Surgical Appointment Week
So this week was the beginning of a long, complicated and surprisingly political surgical process. Its going to be quite an intense blog post so you can skip over it if you don't want to know the in depth details.
We went to Cardiff on Monday night ahead of our appointment first thing in the morning. My parents, Rene and I met the neurosurgeon in Cardiff who has an interest in low grade tumours. My first thought was he was the spitting image of Robert Downey Jr. He was a very nice friendly approachable guy who asked us how much we wanted to know at the beginning of the meeting and then treated us accordingly.
To be treated in Wales I must be living in Wales and registered with a local GP there and thus have the rest of my treatment there too. Radiotherapy, chemotherapy etc. and likewise for England. To be treated in England I must be living in England due to NHS England and NHS wales being completely separate entities. Now, this means I need to decide where I want to spend the rest of my life pretty soon. I want to finish my degree in wales and I want to live in wales after. However, I’m going to need to be in England for treatment so I can be home and be looked after post-surgery etc. Also England has many options whereas Wales has only the one.
He apologised for the fact that the clinic was cancelled, and said I would have seen nurses and a psychiatrist as part of the day. But that would happen in November if we decided to be treated by Cardiff. He also said he didn’t prescribe the dexamethasone and that it was a mistake to be put on it. So I’m not on steroids anymore. But the damage has been done. Need to recover my mobility now, and loose all the fat that I put on. Also as cortisol suppresses testosterone ive had no testosterone for the last 4 weeks. Now that I’ve come off the cortisol (2 days off at time of writing this) I’ve had a huge outbreak of acne everywhere.
• Looking at the MRI my tumour is probably a low grade glioma (grade 2) with potentially some areas of grade 3 within. There is a 30% error rate with MRI diagnosis and low grade tumours. Surgery would be required to confirm any diagnosis.
• Low grade gliomas all eventually turn high grade, it can’t be predicted when they will turn.
• Low grade glioma median prognosis is 5-8years
• Low grade glioma median progression time is 3-5years which is sort of the average time it takes to turn
bad and become very symptomatic.
• All tumours are different, stats are stats. Its sort of pointless looking at them other than for an average.
• These tumours are not encapsulated, healthy brain tissue and tumour are entwined where they meet
meaning they cannot be separated.
• My corpus callosum has likely been invaded already.
• I am right hand dominant. This means most of my brain function is likely on the left side. My right side has the tumour. My left side is currently not invaded with tumour so that’s pretty fantastic news.
• The tumour is on my left arm and leg motor zones making surgery a risk of paralyzing my left side.
However with or without surgery the tumour will grow into these areas and anyway.
• There is an area of enhancement on my scan, he hopes it’s just a blood vessel.
• Some surgeons say resection of low grade tumour improves prognosis. Some surgeons say it doesn’t change prognosis.
2. Biopsy – low risk surgery, small amount of tumour removed. Not very effective as only small area of tumour would be assessed.
3. Ultrasound guided Awake Craniotomy - Operate with patient awake and test areas of brain for function in order to know which areas to be more aggressive at removing tumour and which areas to leave well alone.
Aim would be to remove 75% plus of tumour to guarantee a good diagnosis of what the histology of the tumour is. Risk of motor function damage would be 10-15%
4. Asleep Craniotomy – same as above but no testing during operation. Risk of motor function damage 20-30%
5. He sort of recommended UCL in London as the best surgical option in England. I asked him what he would do if he was me. He said he would go for the monitoring option.
• Agreed with diagnosis of probably low grade tumour
• Seemed to have a differing opinion to Cardiff as to where my motor zones were in relation to the tumour. He thinks my motor strip is far enough away from the tumour to be aggressive with removal in these areas.
• Agrees about corpus callosum and that there would have to be a big chunk of tumour left inside in that area.
• Has brain lab technology. Which as far as I can work out is a 3dimensional MRI image that is displayed in the surgeons glasses during the operation that maps out my actual brain against the scan. Pretty cool yeah?
• Recommends surgery around Christmas time because of size of tumour is imparting mass effect already.
• Doesn’t think an awake craniotomy is necessary, doesnt think it would make a difference to outcome.
• Also suggests UCL if we wanted a second/third opinion as they have intra-operative MRI, although long waiting lists.
Well now I need to make a decision between Wales and England. I’ve got to choose England as I can’t look after myself in Wales. So that leaves me with Plymouth and wherever I go for a second opinion as surgical centres for my primary treatment. Now Plymouth would be fine, however after having two surgical opinions with such differing suggestions and differing thoughts about my motor strip I really feel like I need to get a third opinion before i choose a treatment option.
