Hi, never thought I'd make a post here at my age (30) but here we are.
I was diagnosed today with Ganglioneuroblastoma, which was located in my left side just behind my kidney. Originally it was thought to just be a Ganglioneuroma (benign tumour), and most of it is, but it had smaller cancerous nodules hidden in it. I had it removed in surgery a month ago, so it is currently out, but due to the new information I now have to have more tests, including a bone marrow biopsy, to make sure it hasn't spread anywhere else.
The problem is that this condition is so rare in adults (it is more common in children under 5), every single case of it found is referred and discussed in a national MDT. I feel very alone right now and I honestly don't know if there is anyone else out there currently who is going through this type of cancer too.
Hi PinkPeach and a very warm welcome to the Macmillan Community but I am so sorry to hear about your diagnosis.
Having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and recently Prostate Cancer that navigating this journey can be such a stressful and challenging time.
I did a community search for Ganglioneuroblastoma and did not get any hits but that is not to say that there are community members out there who have experience but have not posted in the community.
The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms)……… you can have a look through this link Cancer Specific Groups where you will find all our dedicated cancer support groups listed and see if there is an area that you can post in.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
