Hi there- I was diagnosed with CLL in July 2023 after finding several swollen lymph nodes around my neck. I am in the w&w phase however, it is more waiting than watching - I saw the haematologist in April 2024 and she said she’d like to see me again in 3 months as my lumps were increasing in size. Despite several phone calls I have still not had this follow-up appt. I have not really pushed it yet as I have been feeling well for the past 10 months… The hospital says that atm they are prioritising people requiring medication….
I’m in Yorkshire, uk and I attend the Mid-Yorkshire hospital trust pontefract hospital site.
Any advice please?
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Carolbr
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It would seem that you are in stable enough ranges, are not exhibiting B-cell symptoms, and although enlarged, your glands are not producing effects that warrant another look. This is only an opinion, based on what little information I can gather from your information.
If you have a turn of events, B-cell symptoms, pain or difficulty swallowing, obstructed breathing, or multiple infections it seems you must sound the alarm. I'd think that upon completing a year you should politely but firmly request at least an annual check on your status.
I think cll doctors usually schedule people for monitoring based on their current cll condition. There was a period of time my cll was so active, I was on monthly visits to my doctor. I’m now in remission on a btk drug. I have gone from quarterly visits to semi annual.
It sounds to me like your doctor must have thought you needed quarterly monitoring. Evidently that plan has changed, not because of some change in your cll, but rather because the hospital is too busy as they are prioritizing people “requiring meds” over you.
I can understand if they are somehow having to “triage” patients because they are so busy. But your 3 month appt has already been kicked back to six months. You may or may not require meds, thats what medical monitoring is supposed to help decide.
I would keep being the squeaky wheel who gets the grease and push for my appt. All we need for monitoring is a blood test and 10 to 15 minutes with our doctor. I certainly understand the idea that you see people with pressing needs first. But I dont think cll patients should get thrown to the back of the bus while being monitored, nor do I think a single blood test and short meeting with a doc hurst people needing meds, whatever that means. It feels quite arbitrary to me to diminish the importance of regular monitoring of someone with a blood cancer by putting all people who need meds over us.
Just my two cents. At some point your doctor must have thought you needed quarterly monitoring. What has changed? Are they so busy they cant do one set of labs? Good luck.
Were you given a card with contact details for your Clinical Nurse Specialist?
Otherwise try the Haematology Senior Charge Nurse, listed under cancer nursing teams. Express your concern that lack of monitoring means they will fail to detect when treatment is needed. Can't detect 6 monthly doubling of ALC when ALC>25 without 6 monthly blood tests and should be more frequent to develop the trend line. Find out who you should send photos of lymph nodes that concern you, particularly any new ones.
Active monitoring is essential and I’ve had NHS blood tests and consultant appts every 3 months since initial referral in 2021. Postcode lottery perhaps but I’d be complaining, and how do they know if you need treatment without monitoring. Hope you get sorted.
I am also in the UK, and although the hospital, for me, have changed times and dates, it's not been for a 10 months pirod. That's not good enough from the hospital, I mean, even with stable WBCs?? You need to sort them out.
Edit: you must of got a letter with a date for your next appointment, with a form to take when you go for your bloods prior to that appointment?
Hi Baz- the appt system is very strange with mid yorks. They don’t send appt notifications out until a week or 2 prior to the actual appointment and you get the blood form on arrival at the hospital for your appt!!!
So, I have literally heard nothing since April 24!
However I took the bull by the horns and phoned a few people yesterday and have now got an appt for Monday 23rd dec- so that’s a result but, I shouldn’t have to throw my weight around for an appt that should have been arranged for 5+ months ago.
I will ask some further q’s about appts etc when I go on Monday.
I am a very big supporter of the NHS but some of their basic practices & systems just don’t make sense to me at all….
I'm in Bedfordshire, and its not run like that down here. We receive the appointment letter, with the blood form, and then we get a letter that's sent to your GP that goes through the results. I would say 10 months is very extrem. Hopefully, all is good for you.
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