Brain Tumour Survivor

On January 25th this year, my 17 year old son was trialling to make his clubs Under 18's soccer team. He got red in the face and shaky during training but recovered after resting and resumed the trial.
I took him home where he ate a small amount of dinner and went to lay down. he came out 20 minutes later and said he had a pounding headache. He took two pain tablets and went back to bed. We went in with some water as we thought he had dehydrated. He then started vomiting and his eyes were bulging.
A trip to the local hospital where a cat scan showed a bleed on the brain. An ambulance ride to a major Melbourne Hospital where a drain was inserted. Next day ct scans, then mri's showed a tumour in his pineal gland. "Most probably not cancer"
Then testing of the spinal fluid..."We are sorry, he has cancer..." further surgery to try and get biopsy, unsuccessful. Sent home with an appontment for cancer hospital. Further mri's and blood tests. Radiotherapy discussed, start date given, mask made. Three days before it began..."I am sorry, we have cancelled the radiotherapy, we don't think he has cancer". Wait a month have another mri....Cancer doc says "It's not cancer, I won't treat it". Back to the neuro, cancer doc failed to send report and images, back again for another appointment...lumbar puncture, two attempts fail, back the next day, this time 1.5 hours for four vials. We are told.."We still think it's cancer, we need theses results to send to cancer hospital so we can start treatment." WHAT?????
Neuro was saying operation as tumour is affecting eyes and quality of life as my son is in a sports development program with FFV. Can only got to school 2 times a week due to ongoing effects. He wants it out.."I FEEL AS THOUGH MY LIFE IS ON HOLD, I CAN'T DO THE THINGS I LOVE AND IT'S HURTING ME".
Now they are talking AGAIN about radiotherapy.
So where do we stand...he has cancer in his fluid but not in his blood, the cancer levels aren't high enough to be cancer (WHAT???), the mri shows only minor highlighting on the outside of the tumour and if it was cancer the whole thing would light up (So, a bit lighting up means what exactly???) and we have a 17 year old who just wants to get on with life. Where should we go form here? Someone please help us...

Go and see Charlie Teo neurosurgeon in Sydney. He has had extensive experience with children and brain tumours. If anyone can remove the tumour, Charlie can.

Do that before you consider radiation as that can have long term damaging effects on the brain. At 17, with many years ahead of him that's not a great outcome.

Hi ,
Welcome to the forum, I agree with Mary, Charlie does work miracles with childrens Tumours or you can try my Neuro Dr Rodney Allan RPAH Medical Center Carillion Ave Camperdown he is a fantastic surgeon who has saved my life not once but 3 times. You WILL find the exit to the roundabout!!!! I know things are kind of crazy for you at the moment, but it does settle down a little in time, I know that all this is very daunting for your family and all very frightening so all the best to your son . STAY STRONG.
Stacy

Any recommendations for the Melbourne area. Currently under Royal Melbourne. Would like a second opinion.

One key to finding the right neurosurgeon is to realise most of them deal with spines and very few in the country do more than a dozen brain tumours a year. So keep this in mind when seeking a second opinion. Phone their offices and ask about their work.

From what you have said, I agree that getting a second opinion would be a good idea. Unfortunately, your son's treatment is only going to be as good as the specialists he is seeing. It will be difficult but try to stay calm when talking to them. This will help you choose the best options and specialists repond better.

If I was in your situation I would also not be shy about phoning the neurosurgeon's mentioned and ask whether they can make any recomendations. All the best! Please let us know how it goes.

Roundabout 70,
There are people who travel from NZ or UK to see Charlie Teo so I wouldn't expect a trip from Melbourne would be unreasonable. However, if you prefer someone local then I sincerely hope you find someone as good locally.

Mary

It's not the travel. It's the cost. We are a one wage family with three children. I would give anything to be able to afford the travel and the cost of the operation and hospital fees, but I have to be realistic. We have a mortgage that at the moment keeps going up. We have tossed up selling our house and using what is left after we pay out the mortgage to fund private care but then we will need to move and rent. our kids have two dogs and cats that have been with us for between 4 and 8 years. Finding a rental to accept these animals would be difficult and it would affect the kids badly to lose their loved pets. These animals have got the kids, my husband and myself through some pretty rough times. Their sense of perception is amazing.
Don't think I wouldn't give all I have to have my son treated well, because I would but there is more than just myself and my oldest son to consider.

I think that you are right to be realistic. I have heard of sad stories of people travelling overseas on false promises and losing everything.

Of course, that is not what we are talking about here. I'm sure I would feel the same way if it were my son. I would still in your position ring the neurosurgeons mentioned and see whether they are prepared to recommend anyone in Melbourne.

Go with your instincts. I admire the way that you have weighed up all the options and made the right choices for you and your family. Keep up the good work!

