diagnosed last week

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sarahoxford's picture
sarahoxford
diagnosed last week

My 16 year old son has just been diagnosed with Alveolar Rhabdomyosarcoma. We went to our gp in november and only got referal in march. He has a lump on the outside of his ankle, not painful but getting bigger. So far we know the mri shows the lymph glands are normal, and we are currently waiting for the bone marrow results. Then we will have a plan worked out. We think it is likely to be 4 lots of chemotherapy for 4 days at a time, before surgery. Afterwards we were told 6 more chemo, but on the possible plan we looked at this week it says radiotherapy afterwards, not chemo so I am a little confused. I would like to hear from anyone who has experienced similar diagnosis as. I am too scared to ask what the chances are he will get better? My son thinks he is going to die, and because it is the easter holidays the school don't even know yet. Dreading that phone call.

HettieH's picture
HettieH

Hi Sarah,
I am really sorry to hear about your news. I have had a very similar experience with my boyfriend in September last year. In June 2012 we were in Bournemouth and he fell awkwardly on the beach breaking a bone in his foot. He had already been complaining of pain in his foot and had an odd swelling but it wasn't that bad so he hadn't been to the doctor. But after breaking his foot, the swelling didn't subside and the lump was investigated. In September he was diagnosed with a Rhabdomyosarcoma and we later found out that he was at stage 4. The cancer had metastasised and spread to his lungs and groin. The doctors have said that he is terminal but they have no idea how long he has as the cancer is so rare. He has gone through a really intensive chemo programme, similar to the one you describe, where he was in hospital in cambridge for 4 days in a 21 day cycle, repeated 6 times. The first few were ok but the side effects gradually build up. I think you should prepare your son for this as there are so many side effects that you don't realise - Ali had really awful mouth ulcers for weeks which prevented him from eating properly and some days he didn't have the energy to get out of bed or even answer the phone. It made him feel really depressed as he had to leave work and he lost contact with some of his friends.
But, he has come out the other end now and the side effects ware off quite quickly. He's feeling much more like himself and just went on a spontaneous trip to Amsterdam with his brother! He is also having radio therapy on his foot, lungs and groin as he responded well to the chemo. And we are hoping that this will add quite a few months to his life. You said you were a bit confused about the radio therapy being on the plan - I think because the cancers are rare, the doctors have to kind of keep the plans flexible to see what works for each person. If the chemo is working well and the site of the cancer has been successfully destroyed, then radio therapy is a good option, but it's difficult to tell until the chemo has started, or even after it's finished. Ali was told he would have radio therapy every day for six weeks but this plan has changed and he's having 10 doses over 2 weeks followed by a month of recovery. I was a bit sceptical about radio therapy, but I learned from work that people who have a radio treatment are 70% more likely to survive, so it's really important (I work as an intern at Cancer Research UK in London).

You and your son have to be as positive as you can. Don't do too much research online as it will upset and frighten you, but also there are so many different stories and not everything is true. Make sure you tell your son that, because he may be fearing the worst after reading things online.
There is so much support available to you from charities such as CLIC Sargent, Macmillian and the Teenage Cancer Trust, and they will help everyone regardless of the circumstances.

I hope that my story has made you less confused and answered some of your questions. I wish you and your son all the good luck in the world.

sarahoxford's picture
sarahoxford

Thank you for your reply. Sorry about your boyfriend's diagnosis.
My son's bone marrow results are good, now we know the cancer hasn't spread. He had his first chemo this week, he went in tuesday and came home on thursday. He was very tired till yesterday afternoon and now he is back to normal, except his mouth is a bit sore, but not bad at the moment.
He has to go in for kidney check test, routine on tuesday, but is hoping to go to school the other days this week. His school have been brilliant. They will hopefully reasure him about his revision, exams etc.
This seems a very rare type of cancer.

Jacjaiarch's picture
Jacjaiarch

Hi @sarahoxford, my son was diagnosed with Rhabdo when he was 5 in 2005, his main tumour was in his neck just under his ear, the lump appeared out of the blue, came home from school one day and there it was, had never noticed it before, it took 6wks of being misdiagnosed, going back and forth to the drs, all this time the lump was getting bigger and spreading onto his face. After a biopsy we were told he had inoperable Rhabdo. It's been a long time but I'm sure he had the same protocol as your son, he also had 5wks of radiotheraphy to his head and neck at Addenbrookes in Cambridge. The Rhabdo had spread to the other side of his neck and they found a lump on his lung, after he had part of his lung removed it turned out to be scar tissue, possibly from a chest infection.
The chemo took its toll on him, had no energy, could hardly walk, wouldn't eat, would keep any fluids from his NG tube down. His Hickman line kept getting infected, ended up having it removed and a port fitted.Radiotheraphy caused his neck to blister and looked red raw, basically like he'd been burnt. He was given less than 15% of beating the cancer, thankfully after the 1st round of chemo the lump started to shrink. He finished treatment Jan 2007, the lump had shrunk to less than 5cm and hadn't changed since the April 2006, therefore they said it was dead tissue. Well it's now 2013 and I'm so proud to say that he kicked cancers butt and is now a typical 13yr old, was given the All Clear 2011 6yrs to the day he was diagnosed.
Due to the location of his main tumour and the radiotheraphy he does have some health issues, his thyroid is basically non existent therefore he's on thyroxine, he has been on growth hormone injections daily for the past 5yrs and he was recently diagnosed with Adrenal Insufficiency, so he had to take hydrocortisone 3 x's a day and carry an emergency injection of intramuscular hydrocortisone.
I hope your son kicks cancers butt, stay strong, it can be very difficult, those days were the darkest days of my life and were a blur, I'm not a strong person at all, but somehow we got through it. Take care.x

