I am new to this group. I was diagnosed in Jan 2022 with CLL. My GP sent a text asking me to have a blood test as routine blood tests over past 2 years had shown increase in white blood cells. I had no idea what I was being tested for and when given the results was just told “yes you have CLL” given a leaflet, told I would be put on Watch and Wait and ushered out of the surgery. I have not seen a haematologist and have no idea when I am getting another blood test. Is this normal???
Hi Windrush52 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 Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I appreciate the challenges of this journey well.
I often say this but this is going to sound very confusing but CLL and indeed Small Lymphocytic Lymphoma (SLL) are different forms of the same illness. Haematologists group these together as a type of slow-growing (low-grade or indolent) Non-Hodgkin Lymphoma (NHL) …… yes very confusing.
I have talked with many people who have a CLL diagnosis over the years who have never needed treatment. Low-grade or indolent blood cancers tend to grow very slowly so there is no need to treat as treatment is saved for a point where it will make a difference so this means that many folks are put on Active Monitoring (Watch and Wait)
It's normal to see a Hematologist but I would guess that your GP has been in contact with them hence the Active Monitoring.......Active Monitoring is actually classed as a treatment - yes confusing. I suggest that you check with your GP as to when you will see a Hematologist and as to what your follow up monitoring will look like.
As to future treatment when required you will find some good information about treatment in this link Treatment helpful.
When you do get an appointment with a Haem you do need to get as much information about your presentation so this link Questions to ask your medical team about Lymphoma will help you get a notebook ready with the questions you want to ask.
At this point I always highlight the Lymphoma Action website. The Bold link above are taken for the site.
Lymphoma Action is the UKs only Lymphoma Specific Charity ….. that includes CLL and SLL who have lots of good reliable information, videos…..
They also run regular Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
I have given you a lot of information so do come back with your questions and I will help as best as I can.
