Skull-based primary low grade sarcoma

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Jen_M7
Jen_M7 Member Posts: 1
in Sarcoma #1
My 45 year old husband was recently diagnosed with a large skull-based brain tumor that went from his ear drum to behind his nasal cavity down to his jaw bone. He had dizzy spells, lost half of his hearing in one ear and had numbness on this face. The first biopsy that was done on the section protruding from his ear drum came back inconclusive. He had surgery a month ago to remove 90% of the tumor. The remaining 10% was left because it was too close to vital organs, including his carotid artery and cranial nerves. At this point, side effects from surgery are minimal… his facial numbness has gone away but his hearing loss has remained.

After sending the pathology slides to other hospitals, it took them 4 weeks to finally diagnosis him with a ”low grade” spindle cell sarcoma. Because my husband is still young, the neurosurgeon is recommending a “wait and see” approach to any treatment because the tumor is low grade. He said they’d do another scan in a couple months to see what seems to be growing before radiation. His reasoning is because of my husband’s age radiation might create more tumors and be more harmful than good. Also, that some of the remaining cancer cells might die off naturally (scar tissue). However, the radiation oncologist suggests radiation at this time to get the remaining 10%.

While everything I’ve read says low grade sarcomas are slow growing and tend to grow back at the initial site, nothing I’ve read suggests not administering radiation or chemotherapy if any of the tumor remains, which my husband has.

Questions:
- Has anyone ever taken the “wait and see” approach to a low grade sarcoma?
- If the tumor remnant is still there, can the “grade” change from low grade to something higher and spread further?
- Has anyone with a low grade sarcoma done chemo rather than radiation (which was one recommendation we heard as well)?

Thanks

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  • Dermarac
    Dermarac Member Posts: 2
    #2
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    Wait & see approach, also my Doctors recommendations
    Hi,
    I'm 46 years old & was Diagnosed with a Low Grade Fibro-Myxoid Sarcoma (LGFMS) in January of this year. Mine was located in the chest wall, behind my right lung. Depending on who you are seeing, will depend on the recommendations is what I found out. The hospital I had the surgery with, recommended a course of high dose radiation following the surgery. This was because, the tumor was thought to initially be benign (the way it presented itself in tests) and NO margins were used in the removal. When I went to Dana Farber in Boston their recommended approach (also because of the Low Grade nature) was a CT monitor & wait and see. The thought being, targeted therapy if & when it re-occurs is always BETTER than taking a shot in the dark, hoping to kill residual tumor cells, that may be just outside the treatment area borders.

    Also as far as chemo goes for LGFMS, it's not considered effective on this type cancer. Low Grade tumors do not uptake a significant portion of the chemo since they have such little activity to begin with. In your husband's case it is complicated by the fact he has ~10% of the tumor remaining. In my case, it's unkown how much was left behind (or if any). The operating Surgeon remarked at how well encapulated & defined the tumor was with distinct borders, which believe it or not is encouraging. From what little I know about Low Grade Sarcomas in general, if the approach to wait & see makes sense then treatment can be taylored in/when re-occuence happens. Not comforting but at least treatment would be targeted!

    Also, I recommend you get more than 1 opinion on treatment if your unsure of the route to take. I consulted w/ 3 treatment centers & settled with the DFCI recommendations based on their expertise & ability to monitor the Cancer's progression.
  • Natural_girl07
    Natural_girl07 Member Posts: 3
    #3
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    My mother had radiation
    My mother had radiation following a brain tumor removal....and afterwards, she regretted it, as well as the surgery. She said, if I had it to do over again, I would have let nature take it's course. Radiation is what did the most damage in her and my family's opinion. I was told that most surgeons would not opt for radiation, but have to offer it as due diligence.

    Since her operation in 2003, and she passed, last year, I have discovered many more non-invasive tequniques for brain tumors such as cold laser treatments that are being developed...her's was also non-cancerous and of "germ" origin...that I later was told meant that it was in infection, or calcified infection. DMSO, Ozone, Oxygen therapy, hydrogen peroxide therapy may be an option, depending on where you live. Most european nations allow these treatments and have had great success, difficult to find allowable treatment in the US.

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