Friday, March 6, 2009

Doctor, Doctor - Give Me The News....

I went to the doctor for my regular monthly follow-up a couple of weeks ago, and based on some on-going pain issues with muscle cramping and generally not feeling well, he ordered a PET/CT scan, which I had last Thursday. I always have blood work done at these monthly visits: a CBC which measure red and white blood cell components, a chem panel which measures level of everything else in the blood (vitamins, sugar, minerals, etc.), and a CA 27-29 which is a specific test to measure enzymes in the blood formed from active breast cancer (referred to as a tumor marker test). A tumor marker test by itself is really of no value, but combined with other tests can be a good indicator of cancer activity. A normal 27-29 is 0-40, at the high point mine was somewhere near 500, but generally rests between 160 and 180. I have been steadily increasing over the past year and now sit at about 270. My markers have been going up slowly so we've been using hormonal therapy (not HRT) to shut down estrogen production. There are several different oral drugs available for this protocol, and as of now I have used them all LOL. Unfortunately, they have now all failed and I've exhausted that course of treatment.

Let me back up a little...breast cancer is either estrogen positive or negative, progesterone positive or negative, and HER2Neu positive or negative (this is another hormone). My cancer is estrogen and progesterone positive, HER2 negative. This means the cancer feeds on estrogen and it is critical to halt estrogen production in order to slow the growth of the cancer. My initial chemotherapy threw me into menopause (at 41!!) and I've stayed there, so I was able to take post-menopausal estrogen inhibitors to reduce whatever estrogen was being produced by the pituitary glands and wherever else might be still produced elsewhere. Anyway, after going through all the different variances of inhibitors, I reached the end of the list. That happens when the cancer continues to metastasize while you are on hormone therapy - if the cancer is spreading the meds aren't working. Hopefully that makes sense enough in why this is a treatment option after chemo. How long hormone therapy works and which ones works varies so much from person to person it's impossible to know how long one can stay on this treatment and how effective it will be for any given length of time. Now you have some background, back to the test results....

So I saw the doctor yesterday, and the PET scan showed some growth of bone mets (mets = metastasis = spreading) again in the sacrum (base of the spine) and iliac (pelvic bone), which had previously been treated with radiation, but they're back . Explains my back pain, anyway! Also increased mets to the lung pleura (this is the area between the chest wall and the lung that allows the lung to expand and take in oxygen). The cancer spread to the pleura back in 2005 and I went through several procedures, including 2 surgeries, to close off the pleura so the cancer wouldn't break through into the lung itself or other surrounding tissue. It has stayed contained but continues to grow within the pleura. Anyway, radiation and surgery scarred and damaged my lung so the right side operated at about 40%. A couple of new spots showed up behind the bladder but we're not convinced this is cancer. The scan report identifies them as polyps and I'm inclined to agree based on all my other tests so far. I have a PET scan every 3-4 months so we'll see what shows up on the next one.

Overall, this is much better news than I was expecting. I have been feeling very poorly for the past month or so, and have an increase in body cramping and pain. Now I'm not talking about a little cramp that you can rub out - I get cramps so sudden and severe in my feet, ankles, legs, hands, ribcage, and back that I cannot stand, speak, or breath! My hand cramps up now just brushing my teeth! Last month's chem panel showed a low level of potassium so I'm on prescription level supplements to bring that up and hopefully relieve some of the more severe cramping. I've been through a lot and have a VERY high tolerance for pain, but I gotta tell ya, I was in tears at 2:30 this morning with these cramps :(

Oh, almost forgot - I have a bronchial infection and ear infection - OMGosh - I thought ear infections were for kids!!!

I had another set of blood tests yesterday and based on those results (which I should have on Tuesday) I have a couple of options, and I will be praying for guidance over the next several days:

1. Do nothing. Continue taking potassium but stop hormonal therapy. Rescan in 3 months and see what's happening.
2. Radiate bone mets to relieve pain, and do nothing (see 1. above lol). This really isn't an option I'm considering, the pain from the mets isn't that bad and isn't constant. Very tolerable compared to effects of radiation.
3. Start chemo now, rescan in 3 months to evaluate.

Here are my initial thoughts: if my 27-29 comes back considerably higher, i.e., a bigger jump than I've had in the last 6 months, then let's start chemo now. If 27-29 is stable or increasing just 10-15 points, let's wait until my infections are cleared up - maybe start in a month or 2. Ideally, I'd like to wait until the girls are out of school so I don't have the added stress of getting Sami to school 16 miles north, then down to the hospital from there - 35 miles south, having a 2.5 hours chemo session, and getting back to pick her up on time. Even though it would be only once a week, it makes for a very difficult day. I guess what I'm thinking then is I would like a break from all things cancer for a couple of months! We'll see what comes back from the lab and go from there. I'm pretty much prepared for what comes and already had this working in the back of head because the doc and I have talked about it during my appointments since November. We knew it was coming at some point so I've been working hard to get the house in order and the freezer stocked with cooked meals so I was ready and I'm almost there (hmmm maybe that's the real reason I want a couple of months lol).

So that's it - another twist in the road, but not a blind turn so I'm okay with it. The good news is that at 5+ years out from initial treatment I still have absolutely no mets to my organs and that bodes well for me and speaks volumes for my doctor's knowledge and attentiveness in keeping this nasty little thing tightly wrapped. Kidneys, liver, lungs, brain - they're all functioning well (okay so my brain doesn't *always* work that way it should!) and completely clear of cancer.

I need to rest my hands for a while, but I'll be back with a happy-happy post later - we got a new puppy yesterday!

Love and Blessings,


Rebecca said...

Oh Sandie, I admire how intelligent you are on this matter! Knowledge is power and obviously you know that. Know that I am praying for you. The good Lord will take care of you...but again, I know you know that too:)

Yay for puppies though...Can wait to see pics!

Richard said...

Sandie - I am praying for you. Please hang in there!

In Christ - Richard

Marcia Francois said...

Oh Sandie, I came over to say "well done on the photos" and now I'm thinking, "why even bother with those?" - take care of yourself.

I'm praying for you - I know this must be SOOOO hard - I just want God to take this from you so you can enjoy your life again and be pain-free...

Big hugs from South Africa

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