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.

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.

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.

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.

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.

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.

3rd pair of Bair Paws

I received the results of the FNA of my knee/leg/whatever on October 11th.  It was a (most likely) benign spindle cell nerve tumor... also known as a schwannoma. Never heard of it. But of course it must be removed... no lumps or bumps left untreated here! Surgery was scheduled for Friday, October 17th.

I got the results of my (6) skin biopsies a mere 24 hours before surgery. 2 were normal, 2 were dysplastic nevi with clear margins... and 2 were dysplastic nevi requiring additional surgical excision. Of course. Oh well... not melanoma!!!

Had a successful surgery on the 17th. My surgical oncologist biopsied the tumor from my leg and took care of the last minute excisions, too. Recovery is going well. Three lovely new scars... what else is new? The pain is tolerable, but I am definitely hobbling around. The nerve damage is the worst part!!!!! Can't feel my shin at all. :(

Should receive the "all clear" path report by Friday the 24th. Doc said the tumor was totally consistent with the benign schwannoma diagnosis. I now have 3 pairs of Bair Paws socks.

Fun with cysts

Just a quick update for my records. I tend to forget these things unless I jot them down.

Monday, Oct 6th -- had 6 biopsies (1 scalp, 2 back, 2 stomach, 1 inner thigh). All were small lesions that had changed since my mole mapping photos were taken in July 2012. I'll have those results in about a week or two. I also had a tiny mole removed from my back in June and it came back irregular. Good eye, doc.

Tuesday, Oct 7th -- had my regularly scheduled oncology visit. These visits are still every 6 months -- chest x-ray, labs & quick visit with the doc. I am done with scans. This time, however, I have a strange lump in my left leg -- just below my knee on the inside (pic below). I first noticed it on Labor Day weekend (5 weeks ago). I saw my general practitioner right away and she thought it was just a cyst (it's movable & painless) and sent me on my way. I showed my derm on Monday and she thought I needed to have it looked at and treated by my oncologist. I told him this and he sent me for a same-day ultrasound with needle aspiration and PET scan the following day. The PET scan results came back right away and only showed the nodule in my knee. Just waiting on the needle biopsy results now. I am feeling confident it's just a harmless cyst and totally unrelated to melanoma. I literally have no other symptoms.

*Notes:

My derm thought my left groin nodes seemed swollen, but my oncologist says I have "shotty nodes" and didn't seem concerned. I've heard this from him in past appointments, so I'm pretty sure it's just how I'm built!

The needle aspiration was very uncomfortable. I think they hit a nerve because I felt a shock down my leg during the procedure. Two days later, the lump is bruised, a little swollen, and I still occasionally feel a shock-like sensation and dull pain down my shin. I'm trying to take it easy for a bit.

That's all for now...

Just an update...

Hello...  I thought I'd post a quick update.

Just the facts:

• I still see a dermatologist for a full skin exam every 4 months. I love my doctor... I highly recommend Dr. Beata Rydzik to EVERYONE anywhere near PDX. I started seeing her in July 2013 after deciding I'd like a second set of eyes on my skin and I made a permanent switch.
• I have bloodwork, chest x-rays, and a full body PET scan every 6 months. 
• I visit my surgical oncologist at OHSU every 4 months. I chose to stop seeing my medical oncologist, simply because I am not nor have I ever received medication and it's a superfluous visit (IMO).
• I have had countless biopsies since 2012 and they have all been benign.
• I had mole-mapping photos done at OHSU and it was the most embarrassing experience of my life. But, the pictures are SO helpful. Whenever I think I have a new mole or want to find out if one has changed, I have my photos to refer to.

So, basically... I'm doing great!  Not everyone is so lucky, so I feel very fortunate that all I am dealing with is tedious appointments.  This will continue until I reach 5 years NED... which is technically May 2017.

-----

Awhile back, I posted the wonderful video Dear 16-Year-Old Me.  If you haven't seen it yet, definitely watch it. I was so saddened to hear that one of the women, Meredith, in the video passed away from ocular melanoma (just 26 years old) this week. May she rest in peace. :(

XOXO,
B