Is that brain tumour really removed? What sort of cancer do you really have? What's all this about an operation this week?! My sister asked the questions. I tried to organise my thoughts enough to answer. Never one to waste words (rofl), I'll copy & paste below.
But first, today:
Yes, I still have a cold. Deb has caught my cold -- and has it even worse :-( The weather is still cold and miserable. A good day for staying indoors.
Except for a morning trip to the library. With coffee & cake while we are out.
And an afternoon walk to the nearest shop. Lots of cygnets & baby coots to be ooohed and aaahed at, on the way :-) More coffee. Walk home. Feeling better, less stir crazy.
We decide that there is no way we can go to the next rogaine. It's just too far for the easy one-day outing that we could handle.
We decide that we will definitely register for the next rogaine. We can easily break the journey, spend one night in a motel and just a few hours on the course. If we finally decide that we are *not* ready for a night away... we can just not go. We will register tomorrow. Probably :-)
I update the blog header to remind myself: Our planning horizon is 3:1:n. The next rogaine is well within that range. And Deb has decided that our planned trip to Victoria -- later this year -- will include walking in Wilsons Promontory. Wherever that is :-)
And that was today.
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Getting it all Straight in my Mind:
... What's this op for? And when is it? And how long is it?
I'll be in hospital all of Wednesday 27th Sep, with the operation sometime after 11am. Then I stay overnight, to go home on Thursday.
In surgical terms the operation itself is trivial, to remove my right testicle. Emotionally, though, it's the bloke's equivalent of a woman's mastectomy. But why remove the testicle?
I have brain cancer. Turns out I also have testicular cancer. Are the two related? Highly unlikely. But having two -- unrelated -- "primary" cancers is also quite rare. There are also two possible variants of testicular cancer. One spreads fast, the other barely spreads. All of that relates to future treatment plans. In particular: will testicular treatment be in parallel with brain treatment... or left till later. So we need to know, What Cancer is That?
The only way to clearly identify the testicular cancer -- is to cut it out and have a close look. Cutting it out would be the first step of treatment anyway. It's just being done "immediately" so that the results can be part of planning for the brain treatment. Which will start asap, no matter what.
Also... a scan has shown that the testicular cancer is already spreading. So identifying the cancer type is more important. If it's the fast-spreading type then treatment will be better sooner rather than later. Once treatment has started, the testicular cancer -- no matter what the type -- is essentially no threat at all.
... I still do not get this cancer thing.
Nor do I :-) The blog posts help me clear up -- in my own mind -- what I do need to understand. But they are very much written on the spot, with only the latest thoughts, not organised for others to follow. This email is also helping me to get a broader understanding clear -- in my own mind.
If you ask more questions... I probably also need to think about it... so feel free to ask :-)
... They got the lump out of your brain, cleanly, all of it?
Yes, probably, but there's more...
I think of my brain cancer as being in three parts:
1. The lump. It's visible, it was (in my case) clearly defined and apparently all removed.
2. Surrounding oedema -- bruising -- caused by the lump pressing into the brain. Not cancerous. As much as possible was removed surgically, drugs are reducing the rest.
3. The tentacles. Which are not really tentacles. They are cancerous cells -- ready to grow into tumours. Most will be near the lump. But they could be anywhere... or be ready to grow anywhere. Anywhere in the brain, that is. Your "demon" cells :-)
The main problem with a brain tumour is that... it is in the brain. With (for example) lung cancer, the surgeon will remove a bit of extra lung -- just to be sure of getting all the lump. What's left of the lung will still support breathing. Take "extra" brain and I could lose sight, or mobility, or whatever. Each bit of brain has a particular function.
The "tentacles" are (a) most likely to be close to the lump area, (b) mixed in with possibly essential bits of brain and (c) small groups of cancerous cells, so small that they are effectively invisible. Just there, somewhere, waiting to grow. Impossible to *cut* out.
In terms of why I collapsed:
The lump grew. It pushed outwards. The bruising pushed even further into the surrounding brain. This squeezed the surrounding brain... caused some form of electrical short-circuit... which caused me to collapse. Effectively a fit, an epileptic seizure. This is not a killer... unless I collapse in front of a moving bus.
Now the lump is removed, the pressure is gone, I am "unlikely" to have another fit. But I'm on an anti-fit drug. Which will be gradually reduced -- unless I have another fit.
... There are or are not metastases?
According to Robbie, the brain is effectively isolated from the rest of the body. In terms of circulation systems that could spread cancer, that is. If I have two "primary" cancers (brain & testicle) then I am rare. If the two are actually *one* which has spread out of the brain -- then I am really, really rare... Which is why the oncologists want to identify the testicular cancer. (The brain tumour is already out and clearly identified as GBM.)
The testicular cancer has definitely -- as seen on a PET scan -- metastasised into my body. The brain cancer may also have metastasised within the brain... in the form of the "tentacles" which are effectively invisible. There is no *visible* evidence that the lump has metastised further within the brain.
... Or is the chemo/radiation done in case there are demon cells lurking about getting ready to make another lump somewhere.
The idea of the "treatment plan" is to (a) get rid of any remaining "lump" and (b) reduce the amount of -- and future growth of -- tentacle. Dealing with that (a) is in the category of, better safe than sorry. Dealing with the (b) tentacles will maintain my life -- and quality of life -- until a tentacle grows into a lump in an area of brain where surgery & radiation would be worse that a lump.
As I understand it: Chemicals are selected to attack my particular variety of cancer. They shake up only the cancer cells... to make them more sensitive to radiation. The radiation then destroys the shaken-up cancer cells.
Unfortunately the radiation can still damage healthy brain cells. So it must be closely targeted to the area very close to the lump. In an attempt to kill close tentacles but not damage the general brain cells. Eventually a "demon cell" will start to grow somewhere else in the brain -- where it is too dangerous to radiate at all. Then I start to shuffle and drool and die... Or whatever :-) Depending on what is controlled by the bit of affected brain.
... Does this cancer only happen in the brain?Yes... unless I'm one of the very... very... few people where a brain cancer has spread outside the brain. Essentially, most likely, my GBM is a strictly in-the-brain cancer.
I'm expecting the testicular cancer to be a different form of cancer. It still needs to be identified so that the oncologists will know the best way to treat it. The "immediate" benefit of identifying the testicular cancer is to decide whether -- and how -- it could be treated at the same time as the GBM. Or whether testicular treatment should be delayed till after my first six-week brain treatment plan.
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There... that's it... as far as I know :-) Does it make sense?
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Dr Nick Lethbridge / Consulting Dexitroboper
Agamedes Consulting / Problems ? Solved
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Agamedes Consulting / Problems ? Solved
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"Wer den Daumen auf dem Beutel hat, der hat die Macht." … Otto von Bismarck eh what?!
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Now much more than a clever name for a holiday journal:
Yep
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