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adult Ganglioneuroblastoma

3 Jan 2018 16:40

I am a recently diagnosed patient with two Ganglioneuroblastoma's. they are growing up my spine and are extensive in size at 10cm and 8cm.  At present they are in operable but hoping for imunotherapy to shrink them as they are affecting me neurologically. I am loosing the use of my legs and loosing feeling,  I am 38 year old woman. the tumour is intermediate. not benign or cancer. just trying to find other adults with the same tumours!! or information about it even if from a child perspective.

or places treatment has been helpful!

Re: adult Ganglioneuroblastoma

4 Jan 2018 02:40 in response to freedom1479

 

 

Hi Freedom and a very warm welcome to Cancer Chat.

I am so sorry to hear about your diagnosis and to learn that it is currently inoperable. Can I suggest that you use the search engine on the blue banner at the top of this page?  Insert your condition and you will find many previous posts on this topic.

I sincerely hope that immunotherapy is helpful in shrinking your lesions. Please keep in touch and let us know how you get on. We are always here for you whenever you want to talk.

Kind regards,

Jolamine xx

Re: adult Ganglioneuroblastoma

5 Jan 2018 14:55 in response to freedom1479

Welcome to the forum Freedom1479 although I'm sorry to read about your situation as well as the difficulty you're having trying to find information about your diagnosis.

We do have some general information about neuroblastomas on our website here but I think it would be best to give our cancer nurses a call as they will be able to help point in the right direction for resources and connecting with other adults who also have this diagnosis.

Their freephone number is 0808 800 4040 so if you have some spare time today try and call before their lines close at 5p.m as they won't be back in the office until Monday.

I hope this is of some help and like Jolamine has said above, that the immunotherapy is successful in shrinking those tumours when the time comes.

Kind regards, 

Steph, Cancer Chat Moderator

Re: adult Ganglioneuroblastoma

30 Apr 2018 22:13 in response to freedom1479
Hi, My daughter was found to have a tumour that had entered her spine at age 4. She has had it removed, at least as much as they could. She is now stable. I know that all tumours are different, but maybe you should ask for a second opinion on operating?