Thanks Jen, It certainly appears that not all neurosurgeons are the same! So far my neurosurgeon appears to be on the ball. The first neurosurgeon I saw was full of himself and wanted to send me for a heap of VERY expensive tests (we had to ask his secretary how much it would all cost and even she couldn't tell us and had to ring up to find out). He told me about a woman who had what looked like a tumour but had completely vanished before surgery and he was unable to determine what it was as he did not do any tests. I got the feeling he was wanting to use me as a research project - at my expense! Thank you for sharing your story about your partner and your sage advice. Good luck with your upcoming battle. Dee
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Well things were seemingly travelling really well for us until the 12th of August.
3 rounds of PCV chemo down, one to go, and no serious complications. He was very nearly at the end of the 6 month driving ban that resulted from the first single seizure ... just 3 weeks to go. He was looking forward to regaining that freedom and independence more than anything else.
Life seemed to be returning to a semblance of normal.
Then on 12 August he had an MRI that reported new multi foci changes in areas very distant from the original tumour - one on the other side of his brain in the temporal lobe.
The MRI referral had only been written by the oncologist at our insistence, because it had been 3 months since the last one.
As far as we know, none of the specialists we were seeing (and who got a copy of the MRI report at our request) reviewed the MRI or took note of the findings, even the referring oncologist.
Then on 20 August out of the blue, he had a very serious seizure, or possibly series of seizures while he was working at home alone. It had been almost 6 months since his last seizure, and we had become over confident and complacent. I failed to ring from work during the day to check on him.
He was not found until my son returned home from school and discovered him with head injuries and covered in blood and vomit. He had aspirated stomach contents into his lungs. He was in poor condition, tachycardic, and had been in this state alone for at least 5 hours.
My son couldn't find the home cordless phone, so he ran out into the street in front of a passing car, and got the driver to call an ambulance.
At the base hospital he was unresponsive, his oesophagus and trachea were burnt by stomach acid, and his blood oxygen level was not great. He had head injuries, and a chest x ray showed he had already developed lung inflammation which progressed into infection over the next 24 hours.
Disappointingly it emerged that his Dilantin levels were very low - certainly not in the therapeutic range. No one had been monitoring his Dilantin levels, or bothered to mention to us that they needed to be monitored.
When he came home 48 hours later, he still had some periodic cognitive and memory deficit and required supervision.
Emotionally he was fixated on one thing only - he would now not be allowed to drive for 12 months.
After returning home his cognitive function worsened, he wasn't eating and I panicked. He had lost 7kg, and was cycling between fully cognitive periods, and periods where he was confused and disoriented.
I tried to get him readmitted to a local private hospital, but they discharged him almost immediately.
I was basically told that he was nearing end stage, and that I should expect a decline in cognitive function. My protests that he was postictal, not end stage were gently dismissed. The staff insisted on recording his condition as GBM, despite my very clear insistence that he had a grade 3 oligo.
The oncologist rang that night - he had FINALLY gotten around to reading the MRI report from August 12 (although he hadn't looked at the images because they wouldn't load on his laptop?!). He stated that based on the new multi focal finding on the report, we were not dealing with an oligo at all, and he was of the opinion that it must be chemo refractory GBM.
We saw the neurosurgeon the following Friday - he was crushingly blasé. He failed to mention the MRI changes, and only reluctantly discussed them when we brought them up. He basically said nothing more could be done, and we would just have to get used to the seizures.
He was dismissive, vague and deliberately evasive.
He also took no responsibility for the fact that the Dilantin levels had not been monitored by any one - not one of the many Dr's and specialists we had been seeing had mentioned that Dilantin levels need to be monitored. As the neurosurgeon had prescribed the dilantin, ultimately I feel he had the responsibility to at least advise us to ensure the levels were monitored.
He did recommend a PET to investigate the MRI changes (after we mentioned them!).
As soon as we left the consultation, we made an appointment with the GP, with the aim of getting a second opinion from another neurosurgeon.
The PET was the following Friday, and we saw the new Neurosurgeon the next Monday.
