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

http://www.dana-farber.org/Adult-Ca...ma-and-Bone-Cancer-Treatment-Center.aspx

Dr Lewis' paper was on the Dana Farber website. They have a highly regarded sarcoma center also. I included the link because they mention treating patients with fibrosarcoma.

Anne

Rachel,

See, you already have so many people here ready and willing to help. Although it sounds like you are in good hands at the head and neck cancer center in OZ, a second opinion is always a smart move that could make the difference between life and death.

As others have suggested, you may want to contact the doctors mentioned at MDA and Dana Farber in Boston. I live in greater Boston and would be glad to help in any way I can.

Best of luck and keep us posted,
Kerri

Hi Rachel,

Firstly, I am also new to this forum. I just stumbled on it today and saw your post. 18 months ago I was diagnosed with Fibrous Sarcoma of my left maxillary sinus. Yes, it is very rare indeed, very difficult to deal with and is not caused by lifestyle. I had all the tests that you mentioned and this was followed by I had an operation. Unfortunately, last year my tumour came back - which is again unbelievably rare - but I have managed to get through both well. I am getting stronger now and looking forward to getting back to normal (as much as possible). I'm also from Australia, so if you have any questions, don't hesitate to ask - I'd like to be of help. All the best to you.


Margie

Hi Margie ! Welcome to you too! I'm glad you're here to offer your own expertise. Tak care both of you. And sorry about the recurrence.

Hi Cheryl, thanks for your message. I've been looking around the site and am amazed at how many people are experiencing what I've been through. When you're told that what you have is "very rare" its difficult to find people who understand, let alone give advice! This site is great.

I guess the treatment is similar, ultimately it's all cancer. And usually at least someone here has experienced something similar to anything you may be going through it's a pretty diverse and great group here... And we have quite a few members from oz.
Take care... Glad you're healing it's a slow process as you know!

Welcome to OCF Margie from another Aussie in NSW,
You may have seen a post I made earlier on Rachel�s thread. So glad that you found us and are here to help her.
As you and Rachel both say it is a rare cancer so I am sure she will be happy to see your post and take you up on your offer.
Let me know if you need any help navigating the site- for instance if you want to start your own thread for asking questions (if you have any).
Then again I see you have done a wonderful job creating a signature so I suspect you will do just fine. In any case if I can be of help to either of you please let me know.

Hi Margie, Thanks for your reply. This site is absolutely wonderful with amazing and caring people however its definitely comforting to hear about other people who have experienced the same cancer, especially as its so rare. It sounds like you're back on track after your recurrence, which is great

I am in the middle of getting tests (MRI & PET today, CT and X-ray tmrw) and I will find out what the plan is on Friday.

Rachel

Hi Rachel, keep us informed, and hope you get the best results as you can!

Hi Gabriele,

Thanks for your warm welcoming message. I will certainly contact you if I need any help making my way around the site!

Rachel,

Good luck with your tests and results tomorrow. I hope the results are the best they can be and I also hope that you have as wonderful a medical team around you that I had. Once again, I have been where you are - and not so long ago - so don't hesitate to contact me if you wish to.

Best wishes, Margie.

Hello everyone,

Good news, doesn't look like cancer has spread Cancer is in both soft tissue and bone of jaw so Im having surgery in 3 days to remove part of my jaw bone and replace with a bone graft from my hip. Will have tracheostomy and NG tube for a few days and home from hospital in 7-10 days. Radiation will likely follow the surgery. Will be a big op and recovery but I have a great team working around me and wonderful family and friends.

Thank you all for your kind wishes. I hope the same for you too.

Hello! Good luck and hope you get well as soon as possible. Im also young and i know how hard it is to be in situation like that with a whole life in front of us. Be optimistic and think that soon you will be healing and happy!

Best wishes!

Ps.: i also used ng tube!

Hi Rachel,

That's great news that it hasn't spread! I had a very similar operation to you including the trachie, feeding tube and my graft was from thigh (14 hrs). It must seem quite daunting to you now (I was very scared before it), but it is completely do-able.

While its awful to have to confront this at your young age, it is actually your youth that can help you to heal better/quicker as well.

I found a whiteboard & pen help with communication after surgery and I found using the "thumbs up/thumbs down" sign language when the nurses asked me a question really came in handy. Oh, and don't forget to ask the nurse for painkillers before your drains come out of your neck & hip (just before you go home).

