Seroma update

I went back to the ER on Friday the 22nd and had the seroma drained from my leg -- 16 cc's! It instantly felt better and I have noticed a decrease in swelling. I can *almost* see my ankle bone again.

I met with my surgeon again in Seattle yesterday, just to make sure everything was still healing okay. He said my range of motion -- which is at about 90 degrees bent -- is where he'd expect to see a patient at 3 months out! That was encouraging.

I am still entirely numb along the surgical site and the front of my calf. My incision is fiery red & screams Frankenstein. But, there is no pain and I can walk short distances and sit without elevating. I am improving every day.

My echocardiogram was normal.

Pre-op at the breast clinic tomorrow...

Genetic results

Negative for BRCA 1 & 2... *HUGE SIGH OF RELIEF*

I will proceed with my scheduled lumpectomy on June 1st and six weeks of radiation will follow. Here is a great read that might help explain why I have chosen this treatment plan when it seems like the trend is to opt for a dbl mastectomy "to be safe": Aggressive Treatment Does Not Mean Better Treatment.

Back to my genetic results. I was tested for 29 different gene mutations and all but one was negative. One gene, PALB2 came back as a "variant of uncertain significance" -- but that just means it's neither negative nor positive. There might be something going on... there might not be. PALB2 is associated with breast, ovarian, & pancreatic cancer. It wouldn't explain my sarcoma or melanoma at all... but could be associated with my IDC? Hopefully not, but there is really no way of knowing right now.

Here is what current research says about this particular finding:

If your patient’s result is “Genetic Variant of Uncertain Significance” in PALB2 it means that a change, or alteration, was detected in the gene but it is not known if this change confers an increased risk of cancer. Since the clinical significance of the variant has not been determined, cancer risks for an individual found to have a variant of uncertain significance should be estimated based on his/her personal and family history of cancer. The individual’s cancer risks could be increased due to 1) other non-hereditary factors (e.g. environment and/or lifestyle), 2) other genes, or 3) a mutation in PALB2 that current technology cannot detect.

Pathology and more

Sarcoma:

Had a good post-op appt on 5/12. My pathology report was clean.

FINAL DIAGNOSIS:

A) Sarcoma left knee, excision:

· RESIDUAL low-grade spindle cell sarcoma with 

myofibroblastic differentiation.

· Residual sarcoma size: 0.4 cm in greatest 

dimension.

· Margins are free of sarcoma; residual sarcoma 

measures 0.5 cm from the deep margin (composed of 

normal tissue/fascia).

Sutures are out... brace is off... scar is hideous... recovery is slow.

I started PT on 5/15 and my range of motion is VERY SLOWLY increasing. It could take about a month to regain full ROM. Too much activity causes extreme swelling, so I am still doing a lot of resting & elevation.

I've also developed an 8cm seroma (fluid pocket) under my incision, which is also causing a lot of extra swelling. It will probably just be something that reabsorbs over time, but I am waiting on more info from my surgeon. I had an U/S to diagnose the seroma yesterday at my local hospital. I feared it was a blood clot, so I feel relieved to know it isn't!

On Wed, I am having an echocardiogram to check on my heart murmur. This was a recommendation from my most recent anesthesiologist. I had a normal EKG last week, so I don't expect anything to come of this. I've had this heart murmur with no problems since I was a kid.

Breast:

Genetic results should be in within a week... My pre-op for lumpectomy is coming up on 5/28. Surgery is still tentatively scheduled for 6/1. 

Post-op life

Sarcoma surgery:

One week ago, I had a successful excisional biopsy on my leg. Pathology should be in early next week. I stayed in the hospital for two nights (and had many thoughtful visitors!) and spent the rest of the week on my couch. Recovery is slow, but going well. Stevie is highly attentive to my every need (even bandage changes) and my mom rules the roost while he is at work... they are freaking amazing. I am able to hobble around without crutches now, but my leg will remain in an immobilizing brace until May 12th (post-op appt). Oh... and I had my drain removed yesterday!

Some wonderful local friends have been doing a "meal train" for us and we are so very grateful for the support and fabulous food! THANKS!

I woke up like dis. #gotafatlipunderanesthesia

Hot husband caregiver.

Sorry if you're eating.

Wheeling me out of the hospital!

Post-op life with my sweet little one!

Bandaid sticker <3

Breast stuff:

I also met with my genetic counselor yesterday. I had blood drawn and will be tested for 29 different gene mutations by Gene Dx. This is a different lab than we used last time and this comprehensive cancer panel will even retest me for Li Fraumeni. Results in 3-4 weeks.

I also have a tentative lumpectomy scheduled for June 1st... assuming these genetic results are back (and negative) and there are no changes to my treatment. We'll see...

The struggle is real

There is no doubt I have a long, tedious road ahead of me... but the good thing is, it's a hopeful one.

Breast cancer update...

I finally visited the breast clinic on 4/21 and was given formal recommendations & options for treatment. I met three new doctors and I will break down what each of them said (in a nutshell, of course... I spent about an hour with each of them).

Surgical oncologist: This doctor recommended a lumpectomy and said that it would be a simple outpatient operation. The sentinel lymph node from under my left arm will also be tested (just like I went through with melanoma on the right side). Recovery time is only about a week and I shouldn't notice any significant physical changes/disfigurement.

Radiation oncologist: Approximately 2 weeks following surgery, this doctor recommends 6 weeks (30 doses) of radiation. This means another (longer) stay in $eattle. Be careful what you wish for, people!!!

Medical oncologist: After radiation, this doctor will start me on Tamoxifen -- a daily pill that blocks estrogen for hormone-receptor positive breast cancers (like mine). I will be on this drug for 5-10 years. If I wish to have another baby, they will actually allow me to stop taking it and then restart after the baby is born or done breastfeeding (if I'm able). We cannot attempt this until I've been taking Tamoxifen for two years... but we were prepared to be told it was completely off the table, so this is a major win in our book.

OF COURSE there is a BUT.

I have to meet with my genetic counselor again to undergo a panel of genetic testing -- including BRCA aka the Angelina Jolie gene mutation -- before we can confidently proceed with the above plan. If I am BRCA positive, which is highly unlikely given that there is NO breast or ovarian cancer in my family to speak of, than a new treatment plan may be formulated. I meet with genetics on Thursday 4/30 and the results will probably take about a month (it's an extensive panel).

So... it's unlikely I'll have any further updates or actual treatment for breast cancer until the end of May. My doctors have assured me that it's a slow growing, small, totally treatable cancer and it's okay if we take this time to make a well-informed decision. It's weird because I can feel it and I just want it out now!

Sarcoma update:

Meanwhile, I'm having surgery on my leg tomorrow. I check in at 5:45am for an 8am procedure. I'll be in the hospital overnight and my unbelievably supportive & fabulous husband will be with me every step of the way... as always. #shoutout

I'll let you know how it goes!