stereotactic Radiosurgery

Thank u Gina 

Good luck for tomorrow. Let us know how u get on pls x

Hi Floralwoman

As you wanted to know, sorry it's not good news on my results.

I have copied an pasted what I pasted what I put in my primary group.

Well... Today I had bad news, really bad news and the to finish off really worse news.

CT showed what I thought was in my spine is actually the middle section of my right lung, has grown from 1.5 centimeters to an inch.

The brain mets are back and just as big as they were before surgery 8.5/6.5 weeks ago. They are quite a lot of cyst again, maybe more than last time, rather then solid tumour. They have 2 knew ones as well. Because of this, I can not have the gamma knife surgery and the London surgeon can't do anything for me.

So I have three options.

1) Do Nothing

2) Have full brain radiotherapy, I will lose all my hair, the side affects seem to be quite extreme for some. Followed by chemotherapy.

3) Have chemotherapy, but because of the blood/brain barriers, might not have much affect.

I responded well in the past to chemotherapy and radiotherapy. But brain can be different. Plus, the decision between quality time or prolong.

I have never asked time scales, I know when I went for surgery, along the lines of 'within a few more weeks, you wouldn't have wanted to get out of bed' or 'you would have been in a bad way' were said. So I would imagine, especially with new ones, I doubt I would have long. Also unless I ask how long, it would be difficult to put into context, (if they could even give an answer) how much additional time treatment would give, plus I would no doubt be feeling worse, along with the growth and the side effects of treatment. 

Oh Gina, I'm so sorry to hear your news.

Your options are such a Hobson's  choice too.

 Asking how long seems to me a pointless exercise, since we're all individuals n respond differently to both the cancer n any treatment.

An thinking of u n wishing u the strength to make the best decision for u.

Cancer"s such a bugger isn't it?

Sending big hugs,

Sue

When I went  to the National Neurological hospital in London( at UCLH) for gammaknife treatment in March , they said if they found further tumours they'd b able to treat them as well as the original one I'd been referred with. Can your hospital not do that with the new tumours n cysts?

In the event, I didn't need treatment as it was inactive, but the principle still applies.

It was there I was treated and they cannot do the gamma knife because it's in the lining of the brain... Unfortunately it's not possible for me. Plus the scan was done 6.5 weeks after the surgery, and it has grown almost to where it was before than, they won't do anything. I'm a high grade NET with 80-90% HI67 (the rate of which cells are dividing) means this is extremely aggressive.

More swear words. Thought I'd come with a possible solution...

Hi Merlot21,

Any news re your MRI results? Or did u only have the MRI today n have to wait for results?

I am just off for the mri scan now and hopefully will get the results back on Thursday. Have just had a couple of days away with friends and felt really well and positive. Actually slept all night as well ! 

Today I feel awful, maybe over did things. Tinnitus worse than ever and making me dizzy and pressure in my whole face. This thing is so unpredictable one minute feeling I am getting better next sure mets have spread - just need these scan results to know what I am facing.

So sorry to hear your news Gina. I feel for you, you have some very difficult decisions to make. Please take your time, I hope you have some good support around you.

Glad u had time with friends. Makes all the difference.

Will b thinking of u re results. I find I need to pace myself, ie if I have a busy day to take it easy the next. Too many busy days on the trot n I'm whacked. Nuisance but I have to accept it n juggle things around whenever possible. 

Oh

I'm just catching up and am so gutted for you, what shocking news. I'm so sorry you're in this situation. 

I was written off when I had 5 brain mets (too many to treat they said) but I saw a consultant who suggested I try (long shot, she said) immunotherapy. It has disappeared 4 of the mets and is shrinking the 5th. I then went in for radiotherapy to tackle the 5th but the planning scan showed significant reduction so now I'm just being treated with pembrolizumab. Just weaned off steroids as all swelling on brain has gone too. 

I'm sorry if I'm preaching to the choir, we all want to clutch those straws for each other hey? 

I'm hoping you are coping ok and have some amazing people around you. Thinking of you.