Primary in the brain

I have been coming to this site since 2001 when I was first diagnosed with BC and then drifted away as the years passed and I felt it was behind me. However last week, having some persistent if mild headaches and generally feeling unwell, and moment of blurred vision on one side, I took myself to my local hospital where they discovred some lesions in the brain. Expected this to be secondaries. Was transferred to another hospital and underwent craniotomy about 12 days ago where pathology states I have a primary brain tumour - not related to BC at all. I can’t believe this has simply come out of nowhere and these glioblastomas as they are known are really quite nasty. Recur regularly in fairly short time periods so will prob have more surgery in the future and expect to start RT and chemo next week - have done both of these before with BC so not fazed about that.Want whatever they can throw at me to give me best of chance of as many years as possible til this thing finally takes over. Sorry to hijack the BC website but as a past participant I just felt comfortable here. Have had a few very bad days coming to terms with this diagnosis. I truly believed I had beaten BC and was looking forward to many years. My 15 year old son has been fantastic and tells me he has found cases on the internet where people have survived for a long time but I have surfed myself and know there is a good bit of doom and gloom out there surrounding these GBMs as they are known, but his positivity and support is great and I don’t want them stressing over losing me. We have also had some very close moments - not something he is big on as a teenager, but he and I have had some good conversations in the last couple of days and I m very grateful for those moments. I am definitely not giving in that easily. I am also getting back into my self help principles that I adopted when first diagnosed with BC. Have let some good habits slip along the way as life became comfortable and I got complacent about my good health. Still staring down the barrel of my own mortality is not always easy and I just have to do what I can to buy myself as much time as possible. If anyone has had RT to the brain, would be grateful to know of your experiences and what to expect - in return if anyone has any questions about brain surgery please feel free to ask, either via this website or privately through my email.

Best wishes
Karen

I’ve just had a selfish wee rant on another thread but this post has put my minor aches into perspective. Life has dealt you a very nasty blow Karen, how thoroughly unfair to have to deal with this after coping successfully with you previous cancer. The support of your family must be a huge plus. You sound strong, this will surely help to deal with whatever treatment it takes to improve your situation. I am humbled by your post. Very best wishes. x

Hi Karen,

I have done a quick search for you on our system and there are lots of threads where users have talked about their expierences with brain tumors, mostly secondary breast cancer, but it might help you to read what some of their treatment options have been and the results from this treatment. If you go to the top of this page and use the ‘search’ button and then put the word ‘brain’ in the box it will bring up quite a number of threads.

Hope this is of some help to you, and welcome back to the BCC forums.

Kind regards,
Jo, Facilitator

Thank you for your kinds comments and support and thank you Jo for guiding me to the threads where I can see how other people have coped - appreciate your help. Have a great oncologist who is looking at best chemo options which may also be a new trial drug and will be getting measured for radio next week - looking forward to starting treatment as I know it is for my best and it as a way of knocking this thing over. Also enjoying some enforced sick leave - we are well into Spring here in Oz and weather is just gorgeous so am taking pleasure in being able to be at home, if under less than desirable circumstances, but being grateful for small things helps me stay positive and focused on getting well.

I once read a lovely proverb (an old indian one) on a newsletter from the Gawler Foundation (not dissimilar to the Bristol Centre) which says “He who has health has hope, and he who has hope has everything”. I love this and it keeps me going - whilst I may not have the best health, I am not done for and I definitely have hope, so I choose to believe that I have everything - some of this I measure in my ability to be mobile, look after myself, have a reasonable level of independence, a wonderful family and everything to live for. I have hope for all of you to dealing with cancer in one way or another and wish you all health for the future.

Best wishes
Karen

Good luck Karen

The person behind me in my “radiotherapy queue” has just finished her treatment for a brain tumour and is expected to do very well.

Los of love FB xx

Dear Karen

I am a previous BC battler, currently facing a possible reoccurance (awaiting results today) but in lymph nodes not brain so I have no experience of what you are currently going through. But on reading your post I just wanted to say you seem to be an amazing person in how you are approaching this. So from me, all I can say is you go girl, and keep kicking the a*** of the bad luck that has put you in this place right now.

With deep respect

Nikki

My daughter had RT to brain and she was fine with it. They make a mask which sounds awful but she said it was OK. No sickness, pain or anything … of course you lose your hair after two weeks.
Sue x

Hi Karen

You might be interested in these forums from the Macmillan for people with brain cancer
whatnow.org.uk/cancer-forums/brain-tumour-forum

(but please continue to post here as well if that is a help)

All the best

Ann