Family member diagnosed with high grade Glioblastoma

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Family member diagnosed with high grade Glioblastoma

My step father (62 y/o) has just been diagnosed with a high grade glioblastoma. 7 month ago he had a seizure and was diagnosed with epilepsy due to a white mass shown on his MRI. 5 1/2 months later my mother and I found him having another seizure and the follow up MRI showed no difference to the  white mass (17th Jan 19), however their was other concerns. Surgery was confirmed for 24th Feb 19 after more texts.  Another MRI (25th Feb 19) showed large tumour and more smaller tumours, in a different region; expected to be unrelated. Surgery same day where they removed the large tumour successfully however it had a lot of blood vessels attached. It had grown all in the space of a month. More areas of concern were identified however are in areas they can't get too. 

Another MRI due today, then a biopsy Monday to determine what the other areas are. 

 

The deterioration in the week before the MRI was significant. Memory loss, decision making etc. He's just not himself. 

 

The surgeon advised my step dad and mum last night that all the tests have come back negative (not good), and he is recommending the STUPP Protocol (chemo and possibly radiation) depending on the biopsy. 

 

The tumour that grew rapidly was in his sensory pathways, and the surgeon expects more could grow rapidly. Prognosis weeks to a year. Hard to say until we get the biopsy results back and follow up MRI's.

 

My family is very close and due to my step dad's memory and decision making processes not what they were, we're not sure if he will be able to make a decision on his treatment although we want it to be his. Months ago he entrusted my immediate family members (3 of us) with being able to make a decision should he not be able too. 

 

Both my mum and I aren't sure if we are keen on Chemo and Radiation for him. It seems a bit pointless if your last weeks/months/year are going to be in suffering when we can spend the time doing what he likes and making it enjoyable. My partner's wife died of cancer in her late 20s and had both treatments and he said he wouldn't wish it on his worst enemy; and it did little to prolong her life. 

 

I'm really just looking for some commentary as to whether patients and carers believe that quality of life is better than the treatment, and any suggestions. It's a horrible decision for anyone to have to make so we'd like to go into it, or my step dad go into it, with as much of an understanding as possible. His mother died of a brain tumour as well (different type) and he remembers that the treatment was horrendous and did little to assist. She was about 80.  

 

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Super Contributor

Re: Family member diagnosed with high grade Glioblastoma

Hi Beck,

 

It is so hard to make a decision about having treatment or not.  I am the type of person that says I would go through hell just to live another day - to spend that time with my family.  But having said that, the side effects of  my chemo treatment are miniscule compared to what others go through.   I am terminal and on an oral chemo in the form of a tablet I take every day.   I might be singing a different tune if my side effects were horrible.  I do think quality of life is very important - after all, what is the point of being alive if you're not "living".

All I can suggest is that you all sit down together and have some honest discussions about it.

Whatever is decided, I wish you all a peaceful journey.

 

Budgie

 

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New Contributor

Re: Family member diagnosed with high grade Glioblastoma

Thanks for your comments Budgie. 

 

Turns out no treatment will go ahead.  I've just picked my step dad up from the hospital and brought him home on the surgeons recommendation.  The MRI on Friday showed the cancer had spread to the other side of the brain and the smaller tumours had grown substantially.  

 

We were told to take him home and as soon as we can't care for him we'll take him into palliative care. The specialist said it would be unlikely he would make the month out. 

 

She he's home and is very happy to be. His mood is good and we'll just take it day by day.

 

My brother had a lump checked out whilst he was at the hospital with my mum. The lump appeared on his neck in the last week. One test after another and a biopsy and PET scan and he has a cancer in the lymph on his neck. Surgery this week then chemo/radiation. 

 

I'm not sure what my family's done lately to piss the health goods off. Maybe I've walked under too many ladders! 

 

We'll just role with the punches and take each day as it comes.  What more can anyone do. I'm just so pleased my brother had the lump seen to so quickly.  It's not in his nature. 

Super Contributor

Re: Family member diagnosed with high grade Glioblastoma

You have my deepest sympathies, Beck. 

I hope your Stepdad’s final days are pain free & as happy as they can be. 

 

I understand what you mean about the “health gods”.   My mother, 2 sisters, a brother, grandmother & aunt have all had one form of cancer or another.  Quite a few of them died from it.  That’s just on my side of my family.   There’s a few on my husbands side as well.

Cancer is everywhere unfortunately.  So we need to keep our chin up, take a few deep breaths & then carry on. 

Life goes on. 

 

My my thoughts are with you & your family. 

 

Budgie

 

 

Occasional Visitor

Re: Family member diagnosed with high grade Glioblastoma

Its really hard to decide whether treatment can be taken or not. But treatment must be taken in these cases. These is my choice. My uncle was 65 year old. He was suffering from the brain cancer. It was five yr old. But now he is fine and living a normal life. It is difficult for the person to live a normal life after such a disease. But I am very glad he is now living a good life. At this time family and friends support really needed. I am just wishing you good luck.

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Contributor

Re: Family member diagnosed with high grade Glioblastoma

I can't see why he would not do it.

I had stem cells (brain surgery) and it helped

quite a bit for a while.

 

See my post on the apathy of care for the elderly:

https://onlinecommunity.cancercouncil.com.au/t5/New-Start-here/Unusual-Case/m-p/29664

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