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.
Wednesday, December 17, 2014
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.
Saturday, November 29, 2014
Sarcoma
Here is the latest...
Tuesday, Nov 18 -- First appointment at SCCA. Mostly just established myself as a new patient and agreed to have my OHSU tumor slides & imaging sent to SCCA for a new path report that more clearly defines whether or not my knee mass was benign or malignant.
Tuesday, Nov 25 -- Phone call from new sarcoma specialist with malignant diagnosis. See below.
Treatment recommended -- MRI of the site, CT of my lungs, radiation, and re-excision.
Now I am waiting for the scheduler at SCCA to call me to set up my next appointment. I will be in touch with my OHSU oncologist to find out why I was given contradictory treatment plans from OHSU and SCCA. Everyone is in the middle of Thanksgiving holiday, so I'm in limbo right now.
Glad I got a second opinion.
Tuesday, Nov 18 -- First appointment at SCCA. Mostly just established myself as a new patient and agreed to have my OHSU tumor slides & imaging sent to SCCA for a new path report that more clearly defines whether or not my knee mass was benign or malignant.
Tuesday, Nov 25 -- Phone call from new sarcoma specialist with malignant diagnosis. See below.
Soft tissue mass, left medial knee, excisional biopsy:
1) LOW-GRADE SPINDLE CELL SARCOMA WITH MYOFIBROBLASTIC DIFFERENTIATION
(FNCLCC grade 1 of 3); see Comment.
2) Tumor size: 1.3 cm in greatest dimension.
3) Sarcoma involves resection margin.
COMMENT:
Histologic sections from the left medial knee soft tissue mass show a neoplasm composed of spindle cells with eosinophilic cytoplasm, indistinct cell borders, and focal mild to moderate nuclear atypia. Cells are arranged into short intersecting fascicles. Mitotic activity is present (1 mitosis per 10 high power fields). No necrosis is seen. The provided outside immunostains show positive staining for CD34 and variable SMA in the neoplastic cells. Desmin, cytokeratin MNF116, EMA, S100, Melan-A, and SOX-10 are negative. The morphologic features and immunohistochemical profile are that of a myofibroblastic neoplasm. Due to the nuclear atypia, mitotic activity, and overall appearance of the tumor, we feel this tumor should be classified as a low-grade sarcoma.
Treatment recommended -- MRI of the site, CT of my lungs, radiation, and re-excision.
Now I am waiting for the scheduler at SCCA to call me to set up my next appointment. I will be in touch with my OHSU oncologist to find out why I was given contradictory treatment plans from OHSU and SCCA. Everyone is in the middle of Thanksgiving holiday, so I'm in limbo right now.
Glad I got a second opinion.
Sunday, November 2, 2014
Results
I received my surgical pathology report for the excision of my "leg lump" on 10/27. It wasn't a benign schwannoma, as originally assumed. Instead, I was told it was a low grade atypical fibroblastic/myofibroblastic neoplasm, 1.3 cm, extending to margin. It originated in the coating of the saphenous nerve in my left medial knee; unrelated to melanoma.
My doctor says that although my path report clearly states "re-excision is recommended," he prefers to watch & wait as I would "lose my saphenous nerve" and much of the feeling in my leg, permanently. He also said the chance of it spreading is "almost null" even though the tumor extended to the margins. I trust my doc, but I am afraid the tumor will come back. It is a possibility that we discussed.
My leg feels okay a little over 2 weeks post-op. Still pretty numb, tight, and tender to the touch... but I am getting around perfectly fine and have been going on walks without any problem.
My doctor has recommended me for genetic counseling and risk assessment at OHSU. I think that after 2 women's health surgeries, 2 melanoma surgeries, countless biopsies (around 20), and now THIS fiasco... I NEED to figure out WHY.
And...... I have also requested an appointment through Seattle Cancer Care Alliance to get a second opinion. I just feel like it can't hurt to run this all by another medical professional... preferably someone with more experience with sarcomas.
Getting upset.
My doctor says that although my path report clearly states "re-excision is recommended," he prefers to watch & wait as I would "lose my saphenous nerve" and much of the feeling in my leg, permanently. He also said the chance of it spreading is "almost null" even though the tumor extended to the margins. I trust my doc, but I am afraid the tumor will come back. It is a possibility that we discussed.
My leg feels okay a little over 2 weeks post-op. Still pretty numb, tight, and tender to the touch... but I am getting around perfectly fine and have been going on walks without any problem.
My doctor has recommended me for genetic counseling and risk assessment at OHSU. I think that after 2 women's health surgeries, 2 melanoma surgeries, countless biopsies (around 20), and now THIS fiasco... I NEED to figure out WHY.
And...... I have also requested an appointment through Seattle Cancer Care Alliance to get a second opinion. I just feel like it can't hurt to run this all by another medical professional... preferably someone with more experience with sarcomas.
Getting upset.
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