My Dad's sudden, aggressive BT

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Hi all

My Dad recently started struggling with his speech until one evening we suspected a stroke. After a long time spent in A&E, he was told that he had a "mass" on the brain which may or may not be nasty and that specialist surgeons would meet together within a few days and we would be then called in for an appointment with the neurosurgeon.

At that appointment, we were told that my dad had a very aggressive brain tumour that was inoperable.  He was told that he would be facing a choice between quality end of life or potentially try radiotherapy and chemotherapy. 

He had another scan and we met with the specialists again today. It was the same news but with the prognosis of weeks-months. Its just all a massive, sudden shock. We were told in order to be able to receive radiotherapy and chemo, he would have to undergo a biopsy which is risky in itself. This would also enable fast track to care and support. 

  1. My dad was of the opinion that he had to at least try. The treatment could gain another couple of months. I am just in a complete battle with my thoughts and I was hoping to find someone else (family member, perhaps) in this position of a very aggressive, inoperable tumour with a very poor prognosis. I really don't want the remaining time we have left being overtaken by hospital appointments for treatment and my dad feeling ill and tired. I want the time we have left together spent with my young children (his grandchildren) doing things together before the tumour takes hold. I want to cherish every week and do things together which I feel will be hard to do if radio and chemo was taken. Of course it is my dads decision but I guess I'm just looking for advice/guidance/experience. Thank you
  • Hi Dragonfly2022

    a warm welcome to the online community. So sorry to hear about your dad's diagnosis. Life  can be so cruel.

    My husband (then 50) was diagnosed with a stage 4 brain tumour (glioblastoma) in Sept 2020 so I can empathise with the decisions you are facing here as a family. He was told without any intervention he wouldn't see Christmas. With surgery and treatment we were told 16-24 months then post-surgery that reduced to 12-15 months. He is still physically  very fit (He's a marathon runner) but mentally less so. He has far exceeded everyone's expectations so far but we know it will all come crashing down one day. We just don't know when.

    Before his surgery, as a family we had that horrible discussion about what to do. We have two kids (then 20 and 22). He decided to go for surgery (they decided not to biopsy as the neurosurgeon didn't want to operate on him twice) then went through 6 weeks of oral chemo/radiotherapy which he coped really well with. After that, without any discussion with the family, he declined all further treatment.

    I guess what I'm saying in a roundabout way is that the final decision was his to make. I had said right from day one that I would support whatever he decided to do.  His running is his key focus in life so he opted for quality of life over quantity and to be honest, I can't disagree with his choice. In his eyes, if he can't run then life isn't worth living anymore. Its the only thing he has left from his "old life". 

    In a low moment or two a few months back he confessed to our son that in hindsight he wishes he'd never had the surgery or treatment. That was extremely hard for my son to hear and for me to hear from him.

    There are so many "big" decisions to be made in such a short time frame while you are still trying to digest the news of the actual diagnosis that it is really hard to know what to do for the best. I'd suggest writing all your questions/concerns down and taking those notes to the next appointment. It's easy to feel overwhelmed in those appointments in the early days and the notes will help to keep you on track. Make sure you all understand the options and expectations before making that decision. My husband has said that he felt swept along with what the doctors wanted to do rather than being able to decide for himself. Time was of the essence but in reality he wasn't given much time to decide what to do at least surgery wise. We saw the neurosurgeon on the Friday and surgery was the following Wednesday. 

    I hope this has helped in some small way. Everyone is unique as each tumour impacts life in different ways.  If his had affected him physically from the start, my guess is he'd no longer be with us. It's down to what the person can cope with and accept.

    This group is a really safe supportive space so please reach out anytime. I've personally drawn a lot of support from it over the months. There's always someone around to listen who gets it, someone who understands, can hold your hand and offer that virtual hug when its needed. You're not facing this alone.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Sending you a huge virtual hug for now,

    love n hugs

    Wee Me xx

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

  • Thank you Wee Me. That is really insightful and made feel less alone regarding the choice of treatment. I know that my dad would not do too well with the treatment. Like your husband, my dad has is hobby (read obsession!), which is fishing. He travels all across Europe to fish on the best lakes with the biggest fish reeling in and carrying 60lb+ carp on his own at 63. Fishing is and always has been his world, so when you mentioned "if he can't run then life isn't worth living anymore", the same would be said by my dad for fishing. It really would and it absolutely kills me inside.

