Diagnosed with a benign brain stem tumor earlier this year

hi I'm Kate. I'm 25 and earlier this year I was diognosed with a brain stem tumor. They are treating it as benign even though my biopsy results were inconclusive. I've just finished a course of radiotherapy and feel absolutely rotten. 

What I want to know...is what was your reaction/first thought when you were first diognosed? Because before my results came back, all I could think about was my nephews and how I would never get to see them grow up...but I still feel that way...is this normal? 

  • Hello Kate,

    I was diagnosed with secondary cancer in my lung and brain 18 months ago so not the same as you but I think because it was the brain it seemed to be more terrifying.

    Not knowing what effect any treatment might have  was a concern,, I didn't have radiotherapy, I had an operation and it has taken time but I am able to drive again now. I had radiotherapy 15 years ago for my breast cancer and found it very tiring but no after effects. 

    So to your question about reaction to diagnosis, I was convinced  I had no future but so far so good.! 

    Good luck Kate, it is natural to feel scared, and if anyone tells you you must be positive,  .......... Say what you feel, ...... that really annoys me. ,!! 

    Eileen 

  • Hi Kate, its been less than 3 weeks from my diagnosis to surgery.I have stage 3 aggresive breast cancer.I had a lumpectomy 3 days ago and 2 lymph nodes removed.My first thoughts were ridiculous! i was like, well i dont smoke, dont drink, never done drugs,ive never done a line of coke.What a silly thing to say lol but i said it! Then i was very tearfull,i have been with my husband since 19 and i had a birthday on monday so now 48 and still totally in love.I have lots of plans for next year, 25th wedding anniversary, change the car,going to be a nanna( found out 1 week before diagnosis!) have 2 lovely kids age 21 and 22 still living at home.I still feel like i am in a silly dream and the odd time when i wake i forget for a minute that i am in this crap c club.I dont want a label,i dont feel ill.I am currentely waiting 2 weeks to see if the cancer has spread into my lymph nodes,which is a yukky feeling.Today i have been emotional and dont know why.I too have been thinking about my little neices and family members.I have been telling everyone i love them more.My house is looking like a florist,and have lots of messages of support.I have had to stop work and driving by my surgeon but still feel like im being phoney as i really dont feel ill.I hope you get some comfort or laugh at my words.I wish you well and thankyou for sharing from Pepps xx

  • Hi Kate, I dont want to sound callous or insensitive or wanted to suggest anything (just expressing my personal feelings), but honestly when i was told i had a cancer... i felt somewhat kinda the relieve. Having a cancer kinda helps me realize something important that i missed. It motivates me to do things that i would really love to do but never had the courage to do so. It kinda help me learned that in the long run, there is nothing to worry about. In fact i had never felt more alive and better than before. I dont know, maybe because ive spend most of my life pondering about mortality and the "transcience" of existence that i was not bothered anymore when that natural fact of life is now "threatening" my very own existence. Its kinda feels like I will soon learn and realize all the answers to my questions which ive been asking for a very long time now.
  • Hi Kate,

    My wife had radio therapy on her brain for a non-cancer issue a few years ago and feeling rotten afterwards is pretty much par for the course.  Hope you feel better soon. 

    My initial reaction to my own Stage 4 diagnosis was "oh cr@p, I thought they were going to say that!" I was also emotionally numb and very objective about things. I researched survival rates and realised that I had only a 5% chance of surviving for over three years. I rationalised this as meaning that one in twenty patients in my position would survive, so why shouldn't I be that one person in twenty? 

    I am at peace with the fact that my life will probably be cut short, but I'm b*ggered if I'm going to give in without a fight. I will do whatever is needed to improve my chances of surviving with a good quality of life. I was lucky enough to respond well to chemo but I also set myself some challenging physical targets when I came off chemo. Almost all my hobbies are outdoor and physically demanding, so getting my fitness back post-chemo was important to me. 

    Best wishes

    Dave

  • Hi,

    I think your reaction was rather unusual, possibly unique! I'm glad you found the experience liberating. I guess that we each react in our own unique way. As a convinced atheist, I see death as being simply the full stop at the end of the sentence which described my life. 

    Best wishes

    Dave