MEDICAL HISTORY - STAN
Since April 2000, I have “metachronous” malignant fibrous histiocytoma (MFH)(aka undifferentiated pleomorphic sarcoma - NOS) - a soft-tissue sarcoma (rare cancer). 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 10 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 (tested) - 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, Novalis stereo-tactic radiotherapy, 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, and reconstructive surgery had to be done 3 months later. 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 stereo-tactic 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, AZ. We now have a Sarcoma Support Group there (started by me), which meets quarterly. And, through my “insistance” - we have a dedicated multidisciplinary sarcoma clinic operating weekly there.
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 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 - 78.
I had a 2 cm. presumably MFH “bump” on top of my head - only in the surface skin, that was removed in a 1-hour out-patient procedure on Dec. 23, 2008, and all went well. The doc got good margins, but had to install staples, temporarily - since the surface skin had to be “re-connected”. I got the staples removed on Jan. 12, 2009.. The surgical frozen section was taken; this was done - since the earlier fnabx was inconclusive. The surgery pathology was analysed, and only 1 out of 5 sections was a malignant analysis - as DermatoFibroSarcoma Protuberans (DFSP) another soft-tissue sarcoma. This is the first occurrence of DFSP since my sarcoma journey started in 2000. The staples were all removed Jan. 12, 2009 and the site is healing fine.
*> And, for the past 6 + months, I am experiencing daily pain from the late-effect radiation-caused severe fibrosis? of my left paraspinal muscles (thoracic and upper lumbar sections) and right thigh-quads, and neuropathy damages to the various nerves in those areas. I employed pain management therapy, at the clinic - started Dec. 19, 2008. At the Dec. 19th visit to the pain-management clinic, the doc gave me nortryptoline anti-depressant med - to sleep better. On Jan. 22, 2009, he did an epidural-corticosteroid injection on my back left paraspinal thoracic muscles, T-3 to T-12. The upper lumbar section L-1 to L-3 - was injected Feb. 5, 2009. The shots just gave me minimal pain relief for 2-3 days. On Mar. 3rd, when the doc described 2 trials by Medtronic (1 - for catheter-delivered medicine, and 2 - for implanted nerve-stimulation), I declined to enter these trials. I will continue my pain medications and exercise/hydrotherapy.
To correlate this situation with the possibility of new tumors in the areas,
I set upon myself to get an MRI of these areas.
On June 18th, 2009 I got the MRI.
The next day, I got the copies of the reports. The following is the concluding impressions of the radiologist to the images -
6-18-09 MRI T-Spine
1. Large (18 cm) extensive left paraspinous
soft tissue multiseptated, predominantly cystic mass.
A second new mass is now noted within the right
paraspinous soft tissue region, much smaller.
A third mass is suspected within soft tissues
of the left buttock region. Although histology
is indeterminate, recurrent soft tissue sarcoma
is of primary concern.
2. No focal disc protrusion/extrusion or significant
central spinal canal stenosis.
6-18-09 MRI L-Spine
1. Large multiseptated, partially cystic mass identified
within the soft tissues of the left buttock, left paraspinous in location.
Although exact histology is indeterminate, soft tissue sarcoma is of primary concern. Biopsy is advised.
2. No focal disc protrusion/extrusion.
3. Moderate localised central spinal canal stenosis,
In the body of the report, he said that the largest tumor was
exactly in the same place as the one that was radiated/excised in
Dec. 2005. The other areas were also previously radiated 2004-2005.
So, in my opinion - the present situation is the result of
My PCP has these current reports, and knows of my decision to.......not do anything.......
At my age - 78, I don't think that I can survive radical surgeries.:mad:
And, based on prior experiences, chemo doesn't help.
And, NO MORE MICROWAVE OVEN!
So, I'll continue with my pain meds - and live as well as able with my
ever-loving of 53+ years.......'till the "end-of-time".