Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Waiting for results

Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.

I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.

Monday, 9 September 2013

Waiting for results

It's now 3 days since I had surgery.

The final pathology results aren't back yet. My neurosurgeon expects to have them by tomorrow. Then he'll talk with my two oncologists, Ben, and me about what to do.

Ben and I would like the remaining tumour to be resected, and I think both oncologists are fine with that. I can live with a loss of visual field function - my radiation oncologist said it would probably only cause scotomas (little spotty losses) not a full on hemianopia or quadrantanopia (where half or quarter of the visual field is lost). Really, I'm so glad that these masses are growing where they are. I'd be finding it very hard to cope if the large one had been on the left, affecting my language. And the occipital lesion hasn't caused any visual problems that I've noticed, yet. Of course I'd rather not have them at all, and part of me is hoping I'll wake up to find it was all just a sick joke.

I told my medical oncologist that I feel like I was hit by lightning with the breast cancer diagnosis, and have now been hit by a tsunami. He said its possible I may have a rare genetic condition that predisposes people to having more than one type of tumour. It's called Li-Fraumeni syndrome. You can read about it here: http://en.wikipedia.org/wiki/Li–Fraumeni_syndrome

Or here http://www.ncbi.nlm.nih.gov/books/NBK1311/

I'd need genetic testing to confirm this, though it sounds like it might be best to avoid cranial irradiation if I had it, to reduce the risk of radiation-induced malignancies down the track. (would my breast radiation have set some mischief off? At least my CT (chest, abdo, pelvis) was okay last week, so there are no others cancers that we know about.

I'm going to call my radiation oncologist.

Ok, he's in favour of resecting the remaining tumour, so everyone is on board with that.

They are all saying we need to see the final histopathology report on the paraffin sections taken on Friday night before we work out what the treatment will be. The vagueness in that statement is starting to irk me. I know that the frozen section that was observed on Friday night won't be as accurate as the paraffin section, but it sounds like the frozen section and macroscopic appearances were enough to rule out metastatic breast CA to the brain (and that's good), and suggested a glioma. I know the paraffin section will show the kind of tumour involved, which could range from an astrocytoma, ogliododendroma, to glioblastoma multiform ( aka GBM, an aggressive grade IV cancer). From my simplistic reading, the chemotherapy for each is the same, it's just the prognosis that differs, and even people with GBMs are living much longer these days. I'm hoping it's a low grade glioma that's been simmering away in there for years, giving me the symptoms of sinus headaches.

Of course I wish I didn't have this. It was bad enough having breast cancer, though we had caught it early and the size was the worst thing about it. Brain tumours are the last thing anyone would want, especially a neuropsychologist, who has seen how devastating brain disease can be. The thought of going through a protracted decline in cognitive and physical function is not pleasant, but if I have to, I will do it with dignity. I just hope it won't happen, or that it won't happen for ages.

Whatever happens, I am going to stay positive about all this, and I am going to make the most of every day I have left on this planet. Our lives are so fragile and vulnerable, we're all at risk of dying at any time, but we waste time on vain fripperies out of the delusion of immortality. I'm not going to let fear of dying stop me from living and loving to the fullest of my abilities. So there!

I wish my boys were here beside me right now, I want to hug them, and tell them how much I love them and tell them all the things I want to do with them as they grow up. I'd be crying if they were here now, and I don't want them to see me cry just now, not over this nebulous, undefined fear. I want them to have a good sleep, and to come and see me in the morning and talk to me about everything.

I'm so glad I'm feeling well. Even if the news is bad, I'm going to get through this.

Ok- good. Ben has spoken to my rad onc, who is happy to consult with some of his colleagues in Launceston, and at the Peter Mac in Melbourne, where they specialize in brain tumours. It will all depend on the final histopathology, but there are plans to get the best treatment possible, maybe in Melbourne. It might disrupt school for the kids for a while, but I'll ask the school if they can provide some work for the boys to do while they're away.

I'm not to keen on additional medical procedures, but it looks like I might become a medical tourist. Worth it if it improves my outlook. And the good thing about coming to Hobart this week has been seeing four cousins and two friends who I haven't seen for a long time. If I go to Melbourne for treatment, I may need to run a visiting roster... If only I could go on a purely social visit...