Since April 2000, I have “metachronous” soft-tissue sarcoma (MFH). The term - metachronous means “not synchronous; multiple separate occurrences, such as multiple primary cancers developing at intervals”. Metachronous is not the same as metastatic, although some people think so.
All of my MFHs were/are soft-tissue with pathology stating that the tissues varied from spindle-cell to myxoid.
Since my MFH journey started in April 2000, I have had presentations in my right shoulder/arm interface, my right thigh/quad muscles, my left thigh resting on the femur bone, my left chest-wall between ribs (2x), my upper stomach wall, my right lung upper-lobe, my right buttock interior, my left paraspinal muscles (2x), my right forearm. I was a right-hander, but now I am a left-hander, but can still drive a car - the fingers can grip the steering wheel - other times, I have to hold a therapy ball to keep my fingers "extendable", including while sleeping.
Most of these were surgically removed, and one was killed by radio-frequency ablation. Most occurrences had adjuvant radiation, including IMRT and Brachytherapy .
My only neoadjuvant radiation - to my right forearm severely ruined sub-surface tissue, blood vessels, tendons and nerves, - that the surgery “sew-up” was extremely difficult. The radiotherapy only reduced the tumor size from 8.2 cm. to 7.8 cm. I will never again have neoadjuvant radiotherapy.
I had Novalis stereotactic radiotherapy that is reducing the existing MFHs in my left armpit area and the one in the upper lobe of my right lung.
Except for the Novalis treatment, all adjuvant radiation burned the area severely that I have had several instances for burn therapy.
I attribute my “long survival” to religious periodic CT scans (with MRIs to suspicious areas) and rapid treatment at a “somewhat” sarcoma-knowledgible facility, mostly at the Arizona Cancer Center/UMC, Tucson.
My only chemo “trip” was neoadjuvant to see if it can kill the MFH in my left thigh before surgery. I had 2 ½ months of Adriamycin (doxorubicin), continually via the P.I.C.C. procedure. Upon surgical pathology, the MFH only had < 20% necrosis. So, no more chemo for me - as recommended by the sarcoma ortho surgeon that did 3 surgeries on me.
I also had molecular profiling done on a tissue sample taken from my last back surgery. The “most-relevant” agent is Gemzar (gemcitabine). I looked up the side/after effects and they are very severe. So, I am not opting for this - or any agent! Not at my age - 77.