Hi,
I've got GBM and have had two successful surgeries under the knife of Dr. Jeffrey Rosenfeld who operates out of the Alfred Hospital. He is a lovely man and very highly regarded. He has private rooms Ph. 9866 6688. Hope this helps......Good Luck Lyn

Hi Roundabout,
The cost involved can be enormous although dont be shy to ask for help such as friends, family members, charity organizations and maybe hold a benefit night to raise funds for travel, accomodation, Doctors fees etc. Most Major hospitals will have a social worker that can find REAL cheap accomodation and the cancer council will provide $300 in food and petrol vouchers when needed.I dont know how I managed without the help of others as I too need to travel often for appointments and surgery.Hold your head up high and ask for help as there are people out there willing to hear and help you.
Stacy

Neuro appointment today for LP results. No malignant cells found!
Happy to review in 5 months with MRI and can return to normal activities except playing soccer.
May bleed again, may not. Not even sure if tumor caused brain bleed. MRI will check brain and the syrinx he has in his spinal cord.
I am still unsure about just leaving it there but my son is happy, so do I push for a second opinion?

I'm wondering if they now think it is a pineal gland cyst - http://www.nervous-system-diseases.com/pineal-cyst.html. Whether it actually is or not requires the right specialist to diagnose and is a medical opinion.

If it were my son I would want to be sure and probably still want a second opinion. Of course second opinions can be problematic if you end up with a new set of theories. I assume they want the scan in 5 months to see if anything has changed.

It sounds like they have given him a thorough examination and battery of tests. I would be surprised if there were any more tests required at this stage. So it just may be a case of finding the right specialist to review all the test results and scans.

I can understand why all the tests and doctor's appointments and different diagnosis (possibilities) would have your head spinning together with a sense of panic that goes with any diagnosis or any neurological condition - incl possibly brain tumour. I suppose it's some consolation that they've at least they've done a comprehensive range of tests for now and feel it's OK just to keep an eye on things for a while.

Sounds to me like they've put you on "wait and see". This is not uncommon with brain tumour patients (or any number of other neurological conditions for that matter). Especially if they've now ruled out malignancy via testing of fluid/blood etc,. It may be that the tumour/mass is more likely to be benign (these are not typically as fast growing as a malignant type) - hence "wait and see" how his condition is over the next few months and what the next scan shows in 5 months time. The only other test they could do is to get a biopsy of the tumour which would require neurosurgery - not as easy as getting a biopsy from some other parts of the body which might be more readily accessible.

Sounds like your son is happy with a break from all the doctors and tests for the moment and fair enough too as it's probably been very hectic. No doubt you'll keep an extra close eye on him after this and if symptoms return you'll need to deal with it then - back in the doctors or hospital.

A second opinion might give you some peace of mind but maybe see how you feel about it in a couple of weeks time once things settle down a bit and see how your son is feeling about it etc.

Best wishes and hope your son continues to feel well........

Hi Roundabout,

Know exactly where you are coming from. So confusing and stressful. Charlie Teo would also be my recommendation. He correctly identified and successfully removed a non-malignant intrinsic tumour in my nephew's brain stem when other specialists (both in Newcastle, where we live, and Sydney) said it was inoperable and gave him 18 months max. You can email your son's tests/scans to Charlie as we did and he will tell you whether or not it will be worth the trip to see him. If he tells you to come, personally, I would. You can gain appointments very quickly and there is accommodation available at the Ronald Mc Donald house (the whole family can come and I think it is free, from memory) and petrol and food can be subsidised. As for the op (should you need one) the cost for us privately (my nephew had no health cover) was $37,000 but you can go publicly where one of Charlie's associates operates under his strict guidance and he will intervene if necessary. I personally do not believe in leaving things to see how they will go. May be ok at 90 but certainly not at 17. A second opinion never hurts. Also it would set your son's mind at rest. I know what teenage boys are like (my own son is nearly 24) and some can be very deep worriers and put on brave faces or can be in denial - don't know which is worse. Seeing he has had a whole battery of tests done already I agree that it would be very unlikely to have any further, just the interpretation that is needed. In my nephew's case, all his tests had already been done, Charlie just provided a different and much more positive interpretation. Charlie can provide that other interpretation for you and may also be able to recommend someone closer to home. I really can't stress to you enough the brilliance of this man. If it were my son that is what I would do. Good luck whichever way you decide but benign can still be serious. In my nephew's case it would have been deadly. Don't want to scare you but I can read the concern between the lines as you write. A mother's instinct is always right. I do hope everything works out for you and your son. Life throws you bumps like this but it is possible to get over them, Good luck!!!!Things will get better, just hang in there. You are doing the absolute right thing with this forum. There are people here with a wealth of personal experience and knowledge. I learned far more from them than any doctor's appointment. The other thing too is that you really can't beat personal recommendations from a doctor's own patients!!! and Charlie's are always glowing!!


Sue