Monday, October 24, 2016

5089 Medical progress, start chemo

Monday, October 27, 2016

Rita Rudner: "Men don't live like humans. They live like bears with furniture"


Over the past few decades, breast cancer survival rates have been improving due to earlier detection (better mammogram technology) and targeted therapies.   When my core biopsy was examined by the lab, they said the cells showed 60% estrogen receptors (and 0% progesterone and HER2).  Everyone who saw that said, "Oh, that;s very good!", because that meant that that targeting the estrogen receptors would work.  That's targeted therapy.

When you last heard from me  on this topic, we were anxiously awaiting the Oncotype DX results.  The medical oncologist had said that we would definitely be doing the estrogen receptor blocking, and would likely do radiation, but whether I needed chemotherapy or not would depend on my Oncotype score.  If it was low, no chemo.  High, definite chemo.  In the middle, "We'll talk."

So, we got the report.

The scores on the chart went from  0 to 50.

I scored 57.  Off the chart.


While we were talking and he was making chemo noises, I happened to notice something odd on the report.  In the fine print it said that "this sample" had 0% estrogen receptors.  I pointed it out to him, and he made some noises about how "their lab isn't certified" or some other term that seemed to imply that I should ignore what it said.  It was more than obvious that he'd have preferred I hadn't noticed that.

I wouldn't let go, especially given that the report was ABOUT the effectiveness of estrogen receptor targeting, and I asked how believable ANY lab report was, and finally he admitted that after he saw that, he'd had the hospital lab run tests on my post-surgery tumor, and their results were also 0% estrogen receptors.  Note that the core biopsy, one month before surgery, showed 60% estrogen.  That's a big difference.

It appears that I now have what is called "triple negative" breast cancer (TNBC), which means there is no targeted therapy for it.

I am incredibly angry.  If the initial core biopsy had shown TNBC, then I would have had chemo before surgery, which studies have shown that to vastly improve the prognosis.  Too late now.  The prognosis for TNBC is miserable.  Don't bother looking it up.

So, did someone screw up?  Was it a mixed tumor and different slices showed different characteristics?  Did they mix up my results with someone elses?  (Shades of 2012 when a hospital mixed my records up with a heart patient, and I was being treated for conditions I didn't have.  Now I was not treated for a condition I do have!)  Did the tumor really change so drastically in one month, while having shown no growth during that period? 

So, I have an extremely aggressive tumor (scoring 8/8).  Targeted therapy seems a vague hope.  The only good news is that it was found at an early stage (T2a)  and there was no node involvement (assuming I can believe the lab).

Immediately after that meeting with the oncologist, I was scheduled for a chest port, but I had a head cold and so much post-nasal congestion I couldn't control the coughing, so there was a last-minute decision to install a PICC instead.  That's an IV hookup that enters a vein in the inside of my upper arm and travels to just before the heart.  Not pretty.  Can't get the dangly parts wet, so rather interesting to bathe.

The next day we started chemo.

Now, I had been told I had a very treatable cancer.  Then I find out that's not true.  
I had been told I wouldn't need an IV to get the port installed.  That wasn't true.  
Then I was told I'd have four rounds of chemo.  That became six.  
I was told I'd have one "push" med on day one, one on day two, and then one oral spread out over two weeks.  That wasn't true.  I'd be getting all three on day one.  
 Then I found out I had to go in again the day after infusion to get a shot for boosting my immune system.  
All of this jerking around in the space of three days.  I no longer knew what to believe.

So that day, September 20, when I started chemo, when I got more of the "different" info, I confess I freaked.  I insisted that I was NOT supposed to get all three at once, that one of them was supposed to be oral, this was not at ALL what I had been told, I had done the research on those meds and the oral version of that stuff was supposed to be much better tolerated   ----

Long story short, I threw a very uncharacteristic fit in the infusion room in front of a dozen other patients ensconced in recliners.  The nurses packed me off to the oncologist in a hurry, where I told him what he had told me, he agreed that's what he told me, and then he and the onco-nurse got into a huge fight in front of ME where she told him he had it wrong, that's not the way they do it, their procedure is blah blah, complete with her slapping the calendar on the wall.

The upshot was that I got my three infusions in a private room. Keep the crazy lady isolated.  Round 1.  I'm not sure who won, but it wasn't me.  The onco-nurse hasn't spoken to me (or looked directly at me) since then.

Bedtime.  I'll finish this tomorrow.

1 comment:

the queen said...

Oh, that sounds like the very worst. I'm so sorry. Especially having to trust untrustworthy people.