Looks like it's gonna be awhile before I get those results... I just got this email from UW Genetics:
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Hi Blair-
I am so sorry to keep you in this limbo... but I think you will have to reschedule. I just called the lab. They have not yet heard from your insurance company with their decision about authorization. Because the lab can't start the test until they have authorization, the test will take 2-3 weeks after authorization is given. The representative I spoke to at the lab said she will call the insurance again and ask if our request can be given priority since you and your doctors are waiting for the results to make treatment decisions.
The lab will contact me when they get the decision from insurance and will likely ask me for permission to start the test. I will instruct them to start and will contact you so you can schedule your return with Dr. Kim.
Again, I am really sorry about this. I chose to send your testing to this specific lab because I truly thought we'd have results in 2-3 weeks. I will remember this for the future and apologize that it has not gone smoothly for you.
Please let me know if you have other questions, but I'll be in touch when I have information.
Best,
Emily
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Stevie spent hours on the phone with Moda until a supervisor of some sort promised to have this resolved within 48 business hours. My docs want me to keep the appointment on 1/13, but I'm not sure what we will be discussing now...
I also heard from the gynecologic oncology department at UW Med. They are collecting all of my records and reviewing them... then they will call me back in the next few days to schedule the appropriate appointment.
Thursday, January 8, 2015
Monday, January 5, 2015
The unknown
Big snafu with my insurance over the holidays... Authorization for genetic testing was stuck "pending" for 3 weeks. Should be resolved now, but results are still MIA and my appointment for tomorrow has been rescheduled for 1/13. Makes me wonder how many people in this country do not receive timely treatment and are seriously f*cked over due to medical insurance being such a damn cluster.
In other news, I followed my gut and made an appointment with my gynecologist regarding 1) abnormal uptake in my uterus on my last PET scan and 2) a 6.5cm presumed leiomyoma (common benign uterine fibroid) found on a corresponding ultrasound.
PET results: Uterine fundal activity is again noted, max SUV 10.1, similar to prior and of unknown clinical significance. Persistent increased uptake of uterus, essentially unchanged from prior. May correspond to leiomyoma seen on prior ultrasound per noted, however this amount of avidity is atypical for leiomyoma. Further evaluation with biopsy vs MRI can be considered.
He reviewed these findings and even compared them to my test results from one year ago. The alleged leiomyoma has grown 2cm and my gynecologist considers that to be rapid growth. Because of this and the continuously high uptake on my PET scans, he wants me to see a gynecologic oncologist. I spoke with SCCA and was referred to someone at UW Medical. Hopefully I can get in to see her when I'm up there on the 13th.
In other news, I followed my gut and made an appointment with my gynecologist regarding 1) abnormal uptake in my uterus on my last PET scan and 2) a 6.5cm presumed leiomyoma (common benign uterine fibroid) found on a corresponding ultrasound.
PET results: Uterine fundal activity is again noted, max SUV 10.1, similar to prior and of unknown clinical significance. Persistent increased uptake of uterus, essentially unchanged from prior. May correspond to leiomyoma seen on prior ultrasound per noted, however this amount of avidity is atypical for leiomyoma. Further evaluation with biopsy vs MRI can be considered.
He reviewed these findings and even compared them to my test results from one year ago. The alleged leiomyoma has grown 2cm and my gynecologist considers that to be rapid growth. Because of this and the continuously high uptake on my PET scans, he wants me to see a gynecologic oncologist. I spoke with SCCA and was referred to someone at UW Medical. Hopefully I can get in to see her when I'm up there on the 13th.
Wednesday, December 17, 2014
Genetics
Thursday, Dec. 11th -- Met with UW Genetics. They spent an hour with me recording all of my family history (hardly any cancer!) and explained that I am being tested for Li-Fraumeni Syndrome. I'm not even going to elaborate on that one, because it's rare and unlikely. The link explains it all. It was just a simple blood draw. Modern medicine is amazing!
I should receive these results shortly after Christmas. I go back to SCCA on Tuesday, January 6th to formally discuss the results and finally schedule the appropriate treatment. Stevie and I can't believe that the best case scenario involves 5 weeks of radiation. Kind of strange to be pulling for radiation.
I should receive these results shortly after Christmas. I go back to SCCA on Tuesday, January 6th to formally discuss the results and finally schedule the appropriate treatment. Stevie and I can't believe that the best case scenario involves 5 weeks of radiation. Kind of strange to be pulling for radiation.
Wednesday, December 10, 2014
Next steps
Scan results:
CT of lungs - clear (!!)
MRI of knee - some uptake, but indiscernible.
New development:
Meeting with Genetics at UW to determine if I have a predisposition to growing tumors. This is because I am only 31 and have been diagnosed with two separate cancers. As I stated in an earlier post, I was already scheduled to have this done at OHSU in February... but we need to know now. If I do have a genetic predisposition, radiation might not be a good idea. The risk of radiation causing a new growth would outweigh the benefit of treatment. If I don't, which is most likely, then we will continue with the originally proposed treatment.
Most likely scenario:
5 weeks of radiation at SCCA beginning in mid- to late-January. Then 5 weeks of rest. Then re-excision surgery. Start to finish is about 3 months.
Genetics testing will take place on 12/11 and I won't have the results for about 3 weeks. My sarcoma is low-grade and hasn't spread, so my doctors are comfortable with this timeline.
Time to enjoy the holidays and just wait.
//
Learn more about the sarcoma program at SCCA. My doctor is featured in this video.
CT of lungs - clear (!!)
MRI of knee - some uptake, but indiscernible.
New development:
Meeting with Genetics at UW to determine if I have a predisposition to growing tumors. This is because I am only 31 and have been diagnosed with two separate cancers. As I stated in an earlier post, I was already scheduled to have this done at OHSU in February... but we need to know now. If I do have a genetic predisposition, radiation might not be a good idea. The risk of radiation causing a new growth would outweigh the benefit of treatment. If I don't, which is most likely, then we will continue with the originally proposed treatment.
Most likely scenario:
5 weeks of radiation at SCCA beginning in mid- to late-January. Then 5 weeks of rest. Then re-excision surgery. Start to finish is about 3 months.
Genetics testing will take place on 12/11 and I won't have the results for about 3 weeks. My sarcoma is low-grade and hasn't spread, so my doctors are comfortable with this timeline.
Time to enjoy the holidays and just wait.
//
Learn more about the sarcoma program at SCCA. My doctor is featured in this video.
Friday, December 5, 2014
Upcoming appointments
New appointments are scheduled for Tues, Dec 9 --
UW Medical Center
MRI of the left medial knee
CT of the lungs
*Results will be immediately available.
SCCA
Meet radiation oncologist for the first time and discuss treatment options based on those imaging results. Sarcoma specialist will also be present.
UW Medical Center
MRI of the left medial knee
CT of the lungs
*Results will be immediately available.
SCCA
Meet radiation oncologist for the first time and discuss treatment options based on those imaging results. Sarcoma specialist will also be present.
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