From the very first consultation, we realised what a huge mistake the previous Neurosurgeon had been. The new Neurosurgeon was shocked at how minimal Ross's first surgical resection had been, and said all visible tumour could and should be removed. He took one glance at the MRI and said there was absolutely no reason not to remove all visible abnormality.
This is in stark contrast to the first surgeon, who had said that if he took any more out, it would impact the motor strip and eloquent centre, and that Ross would lose speech and could lose "an arm and a leg".
We promptly ditched our entire treatment team, and started again with the new Neurosurgeon, a new Oncologist and a new Radiation Oncologist.
Best decision ever.
The 2nd surgeon was so confident, he performed the surgery 4 days later, without awake craniotomy. He removed pretty much the entire left frontal lobe, from skull to midline. There was ~140 cubic cm of tissue sent to pathology, and this time the histology came back all grade 2 oligo. This has made us hopeful that the first surgery caught all the grade 3 tissue area. Obviously we know that the damn thing will come back eventually, but removing all visible tumor in the first place seems sensible!
The improvement was immediate - in fact he went back to work in his job 3 weeks later! He is now completely normal in speech, cognitive function and motor function.
The 4 week post surgical MRI shows little except normal looking brain and a really, really big hole where the left frontal lobe used to be.
4 weeks after surgery, the new Oncologist and new Radiation Oncologist started him on 6 weeks of radiation in combination with concomitant Temodar chemotherapy.
We would both go to work at 7.30 in the morning and then drive down to Brisbane in the afternoon for radiation, which was usually at about 5.30pm. The radiation wasn't anywhere as bad as we expected. Sometimes he would see flashes of colored light when the radiation hit areas of the brain responsible for visual processing. The mask sometimes put pressure on his eyes, so his sight was disturbed for a while afterwards.
The radiation treatments made his skin feel tight, and made his brain feel buzzing and stirred up like the start of a headache. He was pretty irritable and short tempered for the rest of the evening, although the 3 hour drive home from Brisbane every night didn't help that.
He found that he felt less effect on his skin from the radiation when he switched from normal shampoo and conditioner to using only Johnson and Johnson baby shampoo.
He finished the 6 weeks of radiation last Tuesday, and so far he hasn't had any fatigue or serious complications.
He did get headaches and vomiting (presumably from brain swelling) in the third week, so he was started on dexamethazone, which stopped the pain and vomiting within about 48 hours.
His hair thinned but didn't completely disappear in two patches - one large area on the left forehead, and a small round patch on the top at the back of his head.
Since radiation he has developed a slight tremor in the right hand, and very slightly in the right hand side of his face, which is so mild he hasn't noticed it himself.
He still gets a stirred up feeling in the brain when he gets tired.
We were told that the radiation symptoms usually peak 10 days after radiation ends, which means he should feel the worst at the end of this coming week.
The dexamethasone has caused acne all over his body, but now that the radiation is over, he weaning is off it and will be free of it in 2 weeks.
Other than that, he looks and acts completely normally other than being somewhat easily annoyed, and he is still working part time.
He has a break from treatment now until January, and has his next MRI on December 24 to get a post radiation baseline.
In January he starts 6 cycles of intensified Temodar Chemotherapy.
Overall, I desperately wish I had gotten a second opinion earlier, but all said and done I am deeply thankful to our current medical team.
The bright spot on the temporal lobe has not developed into anything, and the Neurosurgeon is of the opinion that it is nothing to worry about. He says he sees a lot of "unidentified bright spots" that don't turn out to be anything.
Don't just ask questions - demand answers.
Google your drugs and ask should the levels be monitored regularly.
Insist on appropriate tests, reports and treatments.
Follow up on reports yourself. Ensure your Dr's actually receive and review them.
If you don't feel comfortable with your Dr's, if they are evasive or dismissive and you don't get the answers you ask for, get a second opinion.
Don't be afraid to sack the whole team and go elsewhere.
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A summary of my partner's events to date;
40 year old, slim, fit and healthy IT Engineer, cycled 10km/day, non smoker, light social drinker.
Tonic clonic seizures during the night, about 1 hour after going to sleep. Taken by ambulance to Base Hospital, barely conscious.
Confused and unable to recognise loved ones, unaware of surroundings and unable to remember events.
