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High in grade, low in grade? Anyone? Tumours. High in grade, low in grade?

12 May 2009

Yesterday JD & I went to another brain tumour seminar in London. Informative as it was, it focused too much on high grade tumours and not enough on low-grade ones. I understand high grade tumours are more 'sexy: they are aggressive, they kill real quick (in a few weeks sometimes) and they are mostly incurable. It is much easier to get sympathy and funding for such a terrible disease.

With a low-grade tumour, people can live for decades. In fact, they can even be cured in some lucky cases. But that does not mean they do not kill a lot of people. And just because you can live with a tumour for years does not mean it is not cancer or invasive. Low grade tumours are called low grade because they grow slower than high grade tumours. They may be dormant for years before growing at all and they might grow at such a slow rate that many people with low grade tumours are on a 'Wait and See' treatment plan, meaning nothing is done about the tumour until it grows too big.

But there are plenty of people with low grade tumours that have radiotherapy, chemo therapy, multiple operations to remove tumour tissue and resulting brain damage from removing healthy brain tissue and so on.

So although they may not kill as fast as high grade tumours, they are still a nasty thing to have and they can still seriously wreck your life, if anything because of the constant fear of having a time bomb in your head that might go off at any moment.

There is not a lot of research done in to low grade tumours. Treatment that works on high grade tumours does not have to work on low grade ones. They are different animals.

And so it means we just don't know much about it at all. Not much info on life expectancy, not much info on treatment, not much info on quality of life. Not much of anything really. But a lot of pain, trauma, hospital visits, crying, hair loss, illness, anger, fear, loss of independence, loss of self esteem, loss of quality of life.

People with low grade tumours get all that. But nowhere near the (media) attention they and their loved ones deserve.


Julie said...

Today I visited a friend in RPA who had her bowl removed on Tuesday. The pathology comes back next Monday. Next Wednesday she turns 60.

I think it is enough that loved ones are attentive. I am not sure that anyone deserves the attention of the media. Or, indeed, that it helps one iota ...

Take care both of you ...

Dutchcloggie said...

I will keep my fingers crossed for your friend! (Ha! I actually physically crossed my fingers there subconsciously for a moment!!)

And you are right, as long as the people you love are attentive, then on a personal level, that is all the attention you need. I just get frustrated sometimes about the lack of research that goes in to these low grade tumours. There is, for doctors, more 'honour' to discover a cure or treatment for a highly deadly tumour than for a slow growing one that may not even kill at all in the end. So raising awareness in the media or even amongst doctors, might mean that more of them are willing to focus their attention on looking for treatments and cures.

That is kind of what I meant to say. Once again, this shows the benefits of thinking a post through for a few days before throwing it out there :-)

JD is doing better bit by bit. The hair is growing back and is really fuzzy and soft. And a different colour. And grows in a different direction :-) Quite funky actually.

Julie said...

I do understand what you mean and agree with your feelings on it. I have heard that about hair before: that it goes kinky and soft. I think one of the issues for you is that you have lost a meaning for time. It is no longer a solid definable concept but very plastic. This will ease I feel sure for both of you. You have so much time left.

Can I however politely enquire how you physically do something subconsiously?

Dutchcloggie said...

Weeelll... I was physically crossing my fingers (not just in my mind) but I was not aware of doing it until I wanted to continue typing....

I think that covers it? :-)

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