Hello from Jasmine
I am looking for others who are experiencing this to keep in touch with. It seems that it is quite a rare condition. It is follicular, slow growing. I had chemotherapy and radiotherapy three years or so ago but with no effect. I have been on watch and wait since, with a scan each year. . My recent telephone with haematology consultant in January, leaves me with the news that it has started spreading and to be aware of any new symptoms. He already has treatment ready and has sent me information on the medications. He is calling again in May.. Which leaves me with the dilemma that surely if I have no symptoms then I don't need treatment.
Thanks for reading this.
Hi Jasm8ne and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable ‘other’ type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I can understand the challenges as to your consultant advising treatment but you are ok…… it’s what is going on inside that we can’t see is the problem and I have been there a few times.
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Follicular Lymphoma support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link
…… then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
I will keep an eye open for you on the group and we can develop your discussion more and this will also allow other FL group members to join in.
