Hi all. To introduce myself, I’ve been told I have some form of lymphoma and the consultant is referring me to a specialist team, but the uncertainty has kicked in and I’m debating whether to investigate private vs NHS. Any thoughts welcomed.
Hi SaltnVinegar8d01c1 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your ongoing diagnosis.
I am Mike and I help out around our various Lymphoma groups.
For some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) (a type of slow growing Low-grade non-Hodgkin lymphoma) …….
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.
With over 60 types and sub-types of Lymphoma the diagnosis process can take some time as there are certain steps that need to be done to get a clear Diagnosis of Lymphoma
But based on my long experience, on the whole, in Lymphoma the time it takes does not make a big difference in outcomes.
No idea about NHS versus Private…… but from talking with many people over the years….. once you are in the NHS system things tend to move fast and I have been told that the private sector is not that well geared up for treating Lymphoma.
Once you have a clear diagnosis we do have some general groups…… with over 60 types we can’t have a group for every type but these are the groups below.
General Non Hodgkin's Lymphoma
CLL, SLL and HCL (these fit into the low-grade NHL group)
Until you have that clear diagnosis I am always around to chat and help out.
Hi Andy SaltnVinegar8d01c1
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers)but many people have never heard of it…… but regarded of the type there are treatments fir them all
Every 26mins someone in the UK is being diagnosed with one of the 60+ types of Lymphoma.
But compared to most of the other 200ish different types of cancers Lymphoma is in a group of its own….. this is highlighted in the Staging in Lymphoma.
Staging is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not…… remember I was stage 4a back in 2013 with 2 very rare typrs and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
In way of some encouragement…… I was diagnosed in 1999 age 44 when our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and I am 9 years 10 months past my last treatment and continuing to live a great life.
