23rd Oct2008

It’s back

by Dutchcloggie

I realise I have not posted anything interesting here in..well….weeks (months?). Not that things have been really busy. Just that I haven’t been bothered posting.

However, I suppose things have changed now and I might get back to some more regular posting here.

As you may remember, in February this year, JD and I were told that her brain tumour is active again. The specialist said there was an absolute minute change in the size of the tumour. Nothing to worry about and the scan would be repeated in 12 months time, no need to worry. Sure. Of course you worry; even when the doctor says you shouldn’t.

Most people imagine a tumour as a well defined lump (See the picture on the right as random example) but Jane’s tumour isn’t like that. It is more like little bits of tumour tissue, growing in between healthy brain tissue in a small area of her brain. The healthy tissue gets irritated by the tumour tissue and it starts to swell up, putting pressure on the brain since there is no space in the skull for tissue to swell up. So on the MRI scan, you don’t see a nice clear lump, but a vague grey area where there is tumour tissue in the brain (see the picture on the left as a random example). This makes it really hard to remove as you don’t really know which bits are tumour and which bits are healthy tissue that is swollen. It all looks the same. When they originally removed the tumour, in 2005, they were unable to determine exactly what kind of tumour it was. They were also not able to remove all of it as the ‘edges’ were not very well defined.

In the months that followed February, JD kept having headaches. There were periods where she had them every day for weeks. In September JD had a migraine attack, something she had never had before. It was really scary as we had no idea what was going on. Vomiting, excruciating headaches for about 8 hours. Combined with her hearing problems that had recently surfaced, we decided that we would really like an MRI scan done earlier than February 2009. We went to her GP and luckily he agreed that she should be seen by a Neurosurgeon.

The Neuro bloke was really nice and ordered an emergency MRI scan for the next week. When the results came back, they were not really what we were hoping for. The tumour was indeed growing and active, more so than they anticipated back in February. JD was put on steroid tablets to reduce the swelling of healthy brain tissue around the tumour that was irritated by the presence of the tumour. This helped reduce the headaches.

The last MRI scan showed that the grey area on the picture had grown larger and that there was now also a second area that showed up grey. Does that mean the tumour is spreading? Or that there is simply more brain swelling going on? They can’t tell from the MRI. So they wanted to do a PET scan and based on the outcome of that, do a biopsy to see if they can finally decide what kind of tumour it is. And then he said the words Chemotherapy and Radiation. Excuse me? Can you repeat that for me? Chemotherapy? Radiation? That is for people with CANCER! The doctor said there was no real need to treat the tumour but because JD is so young, he preferred to treat it now, before it might start to grow faster or even change in to a malignant tumour.

We left the hospital shell-shocked. From having a migraine to being told your tumour is indeed growing and you might need Chemo and Radiation…. Geeeeez.

And so JD had her PET scan last week; she had another blazing migraine that same day so she was ill all the way to the hospital and back. Poor sweetie. A PET scan looks are brain function. The contrast fluid lights up differently depending on the activity in the brain. Hopefully that will enable them to see the difference in brain activity in tumour tissue and normal brain tissue. That way they might be able to get a clearer picture of where to take biopsy samples from.

It is wait and see what the results of the PET scan say.

It is a small difference in emotions but somehow I feel things have shifted for JD. From ‘having a brain tumour’ to ‘living with a brain tumour’. If you have no symptoms, then the tumour might as well not be there. Now she has headaches and ‘proper’ symptoms, it just feels different.

Yegh. I am not liking it. I prefer to know exactly what tumour it is, what the prognosis for it is and how much this is going to affect the rest of her life. All this uncertainty is no fun. Very stressful!

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