Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Brain Tumor Stage 3

Billie_C
Posted by

Hello All, 

I have just been diagnosed with a Stage 3 Brain Tumor and I am about to start Radiotherapy and Chemotherapy in the next couple of weeks or so. This is a big shock for me as I am only 23 and have never had any health problems before. Has anyone got any advice about dealing with this? They said that there was only a small light spot in the MRI scan as they had said before I was Stage 2. I'm worried about the stats. 


Thanks,


Billie

akist
Posted by

Hi 

There are hundreds of brain tumours and without knowing more it is impossible to even make guesses.

In general however, is there any possibility for surgery/biopsy? If not, why not? Is it categorically out of the question, have other surgeons in the country operated on such tumours? 

Failing that is there possibility for gamma knife? Cyberknife? Is the tumour so large and diffuse it cannot be hit thus?

And many more questions about the chemo, and radio -

I strongly suggest you get Ben Wiliiam's book and read it end to end many times.

Good luck

Billie_C
Posted by

Hello, 

Thanks for your message.


The constant that I spoke to said that there wasn't much point having more surgery, as they have taken most of the tumour out, and the last bits would potentially permanently affect my speech. I'm left handed and the Tumor is on the right side of my brain.


I haven't had any information about the gamma knife/cyberknife so not sure if that is an option yet. 


I'll definitely get the book, thanks for the suggestion. 


Thank you. 

Swren
Posted by

Hi Billie, I was diagnosed with a brain tumour last year, originally it was thought to be a grade 2 but it is now confirmed to be a grade 3. as my tumour was very large-10cm I had to have surgery in 2 stages. Unfortunately all the tumour was unable to be removed due to where it is so I had to have 6 weeks of radiotherapy back in february and i am currently on chemo. The radiotherapy will make you very tired and you will most probably start to loose patches of hair about 3 weeks into the treatment where the beams enter and exit your head. I lost most of the hair on the right side of my head because thats where the tumour is and a patch from the left side as well but it has almost grown back now. I have been lucky enough not to loose any hair so far on the chemo.

My best advice for you would be to always try to stay positive even if you don't feel it and always make time to hang out with friends, it can be a good distraction from what is going on even if just for a while.

Billie_C
Posted by

Hello, 

Thanks for messaging back. 


I feel like we're in the same position really. Ah yeah the consultant and nurse mentioned that i would lose my hair, I'm surprisingly calm about all of that for some reason. 


I'm just feeling really scared at the moment, but strong and positive at the same time. 


How are you feeling? I hope that you are feeling positive about the whole thing. Have you had any further information about your treatment? 

ruthp
Posted by

Hi Billie,

I was in exactly the position you are two years ago,  I am also left handed and my stage 3 tumour was giving me a shaking left arm and affecting my speech, two years on and I am yearly scans, forget statistics, you are yourself not a number on a graph. I completed 6 weeks of radiotherapy and to be honest it wasn't bad at all, the biggest pain of it all was the travelling back and forward to hospital on a daily basis as I live in a seaside town and my radio was in the kids school holidays so although the hospital was only 4 miles away, it took an hour to get there and an hour back through the holiday traffic for 15 mins in a hospital. Then followed up with a couple of rounds of chemo.

The only time I get speech problems now is if I get really tired but on the whole that is controlled by my daily Keppra med , imagine a Publican with slurred speech and shaking hands, heaven knows what my customers thought!!

Anyway, remember don't play Dr Google, its not healthy!

wishing you all the best

Ruth

Billie_C
Posted by

Hi Ruth, 

Thanks for your message. 


I feel better knowing that you are in a similar position to me, I just want to get all the radiotherapy over with really! I hope the results after will be positive. 


The hospital that I'll be going to is quite far too, probably about 45 mins to an hour to get there! But at least I'll have the weekends free without doing it!


Thanks again.


Billie

sammie_x
Posted by

Hi Biĺlie_C

As a lot of us have said, your not alone in this.  I was diagnosed in May 2014 with a Grade 3 brain tumour which unfortunately cannot be removed.  

The best advice I can give to you to is firstly, stay away from Google - Everyone is different and we all have different signs and symptoms.


Secondly, have you spoken to Macmillan?  Lots of Hospital's now have a Macmillan information hub where you can get lots of information and help with different elements.


If you have to travel a long way, ask your hospital if your local ambulance service does transport.  I live 40 miles from my hospital so it's hard to get there as I am not allowed to drive, but also you may feel tired afterwards so it really helps.


Good luck!


Sam


Swren
Posted by

Hey, I hope you are doing ok. 

Best of luck with your treatment. The radiotherapy really isn't that bad at all. The worst part for me really was having to lie still with the mask on! They will try and make you as comfortable as possible before they lock the mask into position because once it's clipped to the table you won't be able to move your head at all and you won't be able to see much of what is going on either but there should be someone there to explain what's going to happen. It does take awhile to get used to the mask and it will probably feel a lot tighter than when it was first made but you do get used to it. 


For me, the chemo tablets aren't that bad either! I take them for 5 days out of every 28 and have minimal side effects as long as I take my anti sickness tablets a half hour before the chemo and don't eat for an hour after it. The worst part is the tiredness but that does go as soon as I finish the tablets. But that's just me. It could be different for someone else.






Billie_C
Posted by

Hey, 

I'm alright thank you, how are you feeling? 


Thanks for letting me know how you've got on, you seem to be dealing with it so well. I was worried that the radiotherapy would be painful, but the nurses at my recent appointment said it wouldn't at all. So I was relieved about that!


What is next for you after your chemo tablets? I'll be going through the same process as you in terms of the radiotherapy and chemotherapy, apparently these treatments have changed over the past year. I think before you would do them both at the same time but now we would do one after the other. 


I hope you are feeling positive, I'm trying to be fore sure! 



Swren
Posted by

Hey,

 

I'm feeling really good at the minute so I can't complain! 

From day 1 I've always been very positive about my whole situation! I think it's because I never had any symptoms before I was diagnosed and still don't. The only time I feel anyways different is when I am on the chemo, so the majority of the time I forget there is actually anything wrong with me and I lead a completely normal life! 


I have my first scan since starting my treatment coming up in august so I'm guessing it will depend on the results of that what the next plan of action will be after the chemo! My consultant wants to do 12 rounds of chemo and that will take me up to february 2018 so I still have a long journey ahead of me, but I just go with the flow and take each day as it comes! 


Try to keep positive because it doesn't do any good worrying about something we really have no control over. 


Someone told me at the start of my journey - " a positive attitude will lead to positive outcomes" and its definitely working for me so far!

Billie_C
Posted by

Hey, 

Amazing, I'm feeling the same pretty much with the whole situation. I've felt so positive despite what is happening at the moment. 


It's just a bit crazy really because I had no symptoms at all either and I've never had any health problems. But I feel that we can both get through this.


You'll have to let me know how things go with your chemo anyways, I hope it all goes well with you. 


How are your family feeling? 

LJ1954
Posted by

Billie_C

Hello All, 

I have just been diagnosed with a Stage 3 Brain Tumor and I am about to start Radiotherapy and Chemotherapy in the next couple of weeks or so. This is a big shock for me as I am only 23 and have never had any health problems before. Has anyone got any advice about dealing with this? They said that there was only a small light spot in the MRI scan as they had said before I was Stage 2. I'm worried about the stats. 

Thanks,


Billie