Charles Teo and his work

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gavinlee
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Charles Teo and his work

Post by gavinlee » Wed Nov 30, 2011 3:24 pm

Hi everyone,

I'm very new to this forum and still learning about brain tumours. My father was diagnosed with GBM grade IV about 2.5 months ago. He had surgery to debulk the tumour as part of the diagnosis but responded quite poorly after the surgery. He was bedridden for many weeks with limited ability to talk and limited control of his body, and put onto palliative care, but in the last 2 weeks he's regained the ability to walk and some ability to speak.

This has given us some hope that we can start some treatment to buy him a bit more time. We've decided to head over to Sydney (we live in Perth) to see Dr Charles Teo. After sending his initial MRI and post-op CT scans to Dr Teo, we were informed by one of his neurosurgeons that it would be worth making the trip over to see him.

I've read many good things about him on this forum and in the media. However, as many people have noted, a number of doctors have told us that they would recommend against going to him. It's been very difficult to get an unbiased opinion of his work: Patients (who survive to provide comments!) are obviously biased, and so are doctors.

Does anyone have any unbiased advice they could give us about seeing him? Does he have a good statistical track record of actually improving quality of life and survival time in patients that we can observe? Does anyone have any negative experiences from his practice?

Would be good to get your thoughts - we're still figuring out our way around the system (and the confusion of opinions from doctors at the moment)...

Kind Regards,
Ga Vin

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kenobewan
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Post by kenobewan » Thu Dec 01, 2011 8:22 am

Hi gavinlee,

There is alot of polarised opinion about Charlie Teo. When I had my operation I didn't know that there are spine neurosurgeons and brain neurosurgeons. By far the majority operate on spines, but most will operate on the brain if asked - mine was in this category.

After I knew this I researched neurosurgeons. I thought why not take advice from one the best in the business, Keith Black at UCLA. I bought his book and he advises the minimum is 50 operations per year, but hopefully 300+ and specialises solely in this area. Dr Teo fits into the later category.

Obviously only neurosurgeons in largely populated areas have this opportunity. With Charlie the charge is not that he is incompetent, he does enough operations to disprove that theory, but that he take risks where the patient would be better to not given false hope.

Why not find out every neurosurgeon who does the prerequisite operations and at least get a second opinion? Have you heard of Gliolan? Three hospitals with ~20 neurosurgeons are trained to use this. I believe Charlie does not offer this.

It may help to discuss the options with someone. BTAA have a freecall number in Australia and information about Gliolan. The Cancer Council also have a support number, not brain specific.

Whatever your family decides all the best!

Ken.

gavinlee
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Thanks for your comments

Post by gavinlee » Thu Dec 01, 2011 11:14 am

Hi Ken,

Thanks for your comments. Really appreciate your thoughts here as we're still quite confused by the medical system.

Would you know where we could find out who the neurosurgeons are in Australia that would do over 300+ operations in this area per year? We've spoken to a couple of neurosurgeons in Perth already but they haven't really been very helpful - I suspect it's because they haven't really dealt with many of these cases...

Are there particular specialists who use Gliolan that you could recommend? It sounds quite promising but it's a pity it's not in wide use in Australia.

Thanks very much,
Regards,
GaVin

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Post by Jacquip » Sat Dec 03, 2011 1:55 am

Hi Gavin, Im in Perth too and was recently diagnosed with a Grade II Astrocytoma. My neurosurgeon is at SCGH (Prof. Christopher Lind)...he was brilliant. Well worth a visit to see him if you haven't already.
He did a biopsy but because my tumour is in the right p/lobe decided an op would not be the best option yet...just monitor the tumour and keep an eye on it to see if/when it goes to a grade III. Then the tumour symptoms may outweigh the symptoms of surgery....its all about balancing quality of life I think. I also sought a second option re radiotherapy from Prof David Joseph again at SCGH.
I was recommended Charlie Teo by my sister in law in Sydney but at this stage decided that I am happy with the treatment plan my dr's have suggested.
Hope this helps. I also got a lot from reading Dr David Servan-Schreiber (Anticancer) and also Dr Keith Block (Life Over Cancer) in terms of emotional support and lifestyle.

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Successful surgery with Charlie

Post by gavinlee » Fri Dec 16, 2011 12:04 am

Thanks very much for your reply. I hope you're faring well on this journey.

I just wanted to give a quick update on my dad for your interest - he's doing fantastically at the moment after surgery with Charlie. It's a world of difference this time as opposed to the last surgery.

My dad went into surgery yesterday, and was discharged today. Charlie did a full resection of the tumour, and clamped an aneurysm that they found while going in. Following surgery, my dad's now able to speak normally so the surgery has actually improved his function - which was unexpected!

My dad's now back with us, recovering at a relative's house in Sydney after a single day in hospital. It's been mind blowing to us - my dad was left bedridden for a couple of months, and put into palliative care after the last surgery that was done. It's only been his natural toughness that's somehow allowed him to survive and recover enough function to come to Sydney.

Surgery with Charlie resulted in a tumour considered to be inoperable to be taken out in 2.5 hours (additional 3 hours for the aneurysm), followed by next-day discharge. Of the other 3 patients in the room that my dad was in, we saw 2 of them get discharged the same day as my dad (and we saw them come in for surgery the same day as my dad as well) - we spoke to one and she'd told us that her tumour was considered inoperable too.

