Stage three Oligodendroglioma dormant??

  • 2 replies
  • 19 subscribers
  • 1079 views

Hi everyone,

Last year on 4th April I was diagnosed with a mass on the brain after a biopsy and many mri scans at St George's and St luke's cancer centre my consultant advised me my tumour was a grade three Oligodendroglioma on the right hand side of my brain measuring 10cm x 6.5cm, I have had one course of tmz and one course of radiotherapy which I finished on the 4th December,

my consultant has now said my mri's can be done every four months now rather then every three, I have asked what the plan is next and basically he doesn't want to do any chemo or radio as my body will her used to it an he said there is no reports of immunotherapy working for my type of cancer and just to leave the tumour dormant

Is this normal as we thought give it what we can whilst we can rather then waiting for it to come back with a vengeance 

Thoughts please 

Darren

  • Hi Darren. I'm not from this group as I've a different type of cancer so I hope someone will be along to chat and compare experiences.

    It's hard to just sit back and accept what your Consultant has said, especially as you'd rather not sit back and wait for the worse. Can you ask for a second opinion?

    You could also try the Information and Support helpline, number shown below.

    Sending you all the best, B xx


    Community Champion Badge

    Womb cancer forum

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

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Morning Darren,

    I am similar to you and am sorry to hear you have had to go on this frightening journey, it is still not real to me even though I am starting radiotherapy in 2 weeks. 

    I have been following a diet I read about online called the Budwig diet, have you heard of it? It’s very good and an interesting read if you get a chance. 

    I know that each persons cancer is unique to them but it seems a bit odd to me that you have been sent away for monitoring, did the radiotherapy shrink your tumour? I think you are right in the fact that you don’t want to just sit back and do nothing. Nobody knows your body better than you! 

    Mine is in the frontal lobe but to the left. They offered me surgery initially but the possible side effects were so scary that it wasn’t worth the risk. Not to remove around 50% of the tumour that will most likely grow back. 

    I am still a little undecided though...!?

    I would say to you to arm yourself with all the supplements you can (if you’re not already) and check out the budwig protocol. 

    I’m also reading a book called ‘radical hope’ and this describes 10 key things a cancer patient can do to support recovery. Including daily exercise, modifying their diet, getting in touch with spirituality in what ever form it takes, being in charge of your body, having a positive outlook and of course not giving up! 

    Give it a try, if nothing else it will give you something new to think about.

    Good luck with your journey...

    Lyd x