Astrocytoma Grade three

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Hi all, just a greeting and to see if there are any diagnosis similar to myself. I have a grade 3 astrocytoma cdkn2a/2b. I discovered or should I say symptoms began last year during covid.jan 2022. I woke up ( having only a mild covid sniffles) in the night for my ( I’m 46 ) mid night pee; and went to bed waking up 15 minutes later numb all down my left side and then began to /seizure fit. I was lucid/aware all through it. A and E visit was to be honest useless. Being diagnosed with influenza. So a second happened. I chose not to go to hospital from the experience as I did recover after a couple of hours. Then in my new job I had my 3rd seizure which I was taken again to AandE. They have a CT after much complaining where they found what they called an arachnid cyst (easy to remove they said but I’d have to wait until November 2022 for more information. I decided to go private which took a few weeks at spire to see a consultant. He said I’m afraid that’s a G2 tumour. I referred me straight away to Walton, in the mean time having 30 other focal seizures in my left arm and face ( I’ll explain more if anyone’s interested). So due to strikes and having a kidney stone 5mm and rushed surgery. I had my tumour out in jan 2023. Unfortunately only 60% was removed and it was diagnosed as a grade 3 strocytoma cdkn2a/2b. I have had radio therapy and am now on chemo tablets. So please ask anything as I’ve typed loads lol

  • Hello   A warm welcome to the MacMillan Community. I have just read through you personal journey and you have been through the mill with the cancer. You have also gone through Radiotherapy and Chemo - and reading your story you appear on the face of it to be doing well and the treatments are working.

    I am so sorry your post has gone unanswered - I can't reply as I have a different cancer - however by me replying it will "bump" your post back up to the top of the forum and it will be seen by other Community members with a similar diagnosis.

    If I can do anything for you please don't hesitate to contact me - I wish you well on your latest treatment.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • It’s ok Slight smile WeeMe greeted me nicely. My post was only removed as I had put pictures up. So I reposted for others to read. 
    Hope you’re well and thanks again

  • Aw that's great - She's fantastic - yes pictures aren't the best on here sometimes.

    I am fine thanks - 22 months into a Prostate Cancer journey but all is good.

    Best wishes - Brian.

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    Strength, Courage, Faith, Hope, Defiance, VICTORY.

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  • Hi W J,

    I was diagnosed with a grade 2 astrocytoma but unfortunately mine is inoperable so I’m currently on the what I like to call the wait and see line it’s every 3 months surveillance via a contrast mri to see how quickly it’s growing. I have seizures daily anything from focal to tonic clonic for the last 2.5 years this has been happening. I hope they get to remove the rest or it at least the chemo tablets help. I’m a little lost as to who to get some support from because nobody I know has a clue what it feels like to be trapped like this. I’ve just turned 43 myself. It seems like the doctors are to scared to put me into chemo but I have no clue what I’m supposed to do wait for it to change? Sorry I’m rambling but you’re the first person I’ve heard of having the same type of tumour. I’m Claire btw. How are you coping after the surgery? 

  • Hi W J I have the exact same diagnosis. Surgery was 4 weeks ago and we were pleased thinking it was a G2 until the CDKN2a/2b result came back borderline, so they have bumped it up to a G3. Doctors are now treating it much more aggresively - higher radiation and chemo - and I feel really worried.

    I was diagnosed as I was having a LOT of right side seizures (left side tumour), but all partial and GP didn't recognise. How have you found radio and chemo? I'm about to start. Did you do craniotomy awake?

  • Hello  and  I hope you don't mind me jumping into your conversation. Claire said

    I’m a little lost as to who to get some support from

    Have you tried our telephone support line on 0808 808 00 00 (8am to 8pm 7 days a week). It's a free call and I am sure the great folk on the end of the line can find some additional support for you.

    I hope this helps a little and I wish you both well.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Sorry I wasn’t here to see your replies, as I’ve had a bad cold so needed that sorting before I get my next chemo ( almost over it with anti Bs. As the kind millibob said

    MacMillan Cancer Support  0808 808 00 00. (8am - 8pm 7 days a week).

    • they’re there to help you in any way they can through your troubled times. 
      Claire11- you ramble as much as you want, that’s the point I think here, to help share and relieve your self of doubt. Sharing is caring and a problem shared is a problem halved. Read my profile, I’m using it as a little diary x stay strong. 
      Joolaboola- hey there. My chemo went ok as can be. I’ll be honest I was a bit apprehensive on the first one after my surgery as I had a seizure during my pre op MRI (2 hour MRI to see what brain parts with and without stimulus, I lasted 15 minutes lol. But was fine after). The radio therapy post op was ok. I had a mask fitting in the table, A little warm but ok for me, stretched over your face to stop any movement during your treatment. Was done in a couple of minutes. But that was the same for the treatment. Only took a couple of minutes. Very nice staff. Although I couldn’t remember their names. But don’t worry in that at all. I did lose hair on the bit they focused on but all of it has grown back (if a lil fluffy). The chemo depends on what you’ll be recommended. I was on temozolomide a week on and three off. I was ok with mine to be fair. No real sickness ( they give you anti S) just tiredness. That was for six or seven weeks. And then the chemo. Now I’m a different chemo as mine wasn’t enough. I’ll update my profile as it goes on. Stay strong friend