Posted 11/23/2015 7:37 AM (GMT -7)
After getting my liposarcoma diagnosis in September, and mentioning it here, I said I'd stick to PCa topics in the future. But, a few people suggested that they'd like to hear how things progressed on the other diagnosis as well. So, here is an update.
Friday was the equivalent of a quarterly PSA test for me, but they do a CT scan of the lungs, abdomen and pelvis to check for liposarcoma recurrences. The good news is that my lungs were clear (the lungs and liver are usually the first place for metastases to appear). But, there were two new nodules in my abdomen - one by the colon and one by the psoas muscle. They were unable to find them on my pre-op scan, but said they might have been tiny then and grown in the 10 weeks since surgery. Either way, 10 weeks later, I have 2 nodules about 2cm across, and one of the biggest predictors for bad outcomes with liposarcoma is an early recurrence.
I saw a surgical oncologist in the afternoon followed by a visit with a medical oncologist. The surgical oncologist has a reputation for not being very friendly and he lived up to it. Lots of long awkward pauses, and when I asked about techniques like NanoKnife for surgery, he just blew me off. He thought the nodule on the psoas was trivial to get out, but the other would require resection of the colon and large intestine. It would be my second open abdominal surgery in 3 months - no option to do this laparoscopically. He seemed almost angry when I asked him about the risk of ending up with a colostomy. He said he thought he could cure it with surgery. He also didn't really like my questions about how many liposarcoma surgeries he's done and what cure rates he had. He dodged those questions like it was a Presidential primary debate.
The medical oncologist is a sarcoma specialist who spent many years at MD Anderson. She said that there is a distinct "west coast" vs. "east coast" approach to liposarcoma, and said MD Anderson counts as west coast. In the east, the tendency is to just do repeated surgeries, hoping for a cure by excision, and then try chemo and radiation if/when surgery isn't possible. She said the west coast docs tend to be more aggressive early, using all of their tools to go for a cure. She said that it's a higher risk/higher reward approach. She thinks it produces more cures, but comes at a greater cost - chemo plus surgery plus radiation and all of their side effects.
She didn't mince words on the odds. She told me that there is maybe a 30% chance that the chemo will work and shrink the tumors. If that happens, the surgery will be less invasive and I can have the radiation done intra-operatively (I have to go to Dana Farber, Mass General or Sloan Kettering for that option). That is where she said I have a chance for a cure. There is another 30% chance that the chemo will stall the growth of the tumor, but not shrink it. She said we would still do surgery and radiation, but a cure would be way less likely. And, if the chemo doesn't arrest the growth, it's very unlikely that we would be doing anything other than buying me some time.
Liposarcoma has an odd survival curve. A lot of people don't make it 12-18 months, but after that, the curve starts to level out and has a long tail. I had an aggressive type and a very large initial tumor. The 5 year survival rate for my particular case is about 50%, but the cancer is rare enough that the nomograms are very variable.
So, we opted for the more aggressive approach. In the next 2 days, I have a PET scan to establish a second baseline for the existing tumors, an echocardiogram (the primary chemo agent - doxorubicin - is fairly heart toxic), and I will have a chest port installed. Chemo is inpatient - 5 days on, 16 off, times 3. I start on Wednesday. It will be the first time I haven't cooked Thanksgiving dinner in 30 years or so.
My wife and I went home Friday night and opened an old bottle of Hermitage and savored every sip. Just in case things go the wrong way, I don't want to leave some of those old wines in the basement behind. I'm trying to just keep a rational approach to all of this and then hope the doctors can pull it off.
My wife isn't sure she's going to like the bald look I'll be sporting in a few weeks.
Age 51 at Dx, 53 now
8/13 PSA 5.0
9/13 PSA 5.3 after DRE
10/13 PSA 4.9
10/13 - Biopsy - Gleason 3+4, 4 samples of 12 positive, 3 were 3+3, 1 was 3+4
1/6/2014 - RALP
Post-surgical pathology: pT2cNx Gleason 3+4=7 disease, neg margins
PSA remains undetectable
Resumed TRT on 7/22, ED resolved but still using Cialis
More recently diagnosed with high grade liposarcoma - my new battle