I was diagnosed today with non-Hodgkin lymphoma and ?leukemia but awaiting a bone marrow biopsy. I just feel petrified but trying to stay positive but hard when you are scared.
Hi Bestrong and a warm welcome to this corner of the Community although I am sorry to hear that you are on the diagnosis rollercoaster.
I am Mike and I help out around our various Lymphoma / Blood Cancer groups. I was diagnosed way back in 1999 at 43 with my type of rare, incurable but treatable type of Non Hodgkins Lymphoma (NHL) eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well.
At the moment this is all very scary but it’s all the unknown….. but as you see I have been on my journey a long time with a very rare, hard to treat NHL and I am still here living a great life.
When you delve into Heamatology world it can all be very confusing.
For instance you have posted in this group. This group is specifically for Hodgkins Lymphoma (HL) but HL is rather different from Non Hodgkins Lymphomas (NHL) that you have mentioned.
Then you are adding the word Leukaemia…… now this will completely confuse you but some Leukaemia’s like CLL (chronic lymphocytic leukaemia), SLL (small lymphocytic lymphoma), or HCL (hairy cell leukaemia)….. although these conditions have the word Leukaemia in it, in Haematology terms actually comes under the umbrella of Low Grade NHL - yes this is very confusing I hear you say….. but blood cancers are confusing.
The important thing at the moment is for you to get a very clear diagnosis and the Bone Marrow Biopsy will help this to be done.
You are going to get lots if information thrown at you so I do advise that you have a second pair of ears with you at appointments to help you catch more if what is being said.
Asking good questions will help so this link Questions to ask your medical team about Lymphoma will help you note down your top questions in a note book ready for your next appointment.
As I said blood cancers are complicated but most are very treatable….. for instance there are over 60 types and sub-types of Lymphoma without going into the other types of blood cancer.
We do have groups that cover all the main types of blood cancers but as you don’t have a clear diagnosis it’s best you stick to this discussion and we can support you until your diagnosis is clear.
If you have any specific questions just ask or if you just want to chat.
Hi Samantha, thanks for this information.
I have lived with and been treated for my rare type of T-cell NHL for over my 24 years.
T-cell lymphomas do indeed tend to be on the rare side with my type of Cutaneous T-Cell NHL is a 7 in a million type but as I said I am still living a great life.
We do actually have a dedicated T-cell lymphomas support group but as you can imagine due to these types being rare the group is not that busy.
You need to try and get the exact name of your type of T-cell…… and the exact name of the treatment you are going to have as this will help you get more specific support.
It is normal for further tests to be done as there are blurry lines between blood cancers and indeed over my years my diagnosis moved between two types of NHL.
