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About Jane's brain tumour journey: Astrocytoma.co.uk

To cut or not to cut?

07 October 2009

Another doctor's visit this morning. JD is about to start month 3 of her chemo therapy (Temozolomide). So far she has tolerated the first two treatments really well. Things are going better all the time with her, apart from the tumour obviously. She is losing weight, she is fitter, back to fencing and back to university. She has taken on mentoring some students or something so it is all very positive. It seems she has finally recovered from the radiotherapy.

But then last week she had a headache. She says it was 'one of those' headaches that indicated pressure behind her eyes (which would indicate the tumour is growing or at least the brain is selling for some reason). It only lasted a day but obviously enough to get worried.

Today we met with the Neuro Oncology nurse who keeps track of JD's treatment. He said the Neuro Surgeon thinks he can remove parts of the tumour. Our initial response was: great news, cut it out, any reduction in tumour is great, right?

On second thought, things may not be so black & white. JD is doing really well at the moment. She is tolerating the chemo really well, is back on track with PhD and everything.

So, if the headaches are not returning (yet), why would she go through the surgery? Apparently it takes longer to recover from second surgery, especially after the radiotherapy. So that would mean delaying the PhD once more which may have impact on her funding. There does not seem to be an urgent need for surgery right away. We initially understood that they could cut away some of the parts that have turned from Grade 2 to Grade 3 but that is not the case. They can remove just some bits of the tumour that they can safely get to.

So the Neuro Oncology nurse suggested she has an Outpatient appointment with a Neuro Surgeon to discuss the options first.

I think JD is leaning towards no surgery at least until they have done another scan after the first 6 month Chemo cycle. Unless of course the headaches suddenly return and get worse.

Obviously this decision has nothing to do with the fact that surgery soon will mean no ski trip in January :-)

hat do other people feel about these choices? Remove it as soon as possible, or remove it only when there is a medical need?


minispace said...

My two pence. Remove it now. Doctors cannot look into the future with 100% certainty. In a few months something might happen which makes surgery impossible. And then the Phd-funding won't mattter anymore ... health is always no.1.

Dutchcloggie said...

Yeah, I can see the point of that. But on the other hand, they can not actually remove the thing. They can just take away a little bit and make t a bit smaller. And then it will grow back. And they can remove a bit of it again. If it was about complete removal, there would be no discussion. but what is the point of removing a bit now when it is not bothering her as such, knowing they'll have to do it again in the future when it grows back? Would it not be more sensible to wait until it is really needed?

You are right, health is always No1 but she is, more or less, healthy now and symptom-free so the surgery would make her more ill, perverse as it sounds.

On the other hand, any tumour that is not in her head is a good tumour :-) So maybe cut it out after all.

Julie said...

I would tend to wait.

Finish the round of chemo Jane is on and get the results of that. Then make a decision in light of that.That, by the sounds, will be after this academic year and she will be just that bit further along with her doctorate which will make her feel more in control.

As you say, they can't remove the bits you really want removed. They can't remove it all, either. Hence, I would tend to wait. Just monitor the headaches and Jane's energy levels.

My mantra would be to stick as much of real life into the schedule as you possibly can until the headaches return in a debiliating form. Real life balances doctoral studies with ski trips!!

Nancy said...

It all must be so hard to handle for the both of you. I admire your strength and the way you handle this. Try and enjoy life as much as you can, just as Julie says.
I wish JD good luck with her studies and you with your work, the band etc. I hope that the headaches will stay away/dont increase and that everyting will just fine. I do not know you,only from school and that is a long time ago, but i will say a prayer(hope that someone is listening) sometimes to(hopefully) keep the bad times away.
Take care!

Dutchcloggie said...

Julie: Wise words. I think you have it spot on and Jane seems to agree with you: Finish the chemo first and see what that does after the next MRI scan in January. As long as she is not impaired by the headaches, she'll probably leave it as it is for now.

Nancy: Cheers for the thoughts!

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