Newly diagnosed and Feeling very lost and upset

Occasional Contributor

Newly diagnosed and Feeling very lost and upset

About 1 and 1/2 weeks ago I just made it home from work and had a seizure in the driveway (first ever). So ambulance was called and I was taken to A&E at the local hospital. Once there they did some scans and said I had a 3cm tumour on my right frontal temporal lobe. They then said that most brain tumours are secondary and they started tests on other parts of my body. Chest and stomach. They also said they would remove the tumour and then we could start dealing with the tumour. They operated on Thursday morning, and after the surgery one of the register neurosurgeons came and saw me. I asked how the operation went and she said they thought they got about 90 to 95% of the tumour. I asked if they could tell what type of tumour it was and she said she thought it was a GBM type 2 or 3, just because it had a good blood supply. About 30 minutes later the head of neurosurgeon came around and I said I was disappointed they couldn't get all of the tumour as I was told before the op the tumour was in a good position to get most of it out. She then said she was pretty sure they got at least 99% of it but wouldn't be ale to tell for sure until pathology had finished testing and I should get the results from that on Monday or Tuesday, and we would also get the grading then too as they can't really tell just from looking at it besides the fact it looks suspicious because of the blood supply and all my other tests have come back with no other cancer being found, so it is most likely a primary tumour. So Monday morning rolls around and a gang on register neurosurgeons (the head surgeon wasn't with them) come around and tell me the results haven't come back yet and they can't tell me anything. So being the worried patient that I am I said so basically I'm at the same place as after the op, upto 99% of the tumour could of been removed and it most likely a GBM type 2 or 3 but could be a 1. The register surgeon who told me they removed up to 95% and most likely a 2 or 3 then says no it's more likely a grade 4 and a there is no way to remove 99% of a grade 4 tumour with out causing alot of damage to the brain because type 4 tumours send out little tentacles and they have to be cleaned up by Chemo and Radiation. So today is Tuesday morning and the nurses and been around and I asked if the head neurosurgeon would be leading the rounds today and they said no she isn't normally here Mondays and Tuesdays.
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Super Contributor

Re: Newly diagnosed and Feeling very lost and upset

I read your post and just thought: "GAAAAHHHHH!!!". How insanely frustrating and scary! I'm really glad you found this site, it's a great place to vent/connect/ask/be supported. Keep in touch, and I hope you get some plain answers soon. love Emily
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

Well I got the results back, and the meeting started with I would like to give you good news but unfortunately I can't. So I ask how bad is the news and the surgeon says the worst possible. OK what is that then, well its a GBM grade 4 and people diagnosed with your grade usually have a low survival rate, most people usually die between 1 month and 12 months after beginning diagnosed. So as you can assume my wife who was in the meeting and myself had a good cry and then asked what about the treatment options that they talked about before the operation. The surgeon said with Chemo and Radiation they will try and give me as much time as possible but don't expect a cure as that is highly unlikely because this tumour is very hard to control because of how aggressive it is. So don't know what to do next.
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Super Contributor

Re: Newly diagnosed and Feeling very lost and upset

I'm so sorry that your news was not more positive. Know that we're all here for you. love and gentle hugs, Emily
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

My husband is around eight and a half years after his first operation for a GBM 4 in August 2006. And there are plenty of others out there surviving too. There are plenty of reasons to have hope and treatments are getting more effective ..slowly but surely. Good luck to you and your family wishing you the best outcome possible.
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

Hi Mango, Thank you for your message, it gives some hope after being told there was none. Could you give me more information about your husbands story? What treatments did he do, how many operations did he have, has he had a re-occurrence, etc. Thanks, Paul
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

Hi Mango, Thank you for your message, it gives some hope after being told there was none. Could you give me more information about your husbands story? What treatments did he do, how many operations did he have, has he had a re-occurrence, etc. Thanks, Paul
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

Hi The short version of a long story goes like this operation to debulk radiation plus Temozolomide regrowth 7 months later with another operation. Then various chemo treatments but mainly Temozolomide at 100mg daily rather than 5/23 new regrowth controlled by thalidomide for about a year, stopped thalidomide due to neuropathy next there was a cystic non cancerous growth and third operation to reduce pressure that had resulted in stroke like right sided weakness. More regrowth and targeted radio surgery with another cystic growth ...operation 3. More regrowth and on to Avastin with the temozolomide that started in 2011 Currently the tumour is under control not growing further and even reducing. in amongst that was controlling seizures that are now well managed with minimal treatment. My husband has always been very positive. He will tell you that he cried for one day when he found out….never since. Which does not mean we have not had our ups and downs. He needs a wheelchair to get around now as the brain damage has resulted in right side paralysis, but that has just been the last 7 months. So while it seems difficult being positive is possible even in dark times, keep a focus on the things that can still make you happy and go for maximising those times and feelings. Whether its a long time or a short time who knows but let there be good times.
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

Thanks Mango, I really appreciate the info about your husband. You and your husband have my best wishes and prayers. Thanks, Paul
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Occasional Contributor

Re: Newly diagnosed and Feeling very lost and upset

Hey Paul, I have brain cancer myself, at 30 it is a lot to deal with. I Am just about to finish 16 months of treatment, 2 brain surgeries, radiotherapy and chemotherapy. I would really love to talk to you and help you by relating to brain cancer myself. My email address is: annatarrant_@hotmail.com your welcome to contact me if you feel comfortable doing so. Just remember you are not alone and there are a lot of people around you who care:) I'm here if you need me
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