Grade 3 Anaplastic Oligodendrogliomas - New diagnosis

Hi Elle so sorry to hear about your son diagnoses, hopefully they will be ably to give him a treatment plan soon. My journey started about five years ago having bad headaches etc, really sorry cannot remember the name of cancer, all I remember was in hospital for three months and my consultant got all family in for meeting and now x wife , all I remember was that it classed as rare form of tumour, and test on the bit removed not reacting to chemotherapy etc. Then came he thought I had three months to live and all they could do is with pills keep me comfortable. That’s went I said if only three months I want to go home what we all thought to die. Now that deadline is nearly three years ago, still taking a lot of pills to control headaches etc. Bit wobbly on feet, loss of hearing on the right where the tumour sits, plus wife has left for a old flame, I think missing the closest of relationships. As sleeping in hospital bed, different room , plus fitted with permanent catheter. She made up some excuse blaming me for the kids , and I think it made her leaving me easier when telling friends etc why she left. Because where the tumour is have lost about 15 years plus memory. My son has told me it was tough for everyone for about 8 months. But now moved into a one bedroom flat, cooking and looking after myself . Have a care team visited twice a day, for coffee and chat, my sons insisted on keeping this for his piece of mind. Got three lovely kids and six grandkids.

My life has change so much I now looked at it as Graham mark two. So my new chapter is nearly two years old. 

Hopefully your son can get some positive news and can make progress on his journey. It must be so hard for you running everything on your own now. But please stay strong for your son, plus remember the medical professionals do not have all the answers for this horrible disease. My consultant still cannot believe that I am still here, and how well I’ve come on. My son has showed me pictures of me in hospital with tubes going everywhere, and holding his two new additions to the family twins born while in hospital and my son thinking I will neither see them. On Monday went to their six birthday parties. Hopefully my story gives you some hope for your son future  .

Please if you want to talk about how you are coping or you’re son path, please feel free I just hope my story gives you some hope. 

Don’t let financial problems worry you as well , get hold of macmillan team to help you. Here fingers crossed they can find help for you. It must be so painful to see your son go through all of this at such a young age. My fingers are crossed for you as well, Keep in touch on your journey, hopefully I can offer you some support through this bumpy journey.

wishing you and son all the best. Xx

Dear Elle, your message has really struck me hard. I’m so sorry to hear about your situation and very moved by your son’s bravery and calm.

My diagnosis is a bit different, a grade 4 astrocytoma, and I’m still doing well two years after the op +chemo +radiotherapy. Like your son, they couldn’t remove the whole tumour, so I’m crossing my fingers that his follow-up treatment is as effective as mine has been. 

I’m thinking of my own mum (now in her 80s), and what you are both having to go through. And the rest of the family - it sounds as though you’re all close, which is a blessing, but still more than young people should endure. I’m sending much love to you all and I hope there’s good news along the way - it’s a rough path but I try to think of the up-sides: the kindness people have shown, the closer relationships that have developed, and things I’ve learnt about myself.

thinking of you ️️️

Hello

My son is 29 and he was diagnosed with a grade 3 oligodendroglioma in April, devastating news so I know exactly how you feel. He had surgery two weeks after diagnosis and they managed to remove the tumour, but there are still cells present,he has just finished his 6 weeks of radiotherapy and will start his first round of chemo end of September time which will be 9 months. It seems to take an age to get from surgery to radiotherapy. You will feel happier when your son has a treatment plan. My son has been extremely positive all the way through, it's hard to focus on the here and now and not go to the darkest place possible, I know I've been there on several occasions, I can't come to terms with fact that my wonderful son has this, its just so unfair. I totally empathise with you and am so worried about what the future holds.

Yvonne

Hi Elle, 

I was diagnosed with stage 3 Anaplastic Oligodendroglioma in 2019 when I was 44 years-old. I had a 70% resection of my tumor then proceeded to radiotherapy and chemotherapy treatments. 

I needed help with transportation during the 30 radiotherapy visits because they were an hour drive away, but the chemotherapy (TMZ) was in pill form so I could take it before bed every night at home. 

Every journey is different. I have been Stable (no evidence of disease) since 2021. I still get MRIs twice a year to ensure if growth starts we can catch it quickly. So far, so good!

Your son is young, so there's a better chance that he can beat this than even I had. 

• I realize that your post is 3 months old, I hope your son is doing well.

Andrea