I received an email asking if I was going to provide details of knowns and unknowns to date. I’ll try.
Are you ready?
Yeah, me either.
Here’s what we know:
(FYI: That’s the only time in my life I’ve ever typed the word ‘nipple’ and not giggled like a thirteen year old.)
(To my amazing Genetic Counselor friend, Christy, please feel free to correct that last if I said it wrong.)
If you read all that and feel like you’ve been hit over the head with fifty pound medical text book, welcome to the wonderful world of cancer.
Grab a glass of wine (so what if it’s before noon on a Sunday morning), because this shit’s about to get heavy.
Here’s what we don’t know:
When I had my first biopsy done back in early July, they only took samples from the tumors and from a lymphnode under my arm. My new surgeon said we need to know if this 10 cm is cancer, too, because it could help determine the extent of the surgery I will need (lumpectomy vs full mastectomy).
I’m learning to jump through insurance hoops. For instance, the hoop required for the insurance company to approve the PET scan (denied twice–once with the old doctor, and once with the new) was a phone conference between my doctor and the insurance company in which my doctor justified the use of a very expensive test.
I like to think my panicked phone call to the insurance company telling them they needed to scan the ‘timebomb in my bra before it killed me’ had some impact, too, but I’ll never be 100% sure.
Another hoop to jump through: the insurance company denied the genetic testing because I hadn’t spoken to a genetic counselor.
I made another phone call to them and was told ‘no, you don’t have to speak to a GC’.
My doctor’s office called the insurance company and were told ‘yes, she does’.
This resulted in a four way conference call between me, my doctor’s office, the insurance company and the genetic testing lab to determine if I needed to speak to a genetic counselor before the appointment (it turns out the answer is ‘yes, she does have to’).
So approximately two weeks after August 5th, my phone-date with a GC, I will have the results of the genetic test.
This is the big, scary, ten million dollar question everyone wants to know the answer to.
The stage will be determined by the PET scan on Tuesday. According to the medical brochure I was given, the PET scan is similar in shape to a CT scan, but makes very minimal noise and shows how your body tissues function. My favorite quote from this brochure:
“You will receive a radioactive injection and it is imperative that we keep exposure levels to the public as low as reasonably achievable.”
I read this to Justin. He was quiet for a minute then said, “You better get super powers out of this.”
Can I get an amen.
I have been given a tentative diagnosis of stage two, then later, a tentative diagnosis of stage three. If the scan shows it’s spread to my bones/brain/other places, that’s stage four. The doctors say they can cure stage one, two and three. Not stage four.
Consequently, ‘three’ has become my new favorite number.
So, in less than a thousand words, that’s my list of knowns and unknowns to date. I’ll post an update with the results of all the tests later this week.
If you don’t hear from me, assume the best and picture me shooting webs out of my hands and swinging through downtown Houston from the tops of skyscrapers.