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.