    I too also feel like my dad was swept along by what the doctors were saying...have the biopsy...have the treatment. The biopsy we are told is high risk given the location of the tumour...I mean, it can't even be operated on! He was supposed to have the biopsy on Monday but it has been moved to tomorrow so there is no going back and I feel like the tumour is already causing more symptoms than it did just last week. My dad has always lived his life in hope and optimism and I feel like he is doing the same now with the doctors giving treatment as 1 of 2 options (1. quality end of life; or 2. try some treatment). They said there was no right or wrong answer but to me if treatment would be even slightly advantageous, then they would really push, if not, tell him that is what shall happen next.  

    We really don't have much time for my dad to spend having the treatment. Even if he coped well with the side-effects, we would spend most of his time left in and out of hospital. I also feel like I couldn't be with him each appointment because of having my two little children but I want to be there for him and for my children. The guilt of having both my arms pulled in opposite directions is overwhelming. My dad lives alone and although family can help where they can, of course, I want to be with him.

    Would you believe that I have already experienced all this first hand before. The devastating effects stage 4 Glioblastoma has on the patient and all those around. We lost my step-dad (who I was close to) back in 2015 who had a Glioblastoma stage 4. His was different in that it could be operated on and treated with radio and chemotherapy. It meant he had 4 years with us (with a 18month prognosis!). Of course, that meant the surgery and treatment was a good decision to make, especially when his daughters were only 9 and 11. This is different.

    I just can't believe I have found myself here again on this horrible, horrible journey but with my own dad this time and with a much, much poorer prognosis. It is completely sudden and quick. Of course, this is all very triggering for my mum and she is in a lot of shock and disbelief too. To be honest, I do think having been on this journey before does play a part in my outlook for the time dad has left and any ounce of hope is just non-existent. I don't want him to go through what I have already witnessed and as selfish as it may sound, I don't want to go through it all again too. I just wish he didn't have it at all and I will wake up and it will all be a bad dream and I get another 20 years with him and he sees my children grow into adults. I do think that having been on this journey before has made the whole process, appointments, etc. easier (if it even could ever be easy?-no) because I know what to expect. We even have the same specialist oncology nurse. I have no idea how this is even happening! Of course, the hardest part is living life after he has left us and despite having gone through it once, I still can't, or don't want to, imagine that even happening. That is why I want this time now to be as far away from the tumour and treatment as possible.

    Sorry, I know I am babbling! 

  • HI Dragonfly2022

    you're not babbling. You're doing exactly what this group/online community is for. 

    Hope the biopsy goes smoothly today. Thinking about you.

    We've been along this path before too. My mother-in-law died from a primary brain tumour (very quickly) in 1993. When my husband went for his surgery it was the same hospital and the same day of the week!  That freaked me out a bit. It was too far back in the past for the neurosurgeon to determine if she also had a GBM4 but he said it was unlikely that it was hereditary or genetic. He put it down to sheer bad luck. It does bother me though in case there is a genetic link there. She was only 58 when she passed away. My son has already joked "is it worth saving for retirement?"  Scary thought....

    You know the journey ahead (sadly) . please take time to look after yourself here. Me Time is essential for recharging those wee batteries.

    sending you love n hugs

    Wee Me xx

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

  • Thank you Wee Me. I am so sorry your family has already experienced this before too.

    It is a worrying thought of genetics/hereditary reasons. We too were given the words "its just bad luck". It does concern me though that you hear of more and more people being diagnosed with brain tumours than ever before.

    Take care all of you xx

  • I really don’t have anything to say that will help.  Wee Me gave me hope and you are not alone. So many of us are going through this.

    We have spent the last 6 years supporting my Dad who has been battling bowel cancer with liver mets. The resources, people, trial drugs were all there. And then …

    I’m about to lose my sister, she’s 53 and was diagnosed earlier this year.with a brain tumour. My heart is breaking, I love her so much and there’s nothing I can do. We sat together all day today but she wasn’t really with me. I have nowhere to go for help, I cannot believe there is not more money ploughed into brain cancer. The irony of losing my sister before my dad is breaking my heart. This is not supposed to happen in anyones life time. 

    My only advice would be stay strong around the family and come to groups and people like Wee Mee to vent or cry. To anyone in this group, we’ve got you, we are with you xxx

  • My mum also has an aggressive brain tumour but we have not been offered treatment as the surgeon said her quality of life would be poor and the cancer could not be cured - she’s doing ok at the moment but I feel like she should at least get the chance of done treatment 

  • Hi Sandsgirl, so sorry to hear about your Mum. My brother has three glioblastomas which he was diagnosed with in May this year. Since then he’s had radiotherapy and chemotherapy and recently had two treatments of Avastin. The latest MRI results have shown they have reduced the size of the tumours. As they are frontal lobe they too couldn’t operate. Will your Mum have chemo or radiotherapy ?