Always be your own best advocate

One day I want to share publicly the story of how I was lead to a cancer diagnosis. Many of you don’t know that when the tumor was first discovered on a CT in the ER, the attending doctor thought it may just be a shadow, no need to worry.  Overnight, the next attending viewed the same scans and ordered a needle core biopsy.  Four days later I was told that the mass was benign.  Had it not been for yet another doctors opinion to send me to a surgeon at Shand’s, who knows where I would be today.  

Now, over a year later, I still insist on getting answers when I feel something is not right.  And if that means going to get a second, third, or even fourth opinion, then you do whatever it takes to get a definitive answer or plan of action.  

January 6, 2017 shook my world.  Being told that your scans had significantly gotten worse, and that it appears as if your cancer is progressing and presenting as being refractory (meaning not responding to treatment) is downright terrifying.  After being told this news, the doctor said to be certain he was going to send me over to IR to have a needle core biopsy done.  I immediately questioned this.  I had been told previously not once, but twice by two different doctors that this method of biopsy is not a reliable method of confirming lymphoma.  My doctor then agreed to send me back to the thoracic surgery department at Shands.  Why am I having to be the one calling the shots?

Three weeks later I was being admitted for a surgical procedure known as “VATS”.  Three incisions to the side of the chest, and waking up with a chest tube in the right side of my rib cage.  The surgeon removed two lymph nodes to send to pathology.  Five days later I’m blowing up the phone lines to my oncologist as well as my surgeons office to get my results. You know who calls me?  One of the nurses.  And all she says is your pathology came back as cancer free.  I burst into tears.  And then the questions start rolling through my head.  “How is his possible?”  “Are you sure you have the right chart?”  “My name is Ashly Greene, DOB…”  

“Ma’am,” she interrupts me, “this is good news.”  I told her I just had too many questions and I needed to speak to my doctor as soon as possible.  A couple hours later he calls and confirms the results and nonchalantly says, “well the only way we can be sure would be to biopsy the other areas, but I feel as if we can just wait and repeat the scans in three months.”  PERFECT.  “So, I can cancel my bone marrow transplant consult tomorrow?!!”  “No,” he says, “you need to keep that appointment just to be established with them on the chance we need them in the future.”  GREAT.  

And here’s when I post my video of absolute and sheer joy.  I don’t think I stopped crying off and on the entire day.  My husband was nearly brought to tears when I told him.  I hadn’t seen him that happy and that relieved in a long time.  That is what made this next part such a hard pill to swallow.  Hadn’t we had enough let downs and disappointments?

Fast forward to the following day and here’s where the reality begins to sink in.  Here’s where I begin to question what I heard and what I thought those results meant.  I thought it meant I was in remission.  I thought it meant I was in the clear for at least three more months.  The transplant doctor tells me he’s not convinced either way.  He’s not convinced I don’t have refractory Hodgkin’s, nor is he convinced that I do.  “Ok, but I thought the report said cancer free?”  “Yes,” he said, “but those are two very small pieces of the puzzle.  They didn’t biopsy the new growth or some of the other areas to be certain.”  I was also told that although there was no evidence of cancer in those nodes, the pathology still came back abnormal: significant granulomatous changes with focal areas of necrosis.  

And no, this is not a result of the damages from chemo because they have record of this in some of my nodes when I was first diagnosed with Hodgkin’s.  What that means?  It is either my body’s immune response to active cancer SOMEWHERE, or, a separate inflammatory disease all together.  CRAP.  This isn’t over.  Oh and to top off my wonderful day at the bone marrow transplant unit, I was also told that if my cancer does in fact prove to be the refractory type as they suspect, there’s only a 50% 8 year survival rate with salvage chemo followed by a stem cell transplant.  PERFECT.  Just what I wanted the hear.  I left there with them putting me on “deferment”.  Nothing scheduled now, but a possibility in the near future.

I was so upset and frustrated that I requested for my surgeon to call me.  When we connected over the phone, I asked him why he didn’t take from more areas.  His first response was, “we didn’t expect these results.”  Meaning him or my doctor.  But honestly, is that how you should approach any relapse/refractory/staging biopsy.  I only consented to this surgery being done for a second time because I believed it would be the most thorough approach at getting a clear picture of what was going on.  Yes, it was still good news.  And yes, he did what he felt was best and safest.  However, I just feel as if my oncologist and surgeon should have been working together on what areas to biopsy for conclusive results.

After processing this information for a couple days, something in my gut didn’t feel right.  I was feeling very unsettled.  That’s when I called down to my second opinion hematologist whom I saw back in November.  They agreed to see us right away.  Finally, someone was pushing for answers.  Finally, someone wasn’t going to accept just going for the “easiest” areas to biopsy.  Finally, someone was going to insist on taking sample of the biggest and most problematic areas on my PET and CT.  Finally, I wasn’t having to be on my own as a patient advocate fighting for a definitive YES or NO to the question: Do I still have cancer?

Next Wednesday I will meet with a thoracic oncology surgeon at Moffitt Cancer Center to schedule what is hopefully my last surgery, for a while at least.