Hi Dee,
My partner was diagnosed with a grade III oligodendroglioma in March 2013 following a severe tonic clonic seizure. No previous symptoms, just a super fit healthy 40 year old man.
The first neurosurgeon we had was vague and eluded questions - we should have taken heed of the warning bells. He was ridiculously conservative in his treatment recommendations and performed what turned out to be a pathetically minimal resection, but as he determinedly evaded all questions in relation to the extent of resection, we remained ignorant of this critcal fact.
My partner entered into PCV chemotherapy cycles following surgery .... PCV is an old regime and my partner experienced severe nausea and fatigue, but he pushed through, determined to finish the cycles. All was seemingly going well 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. 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.
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. So we finally dumped him in disgust.
We saw a 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 the 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 cortex, and that my partner 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 confident and 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,
The improvement was immediate - in fact my partner went back to work in his job 3 weeks later, completely normal in speech, cognitive function and motor function.
4 weeks after surgery, the new Oocologist and new radiation oncologist started him on 6 weeks of radiation in combination with concomitant Temodar chemotherapy. 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 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. It grew back reasonably quickly after radiation finished and there is no sign of the hair loss now.
Temodar chemotherapy was just taking tablets. My partner had no side effects or problems at all throughout the entire treatment.
Then .... life went back to normal. No side effects, no problems, no seizures.
Just peaceful normal life for 5 and a half long years, punctuated only by 3 monthly MRI scans that showed no recurrence.
This all changed yesterday - a routine MRI showed up a recurrence, on the margin of the old resection scar. And so, we go to battle once more.
Don't let anyone fool you - gliomas are called "recurrent brain cancer" for a reason. In our experience, your best option is to go hard with every treatment available to you, hit it from as many angles as you can.
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.
Good luck - I wish you every success.
Jen
