Hello Everyone!

I'm 23 and have just been diagnosed with Ewing's Sarcoma in my left femur. I believe it's quite a rare form of cancer but just wondered if anyone else here is also dealing with a similar diagnosis. I'd really like to chat to someone else going through what I am!

I'm so gutted that I'm going to lose my hair but I guess it's a small loss in the grand scheme of things! I'm finding it really hard to see how upset my family and friends are getting so I just wondered if anyone else had found this?

In many ways I'm relieved as I've been suffering with pain and difficulty walking for a long time for which i've had many suggestions to what it is! Hopefully this will be the end of that and I can look forward to better times ahead!

Any response would be greatly appreciated!

Luke 

Hi Luke

I have recently had bone cancer but unfortunatly not the same type as yours so cant be much help in that respect.  However I do understand how you feel about the impact it is having on your family.  It is very hard trying to cope with their grief as well as your own, trying to be strong and up beat to spare their feelings can be exhausting and leave you feeling helpless and guilty for causing so much pain ( well this is how I felt).

Glad you finally have some answers as knowledge always allow you to cope and deal with what life has thrown at you.  I hope your treatement goes well and you become a cancer survivior as I have done.  Be good to yourself and if you are having a bad day dont keep it to yourself, talk to your friends, family, people on here shared grief is more healthy than bottled grief. 

what hospital are you under for your treatment?

Regards Diane

Hi Diane,

Thanks for your reply. It's like a rollercoaster of emotions really isn't it. A lot of the time I just want to "run" away (if only I could still run!).

I will be having my chemotherapy at Southampton General Hospital and later surgery at The Royal Orthopaedic Hospital Birmingham. Where abouts were you for yours? The only plan I have is to be a survivor like yourself = D

Luke

Hi Luke

I know what you mean about the running I fear my running days are over but then that could just be my age :)

I was treated at the Royal Orthopaedic hospital in Stanmore, Middlesex excellent hospital very talented doctors. 

That sound's like a fantastic plan to me. 

The emotions bit can be difficult to deal with not knowing if you are on your head or your backside can be very unsettling for all involved.

keep healthy and keep fighting

Regards Diane

Hi Luke,

My name is Russell and I am 22.  About 18 months ago I was diagnosed with Ewing's Sarcoma in my right tibia and I am still undergoing treatment, so you will probably be going through a very similar experience to what I have been through.  

You are right about it being rare.  I have only met one other person who has Ewing's but it didn't originate in their leg so we could only compare chemotherapy treatment experiences.

When I was first diagnosed with cancer it was devastating but I found the hardest part was telling other people that I had cancer.  I hated meeting people I would only see occasionally and not knowing if they knew I had cancer or not as this could lead to some awkward conversations. I felt explaining it all the time was very draining and could be quite tough emotionally. So I dealt with this by telling my friends and family just to spread the news so that I was less likely to need to explain over and over again to countless people.  After all, when you go out to meet people you want to have fun and you will spend enough time hearing and talking about cancer in the hospital.

I don't know what you have been told about your treatment but I was at first told I would be getting 14 cycles of chemotherapy with a break for surgery. You may also be asked if you want to participate in a clinical trial.  Currently I have had 20 cycles of chemo as the Ewing's had started to spread to my lungs and I am awaiting a cycle of high dose chemotherapy in the coming weeks to hopefully end it once and for all.  I also had surgery after 7 cycles to remove the tumour and the bone it originated in.

I know you are probably being bombarded with information and a seemingly endless number of appointments at the moment.  If you need to ask any questions about treatment, surgery or even some of the little procedures/tests they do, just ask me and I will try my best to answer them.

All the best,

Russell

Thanks again Diane = )

Well Russel it's sure good to hear from someone else, when you can't find others it makes you feel even more alone than you already do!

I don't know if there's an easier way to communicate with you, not sure how to private message on here - be good if you had an email address or facebook or something so I could ask  you a few questions if you were up to answering some.

Currently I've been told I will be having 3 days of chemo followed by 3 weeks off inbetween. They said 5 cycles then surgery to remove the affected bone and then a further 6 months of chemotherapy and possibly radiotherapy.

At this moment in time I'm pleased to say as far as they can see it hasn't spread to any of my organs, although I've had it for 18 months, it has however spread to the muscles surrounding my femur and there is a slight bit showing on my pelvis. I'm pretty positive as I don't see an alternative, I cannot hide from this, I have to get on with it and face it full on. 

 It will not take me down! I hope your treatment is going well, at this point I feel like I'm sat doing nothing, strangely keen to start the chemotherapy just so I can feel like I'm standing up to the cancer.

Look forward to hearing from you somehow!

Luke

Good to see you are so positive from the start!  Your plan for chemotherapy also seems similar to what I started on.

You should be able to send private messages now by clicking on my profile.

Any questions just ask.

Russell

Hi Luke,

My fiance had Ewing's Sarcoma and yes, it is very rare! Sadly he died in January (I know, not what you need to hear but his Ewings was VERY advanced when he was diagnosed and started in his pelvis so his chances were slimmer than most) but he survived two years and went through lots of different treatments.

I know it's not the same as someone else living with the same disease but it was a battle we went through very much together and I was very involved in treatment decisions, managing side effects etc. I am also studying cancer biology at university so if you want an extra person with a fair bit of knowledge of Ewings to talk to just let me know. 

Also, you sound like you are attacking your cancer diagnosis with a positive attitude so you would be a perfect person to join in with a photography project I am working on in my fiance's memory. If you're interested there's details here: http://alfiesadventures.wordpress.com/

If you are not interested, absolutely no worries!  

Oh, and as to the hair loss, my fiance lost his hair on some chemo treatments and not during others so you may be lucky and not lose yours at all. But if you do don't feel bad for being upset by what people will tell you is a small loss in the scheme of things, it adds insult to injury and it's okay to feel sad about it.

Good luck and keep your chin up!

Ray