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FormerMember
FormerMember

Hi everyone, I was diagnosed with 2 low grade brain tumours, after a biopsy still undetermined as to the names, in 2015.  I am on watch and wait, I spent 2015 and 2016 holding my breath it seems, in suspension of sorts, now I'm starting to come out of it, actually reading up about living low grade and seeing what's out there to do and live, to really live again, not sure about making long term plans again but I want to experience as much as I can.  I feel like I have been going through the motions, making sure everyone was ok with me being ok, and living as normal as possible, scared and putting my head as far in the sand as possible.  Anyone else felt this way? Just wanting to put myself out there and see who's about to chat to :) 

  • Hey Scoops,

    I know what you mean. It's a bit of a shock when you find out there's something up there and then you don't quite know what to do with yourself when you find out that they aren't going to do anything. (They being the tumours and the doctors both). I quite often forget about Tom sitting up there (Yup, I named him), because there's so much other crap going on. Then I get a headache, or a sharp pain, and figure that's him saying hi. lol.

    But yeh, totally agree with you on all those emotions. :) Glad you seem to be doing ok though, and looking to 'get back out there' again. Start small, and work your way up!

    Lass

    x

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • Hi Lawscoops,

    This is the first time I hear someone having an indeterminate biopsy! OK, I am not an oncologist. Did you actually read the biopsy report? Sometimes it is a couple of pages. First they describe the specimens. Then they make an assessment. Very important to know what it is and all the prognostic factors. Also some cancers are encapsulated and some are diffuse. It's much better to have the former. And prognosis is also much different depending. I get the "watch and wait" but not that they do not know what it is. Many times they can tell straight from the MRI, let alone a biopsy. What gives?

    Akis

  • FormerMember
    FormerMember in reply to akist

    Hi Akis

    Thanks for the questions, I see my consultant on 25th this month and have already decided to ask for copies of my notes and scans, I believe mine is diffused as he has already told me if I get to the point of having more surgery then I will lose a significant chunk of my cerebellum.   He sent off my biopsy to his pals in the states and all they could determine that it was 1 of 3.  I think I just accepted all he said as he is the one that knows what he's doing but now Im feeling more myself again I am armed with a load of questions this time.  What he did say was I could have had these for years, but only just got some symptoms which produced the find.  My hope is that they are so insignificant and the lowest of the low grade that they can't figure it out yet.  

    Laura

  • FormerMember
    FormerMember in reply to Lass

    Hi Lass

    Yeah totally, Tom been there long? In some twisted way mine have been quite liberating and sounds so cliche but I really have had a change of outlook, and soon to be total change of job!!!! Taking leaps all over the place, life without fear and all that haha.  I totally feel a touch of the ups and downs.  I have this years results coming the 25th, made plans for june so they best be behaving.  Hope you are well

    Laura

  • Hey Laura,

    New job and outlook sounds awesome! I did the same thing a couple of years ago. Had to leave my job because of how they were treating me as I had various ops and radiation treatment for my thyroid cancer. Then wondered what to do. Decided I might as well take the opportunity to retrain, so did two years in college and I'm now trained as a professional baker! Unfortunately, health hasn't allowed me to get back to working yet. But when I do, it'll be in a much better place than I was!


    They have no idea how long Tom has been lurking up there for, but they told me they found him on the 1st of April - lol - 2015.


    Ups and downs are totally normal, but it sounds like you're absolutely making the most of the ups!


    Lass

    Xx

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • FormerMember
    FormerMember

    Hi

    2 brain tumours, have you been tested to see if you have NF2? There's loads of reading about it online but it's a condition which causes tumours to grow in pairs? I could be wrong but just an idea for you :)


    I discovered my brain tumour at Christmas and had emergency surgery two weeks later. It's the unknown which makes things scary but thankfully they've found it and your being monitored 

  • FormerMember
    FormerMember in reply to Lass

    Hi Lass,

    Sorry for just jumping in here but from also being on the thyroid cancer group myself I see you've posted there and here too. I was diagnosed with papillary thyroid cancer with metastatic spread in 2008, had my last treatment in 2013 then in June 2016 I had a routine MRI and a low grade tumour sized 1.3x1.7x2.5cm was found in my fourth ventricle, prior to this, I was sent to the rapid eye unit for lots of pain in my temples eyes and head where I had a brain scan but they missed the tumour there.


