Whole brain radiation?: Hi My father... - The Roy Castle Lu...

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Whole brain radiation?

Markpi profile image
4 Replies

Hi

My father had lung cancer suspected 3 weeks ago from a radiograph, and things have moved quickly to confirm the suspicion. An adenocarcinoma has been confirmed at bronchoscopy/biopsy, but unfortuately a CT scan has shown 2rys throughout both lungs, but more worryingly in his brain. The oncologist is also suspicious of a couple of area in Dad's spine - due MRI next week & if confirmed will irradiate these areas.

The oncologist has suggested WBR to try to control the 2ry's in Dad's brain as Dad is still quite well - suffers from fatigue but able to look after himself.

Dad has been started on dexamethasone & morphine, and the pain in his back is under better control now

Dad has never smoked so hoping may be an EGFR mutation thing going on as Iressa has already been talked about.

Dad is 78, but a fit one (or so we all thought till 3 weeks ago)

Does anyone have any experience or recommendations to WBR or not?

Thanks

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Markpi
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4 Replies

Hi, I've no experience personally of WBR but I do have stage 4 NSCLC. Since my diagnosis i have done a bit of research should things progress and I get brain mets. If i did I would want 'cyberknife' to any brain mets. This is a targeted form of radiation that only affects the 'mets' not the whole brain. there are however only 3 machines in the UK and all 3 are in London. " i the private sector and 1 NHS at Mount Vernon Hospital. The link will tell you about it.Hospital.cancerhelp.cancerresearchuk...

questions/treatment-with-cyberknife

In the private sector it costs approx £20,000 per treatment! Some health authorities will refer you to Mount Vernon Hospital for treatment (I am in Staffordshire and mine does) it may depend on where you are. The reason I would want to go down this route is that WBR can cause memory problems and altzeimers, not in everyone but it is a risk. If it is the only option though you have to think about the risk Vs the benefits. I was only 49 when diagnosed so cyberknife would be my prefered choice.

Hope that helps

Lyn x

Billculbard profile image
Billculbard

Sorry Mark. I have no experience of WBR. Bill

Markpi profile image
Markpi

Hi

Thanks for that, I haven't seen the CT scan but Dad has more than 3 mets so that seems to put him off most NHS guidelines for treatment anyway, even in those trusts that would support stereotactic radiotherapy.

Mark

Scaredlady profile image
Scaredlady

Hi

I don't have experience with WBR because I have refused to have it. I have 13 brain mets & a tumour in the optic nerve. Chemo seemed only treatment which I had refused for the adenocarcimo if the left lung..stage 1V at the time. I had some alternative treatments & wasn't expecting it to go to my brain.

My oncologist told me that the 'only' side effects of WBR was losing short term memory, hair for sure & dreadful headaches. 'Is that all? I asked sarcastically. All the things I have been trying to avoid. I refer to rake my chances with the disease rather than the cure. None if the ther treatments would be any good for me. Too many mets fir cyber knife if targetted radiotherapy. To be honest I don't seem to be having terrible symptoms from my brain yet. A low foes of steroids cintrolled the inflammation & swelling while I was having chemo & I am now weaning myself off them.

There is a thread on The Macmillan site about this very subject-you may find it interesting. Sorry admin if I shouldn't have mentioned it here. You will need to register I think.

Best Wshes

Laura

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