Anyway, I'm sure you have enough to think about so I'll go and just want to wish you the best for a successful surgery & your recovery.

Cheers,
Margie

Hi Rachel,
Best wishes to you over the next few months. It sounds like you are facing the challenge head on with a wonderful attitude. That is 90% of the battle.
Prayers on Monday. Let us know how things are going as you can.
Blessings,
Kathy

Hi best of luck on the surgery the trache sucks!!! Been there hated that the most!!! (next to rads!) Martum is right, white board, pad of paper, iPad ... Etc... communicating is hard. I had a similar surgery except they rebuilt my tongue - 14 hrs. Trache (ack!!) feeding tube, and out in 10 days (time off for good behavior?) I was told 10-14 as well. We'll be sending good wishes and prayers your way on the day of - lets us know how it goes! Hugs!

Wishing you all the very best with the upcoming surgery Rachel.
I am also familiar with the tracheostomy and NG tube having both when I had my original 14 hour surgery.
Glad to hear that you are happy with your team, family and friends. It all goes to making it more doable.
You also have some great tips from Margie and Cheryl including the whiteboard which I also used to communicate.
Getting the nurses to suction the tracheotomy site when it needed doing was sometimes difficult when they were busy. After a few days (and the worst was over) one of the nurses showed and set it up for me to do it for myself.
Please update us when you are able�..again thinking of you and wishing you all the very best.

Hi everyone,
I'm home from hospital after 8 days. Surgery went well, hated the trachie the most but luckily it only lasted for 2 days. Started liquid diet 6 days post surgery, and feeding tube came out on day 7 (woo hoo!). I have moderate pain and lots of bruising on my hip (had hip bone and muscle graft) and quite a bit of pain in my mouth but I'm doing pretty well overall. There is still lots of swelling outside my mouth which could take months to go down, if at all. The swelling inside my mouth is not great and makes it had to swallow but I'm looking forward to that going down over the coming days/weeks. I will find out if I definitely need radiation in a weeks time. Until then, I'm on pur�ed food, lots of rest and recuperation. Thanks for all of your concerns, I hope you are all doing well. If anyone had advice/tips on this post-surgery phase, anything from oral hygiene to food ideas to waiting on radiation results they would be extremely appreciated
Rachel

Great to see that you are home Rachel and are already able to eat-all be it a liquid/pureed diet.
If you put pureed in the search box top right you will come up with lots of reading with suggestions by many who have been there/done that including me
You may want to have a look at this link where Christine has listed a lot of possibilities.
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
Good luck with the healing and keep asking if you have any questions. There are heaps of us here to help

glad you're home and doing well! Try investing in a water pick you can use I on th lost setting with the tongue cleaner tip - i add. Bit of non alcohol all natural mouth wash and it shoots it around my mouth and leaves you feeling fresh - lik a shower for your oral cavity... Good luck.

Hey Rachel,

Glad to hear you are home and the operation went well. It took about 9 months for the swelling in my face to go down completely, but it eventually did. I am now looking forward to some reconstructive surgery this year.

I'm not sure by now if you know whether you'll need radiation, but I'd recommend you eat as much as you can before the radiation starts. This is mainly because you may lose your taste buds and/or the inside of your mouth feels like its very sunburnt making it difficult to eat. I would highly recommend getting 'Sustagen - hospital strength' from the chemist as it is great stuff with loads of protein (which you probably know helps with healing). I still have 3 scoops daily in my banana smoothie.

As far as oral hygiene goes, the nurses gave me a home-made recipe for mouthwash: half teaspon baking soda/bicarbonate, quarter of a teaspoon of sea salt in a glass of warm water (pre-boiled if your newly out of surgery). You can add mint leaves to help the taste. Also, Colgate have just released a mouthwash for dry mouth sufferers (I have extensive dry-mouth due to 2 x radiation on both sides of my mouth) and the mouthwash also has extra fluoride... which you need more of if you have dry mouth because you no longer have saliva to help protect your teeth.

Also, when I started cleaning my remaining teeth after surgery I started using cotton-tips/ear buds then progressed to a childs soft toothbrush until eventually I could clean them as normal.

Oh, and I used to make up my favourite stew as normal and then put it in the blender... it didn't look good, but it tasted awesome!!

That's probably enough from me at the moment... I hope you continue to heal well and I hope that I've been of some help.

Take care,
Margie