Sunday, February 15, 2015

Some steps forward, some steps back?

The phrase "___ steps forward, ___ steps back" changes for me nearly on a monthly basis.  Last month, with the discovery of breast cancer, I would have said "one giant step back."  But the surgery went well, I was in the hospital only one night, and the pathology results showed that the margins were clear with no sign of lymph node invasion.  

For those of you who speak Breast Cancer, I was triple negative for hormone receptors, meaning that chemotherapy would not give me a leg up on long term survival.  With radiation off the table, I don't need any additional treatment.  In my book, this is the best outcome I could have hoped for.  As I told my ACC friends, one less boob, one less cancer.  A few steps forward.  

Time to turn back to ACC and the ongoing game of whack-a mole.  I had a PET/CT here in NJ as part of my pre-op testing, and sent the scans to Dr.s Hong and Hales at Hopkins for their review. There were some wacky findings in wacky places, making it hard to come up with a clear plan of treatment.  We decided that I should come to Hopkins for consults and physical examinations of these wacky places.  

Both doctors are "happy" with the overall state of my lungs right now.  But their definition of "happy" is not the same as mine.  The "multiple bilateral pleural nodules" numbering anywhere between 8 and 20, depending on the accuracy of the scan, are either stable or growing slowly.  This means that treating them with RFA, cryoablation or radiation is not needed right now.  So is this a step forward or a step back?  I'm not sure where to put my foot.  "Just because a nodule might be big enough to treat doesn't mean we need to treat it now."  This goes completely against my OCD if-you-can-see-it-kill-it mentality.  The truth is, these nodules need to be monitored over time to make sure some aren't inflammation from prior treatment.  Also, I need time to rebuild my stamina between assaults, such as an out-of-nowhere mastectomy.

In the meantime, an area of cancer revealed itself in an area behind my left kidney and under my diaphragm, called the retrocrural space.  Apparently, this is soft tissue that holds the organs in the abdominal area together.  Seriously?  I have more cancer just randomly hanging out in the neighborhood of my diaphragm?  Because I have fairly serious scoliosis, it's hard to get a fix as to the boundaries of this thing.  Some of the area that is not "hot" on the scan could be muscle that is twisting around my spine to compensate for the scoliosis.  Because of this, we decided that Dr. Hong would cryoablate the smaller, more defined part that is clearly cancer, and wait to see how the rest of the area responds over time.  If necessary, Dr. Hales can radiate whatever is left that we can definitely determine is cancer rather than muscle.  Since ACC is a gland cancer, I asked if there are glands back in this area.  Basically, there are glands all over, and scans just can't illuminate if this is in a gland or not.  Metastatic disease sometimes shows up in lymph nodes in the retrocrural space.  Bottom line:  it's lighting up, it's growing faster than anything in my lungs, and it needs to be killed before it gets too big to ablate.  Is this many steps back or a small step forward if it turns out to be a smaller, treatable area?  

And if this isn't enough, I noticed a very sore area several months ago over my right kidney.  Eventually, a small bump appeared that is super duper sore.  This is the classic pattern of ACC if it's close enough to the surface to feel.  My radar went off because this is the place where I had a cryoablation for a kidney tumor two years ago.  When I showed the lump to Dr. Hales and Dr. Hong, they were perplexed.  It's exactly over the spot of the 2013 cryoablation.  It's hard to see on the scans, but it's there.  Sometimes there is a very small risk of cancer cells escaping when a biopsy is done or with a procedure that uses a needle to pierce a tumor.  It's called seeding.

This is a controversial topic in research circles.  Biopsies are a standard part of diagnostic medicine and the benefits far outweigh the risks.  But it happens every so often.  Because it's so unusual, Dr. Hong was reluctant to conclude that this lump is the result of seeding.  "How many ablations have you had and you've never had seeding?" he asked me.  "True, I've had 10 ablations, but they killed 25+ tumors.  If one tumor seeded, I wouldn't be shocked.  Plus, the kidney tumor was 5 cm. and took 4 needles to ablate."  There is no data on the rare occurrence of seeding on a rare disease like ACC, so we can't draw any conclusions.  Maybe it's just a random tumor in random tissue, like the mystery cancer near the left side of my diaphragm.  Who the hell knows?  

The question now is how to treat it.  Since this lump is so close to the surface, both RFA and cryoablation are too dangerous (several steps back).  So, Dr. Hong passed the ball to Dr. Hales and I'll be having a one shot dose of radiation to kill this wayward tumor using electrons rather than the usual photons, which is somehow safer.  Some steps forward, as long as it works.

We couldn't have come up with a plan for all this without me going to Baltimore on Friday to talk it out between the three of us.  It was pretty instructive to bounce theories off both doctors and talk about the pros and cons of each option as we went through the scans from head to thigh.  I'll be having the cryoablation to the weird space near my diaphragm on February 27th.  The one shot dose of radiation over my right kidney will be around March 9th.

Less than 3 weeks since the mastectomy, I'm pretty sore all over and wiped out.  I slept 13.5 hours yesterday and 11 last night.  As I hunker down till this freezing weather passes, it's hard to say whether or not I'm moving forward, backward or just treading water.  I just know that I'm happy to have a plan in place, that the breast cancer is under control and that I will still be able to move to Pittsburgh in the spring.  The most important thing right now is knowing that I'm in good hands -- from my medical team to my local and long distance friends to Mary, who is acting as my apartment scout in Pittsburgh.  Rather than looking from month to month, it seems I'm making progress from year to year.  The key is to face forward and hang on tight.  My feet will land where they are meant to land, even if there's a step back every now and then.