Okay so this leaves me with Bristol or London as further options. Both are top Neurological Centres and both offer functional MRI imaging which should tell surgeons for certain exactly where my motor zone actually falls within my brain and its relation to my tumour. We phoned up my GP surgery in Cornwall on the way home from the appointment in Plymouth and they gave us an appointment on the same day, how fantastic cornwall is. It was agreed with the GP to discuss the options with my oncologist and be referred to either Bristol or UCL for a third opinion depending on my oncologists’ opinion on which would be the best choice. So now we wait again. But that’s okay. This week was tiring! I want a rest.
There is a clinical trial about brain tumours and genetics that im going to sign up for in the meantime, and an interesting treatment one that i'll talk about another time.
I say less stressful, but when you’re not well everything becomes stressful. This was a week with a lot of travel and my tummy wasn’t really up for it. Had a couple of close calls which Rene found very funny. Anyway after the first surgical appointment we went to my favourite student haunt the Heath Pub for lunch and to let what we had just been told settle over us and sink in and discuss the options.
We then travelled to Swansea to see Rene’s new house and then for dinner at Rene’s parents’ house which was a very nice evening. Lots of good food and good company.
The next day was mostly spent packing up my Cardiff house and taking pictures in order to put my room up for rent so that we aren’t paying rent all year for a room in not able to use. It’s a pretty sad day giving up my life in Cardiff, feels like the end of what my life could have been. I’ve had lots of interest in the room already though, so, things look promising in terms of getting rid of such a huge financial liability.
We also went to see Rene’s best friend for a bit and then went to lunch at TGI Fridays. Yeah, hardly following my diet, but it’s the last time I’ll be in Cardiff for a while and we didn’t do too badly. We ordered off the tapas menu and didn’t get dessert so it wasn't a complete mess up. I messed up by eating my way through a whole bag of pistachios and a large bar of dark chocolate later on in the day though.
We got home before midnight on Wednesday night but I had completely forgotten about the next appointment in Plymouth on Thursday morning. Coming off the dexamethasone and increasing the keppra has made me extremely tired all the time, so I was, I am, struggling with keeping up with conversations and such, especially the more intense ones like the surgical appointments.
My headaches are back pretty bad too which doesn’t help much. And I dropped my laptop for the second time in a month and broke it again. Time for another £100 hardrive. Sometimes my fingers just seem to let go out of my control? In terms of mobility I still have the strange buzzing sensation in my left foot, however I am walking better, and I think that will continue to improve up to a point now that I’m free from the dex. I have my mental health assessment for therapy tomorrow. That’s about it as far as treatment goes. Anyway this blog post is far too long now so I’ll sign out.
Cardiff
We went to Cardiff on Monday night ahead of our appointment first thing in the morning. My parents, Rene and I met the neurosurgeon in Cardiff who has an interest in low grade tumours. My first thought was he was the spitting image of Robert Downey Jr. He was a very nice friendly approachable guy who asked us how much we wanted to know at the beginning of the meeting and then treated us accordingly.
To be treated in Wales I must be living in Wales and registered with a local GP there and thus have the rest of my treatment there too. Radiotherapy, chemotherapy etc. and likewise for England. To be treated in England I must be living in England due to NHS England and NHS wales being completely separate entities. Now, this means I need to decide where I want to spend the rest of my life pretty soon. I want to finish my degree in wales and I want to live in wales after. However, I’m going to need to be in England for treatment so I can be home and be looked after post-surgery etc. Also England has many options whereas Wales has only the one.
He apologised for the fact that the clinic was cancelled, and said I would have seen nurses and a psychiatrist as part of the day. But that would happen in November if we decided to be treated by Cardiff. He also said he didn’t prescribe the dexamethasone and that it was a mistake to be put on it. So I’m not on steroids anymore. But the damage has been done. Need to recover my mobility now, and loose all the fat that I put on. Also as cortisol suppresses testosterone ive had no testosterone for the last 4 weeks. Now that I’ve come off the cortisol (2 days off at time of writing this) I’ve had a huge outbreak of acne everywhere.
His facts about glioma’s and some opinions about my particular tumour:
• Looking at the MRI my tumour is probably a low grade glioma (grade 2) with potentially some areas of grade 3 within. There is a 30% error rate with MRI diagnosis and low grade tumours. Surgery would be required to confirm any diagnosis.
• Low grade gliomas all eventually turn high grade, it can’t be predicted when they will turn.
• Low grade glioma median prognosis is 5-8years
• Low grade glioma median progression time is 3-5years which is sort of the average time it takes to turn
bad and become very symptomatic.
• All tumours are different, stats are stats. Its sort of pointless looking at them other than for an average.
• These tumours are not encapsulated, healthy brain tissue and tumour are entwined where they meet
meaning they cannot be separated.
• My corpus callosum has likely been invaded already.
• I am right hand dominant. This means most of my brain function is likely on the left side. My right side has the tumour. My left side is currently not invaded with tumour so that’s pretty fantastic news.
• The tumour is on my left arm and leg motor zones making surgery a risk of paralyzing my left side.
