What you can’t pronounce won’t kill you

(Or at least not yet)

Today was biopsy results day – the day when my surgery team told me what kind of tumour I have, and its implications for treatment.

I have, the biopsy strongly suggests, what is known as an oligodendroglioma. Try saying that after a few Jägerbombers.

Now isn’t the time to play tumour-trumps, except to say this would generally be regarded as at the ‘better’ end of what the tumour could have been.

Even more promising, the biopsy – which took eight tiny segments of the most worrying parts of the tumour – revealed only grade two brain tumour cells, and no grade three ones.

That doesn’t mean the tumour definitely doesn’t have grade three elements (the biopsy might not have got the ‘right’ bit), but according to the World Health Organisation classification it would leave my tumour in the low-grade camp.

Only, not quite so fast.

I was, it seems, the subject of quite some debate among the multi-disciplinary team looking at my biopsy results and my MRIs this morning.

Because my tumour does show signs of taking on more blood in certain areas, and because of the huge increase in seizure activity this year, the final consensus was that we should proceed, albeit grudgingly, as if this was a grade three tumour. Just in case.

That means starting treatment.

But that it was the subject of debate means it could have quite easily have fallen the other way. That will, in part, influence my decisions in the coming months.

It certainly means I’m not going to be undergoing radiotherapy next week, nor handed a blister of chemotherapy pills tomorrow morning.

There’s a long way to go before all that.

First, I need to receive a few more results about the genetic makeup of the tumour. If it has one particular genetic marker (IP19Q deleted, since you ask), it’ll mean the tumour is more susceptible to chemotherapy. If I don’t have the marker, chemo is less likely to work. That’ll aid decision making about what treatment to have.

Second, I need to see my oncologist to discuss treatment options, including what: Chemo and radio? Chemo or radio? Radio then chemo? Chemo then radio?

And then there’s when: Will starting it sooner rather than later really make a difference to the overall outlook, and if so by how much? What does ‘soon’ or ‘later’ or even ‘outlook’ mean in this context: Weeks? Months? Years?

The oncology meetings will happen in the next month or so, and I’m seeking some second opinions from other oncologists not connected to my current team.

Unless I’m convinced otherwise when I do meet with them, I’m not planning to start any treatment until the autumn. Maybe even later.

There’s a whole blog to come on my reasoning, but essentially it centres around the following:

First, there’s nothing showing particular urgency right now, and my team’s disagreement about whether to treat yet at all only backs this up. The team have said they’re not pushing to treat right away, but I could if I wanted to.

Second, the jury is out about whether early or later treatment really makes much difference anyway (or even what ‘early’ and ‘later’ means).

Thirdly, I’d rather spend the summer (while my kids are on summer holidays) with them at the beach and in the garden, as well as cycling while the weather is good, than having treatment and experiencing any side effects while the sun is at least trying to shine.

I realise I’m in an extremely privileged position to even be able to make this choice. I don’t want to be flippant about it, nor pretend it is easy.

Many with cancer don’t get close to a choice about when and what treatment to have. This is why I want to explore and explain my thoughts further in a future post.

But, tonight at least, this is how things stand.

Unless the oncologists I speak to over the next month, coupled with my own research, offer a convincing reason why I should start treatment as soon as possible, I’ll wait at least until a new MRI scan in mid-August to make any decisions.

That scan will give me an update on my oligodendroglioma, particularly whether there has been any enhancement in those small areas that were taking up blood. I’ll use that information, plus what I’ve learned from the oncologists, to decide what to do next.

Meantime, somewhat incredibly, my seizure activity has dropped right down. (Well, not really that incredible when you consider my drug intake; I reckon I’d win the Tour de France with my pill popping).

Yesterday was the first day for months when I didn’t have a seizure at all. Little things like that can do a lot to lift my mood, and it bodes well for a summer on two wheels.

In fact, my mileage is already creeping up: 120 miles over the last three days. And any seizures I have had on the bike have been so mild I have ridden through them. I feel fitter and healthier than I have done for some time.

This is what I call a good day: relatively good results from the hole in my head. A feeling of being (relatively) in control of my life and my treatment.

Ventoux, this summer, I’m coming to get you.

5 Comments

  1. Pleased you got some good news, you told me on Sunday (top of North hill) you could win the Giro on your drugs cocktail, now it’s the tour as well. WOW ha ha.Was good riding with you. Be safe out there.

  2. Hey. Snap we have the same brain tumour. I can never pronounce it or say it though. I guess it makes a big difference where it is in the brain and whether it’s growing or not. My sister is an anasthetic nurse who attends operations and knows lots of brain surgeons and she got advice that it might be a good idea to pre-emptively strike the tumour with chemo and radiotherapy before it one day attacks me. I discussed this with my oncologist and she was brilliant, we decided to wait 3-5 years and see if there is any growth at all before taking any such decision.

    I like you was also told mine would respond well to treatment.

    There are always a lot of tricky decisions, glad to get the impression you’re relieved and comforted by your results and will probably just enjoy the summer, when it ever comes.

  3. That all sounds very much like a good news story! I’m grinning like a Cheshire cat here ! It must be a good feeling to have this news and also to be able to say your feeling better than you have in a while! Happy cycling Gideon and happy happy summer days with your family! 🙂

  4. Just to say you are making me think about treatment options for my daughter who has been diagnosed with a grade 2 astrocytoma on the brain stem. Like yourself she is doing a blog (sixteen years old) from Northern Ireland currently we are in Bristol having had to undergo a biopsy. They are suggesting 6 months radiotherapy which will be a big undertaking. Take a look at her blog if you dont mind, its called Danielle McGriskin Blog – twitter is @daniellemcgfund Facebook – The Brain Tumour Charity – Danielle McGriskin Fund. She has raised over 30,000 for The brain tumour Charity and is a great inspiration like yourself. Take Care and I have learnt a lot from your blog x Amanda

Leave a Reply

Your email address will not be published. Required fields are marked *