So here's a bit about diagnosis and staging:
When I was first diagnosed I was lucky in that it wasn't a surprise. The tumours I had, had grown significantly in the 3 months since I first noticed them and despite repeated referrals from my GP's, the whole process took about 3 months from first seeing a GP to being official diagnosed with HL.
My only advice with that is to be persistent, waiting lists are frustrating but the overwhelming care I have received throughout my treatment has been top rate. Don't give up with it and keep on with it. If you have a good doctors surgery they'll help progress the referrals along as well.
I had an ENT perform a core needle biopsy as the final confirmation biopsy to confirm that I had HL. The results of this took about 10 days, which again was a frustrating wait but it was conclusive so was a worthwhile wait. One the results were back I had a short appointment with the ENT department, who told me the news gave me some information leaflets and gave me a premade appointment to see the oncologist.
The appointment with the oncologist was a largely information piece, providing me with information about the different treatments, what to expect from the drugs things to look for etc. I also met my nurse specialist here, who has been my point of contact throughout treatment. It was with this appointment that the stages were explained, and that a PET-CT scan is what is used to confirm stage, so that they can be certain of the stage of cancer and determine the best treatment.
The PET-CT scan is a fascinating piece of technology, but the short end of it is by using a radioactive glucose it can use the cancers fast growing properties to identify it. The scan result being that the areas of fast growing cells glow more than slow growing cells. With this they can identify all the areas the cancers is present and active. For mine to be stage 4 HL, it meant that I had cancer on both sides of the diaphragm in the lymph nodes and it had spread to at least one major organ.
The beauty of a PET-CT scan is it not only gives an accurate staging of HL, but it is also used to monitor progress throughout treatment and see how well your responding to treatment, so you will have an idea of how well your responding at different stages in treatment.
Following the scan results, I was staged and given my treatment plan. I was told I had stage 4 and it was in several of my major organs as well as both sides of the diaphragm. As a result of this I'd be having/had 6-8 cycles of BEACOPP, with a minimum of the first 4 cycles at escalated BEACOPP with the dose lowering and total cycles dependent on how well my body responded to treatment.
If you've recently been diagnosed with Hodgkin lymphoma and have yet to receive treatment you could be eligible to take part in a new clincial trial. Read more here.