A tumour inside my tumour

a shadow on the horizonThe change is unmistakeable. In fact, I didn’t expect it to be so clear.

I had thought it might come as a shadow. A slight darkening of the general greyness of my brain tumour, against the slightly lighter greyness of the rest of my brain. I expected it to be ambiguous on the MRI scan. A perhaps. A maybe. A ‘let’s wait and see what this smudge does next’.

But it wasn’t like that at all.

In September 2015, I had an MRI scan and as usual it was all layers of greyness against other layers of greyness, the edges of the tumour diffusing into the rest of the brain almost imperceptibly, keeping us all guessing.

Last week I was shown my latest MRI scan, from late March and my first taken in Belfast. The difference was pronounced.

A grape. A very large grape. A balloon shaped, three centimetre area of pitch darkness, surrounded by a thin line of bright white, tucked towards the centre of my brain. A tumour inside my tumour.

No doubt. No ambiguity.

This is most likely a malignancy. The next step along an inevitable path for my type of glioma tumour. It’s not the end. It’s not even the beginning of the end. It’s just a big hiccup, and one that has to be dealt with.

My low grade tumour has become brain cancer. We knew it would, we just didn’t know when.

What happens now is not yet clear.

My surgeon wants to try to do a two-stage surgery to remove the tumour, offering the oncology treatment I will receive afterwards more of a chance at destroying the malignancy.

But my former consultants in London have previously said my tumour is too dangerous to operate on.

My new neurosurgeon was kind enough to ask them for a second opinion, sending the London team my March MRI images.

They replied on Thursday. Their opinion has not changed. The position of the tumour means the risks are too high to operate to debulk the tumour, compared to the benefit I may gain from it. Instead they recommend I go straight to oncology.

It leaves me with a dilemma. Surgery or not in the face of two very experienced, professional teams who do not agree with each other?

There are other options. I could have another biopsy, one aimed specifically at this new intensified area. One of the aims of the surgery or the biopsy would be to check that it is still the same type of tumour that we are dealing with.

It gets complex here, but it is possible that I could have a mixed tumour type. My first biopsy only pulled out oligodendroglioma tumour cells. But its possible there could also be some astrocytoma tumour cells in the tumour too. If this new malignancy has grown from the latter, it would dictate a different oncology route that one originally planned. Without the biopsy, we won’t know.

But of course there are risks to the biopsy, just as there is with surgery.

A third option is to move straight to oncology, hoping that the original diagnosis of an oligodendroglioma remains correct and this is the malignant progression we expected. The appropriate chemo regime is harsh, but it is regarded as effective at slowing the growth. It’s particularly effective with the genetic deletions my tumour carries.

I’ve not spoken to an oncologist in Northern Ireland yet, but if their plan is the same it would see me under treatment for almost a year. I don’t relish the idea of 42 weeks in radio and chemo, particularly not with all the family and financial implications that might bring.

But this time it appears inevitable.

After four years knowing this was coming, it’s hard to panic. Things are moving so fast right now, I’m not sure even how I feel about recent developments. We’re trying not to worry ahead of time, but instead to deal with each new development as it arrives.

I guess the worst thing I do feel right now is that I am in top physical condition: healthy, fit, mentally well and feeling good about the future. We have a new baby, and I had started to make plans for a career change.

As the suspected malignancy grows – whether fast or slowly in my brain – there is not yet any outward sign of it, besides the usual seizures I have become used to. And thanks to some new drugs, I’m having far fewer and far less intense ones than I’ve had in almost three years.

Like in 2013, the last time oncology was on the cards for me, the summer is on its way.

I’ll listen very carefully and I’ll give everything very reasoned consideration. But I’m reluctant to act now – whether it be surgery, biopsy, radiotherapy or chemotherapy – if there is a chance I can delay.

I’ve already made too many plans to spend quality time with my family, my bike and my friends in the sunshine. But we’ll have to see what the coming weeks and days bring.

9 Comments

  1. Gideon, whatever course you decide, we are all with you and your family all the way. You will make the decision that is right for you. x

  2. Gideon, sorry you are in this same crossroad patch. The song I sing to myself all the time now is ‘1 day at a time’ as I too reached this cross roads recently after nearly 4 years. Mine is oligoastrocytoma and it too looks like a tumour in a tumour. I call mine thing 1 and thing 2 from cat in the hat. I’m in Southern Ireland and my NS also said there’s a reason for the term inoperable – same reasons as you. I find great research sharing in the low grade glioma FB group. It helped me ask the right questions to my chemo and radio consultant. I now also know why now they no longer do watch and wait. Now they take as much out and do radio and chemo at same time straight after surgery. Like you I choose radio in hope that it helped multiple daily partial seizures and the term radio consultant uses – delaying patient deterioration by doing 6 week programme. that and hope of stopping daily seizures did it for me. It’s worked for others (who did proton beam therapy – best I can get is IMRT). I’m half way there and so far so good. Like you I’m weighing up pro/con of chemo next….. Vs long overdue holiday…..and quality of life. I’m trying my hardest to stay focused on 1 day at a time decisions. I have name down for PCV.
    Pop in and see if you can get ideas from others globally in low grade glioma/ oligodendroglioma group.
    Then hope u can take time to cycle/ do mindfulness/ find way to switch off and the right path for you will come clear. Sending you all the best xx

  3. I wish you have plenty of support and that you feel very well. A low grade glioma is a very long path. I have myself been diagnosed in december 2012 from a very large and diffuse oligoastrocytoma. Apart from 20 MRI and levetiracetam from the beginning, I faced a biopsy, 2 years chemotherapy with temozolomide and more recently an awake surgery last year.
    Needless to say that the most important is to keep confident and to follow your feeling without being under stress. By thinking this way, it helps not suffering and face a long struggle that does not remove some of your energy. Feel good. Many physicians told me the Latine saying “carpe diem”. It does make sense and provide some well being when thinking that way. And it helps going through thinks much more easily than we can imagine. I do hope the best to you.

  4. Could you get another opinion? I think inoperable often depends on the surgeon and the better ones sometimes operate in places others won’t once the tumor indicates more aggressive behavior. I’ve been told my brain tumor was inoperable and then later it isn’t (by someone else) but that they hesitate to operate because of possible side effects. It might be worth seeking a third opinion. Good luck.

  5. Wow. I would be terrified. But having just finished pcv chemo after a 14 hour brain surgery. Throw everything at reducing your tumour as much as you can without brain damage. Trust your surgeon. Think of the kids. You’ve got youth on your side. Nothing about brain tumours is easy. Take control back from the cancer. Oh and 12 months to the day after leaving re hab I cycled 20 miles. Trust your instincts too.

  6. Aw Gideon I’m gutted to hear this but if anyone can handle this you can. I have followed your progress and bought your book but never been one to comment until I read this today.

    Yes you have a lot of decisions to make but take your time – get out on that bike, take that holiday, spend time with your family and the right decision will come to you. Everyone will have their own ideas on what you should do but remember ultimately it comes down to what you want and what you can handle. Whatever your choice is it will be the right one for you.

    You are going to fight this as you have done everything else and you’ll keep fighting – don’t give up.

    Keep smiling and be brave.

    Lynda
    X

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