?  What's next?" I asked her.  She said that they may choose to run further tests on the sample, one particularly.  They couldn't run that one until 14 days after surgery, but it would come back with a percentage of how likely it would be for the cancer to come back.  She said then I would sit with an oncologist who would recommend the best course of action based on that percentage chance of reoccurrence   Melissa assured me that this is all pretty good news and not to worry.

Half way through the conversation I had walked in the door at home.  Greg was sitting on the couch waiting for me to finish and give him the update, which I did.  He was devastated.  I was surprised by his reaction.  "This is not bad.  It just means we have a little more waiting.  We should be happy that the margins were clear," I said.  "Basically," I explained to him, "we have moved from the best case scenario--surgery, radiation, 5-year pill--to needing to have another test and have the oncologist recommend additional treatment if necessary based on the results of another report.  No big deal!"

We ate lunch and I headed back to work.  My head was spinning because Melissa had said a lot of things so I was trying to sort it all out and remember it all.  I decided to call my friend Charlene, the one who originally helped me understand the very first pathology report.  As I talked with her, she was able to take the bits and pieces of information from Melissa and construct them into a much clearer picture for me.  Okay, it made sense.  Basically it was micro-invasive so instead of being in the best case scenario, we were now in a bit of gray area until an oncologist got involved and one more report came in, but it was still sounding very positive.

I quickly updated my team about receiving the results and we all were exited about the clear margins.  Even though there was now a little more unclearness, the positive still overpowered the doubt.  I also updated my boss and Henry, trying to be optimistic about the good news of clear margins.

And then, once again, the bottom fell out of my world.  The phone rang as I was walking out of Henry's office. "Blocked" once again told me to take the call.  This time it was Dr. Byrum.  She explained that she had been in surgery all day but she wanted to call me because Melissa may not have read the report correctly and may have given me incorrect information.  She said she had been looking at the report for the last hour and had been on the phone talking to the pathologists.  The cancer was just presenting itself as something completely different than what was expected.  She was surprised at what she found during surgery, and now even more surprised by the pathology report.  She expected it to be mostly DCIS (Ductal Carcinoma In Situ)--the original diagnosis from the biopsy, with possibly some micro-invasion.  Instead, a majority of the mass was invasive, not micro-invasive, but invasive.  In addition, the lymph nodes was not micro-invasive, but actually had metastasized into a one centimeter tumor.  Basically the cancer had now moved to a different body part.

I kept listening trying to make sense out of what she was saying.  I was about to ask for clarification when she said, "I want to present your case to the Tumor Board next Thursday."  I had heard of tumor boards from my friend Trina as well as Charlene.  Why was she talking about my case going before a tumor board?  I have DCIS.  I have a cancer that some even called pre-cancer.  We caught it early, remember.  Wait a minute.  What is she saying?  What's going on?  My head was spinning.

As politely as I could, I told her I was confused.  She began patiently explaining it again.  She expected the mass to be "patchy", but patchy with DCIS.  Instead, the mass was patchy with a majority of the it being metastasized into an invasive disease.  In addition, it now was not just in my breast, but in one of my lymph nodes.  "At this time, I can't say that you won't have to have more surgery.  We may have to go back in and take additional lymph nodes or possibly even all of your lymph nodes."  She explained that there are about 17 lymph nodes and that they try not to have to do that surgery because a third of the patients end up with lymphedema, which is a swelling of the arm.  Then, she said the worst.  "You will have to have chemo now; that's a given."  I swallowed hard.  I didn't know what to say--what question to ask.  "Will the chemo be before or after the radiation?"  "Before."  "And how much chemo?" "Six months."  Wow.  It wasn't best case scenario, it wasn't questionable, gray area, it was the worse case scenario I had imagined.  Granted, it wasn't the worst possible situation--I wasn't dying--that I knew of anyway--but is was the least desirable outcome I had let myself imagine.  Chemo for six months!  She explained there would be a 3-4 week break after the chemo and then I would have to do the six weeks of daily radiation.  "I know this is a stupid question, but are there different levels or strengths of radiation?  Will I lose my hair?"  "It's not a stupid question.  You're the second person today who asked me if that was a stupid question.  It's not stupid, but yes, I'm afraid the answer is you will lose your hair."

I was sitting at my desk trying not to well up with tears.  Carol was there and had picked up on the information not being good.  I could read the sadness on her face.  Since I was recovering from the surgery without issue, Dr. Byrum suggested we cancel Thursday's appointment and reschedule for next Thursday after the Tumor Board meeting.  "I'll have more information for you then."  I agreed.  It only made sense.  Besides, there was really nothing we were waiting on now.  I would have chemo.  I would have radiation.  The cancer is invasive.  The cancer has spread.   It was only that very first Friday night sitting in the parking lot of the doctor's office after hearing the news that I had cancer had I been this shocked and full of disbelief.