Friday, August 26, 2016

5083 Still no idea what's going on

Friday, August 26, 2016

"Those who can make you believe absurdities,can make you commit atrocities" 
– Voltaire AKA François-Marie Arouet --


Last week I saw the medical oncologist, but didn't learn a whole lot, except that we don't know much of anything until we get the Oncotype DX results.  I mentioned that I had no idea when the radiation was supposed to start, so he set up an appointment for me with the radiation oncologist, whom I saw yesterday.  Again, I didn't learn a whole lot.  One important thing is that they will do my radiation prone, the "drop the breast through the hole" position, so there is almost no chance of messing with heart and lungs.

I was under the impression that the radiation would be definite, and before any other treatments, but again, they're waiting for the Oncotype DX results.

If I need chemo, this group likes to do it before radiation.  We won't know whether chemo is advised until ... guess what.  And that might be another week.  Or two.  Or more.
So, chemo if required (and if I decide to accept it - I may not), then radiation, then the hormone stuff.   (Calling it hormone treatment is a misnomer, because they wouldn't actually be giving me hormones.  It's an estrogen blocker, blocks the receptors on cells.  Big deal.  It's still treating hormones as far as I'm concerned.  Menopause is a hormone issue, right?  With menopause you stop producing so much, and with the blocker you can't use what little you've got left.  Same kind of thing.  So there!)

So here I sit.  I can't make any plans for the next many many months because I don't know what will be happening when.
The medical oncologist  said that the estrogen blocker he'd want to use is called Femara (Letrozole).  So I did some research.  Apparently there are three blockers out there, and this is the one with the mildest side effects.  

Oh.  My.  God!

If this is the mildest, I'd hate to even contemplate the others.  Want to scare yourself?  Check out the user reviews on or  
Side effects include severe bone pain, joint pain, weight gain, insomnia, spontaneous bone fractures, headaches, ... to list a few.  

Yeah, some people it will affect more than others, so I sorted the reviews to see the positive ones.  They listed joint pain, bone pain, headache ....
Oh dear. If this is on top of my fibro, oh dear. On the other hand, it's possible it's no more pain that I usually experience, just in different places. These women might think it's so awful because they so seldom experience random pain, so maybe I'm conditioned to pain enough to just pass it off.

But really, I'd rather not have to find out.

The worst part is that you will be on this poison for YEARS!

You know all those women who go off to Europe or Mexico, or to fringe nutritionists, to get alternative treatments?  Now I know why.  Sometimes the price of continuing to breathe just is just too high.


Philosophical musings:

My theory is that everyone "has cancer" multiple times in their lives.  A cell somewhere goes rogue and doesn't behave as it should.  But the immune system recognizes it as "not mine" and kills it and its progeny very quickly, and you never knew it was there.  Only when the immune system does not recognize that there's something wrong, when the rogue cells somehow escape detection, does the person "Have Cancer".

Right now we attempt to excise and kill off rogue cells with poisons.  It's all we've got.  But in doing so, we also damage the immune system.  That seems counter intuitive.

It seems to me that we should perhaps be looking closely at what allows the rogues to escape detection, and attack that.  Looking at how to energize and direct the immune system.  (That's the clinical trial Jay was enrolled in, and it was sort of crudely working when he died, but it was so experimental that he wasn't allowed to enroll until he was so damaged by all his earlier treatments that his organs simply gave up.  He couldn't survive long enough to see success.)

So it bothers me a little bit that all the treatments planned for me are concentrating on the precise characteristics of THIS tumor.  It has been excised, wide excision with clean margins, and there has been no signs of metastasis.   Maybe we should ask why the immune system didn't detect it, and fix that?  Why do we assume that a recurrence would be the same tumor (progeny, escaped cells), and not a brand new tumor with different characteristics?  If this tumor is estrogen positive, then it makes sense for an estrogen blocker to prevent the growth of "children" of this tumor (although from what they're saying, there shouldn't be any), but why do we assume all future tumors would follow the same rules?  If they're thinking I could throw another tumor in this or the other breast, maybe we should look at why tumors got started in the first place, and why the immune system missed it, and attack that issue instead?

I'm just wondering.


the queen said...

Keep breathing! Don't stop no matter what it costs!

~~Silk said...

Some of the women talking about the Femara actually said they were considering going off it, and if they then die, well, that's better than the Femara. At least they'd get to live a little before dying. On the Femara, they felt they may as well be dead.

Back when I was trying to talk the doctors into a double mastectomy, they just poo-poo'd my complaints of back and shoulder pain. At one point, I was almost crying when I said to one doctor that I figure I have maybe 15 years left, and I would be so so very very happy if I could experience those years pain-free. He looked at me like I was crazy.