7yo just diagnosed with rhabdomyosarcoma in head!

message: hello,
My son was diagnosed with a different form of sarcoma in dec 07, and is still going strong nealry two years on!!
As far as i know, sarcomas are roughly 20% of all childhood cancers, so rhabdo comes under that unbrella, so while its extremely rare in adults, its not so rare in kids!
Whatever you do, dont go looking for info in the net, it just scares the life out of you and 9 times out of ten , is out of date and inaccurate!
There is a sarcoma carers support group( on line) just go to sarcomauk website to find it, there is a fella called guy on there, whos son jotn was diagnosed with rhabdo about three years ago, im certain he would be happy to chat to you!
hope this helps, i know that right now, all seems lost, but there will be light at the end of the tunnel, youve just got to believe it
aly x

message: Hi,
My son was 5 when he was diagnosed in 2005 with Rhabdo.The main tumour was in the side of his neck just under his ear.At first dr's thought it was mumps,but after 2wks and the lump getting bigger and spreading onto his face we took him to a&e.This; time they thought it might be TB the type thats found in animals,or a blocked saliva gland.Anyway 5wks after first getting the lump and having a biopsy we were told the devastating news.The next day we travelled to a different hospital (Addenbrookes Cambridge) to meet his consultant and for Jack to have all the tests and scans.There they found more tumour on the other side of his neck and after looking in his mouth they saw that the main tumour was pushing his tonsils over to the other side of his throat as it was so large and inopperable due to it being so close to his brain.He was given less than 20% chance of survival.He had a strong course of Chemo and 5wks of Radiotheraphy.And here we are nearly 4yrs Nov30th of dianosis and he's doing really well.He has been in remission nearly 3yrs.The tumour shrunk to 1cm,which is dead tissue,and scans have shown no change since April 2006.The only medication he is on now is growth hormone as the radiotheraphy has stopped his gland from working,therefore his body isn't producing any growth hormone.I can totally understand how you are feeling right now,it is the worst news anyone can give you,and the pain is just unbearable.I hope everything goes well and your son is fighting fit again very soon.Take care Beckie.

message: Dear hewittjody, (jody)
I am so sorry to hear your news. Our son Timmy was diagnosed with Rhabdomyosarcoma in June 2008, his was in his skull, sinuses, throat and nose. To answer your question if this is rare, I feel that is is, but when cancer enters your world, it seems more common, but it's not common, you just hear alot about it. That aside, My son went through a year of Chemotherapy and radiotherapy and he is brilliant at the moment. He finished chemo in Jan 09 and since has been clear, he's not out the woods yat, but so far so good. You have a mountain to climb ahead and Whatever you hear may help or not, but my advise to you is to STAY AS POSITIVE as YOU CAN, there will be tough times ahead, emotionally and physically for him especially and for you all also, but keep strong and trust your instincts and the fact that the Oncologists are all on your side. If you ever need to talk or a listening ear, I am more than happy to give you my number if you need it. It's so hard, but you will get through. Love and best wishes, Kate Mason and family. (Gloucestershire)

message: Thank you everyone for your help. His is paramengeal (sort of everywhere down the one side of his face) behind his sinus middle ear etc. The doctors confirmed it is an paramengeal embryonal rhabdomyosarcoma. He is set for 6 months of chemo ifofamine, acticyinin d and viscritine (not all spelt right). Its so good to hear from people who have been through and are goig through the same thing. Kate thank you it is so good to hear from someone who is suffering exactly the same thing, from what I heard because stephens sarcoma was in the paramengeal region it made it more severe but thank god it hasn't spread.

message: Dear Hewittjody, sorry to hear what you are going through. My son was diagnoised with the same tumour jan 07, I beleave it means "soft tissue stripped muscle tumour" and are mainly found in the head and neck area. I was also told the cancer treatment has also come along way in treating children, my sons was in his face (sinus), he was also 8yrs old.He is doing fine now and has just started high school, we have regular 3-4mth checks, so far so good, this forum really helped me I hope it will help you to, good luck. Gracie.

message: Hi hewittjody,

Sorry to hear of your son's diagnosis and do know how you're feeling, especially in those first few weeks after diagnosis.

Our son also had rhabdomyosarcoma in his head (called parameningeal) and was also the alveolar (more aggressive) type of rhabdo.

As others have said, it is rare but now that cancer is in your life at such close quarters, you will find cancer to be everywhere. A day does not go by without a reminder of our son's cancer or seeing a cancer story in the news or something else.

You've a tough few months ahead of you and the doctors will do all they can to help you. Ask all the questions you have to the nurses and doctors around you - don't ever feel it's a silly question as this is your journey and you are representing your son - so therefore no question is silly.

