Hi all just wanted some advice what should I expect from my specialist appt been confirmed with FL
Also how soon does treatment start and how often?
Thanks in advance
Hi Parmyarmy and a warm welcome to this corner of the Community although I am always sorry to see folks 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 type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Like my type of Low-grade non-Hodgkin lymphoma your Follicular Lymphoma is seen as a slow growing life long condition....... that sounds very scary but when required there are many levels of treatment and I talk with people in their 80/90s who have lived with FL over half their lives and are still enjoying life.
What to expect from your first appointment?....... You will most likely be checked over, most likely have 'more' bloods taken and don't be surprised if you are sent for more scans at some point........ one size does not fit all when it comes to these appointments.
You will hopefully be introduced to your SCN (Specialist Cancer Nurse)...... some will be wearing the Macmillan Badge but it depends on if your hospital use the services of Macmillan to train their SCNs (please remember that there are many different type of Macmillan Nurses)
The SCN is your go-to person when you have questions, when you feel off and just want to check things out....... you need to get their name, phone number and email number.
You may be told your Staging...... if we were talking about other solid tumour cancers like Breast, Lung, Kidney..... a high stage number would suggest a poor prognosis........ in Lymphoma this is not the case as Staging is manly used to identify where your Lymphoma is presenting, the type of treatment and for how long...... remember I was stage 4 in late 2013 and I am still here living a great life.
Depending on how your FL is progressing you may well be put on Active Monitoring (Watch and Wait) ........ this is a challenging mindset. To be told you have an incurable cancer but there is no need to treat yet....... I know many people with FL and they have never had treatment....... it took 14 years before I needed full on treatment for my type of Low Grade.
You need to start getting your top 5 questions ready for that appointment so this link Questions to ask your medical team about Lymphoma will help you get those questions down in a note-book.
Important tip - you need to take someone who is level headed with you to the first appointment as most of the information will go over your head.... and you don't want to be going home saying "I wish I had asked?"
Enough from me..... I am always around to help more or just to chat
