I can't help but look back at my experience and think the medical industry should have helped me do this more aggressively. Here is what I think would have been a better, aggressive approach with better opportunity for results. My philosophy is more aggressive yet preservative and minimal impact/invasion approach. This is a work in progress, subject to change, and I doubt your doctor would go for it, but the more we ask, maybe we can change the approach to cancer care...
1. MRI or PET scan- this is a great imaging study that shows great detail and differentiation. Don't go into surgery without imaging. PET is great for showing tumors.
2a. High-intensity focused ultrasound (HIFU). A too new for the west treatment that is totally noninvasive. Shown success in China.
2b. Cryoablation - this is a novel, new nonsurgical method of tumor destruction. Apparently its more for smaller lesions...
2c. Tumor Assay - Probably one of the first things they are going to have you do is chemo, then surgery. If you get Chemo before surgery, you will have to wait 4 weeks before the tumor assay would be viable, so it may be better to have surgery, send the sample for assay, and then get their input for chemo. Tumor Assay isn't generally accepted as standard of care and will probably cost you out of pocket - I've seen prices around 5000USD. A small fee compared to what you're going to spend going through the chemo's that may or may not work for you.
3. HDAC inhibitors. These are starting to be more popular targets in the fight against cancer. Synovial Sarcoma seems to be especially vulnerable to these at least in mice and on slides, at this point.
4. anti-angiogenic drugs - these aren't typical first line treatments, but if possible to acquire, I think much better than cytotoxic drugs. In the case of Synovial Sarcoma, Votrient can be effective, but doesn't seem to endure long, certainly not long enough.
5. Localized hyperthermic chemotherapy - if you have a surgery to remove a tumor, rinse it out with chemo.
6. Immune therapy - a lot of people, me included, believe cancer results from an immune deficiency.
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I completely agree. It would have been nice if my doctor had done all of this from the beginning. And if insurance companies approved it. I didn't get approved for a PET before surgery, and I only had an assay after the first failed round of chemo. Intraparetoneal chemo with surgery wasn't an option for some reason. And I was also denied Avastin from the get-go. However, I realized that this was because I put too much faith in my doctor and that clinic (despite being a major research university!). I since switched oncologists and all of these options are suddenly available
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