I wish you well and you're in my prayers.

PS. Hi Kate (timmy2004) - was wondering how you guys are!

message: My daughter was diagnosed with alveolar rhabdo in May this year - on the right side of her nose. She turned 4 in July. Greg and I also have a 15 month old son. She is in the high risk group as we found another lump on her neck. She is nearly through the 6 month chemo cycle - her 9th chemo to go at the end of this month. She also had 6 weeks of radiotherapy to her neck and face. The lumps were both cut out surgically so we do not have any tumours to see shrinking from the scans - just waiting to see if they grow again.

It has been a rollercoaster and then we moved into marathon status I think. I am the sort of person who questions everything and wants to know about all potential possibilities before they might happen - it is then that I can prepare for them. This has left me tired and distraught to be honest and I'm trying to learn how to live with uncertainty. How have others coped with the anxiety pre scans to check if it has returned? If it returns on the original site on her nose then the main option is to cut it out with a margin which will disfigure her.

The other longer term issue is that her face will not grow post radiotherapy so that is going to be challenging to help her manage as she grows older. We haven't really been given a clear indication of what this will be like perhaps as that is not possible from the hospital. Has anyone else seen their child grow up post radiotherapy and how has it impacted on their child and family??

Many thanks Suzanne 39

message: Hello Suzanne
This is such a worrying time and it doesn't matter what anyone says, you will still worry.
My daughter also had alveolar rhabdomyosarcoma in her nose, with a spread to her ankle. She was diagnosed when she was 12 and is now, to our delight, 18 months in remission.
The treatment is awful and as you will know only too well, you live on a knife's edge, not being able to plan more than a few days ( or even a day ) in advance.
The potential possibilities the future holds are endless and it is so difficult not to dwell on them. However, we have to be told of the possibilities, but in reality any or none of them could happen. We just don't know, and that is the hardest thing to come to terms with. It is exhausting having to continually brace yourself for some real or imagined bad news.

I rest in the knowledge that the follow up care and investigation for my daughter is excellent. If I allowed myself to imagine all the things that could happen, I really would go mad and not get up each morning.

My daughter now has scans every 4 months ( we are waiting for results of last weeks scans ) and the wait doesn't get any easier. I have a pit in my stomach - especially as I now see my lovely, healthy daughter enjoying life again. However, the trips to the hospital have become less frequent and, whilst I don't go a day without thinking about the past and the future, the cancer does not rule our lives like it did.

I wish you and your family well as your daughter comes to the end of her treament.

Cath

message: Hi Suzanne,
My son Jack has been in remission from Rhabdo 3yrs this month.He had 5wks of radiotherapy toboth sides of his neck/face.And we have noticed a big change in the shape of his face.His bottom teeth are alot further back than his top,he finds it difficult to open his mouth wide.And his teeth are poor,has had afew removed and they don't seem to have grown back yet.He is on Growth Hormone Injections as due to the radiotherapy his thyroid gland isn't working therefore not producing any growth hormone.We spoke to his consultants a couple of days ago about his face and we've got to go and see a specialist as to what they can do,this usually will be breaking the jaw and moving it forwards,plus see an autherdontist (sp).So we've still got a long,long way to go,i just really feel for my son as he's already had kids at school ask why his face is small,i just hope that when he goes to high school he isn't teased about it.

message: "Dear bkharding
Thanks for your reply. I'm sorry to hear your son is having changes
in his face post treatment as he grows older - it is useful to hear
though and how the hospitals might help out with it.

The teasing is something I'm very alert to for my daughter. She's
just started school and first went in with a bald head, then a pink wig
and I finally persuaded her to wear a blonde wig - like her original hair colour. I've noticed lots of curious comments from other children and questions from other parents.

She was just 4 when she had the radiotherapy treatment. Do you mind
me asking how old your son was as I think the age of treatment makes a
difference to how small or different a child's face might be - less
growing time before it's treated. The hospital here has suggested
monitoring, seeing a specialist dentist and maybe facial
reconstruction at the age of 14. That seems like a long time for us to help our daughter manage any teasing etc. This is also balanced with the thought that I hope she lives that long. Good luck with the dentist! Suzanne

message: My daughter also had a paramenengial embryonal rhabdomyosarco, she has been in remission for 4 years now and doing really well. She was only 4 when she ws diagnosed, and after a year of chemo and 6 weeks of radio, numberous biopsys (they tried operating but to no avail). She has her growth hormone injections every day, and is now enjoying a relatively normal life. My thoughts are with you all