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.


  • CivilMatt
    CivilMatt Member Posts: 4,698 Member
    little bit of help

    It sounds like you have already completed a lot of research on your cancer, to the point it sounds confusing. As for Proton Beam Therapy, I probably have the same information as you found about it. It is a form of external beam radiation that uses protons rather than electron X-rays to treat certain cancers. The physical characteristics of the proton therapy beam allow the radiation oncologist to more effectively reduce the radiation dose to nearby healthy tissue. Proton therapy is available at only a few centers in the country and is used in unique clinical situations. That doesn’t tell you much other than it sounds like a good way to receive radiation if you can find a place to administer the therapy. The information I have does not mention what types of cancers are good candidates.

    If your doctors are confusing you, maybe you should get another opinion on your next step. Maybe one of the wiser folks on this site might dissect your thread and give you a more concise answer that I have. The surgery you describe I’ve read about on here before so it is not unusual.


  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    question for you
    since the concensus is that these mostly behave in a benign or borderline fashion, and that recurrances tend to be local, if any, what about your situation makes you think of any additional therapy? Proton therapy is just another way of delivering radiation. Granted, if you are trying to finely nuance your treatments, it may have some advantages over traditional radiotherapy, but even so, the side effects are pretty disabling, and can last a lifetime. Unless there is more to this situation, I wouldn't invite trouble beyond what you've already had. You appear to have a favorable prognosis without additional intervention.


  • Skiffin16
    Skiffin16 Member Posts: 8,304 Member
    Proton Therapy-vs- IMRT
    In most reading that I have done, I don't think the end results have proven themselves if indeed Proton Therapy is that much better than IMRT which has proven itselve.

    New techniques in radiation therapy for head and neck cancer

    I would definitely consider treatment over do nothing and see what happens.

    Myself and many have had IMRT and the results for many have been life saving in combination with other forms of treatment..chemotherapy and surgery.

    Many of us have very minimal long term side effects, but some do have significant side effects. I think overall the many with minimal long term greatly out weigh the few.

    If you trust your MD's and facility, I'd limit my self research on the internet. Many articles you read are old stats and not that great of information for todays scenarios.

    If you aren't confident in your MD's, as mentioned seek other opinions with in the medical community with experience with your particulars.

  • ToBeGolden
    ToBeGolden Member Posts: 695
    I've had the rather common squamous cell carcinoma of the neck. After a total laryngectomy, I had a course of rads and chemo. The reason for the rads/chemo was that not all of the tumor could be removed by the surgery. In your case, you did not mention whether the surgery got all the tumor. In my opinion (and I'm not a doctor), radiation only makes sense if the location of a tumor is known. Where are they going to point the radiation?

    If you have a known tumor remaining after the surgery, it only makes sense to have it treated. I will let the doctors suggest rads or chemo or both. If you don't have a known tumor, then you're in the wait and see category with a lot of us. I'm in the wait and see category myself after my last round of rads/chemo. Wait and see can mean imaging and sometime biopsies, depending upon what part of the body is being watched.

    Of course, the doctors may suggest chemo that will target any cancer cells that spread from the original tumor, even if they are too small to be seen on imaging.

    With such a rare cancer, there will be little information about how often or how long it should be followed. Hope my thoughts help. Rick.
  • katenorwood
    katenorwood Member Posts: 1,912
    Don't consider that you are bothering any of us !
    Hello !
    I too have a rare form of H/N cancer, that not much is known about. It is totally frustrating. I also was told that radiation, maybe would or wouldn't help me. I had a standard Tomotherapy....kinda like a CT machine, they could take pictures before and after. I wish I could give you a web site to look info up on your specific dx. That's what I did. And I made sure it was a repretable one. Also, you do have time to get a second opinion...if your type of insurance allows for it. I know being from Canada, the way they handle things is different. But it is VERY important you have trust in your doctors ! I recently made a change of clinics to one that specializes in my dx....which is adenoid cystic carcinoma. Money is definetly an issue for me too. Please don't ever worry about bothering any of us on this site. I feel even though we may have different forms of cancer....we're on the same boat ride. I hope some of my suggestions are helpful...rare cancers here in the states gets about 1% funding for research. It is what it is. Also ask about tumor profiling for targeted medicine. As of this date all of mine are in the trial chemo will work on my specific dx...but maybe yours ! I hope others with this specific rare cancer post soon ! katie