Hi canadianmom,

Just got onto this site tonight. I'm going to describe my situation in a very concise way, as I'm receiving some pressure to make a decision by the doctors. I'm sure there will be much you don't understand (I wouldn't) because of my brevity, and I will be more than happy to answer any questions from you or others over time (as would my doctors, I'm sure). I'm sending this to you because, coincidentally (maybe spiritually, and I've always been a major skeptic), I'm also from Canada, and yours was maybe the 5th post I saw on this site.

About 2 months ago(?), I was told that a pathology report resulting from a routine biopsy of what appeared to be a bump in my mouth (I thought it was maybe a tooth infection), was in fact a very rare and aggressive cancer called Leiomyosarcoma. I'm 56 and have always been reasonably fit. Within, I think, 2 weeks, the bump had returned, but did not change after that (not sure if the doctors considered this relevant, but it seemed so to me).

This news from the dentist was of course devastating, and after some internet searching, I realized speed was very much of the essence. Selfishly for me and my family (and arguably some friends :), I decided to send an email directly to a doctor recommended on a forum like this one (except it was specifically for Leiomyosarcoma, I think), rather than wait for the referrals from my family doctor and the dentist to go through. He agreed to see me the next day, and after doing so, set up an MRI, CT scan and meetings with surgeons and other relevant doctors that week. This speed seemed unusual for the Canadian system (as I'm sure you've heard or experienced), which seemed to confirm my fears. I am sure my name was completely unknown to the doctors, by the way, and we have no wealth.

The treatment of choice was surgery with wide margins, which took place on June 25.
Surgery was removal of the tumor, and my right jawbone had to be replaced with
a piece of my fibula. Surgery was long (10 hrs.?), but the surgeons were actually quite familiar with the operation apparently, as it is used relatively often for other reasons. It also sounds much grosser than it is; all other things being equal, I'm told I'll be back to almost normal in months. I know millions of others have it much worse.

The pathology report from the operation came back indicating an even rarer cancer (myopericytoma). Presumably, maybe because they're both so rare, it's easy to make a mistake. Doctors told me they know almost nothing about it because it's so rare and a few other details, and feel free to do my own research. I asked a hospital library to find what they could - they came back with some material. Although I have almost no experience in the area, I followed up on the internet using sources referenced in the library material (this took probably a couple of hours, as there is little info). As an example, my research confirmed that it was extraordinarily rare (there were 73 cases known at last count, 5 of my variety).

Reasonably so in your mind, all of this may have little relevance to the question I have, but I thought I'd cover it off in case it was relevant to you or anyone who sees this. So now here's my question, which may seem relatively minor, but is currently crucial to me and my family.

The doctor most involved in my case(the surgeon)advises that because information is so limited, they have nothing to go on as far as next best steps, for this particular cancer. So it's a choice of doing nothing, or getting radiation now. Doing nothing may be fine, it may kill me, or it may result in side effects. Same with radiation. You could possibly extrapolate from other cancers, but my doctor hasn't referred to this (and I just thought of it now). That possibility has limitless iterations. I believe I've thought of about a billion other possibilities since I got this (maybe it's not cancer - our understanding has changed dramatically over the years).

Of course I'm not asking you this question, which people much smarter than you or I can't answer, but you might be able to provide a few words pointing me in the right direction. My questions is: what can you tell me about proton therapy? I just read of proton therapy tonight when I started to Google radiation therapy, and I immediately came to this site and your post. I understand this isn't available in Canada, but may be better than straight radiation. Can you or anyone else reading this tell me more (succinctly if possible), or direct me further? Comments on other parts of my post by you or anyone else reading this are of course also welcome.

I haven't looked into how this message board works - please let me know if no one else is receiving this (I don't wish to place unwanted responsibility in your lap), and I will send it again some other way. Canadianmom, regardless, and above all, please DO NOT assume in your mind any responsibility no matter what you do or don't do. Please feel free to completely ignore this - the fact that I came upon your message is all that matters.


  • hwt
    hwt Member Posts: 2,328
    I too had my jaw bone replaced with my fibula and titanium but have SCC. My surgery was 19 hours, I was kept in a coma 4 days following and hospitalized 2 weeks. That was 01/31/12. While my surgeon got clear margins, like yours, 3 of the lymph nodes removed were positive. You did not mention lymph nodes. I was supposed to be back to normal in 6 mos. but because of the lymph nodes had to do radiation and chemo as preventative medicine. That was completed mid-May. The ONC was concerned about the healing of my leg w/chemo tx. It took 4 months to heal. I assume you had some teeth removed. Due to radiation I have to wait 6 mos. from last rad tx. to start replacing teeth. I will need to do 30 days in HBOT then implants then 6 more months before lower teeth on left. So my 6 months, good as new, has now turned into a year and a half. With that said, I had my 1st CAT scan and it came back "no evidence of disease". I wish you well and pray that you make the right decision for yourself.