Hi everyone. I'm brand new to this forum and have just been diagnosed with an oral fibrosarcoma. The surgeon said it is a very rare form of cancer. Has anyone had experience with it?

We don't know much at this stage but I am getting some tests (MRI, CT, X-Ray and PET) done this week to determine how it should be treated.

The diagnosis was a bit of a surprise as I am a healthy 23 year old who has never smoked and doesn't drink, and my first biopsy came back as a benign fibroma. If anyone has any advice on managing these early days, or if anyone has had experience with fibrosarcomas then I would be very grateful

Cheers,
Rachel

Hi, Rachel
Welcome to our forum - sorry you have to be here. I'm not familiar with oral fibrosarcoma. As as managing the early days, my husband (the patient) did well and took it one step at a time. I got lost in the hospital trying to find the parking lot.

My husband was able to manage the hard time between the diagnosis and the beginning of treatment by focusing on his work (which he loves), and on books. Facebook was a great distraction for him, as were phone conversations with his sister. Our morning walk with our dog was an important, pleasant time every morning.

Maria

Welcome to OCF, Rachel. Sorry but we dont see alot of your type of cancer. But thats not to say we still cant offer you some assistance. If you will be having surgery and chemo/radiation its still going to be similar to what SCC patients go thru. Best wishes with everything you are facing!

Hello, Rachel.

I'm sorry you have to be here, but I'm glad you found us. I did a quick search for fibrosarcoma and I came across this physician's name. She is at one of the USA's best CCCs (comprehensive cancer centers). I realize that you live in Oz, but I would urge you to contact the doctor for a possible referral to a specialist close to you. Better yet, if you have any family or friends that live in the States, you may want to make a trip here for at least a consultation. This is indeed a rare form of cancer and even the CCCs only see up to a handful a year. You want to make sure that you attack this disease full-force, no matter the expense. This is your life. A good prognostic factor is your young age.

There may be people who know more about finding places to stay close to a CCC at low cost to you. Sometimes, the hospital may have a list of people who are willing/able to provide residence during cancer treatments. There are many people on these forums who have traveled to distant places to get the best treatment and therefore give themselves the best chance of survival.

I wish you the best of luck in your diagnosis and treatment plan. Here's to hoping for the best possible outcome and beating this thing into submission! Please keep us posted and keep coming back for more information/support. The people here are amazing!

With care,
Kerri

http://www.mdanderson.org/patient-a...tion/cancer-types/bone-cancer/index.html

MD Anderson Cancer Center

Hi, Rachel,
I had not heard of this. I recently discovered I had a sarcoma tumor, a gastrointestinal stromal tumor (soft tissue) attached to my stomach. It had been there so many years (15? 20?--it's possible) growing extremely slowly. I was treated at MD Anderson for it, and have a great prognosis as it was extremely unaggressive. It is totally unrelated to oral cancer, although it might have been a factor in my body's immunity.

Sarcomas are rare anyway. My tumor, known as GIST, is the most common of the stromal tumors, but still only 5,000 people in the US are diagnosed with it per year. There are so many sarcoma type tumors that a lot of them are even rarer indeed.
Apparently you have one of those.

I did a search also, and was not able to find much. Kerri did not say so but I'm thinking she means Dr Lewis at MD Anderson, as that is the only physician that popped up with a paper on fibrosarcoma, not necessarily oral. I found an old reference to researchers at the Dental School in Adelaide, but nothing current.

My advice to you is to try to communicate with the experts. Because your type of cancer is so rare, I think you'll find they will respond. This was the specific link to Dr Lewis:
http://faculty.mdanderson.org/Valerae_Lewis/Default.asp?SNID=0

Here is her article: http://sarcomahelp.org/fibrosarcoma.html
It mentions head and neck fibrosarcomas--even rarer.

I know something about diagnosing sarcomas--that is not an easy thing to do & I imagine yours was even more difficult, which makes me think your medical care is competent, though they may not know a lot about fibrosarcomas. Does your doctor know of an expert in Australia?