    Sorry also if my post seems a bit all over the place, I blame the mouldy mushroom taking my valuable space up there.


    Do you mind if I ask a couple of questions?

    Do you know what type of tumour yours is? They suspect mine is a subependymoma, these are extremely rare and when found, are usually in elderly people, I am only 33 :-(

    When I was around 11-12 years old I had an accident which led to multiple head X-rays of my jaw, my own personal opinion to which I honestly haven't found much evidence to back it up is that the X-rays caused my thyroid cancer and my brain tumour, (as they both seem to be in the same region) did you ever have head radiation as a child? I found in my paperwork I also have a common tumour in T12 of my spine, called a haemangioma, no medical person has explained that to me though I had to google it.


    I hope you are doing as well as can be in both of your journeys,


    Take care


    Samantha


  • Hey Samantha.

    Sounds like you've got a lot going on too!


    I have papillary thyroid cancer with metastatic spread too. I found the lump in 2012, and it's all been going on from there. Lol. Just had my latest dose of RAI at the beginning of April - number 4 for me, with 5 probably happening end of next year if we follow the pattern.


    Where had yours spread to? Mine is in my bones unfortunately, last scan showed it now in my spine, T8 and L1, and still in my rib - Eve.


    Tom - the brain tumour - is a meningioma, they think. Though he didn't react to the contrast dye as they expected, and they say it's possible that it's a bit of thyroid cancer that has grown there and become well encapsulated and calcified.


    No head radiation when I was younger that I'm aware of. Though I did break my arm when I was about 5, so had X-rays on that.


    They actually think my thyroid cancer was caused by Chernobyl. Because the extent of the spread of the cancer is what they would normally see in someone much older, and it's reacting to treatment in the way confirmed Chernobyl cases do. I'm 35 BTW. So because of Chernobyl..... I had a LOT of radiation as a child. Lol. Radioactive Iodine to be precise. Hence the massive increase in Europe of thyroid cancer cases.


    Lass



    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • FormerMember
    FormerMember in reply to FormerMember

    Sam

    I too have been diagnosed very young. I was 24 and they think I've had this tumour for 10 years. I have an acoustic neuroma which again is rare 13 in a million chance of getting it and typically you would get it between the age of 40-60. 


    I hope your doing well! It's a journey but one of the silver linings for me has been how young I am and it's allowed me to recover from a 15 hour surgery and numerous alterations afterwards 


    Sophie x

  • FormerMember
    FormerMember in reply to Lass

    Wow Lass that is horrible, I really do feel for you. I had spread to nodes in my neck, most were taken when I had surgery, I have a small scar on the other side of my neck where the surgeon was going to take more nodes but he obviously decided against it but as they are still slowly growing I have to have them scanned every 6 months. 

    What do your team plan to do for Tom? I'm on a watch and wait atm, my next scan is July to see if it has grown. In one way I hope it has grown so I can get the unwanted lodger out, and also so they can actually give it a factual grade instead of an educated guess. I'm so scared it has bad cells hiding inside but because of its location, a biopsy can't be performed. Then on the other hand I'm absolutely petrified of brain surgery, I also have eczema on my head where they would need to cut so I'm scared of infection, not healing properly, scared of actually dying during or after surgery. I'm scared to leave my children without their mum.  


    From the MRI pic, it looks like it's using my brain stem to lean on which would explain my morning sickness I've had for years and also these horrible dizzy off balance spells. Although the nurse says is not related, yet when I researched symptoms of a subependymoma in the fourth ventricle I have all symptoms listed.


    I hope you have the best care you can get for your horrible situation, hopefully they can cure you!!


    Thank you so much for replying, I've not found one person since scouring the Internet with the same tumour as me, I have even joined a few American sites to find a fellow sub sufferer with no luck.


    I hope your journey down this path has a super positive note at the end of the road, when it eventually comes into sight! 


    Sending lots of luck and positivity xxx