I am 35. And today i was diagnosed Follicular NH Lymphoma.
As cliched as this sounds you never ever think its going to happen to you. I have not been given a stage yet only had a biopsy, ultra sound and ct, bloods done. Above results came back.
My wife was with me when i was told and became upset. She is 6 years my junior and has recently nearly lost a friend to cervical cancer who is my age. Shes gathered herself now. Hospital have so far been amazing. I am lucky to have a very good support network in my family and friends including Two siblings who are doctors and one who is a paramedic (not everyones been told yet. ) my parents are on holiday. I have told my sister and.my Inlaws who i have a Great relationship with, who have all been amazing today and very pragmatic and supportive. I am abit concerned about work.
I am scared. But a very matter of fact person. I have never been admited to a hospital before even on an outpatient basis for anything more serious than cuts.
I don't know what i expect to get from this post
feel like everything's been flipped upside down. I am not quite ready to tell everyome yet but with that comes a bit of guilt.
I just needed to get this off my chest.
thanks for reading
BaneFromGotham
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your blood cancer diagnosis.
I was diagnosed with a rare incurable type of Non Hodgkins Lymphoma back in 1999 but I am still around doing very well... hit my forum name to see my long journey..... but you will need a cup of tea.
Blood cancers are very complicated but at the same time very treatable and must not be seen in the same light as solid tumour cancers. Some treatments can be short and to the point but for others it can be a long road. It just depends on all the results, you may even be told that you don’t need treatment yet!!
Follicular lymphoma is a cancer of the lymphatic system. It develops from B lymphocytes (white blood cells that fight infection). This type of lymphoma usually grows very slowly. It is difficult to cure but is usually kept under control for many many years with treatment needed only from time-to-time.
So on the whole you can't just ‘cut out’ blood cancer, it needs to be systematically treated. You may want to look at this as a chronic illness and for some they will live all their lives with it just like other chronic conditions like diabetes.
It is VERY IMPORTANT to understand that in blood cancers like FL the stage number is ONLY a guide to what treatment should be used and how long it should last for........ it’s NOT a prognosis, the higher the stage number in solid tumour cancers will often indicate life expectancy..... not in blood cancer.
I was stage 4a2 and classed as incurable - zoom forward 17 years I have been in remission just over 3 years with no evident cancer :)
I worked and lived well for 14 years before the full on treatment was required.
The time this is taking to get all the information and tests done is normal..... but so frustrating. My rare type took a good year to get all the info...... but it’s so important to get this all spot on as it is the only way to develop a clear plan to move this in a positive direction.
A blood cancer diagnosis can bring a lot of stress, confusion and many questions on all the family but talking with people who are on the same journey can help a lot.
So can I direct you to this link to our very supportive Follicular lymphoma group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
Putting some information in your profile can help a lot Click here to see how to add details as this helps everyone to see a little about you
So what did you expect from joining the Community?....... you found a safe place to get support from people who understand...... often at any time of the day!
I will keep an eye open for you in the FL group as I help out in it.
Lets walk this together.
PS - Do not talk with Dr Google this is very dangerous and not good for your wellbeing and stress levels...... but have a look at great this link below
Lymphoma Action - Non-Hodgkin-Lymphoma - Follicular-Lymphoma