However with or without surgery the tumour will grow into these areas and anyway.
• There is an area of enhancement on my scan, he hopes it’s just a blood vessel.
• Some surgeons say resection of low grade tumour improves prognosis. Some surgeons say it doesn’t change prognosis.
Primary Treatment Options:
1. Monitor tumour growth with an MRI scan and spectroscopy in 3 months’ time. Re-assess from what the scan teaches us about tumour.2. Biopsy – low risk surgery, small amount of tumour removed. Not very effective as only small area of tumour would be assessed.
3. Ultrasound guided Awake Craniotomy - Operate with patient awake and test areas of brain for function in order to know which areas to be more aggressive at removing tumour and which areas to leave well alone.
Aim would be to remove 75% plus of tumour to guarantee a good diagnosis of what the histology of the tumour is. Risk of motor function damage would be 10-15%
4. Asleep Craniotomy – same as above but no testing during operation. Risk of motor function damage 20-30%
5. He sort of recommended UCL in London as the best surgical option in England. I asked him what he would do if he was me. He said he would go for the monitoring option.
Secondary Treatment Options:
1. If its discovered as grade 2 after surgery, no treatment would be necessary untill it grows back. just regular scans a few times a year, waiting for the bad day when it grows again.
2. If its grade 3 then chemo and radiotherapy would start.
Plymouth -
So today was the much shorter trip up to plymouth. again a really nice surgeon but had differing opinions to cardiff. Also saw my lovely specialist nurse again who seemed very happy with the progress of my drug protocol. So this is what was discussed here:
• Seemed to have a differing opinion to Cardiff as to where my motor zones were in relation to the tumour. He thinks my motor strip is far enough away from the tumour to be aggressive with removal in these areas.
• Agrees about corpus callosum and that there would have to be a big chunk of tumour left inside in that area.
• Has brain lab technology. Which as far as I can work out is a 3dimensional MRI image that is displayed in the surgeons glasses during the operation that maps out my actual brain against the scan. Pretty cool yeah?
• Recommends surgery around Christmas time because of size of tumour is imparting mass effect already.
• Doesn’t think an awake craniotomy is necessary, doesnt think it would make a difference to outcome.
• Also suggests UCL if we wanted a second/third opinion as they have intra-operative MRI, although long waiting lists.
What Happens Now?
Well now I need to make a decision between Wales and England. I’ve got to choose England as I can’t look after myself in Wales. So that leaves me with Plymouth and wherever I go for a second opinion as surgical centres for my primary treatment. Now Plymouth would be fine, however after having two surgical opinions with such differing suggestions and differing thoughts about my motor strip I really feel like I need to get a third opinion before i choose a treatment option.
Okay so this leaves me with Bristol or London as further options. Both are top Neurological Centres and both offer functional MRI imaging which should tell surgeons for certain exactly where my motor zone actually falls within my brain and its relation to my tumour. We phoned up my GP surgery in Cornwall on the way home from the appointment in Plymouth and they gave us an appointment on the same day, how fantastic cornwall is. It was agreed with the GP to discuss the options with my oncologist and be referred to either Bristol or UCL for a third opinion depending on my oncologists’ opinion on which would be the best choice. So now we wait again. But that’s okay. This week was tiring! I want a rest.
There is a clinical trial about brain tumours and genetics that im going to sign up for in the meantime, and an interesting treatment one that i'll talk about another time.
Scan Stuff and Explanations
This is going to be a bit where you can look at some basic brain function maps and compare them to my scans. you can all be my neurosurgeons and decide.
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| Back Front |
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| Front Back |
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| My T2 sagital scan |
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| My T2 coronal |
The Less Stressful Bits
I say less stressful, but when you’re not well everything becomes stressful. This was a week with a lot of travel and my tummy wasn’t really up for it. Had a couple of close calls which Rene found very funny. Anyway after the first surgical appointment we went to my favourite student haunt the Heath Pub for lunch and to let what we had just been told settle over us and sink in and discuss the options.
 |
| TGI Fridays |
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| View from Rene's House |
We got home before midnight on Wednesday night but I had completely forgotten about the next appointment in Plymouth on Thursday morning. Coming off the dexamethasone and increasing the keppra has made me extremely tired all the time, so I was, I am, struggling with keeping up with conversations and such, especially the more intense ones like the surgical appointments.
My headaches are back pretty bad too which doesn’t help much. And I dropped my laptop for the second time in a month and broke it again. Time for another £100 hardrive. Sometimes my fingers just seem to let go out of my control? In terms of mobility I still have the strange buzzing sensation in my left foot, however I am walking better, and I think that will continue to improve up to a point now that I’m free from the dex. I have my mental health assessment for therapy tomorrow. That’s about it as far as treatment goes. Anyway this blog post is far too long now so I’ll sign out.
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