Updated 12 April 2017

My cancer diary – part 4

After having one of two brain tumours removed, Lynn has to go for a PET scan. She tells us how it went.

Last time Lynn told us how the smaller of her two brain tumours were removed. Concerned that there might be more cancer hiding away in her body, the doctors booked her in for a PET scan.

The following email was sent soon after the scan. (Click here for Lynn's previous message.)

Hey everyone

Welcome to the latest instalment of Lynn’s Anatomy.

The PET scan (scam?)
Well what a disappointment. No glowing (never mind in the dark), no people walking around in space-age type radioactive suits: just a tiny little jab in my arm and the radioactive stuff was in my veins in less than 2 minutes.

Then I had to lie on a bed for about an hour reading a mag (it was sooo difficult as you can imagine) and then they put me in the PET scanner. Looks just like an MRI scanner that you see on the movies but it doesn’t make a noise.

So they strapped me down, covered me in blankets and put me in and I just had to try very hard not to fall asleep as I was warned to “not move a muscle” and I don’t know about you but I sometimes “twitch” in my sleep so I thought it better to remain just this side of conscious.

So the first part of the scan took half an hour; they then told me to “empty my bladder” again and then they put me in feet first for about 15 minutes and that was it! All I was at the end of it was hungry as I wasn’t allowed to eat anything from 6 in the morning and we finished off at about 3!

The results
So then yesterday we went to see Prof Vernimmen (good Dutch name that, what!) who took us through the PET Scan but is actually a radiotherapy specialist who the oncologist referred me to for his opinion on the other brain tumour (Thing 2)

So just a reminder: the PET scan was done to see whether there was any other cancer lurking in my bod anywhere.

The PET picked up the lesion in the brain and a few others in my chest cavity area. There is apparently one in the lower part of my chest which is 4.3cm near an airway, and then two others (2.5x3cm and 1.5x1.5cm).

They are not attached to any organs by the sound of things, but rather in the middle of everything… technically called the azygo-oesophageal recess and media stinum which is “The space in the thoracic cavity behind the sternum and in between the two pleural sacs (containing the lungs)”.

The Prof said that we must accept that these are also melanoma-related and just like we had a flare-up in the brain, we’ve had a flare-up here. So we have to assume the whole body is affected in some way and therefore move to “oncological management” for this.

He said we’d probably be looking at starting with chemo and then we repeat some of the tests to measure the chesties and follow up as we want them to be getting smaller and going away.

If chemo doesn’t really work then we can also look at radiotherapy and possibly even surgery for these.

The good news
But just like there have been many blessings in all of this, here’s an example of another one. If we hadn’t done the PET, we wouldn’t have picked up the chesties as they didn’t pick them up on the X-rays (although the Prof says we’d probably find them now because we know where to look) and who knows how big/advanced it could have got before we discovered them!

The other good news is that they didn’t find any other tumours in the brain so we’re just left with Thing 2.

Now Thing 1 was a nice little round blob, close to the front and easy to get to but Thing 2 is a bit hazy and irregular around the edges and bigger. So from a surgery perspective, it’s in an awkward spot, it’s not well defined and it’s close to the area where vision (particularly peripheral vision) is managed.

So while surgery is possible, it’s not ideal (because you also want to get it ALL out, you can’t leave little strands behind), but the super good news is that Thing 2 makes a perfect candidate for radiotherapy. Prof V explained the various types of radiotherapy and the pros and cons of each and it seems that the PROTON Beam Radiation is the bombe for what I’ve got.

Unlike other forms of radiation where you have to nuke the whole area until you get to the tumour (so if this is say 5cm in, you have to nuke the 5cm of brain until you get to the tumour), the Proton beam thing is highly targeted and you can direct it just to the tumour so you only nuke the tumour.

An ideal candidate
The size, positioning etc of Thing 2 seem to make it an ideal candidate for this Proton Radiation and what’s more, you don’t get sore and you don’t get sick.

The side effects are pretty much zero in the short term (maybe a headache and possible loss of concentration), but later, like 10 – 14 months later, the surrounding brain goes through an inflammation / swelling phase and you get the same symptoms back (headaches in my case) in which case you treat with cortisone etc like they are at the moment.

And then if other brain tumours develop (which is possible), then you look at the options again but because you haven’t done whole head radiotherapy (which you can only ever do once), the other radiotherapy is still an option.

Prof V seems to feel very confident that this treatment will sort the brain out one time. There will be scarring but if it’s smaller and takes up less contrast on the MRI then we know it’s worked. If it gets bigger then we assume the treatment hasn’t worked and we look at the other options.

Next steps
So the next step is to get to speak to and see the oncologist (I’ve given up after leaving five messages within 24 hours) to discuss treatment for chesties and how long the chemo cycle will be, what it will be etc. and then schedule the brain proton radiotherapy which will be in the first week or two of Feb as the particle accelerator is shut for annual maintenance at the moment!

Good that I’ll be getting a newly serviced accelerator working on me (er… I think!). Hopefully they didn’t drop a bolt in the generator or anything.

So I think they will run the treatments concurrently but not sure as yet. So the timing of it all is a little hazy still but hopefully we’ll have some clarity soon.

Telling the girls
I told the girls the news this morning and they seem to be taking it all in their stride. They really are just too precious.

I think Andre was a little shaken yesterday because we kind of moved from a relatively high risk, quick action required brain issue, to the brain seemingly being less of an issue with a real good, low risk solution but a new curveball of the chesties which Prof thinks will be the thing that is going to require the more longer term management.

Mom is a little stressed (so please say extra prayers for her) but overall we’re all doing well.

I’m feeling great (although I have developed a very very big moonface and am starting to feel the effects of being on cortisone for a month – gosh it’s a month today actually that I went for my first scan) and besides being annoyed that I can’t organise my life because I keep having to wait for people to call me back to make appointments (aargh!!!) am doing really well. I still have to take it easy and can feel it when I don’t but all things considered I’m fab!

Thank you all for your support, encouragement and especially prayers. I’ve said it before and I’ll say it again, they mean the world to Andre and I so please will you keep them up.

Lots of love

(Lynn Ferreira, January 11 2008) Click here to read Lynn's next message.

Read more:
My cancer diary - part 1
My cancer diary - part 2
My cancer diary - part 3
My cancer diary - part 4
My cancer diary - part 5
My cancer diary - part 6
My cancer diary - part 7
My cancer diary - part 8
My cancer diary - part 9
My cancer diary - part 10
My cancer diary - part 11
My cancer diary - part 12
My cancer diary - part 13
My cancer diary - part 14
My cancer diary - part 15

February 2008


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