(Keri, I don't know if you found additional information for Rachel or not)

Hope this helps!
Anne

Rachel,
I should have added please be proactive at finding experts. They may make a huge difference in how you do with this. You found us, so I know you've got what it takes to reach out.
Anne

Hi welcome - I too did the research thing, and do suggest that you make sure you are treated at a cancer center in OZ (or where ever - cancer center was the key word!) - I know my hospital has a center specifically focused on sarcomas - so imagine any large cancer center - that is both a teaching and research hospital will offer you the best treatment option... I'm assuming it's in the mandible? You didn't say... If so then maybe a mandiblectomy with a rebuild - a few here have been through that. You'll probably know more once you've been staged and know the differentiation. That will likely make a big difference in how the treat you. Well differentiated vs aggressive. Fingers crossed its small, and slow growing. Regardless we're here for you, and the treatment will likely be similar to what we've all had so we're here. Do do your homework, read up, and look at who's available and familiar with your disease in your neck of the woods. Try not to freak but do feel free to vent. Hugs!

Firstly, could I just say thank you all very much for your advice and kind words. I can't believe I was lucky enough to find such a supportive and caring online community

Kerri and Anne, thankyou and I looked at the links you provided. I had actually stumbled across the paper by Dr Lewis, but I hadn't investigated the Cancer Centre yet. They sound fantastic, especially the Sarcoma Centre. I am being treated by the Head and Neck centre at the Royal Brisbane and Women's hospital. I have been told they are one of the best teams in the country but in a cancer as rare as mine even my main specialist at the centre said he only sees 2-3 sarcomas a year (let alone fibrosarcomas). My cancer originates from my gum tissue (on the mandible), and my pathology report mentioned 'no bony involvement' (at that stage anyway). It has grown quite aggressively but its only been there for about 3 months. Being in such an obvious place I noticed it very quickly (thank goodness).

The centre I am being treated by has a special Head and Neck cancer clinic which I am attending this Friday. Apparently a team of people (surgeon, radiologist, oncologist etc) get together to review my test results, examine me and decide on a multidisciplinary treatment. I will ask if anyone has had experience with my cancer before.

Wishing everyone a good week ahead
Rachel

Welcome to the OCF forum from a fellow Aussie Rachel. There a quite a few of us here.
Dave1989 also from Brisbane immediately comes to mind even though his situation is closer to mine except for age as he was 21 at diagnosis.
I have no experience with fibrosarcoma but see that you are already getting some responses from the wonderful people here.
It is great to see that you are being seen by a multi-disciplinary team at the Royal Brisbane.
When this week are you having the tests and scans? When you do ask them how soon you can get your results as the waiting time can be very stressful. I will have a meeting (next Monday) with my surgeon after a recent biopsy but rang and got the basic information (no cancer ...yeah) after a few working days.
I will be watching for your posts and am hoping for good results for you.

Rachel,
By all means hear out what your current team has to say, but let me say sarcoma is a different animal from carcinoma--oral cancer. They do not react the same, are not staged the same, and do not necessarily respond to the same treatments. I would definitely want someone well acquainted with sarcoma on my case. I would also want to know exactly why they think fibrosarcoma. There are certain markers that sarcomas have, and different sarcomas exhibit different markers, so I would assume that would be it. They may well be correct, but just saying that it is a difficult diagnosis. Fifteen years ago, GIST tumor was frequently misdiagnosed, and remember while uncommon, it is way more common than yours.

By virtue of my GIST tumor, I am into the sarcoma center at MDA, although my surgical oncologist there is a gastroenterologist and sarcoma surgeon, and would not do a surgery like yours of course.

You know, it is amazing how many of these physicians will respond to you if you contact them. I had it happen more than once. With your sarcoma being so rare, I would think it would be worthwhile to try. The phone number given is I'm sure the Sarcoma Dept. number. One time I found an email on a paper on the internet and used it to contact the doctor about my GIST tumor before I was fully diagnosed (just suspicion from GI doctor locally). I got a helpful reply in 24 hours.

Best,
Anne