I'd definitely recommend going to see Charlie for a second opinion. We'd had a second opinion in Perth and all they said was that the tumour was inoperable and my dad was finished. We also had warnings not to go see him from doctors in Perth - we're glad we ignored them.

We know there's still a long journey ahead but at least the probabilities have increased and there's a bit of hope!

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kenobewan
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Post by kenobewan » Fri Dec 16, 2011 9:03 am

Great result!

Thanks for the update. I agree on the value of second opinions.

All the best.

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Post by Jacquip » Fri Dec 16, 2011 11:43 pm

That's fantastic news on your dad I am so pleased for him and the family. I hope he continues to make good recovery. It's really important for us BT survivors to hear these positive stories. I will always bear Charlie Teo in mind for a 2nd opinion as I progress through the tumour journey. Thanks Gavin, Best wishes to all your family and a very Merry Christmas a positive 2012. :P

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Post by Ross Symons » Tue Dec 20, 2011 7:31 am

Great to hear the good news above.

If Jane and I were presented with an "inoperable" tumour then we definitely would have sought a second opinion from Charlie Teo. In researching surgeons you also have to take into account that Charlie sees the most difficult of cases and presumably this should mean an overall lower success rate for his patients, this is apparently not the case.

As with Ken above, I believe second opinions are invaluable, especially on the big, non-reversable items like radio therapy and surgery.

A sincere merry Christmas to all here and I hope the new year is the best yet!

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ashony
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Re: Charles Teo and his work

Post by ashony » Thu Jan 10, 2013 9:16 am

Hey guys,

My partner has been booked in to see Teo in late Feb (brain stem astrocytoma). However, we saw one of his associates, Donnellan, yesterday at Teo's office who suggested against the aggressive approach as it was beyond life-threatening to do so (surgery would only be an option when my partner is at "deaths door" as he put it) and said my partner had months to live.. But before he wanted to make that definative, Donnellan wanted to pass it by teo (who was going on 3 week holidays starting today). SO we waited in his office..

He then came back and said that teo wanted to do a resection/debulk of the tumor. We were suprized because Donnellan seemed so opposed to this (which he made clear actually) as he wanted to just do a laminectomy to make room for the tumor (thus "buying time").

We are so confused.. my partner and I are only 22.. so if anyone has had any experience/comments/advice, it would be muchly appreciated.

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kenobewan
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Re: Charles Teo and his work

Post by kenobewan » Thu Jan 10, 2013 10:11 am

Sorry you are in this dilemma!

If were you I would get another opinion. A neuro-oncologist would be good start.

It's likely given his age, karofsky score (higher the score the less symptoms) and grade, the lower your age the lower your grade, that he'll be able to wait for the second opinion.

There are no easy options in this disease. There are wrong options. Get enough information to know how to avoid the bad choices.

Let us know how you. Unfortunately, no one can make choices for you. Always sleep on it.

Good luck!

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ashony
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Re: Charles Teo and his work

Post by ashony » Thu Jan 10, 2013 10:32 am

A neuro-oncologist? Do you know any good ones in Sydney?

It was a low grade tumor in 2006 when it was biopsied, but it has progressed in terms of symptom control (terrible unsteady gait, muscle stiffness/wasting, pain-headaches ++) in the past 1.5yrs.

I hope my partner can wait. The way the dr put it, teo wanted to see my partner as soon as he came back from holidays to discuss the surgical option. And if he deteriorates in the meantime, increase the dex until he gets back. CHOICES CHOICES..I feel like there is such little time. So many important decisions. Too much to lose. I feel so angry/wrecked/teary at the same time.

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kenobewan
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Re: Charles Teo and his work

Post by kenobewan » Thu Jan 10, 2013 12:54 pm

One I know of is Helen Wheeler. It will take about three weeks to get in to see her.

That it has progressed slowly for a brain tumour is the good news, as you know its location thats bad.

Question - who does Charlie's operations while he's away?

Anyway, as I indicated that its up to you to make the tough choices. However, there are things that help - cool heads, take your time, meditate and make the space to the good decisions.

Its unfair that he is young, then this disease isn't about fairness!

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Re: Charles Teo and his work

Post by billybyrne » Fri Jan 11, 2013 12:29 pm

I'd also recommend Dr Michael Back in the Royal North Shore (http://sydney.edu.au/medicine/people/ac ... /mback.php)
He was my oncologist when I lived in Sydney - I have a grade 2 glioma. He has worked with Dr Teo on some of his patients and has an open mind towards his approach. I found him to be great as he explains everything in detail and really help you to understand your options.

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ashony
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Re: Charles Teo and his work

Post by ashony » Fri Jan 11, 2013 10:18 pm

thank you for your suggestions guys. will chase them up.

over the Christmas period, lots of people don't get seen and teo and Bernie kwok are on holidays until Feb so donnellan sees all the emergency appts in january. he was happy to operate only a laminectomy on my partner before teo came back but all of the mor e aggressive resections wait until they come back front their holidays.

fyi if anyone's interested, its $700 for a teo consult nowadays.

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ashony
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Re: Charles Teo and his work

Post by ashony » Sat Feb 09, 2013 3:19 am

Quick question,

GP wants us to see a neurologist (doesnt specialize in tumors or anything) thinking that they may help with managing (with medications etc) my partners muscle stiffness and rigidity. Do you think hes worth seeing or just going with a neuro-oncologist?

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