Ragged Clown

It's just a shadow you're seeing that he's chasing…


Good news can be unsettling too

We went to see a new oncologist yesterday.

I had requested a second opinion from someone who was specifically NOT a surgeon on the grounds that surgeons are predisposed to recommend surgery (just like car salesmen are predisposed to recommend that you buy a car). My surgeon seemed offended.

“NOT a surgeon, eh?”.

He raised an eyebrow. Oh, well.

We were expecting to see Dr XY (a rather stern-looking male doctor when we stalked him online) but when the door opened, we were greeted by a smiling Dr XX. We were not used to smiles from doctors in recent weeks and they caught us by surprise.

Dr XX started by asking about my anti-seizure medication. I told her it was making no difference and was giving me unpleasant side effects. I told her that, from my research, what I was experiencing didn’t sound like a seizure anyway — though 3 nurses and a neurosurgeon disagree with me.

“Hmmm…” she said. “It doesn’t sound like a seizure to me either. I’ll book you an appointment with the head of epilepsy. He is an expert in brain tumour-related epilepsy (BTRE). He’ll know. He’ll probably do an EEG.” (Mrs Clown has been asking for an EEG for weeks).

Score One Point for Dr XX.

Dr XX next started to talk about scans and tumours. I paused her and suggested that, instead, I tell her what I know and what I think we should do and then ask her my questions. No point in her telling me what I already know. “Sounds like a great idea!” she smiled.

Score Two Points for Dr XX.

(paraphrasing) I have a diffuse low-grade glioma in three lobes etc etc. Prospects for surgery are bleak and I don’t think I want it. Radiation is not possible. Chemo requires a molecular profile which will require a biopsy. The data on PCV if I have the 1p19q codeletion looks promising.

My question: is the chemo likely to do any good? If not, there’s no point in even doing the biopsy.

Smiling Dr XX (paraphrasing again):

You described your condition exactly as I would have. I have nothing to add and your suggested treatment path is exactly what I was going to recommend. I think surgery would be a bad idea for you and radiation is not possible. 

The biopsy is easy and low risk. No reason not to do it and you seem like the kind of person who prefers to have more information rather than less. PCV is usually given as an adjuvant therapy after surgery. There is no clinical data on using it without surgery but a healthy young man like you should be able to tolerate it and, if you have the codeletion, I think the chemo will be helpful. If you don’t have the codeletion but have the methylated MGMT you might consider TMZ. If not, you will have lost nothing but will have more information about what to expect.

If you like, I can present this to the multi-disciplinary team and see what they say.

“Please do!”, I said.

Score Three Hundred Points to Dr XX and Gryffindor.

I asked about the other side.

What should I expect if I have no treatment at all?

Your glioma seems to be very slow growing and might have been there for years. It might be there for years to come. It’s almost certainly grade 2 now. It might transform to grade 3 and then it will grow much faster. People with your kind of glioma usually just find themselves gradually slowing down and finding cognitive functions harder to deal with. You might have trouble with speech.

Eventually you’ll find yourself getting sleepier…

…and, eventually, I’ll go to sleep and not wake up?


What a lovely way to go!

Dr XX said she had been careful not to sound too optimistic and I promised that I wouldn’t come back to haunt her if she got it wrong. As we were leaving, we told Dr XX that she was wonderful and that we would rate her Five Stars on Yelp (“…and TripAdvisor!” shouted Mrs Clown).

We are gonna need a bigger boat!

We walked home on sunshine and talked about what this new information meant.

Though nothing has really changed, this new way of looking at things certainly turns everything upside down. Maybe I’ll have time to finish my degree? Maybe I shouldn’t quit my job? Maybe I’ll outlive my term life insurance. Maybe we should make plans for a smaller mortgage. I’d like to let the information settle for a bit before I make up my mind. I have time to think now.

I spoke to K last night to see what she thinks. K reminded me that I said the last couple of months have been among the best of my life. She told me I should just keep doing that stuff. Maybe I will.