Lynnex's picture
Lynnex

All the best and positive thoughts . It is rare and nasty cancer , but so good to hear more positive stories too. My son was diagnosed with Alveolar rhabdomyocarcoa in 2007 tumour next to carotid artery and inoperable. Treatment was hard , the side effects are hard , but i know we had to give him the chemo and radiotherapy. Right now he is on growth hormones and as working memory problems, though the side effects still scare me, i have my son with me. All the best to you all xxx

simoncross's picture
simoncross

Our daughter Hannah was 11 when she was diagnosed with Alveolar Rhabdo in Aug last year. She had been feeling unwell for a while and had trouble going to toilet but despite visits to GP and 2 local hospital visits nothing much was done until we had specialist outpatient apt at QMC hospital in Nottingham. They admitted her the same day, following day had MRI and the day after that we were given the devastating news that she had a large malignant tumour in her pelvic region - no wonder she had trouble going to toilet! The very next day she was in theatre for a biopsy and hickman line and started her chemotherapy treatment soon after. Overall she had 9 cycles of chemotherapy between Aug and Feb and finished off with 28 sessions of tomotherapy. She has now completed 8 cycles (of 12) of maintenance chemotherapy. It has been a tough year for all of us, especially at the start when we first found out but bizarrely you quickly get into a routine and adapt to your new 'normal' life! Hannah had been due to start secondary school last Sept but missed a significant part of her first year, now back full time and hopefully no worse for it. Her last 2 MRIs have shown that the original tumour has now gone and there are no growths anywhere else so we take hope from the fact she responded well to the treatment, unfortunately as expected there have been known side effects and there will be those we don't know about yet but staying positive and taking each day as it comes. Cancer is horrible and its not until you are in this new world that you realise how many people are affected, but it can be beaten!!! Best wishes to everyone.

sarahoxford's picture
sarahoxford

Update, Elliott had 4 x IVA with extra weekly vincristine up to 3rd lot of main chemo. The tumor had shrunk an enormous amount but Elliott chose, at the pre-op meeting to have a below knee amputation, as the position of the tumor meant the main nerves to foot were going through it which would have resulted in a useless leg and lifetime limp. He's had 3 of the 5 IVA (post-op). We know there was clear margins from the op and bone marrow / lymph nodes not affected. One of the comments above said that radiotherapy increased chances of staying cancer free, but this will not be an option as nothing hopefully will be there to do radiotherapy to? Is this correct and does this mean there is a greater chance of cancer recurring? Advice much appreciated, thank you.

simoncross's picture
simoncross

Hi Sarah, I think the problem with any cancer type is that each and every case is different, even those with alveolar rhabdo. Hannah's tumour was in her pelvic area so not in an area where surgery was an option so she had chemotherapy (IVADo) and 28 sessions of tomotherapy (a newer type of radiotherapy) which was directed at the tumour site. Although she had this, not sure it means there is less chance of the cancer coming back, also she had some nasty burns during the treatments and we don't know yet what long term effects there will be. No matter what the treatment or outcome, being in this situation as a parent is not a good experience but there are others going through it too, something which I've found that although friends and family are supportive, they don't actually know what its like. I stopped a while ago trying to compare Hannah with other children because there are so many variables so just try and be positive now.

gracie's picture
gracie

Hi Sarah, I have returned to this site after a couple of years absence, my son had a rabdomyosarcoma feb 2007, age 8 years, 4 visits to Doctor 2 to dentist, the usual, I apologized for returning at one point. His protocol was the same as your sons, but he had 30 radiotherapy because the chemo shrunk the tumor so much they did not remove it, it was dead tissue. I know what you meen about asking questionsI was the same, the day they told us over in Alder-Hey Liverpool, they ask if we wanted to know anything I said "no nothing" I was so scared this forum helped so much, there were lots of people who had been through the same, children with rabdo,s one lady was 29-30 she had been diagnosed at 5 and she was doing fine no side affects. My boy has a few side affects from the radiotherapy but he is in the top set at school doing GCSE,s and gaining As & A* I could not be more proud, cancer treatment for children has come a long way, I hope Elliot is not afraid anymore, so many people now had cancer as children,we all just need to talk about it, My boy got the all-clear in April, just yearly check-ups, now the fear still lurks in the background but nothing like it was, good luck to you and your son sarah, and stay strong. Grace, x