Diagnosed as having had a stroke.
CT scan interpreted 3 different ways by 3 different Dr's, told he had/hadn't had a brain bleed, had/hadn't developed a clot, should/shouldn't be started on aspirin etc
MRI ordered by stroke specialist to determine the extent of his "stroke" reveals tumour, Stroke specialist states he knows nothing about tumours and has no idea what it is.
Phone call to my previous employer, a cardiology specialist and general physician, results in immediate transfer to private hospital and referral to see Neurosurgeon the next morning.
Consultation with Neurosurgeon. Believed to be low grade glioma (although the "low grade" later turned out not to be the case).
Surgery booked for Wednesday.
Transferred to Greenslopes, Brisbane.
Functional MRI to map brain function prior to surgery.
Partial resection by awake craniotomy, Greenslopes Hospital, Brisbane. The hospital and staff were excellent and the surgery itself was without complications and healed beautifully.
Discharged from hospital looking and feeling completely normal except for surgical scar. Taking anti-seizure and blood pressure medications.
Follow up appointment, Neurosurgeon.
Finally have a diagnosis - Grade III Anaplastic Oligodendroglioma with 1p and 19q loss.
Neurosurgeon will not be drawn on life expectancy, extent of resection or future progression of the cancer. Vaguely indicates that RT should be undertaken, indicates that he believes chemo is a waste of time.
Neurosurgeon indicates that he will direct the referring Dr to write oncology referral.
No further appointments made with Neurosurgeon .... set adrift.
Saw referring Dr for referral to oncology - he rang Neurosurgeon who assured him that the referral had already been sent to oncology by Neurosurgeon.
Referring Dr confirms what google had told us - this type of tumour generally responds very well to chemo.
Referring Dr indicates life expectancy of between 2-10 years.
No contact from oncology - rang to see if referral had arrived - no referral has arrived.
Rang Neurosurgeon about oncology referral - told by secretary that referral is to be done by referring Dr, not Neurosurgeon. Told her that referring Dr is away - reply; it didn't matter.
My partner feels completely well and normal, returns to full time work.
Referring Dr returns from holiday.
Rang referring Dr and said no referral has been done for oncology.
No histology has been sent to referring Dr, so chase occurs to locate the correct pathology company to obtain histology.
Referral immediately faxed to oncology and appointment for RT consultation made for next day! Chemo appointment made for Thursday. Finally getting somewhere!
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Yes, I've had a positive couple of days. Been focused on the wedding. 🙂 I'm going to need to plan something else big for when it is over to keep me sane!!
I am actually quite looking forward to the forum. I'm not sure how Mum heard of it, or I'd forward her source. She said that they have them for all kinds of different cancer. Hers is secondary breast cancer. I think she received it via email from a cancer charity that she has contacted, Bloomhill Cancer Care.
Do they have them in Brisbane? If not, they are up here on the Sunshine Coast, and Mum said they are really valuable. Perhaps they may benefit you too? They offer chances to relax and get away for patients and carers (family etc.), information, counseling and advice etc. Mum is forwarding me to them for further counseling. She said they are great because all of the staff there are former oncology nurses/medical professionals, so are apparently much more informative than a lot of the doctors and nurses at the hospitals.
That's ridiculous. They don't seem to understand how horrible it is as patients and family to have to sit and wait for them to get it together. I hope that you find a great neurologist and best of luck with the oncology appointment. Chemo is so different person to person, treatment to treatment. Mum was very sick with her first chemo and had it once a month, with her most recent one, she was having chemo weekly but didn't get as sick. She said that radiotherapy wasn't so bad.
You too, 🙂
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Hi Garry, we have submitted all the paperwork several weeks ago and unfortunately at the time Colin was given his sickness certificate was the evening before being admitted to hospital from his seizure so the 17th feb he was then flown from Coffs Harbour to Sydney, and he was in hospital for 3 weeks all up. As you know they dont take that time into account so we got the ball rolling on centerlink on the 11th march when we got home. Col had used all his sick leave whilst in hospital and had just had his annual leave 2 weeks prior to his admittance, it just a difficult time and waiting seems to be forever sometimes.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.