Liposarcoma update

Hello everyone,

I don't post here much anymore, although I stop by and catch up a couple times per week. I am coming up on the 3rd anniversary of my RALP, my PSA remains undetectable, and have been on TRT for 28 months now. On that front, life is pretty good. At three years, I still need Cialis, but I don't have any leakage, and everything from the PCa is manageable.

But, for the last 20 months, I've been fighting a second primary cancer - dedifferentiated retroperitoneal liposarcoma. Last year at this time, I was doing chemo. In March, I had surgery and the surgery showed that the chemo had worked exceptionally well - three of 4 lesions were dead, and the 4th was primarily the well-differentiated subtype of liposarcoma - a subtype that rarely metastasizes.

In June, I had a clean scan, but my early November scan showed a new tumor. It appears to be the dedifferentiated subtype, which is disappointing. Well, the entire recurrence is disappointing, to be honest.

I live in VT, but liposarcoma is so rare that I travel to Sloan Kettering for my treatment. I'm currently on the train to NYC right now.

The tumor is in a tough spot - behind the liver, possibly entangled with the inferior vena cava, and near the spine. Liposarcomas of this type don't typically respond to standard radiation, but they do respond to high dose radiation. So, I'm going to have a week of high dose IGRT starting tomorrow. I did the simulation last week, and this is my 3rd trip to the big city this month. I love NYC, but not this way.

After radiation, I'll have a CT scan in late January, and probably another surgery to follow. Including my RALP, that will be my 4th abdominal surgery in just over 3 years. I have a lot of scar tissue and residual pain from the previous liposarcoma surgeries.

I've been told to expect significant fatigue and nausea from this round, as well as pain. I've been told to take a benzo, some oxycodone, and Zofran before treatments each day.

I think we all hate when people tell us that PCa is a "good" cancer, as if there is such a thing. I can certainly tell you that liposarcoma is not a good cancer, and the recurrences are getting frustrating. I have a deal with my wife right now, and that is that I will only commit to one treatment at a time. If I get to the point where my QOL has been compromised too much, I will stop with the major interventions, and look at some of the newer chemo options for this disease. They are, in many ways, palliative, but they are mostly tolerable and they do buy some time.

I may still live 20 more years with this beast, or maybe it will be a lot less. It's almost certain that PCa will not kill me.

And, so far, my quality of life remains pretty good. I skied on Sunday. I still fly fish a lot. I still do CrossFit a few days a week, and I did a 45 mile ultramarathon last month. So, while the diagnosis is not great, I'm still enjoying life and what I have is worth fighting for.

Happy holidays to everyone.

Damon