Advice please....: It's been 3 weeks since... - Leukaemia CARE

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Advice please....

TM1972 profile image
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It's been 3 weeks since my diagnosis for Hairy Cell Leukaemia and I'm slowly coming to terms with it, however I am confused. My consultant at the hospital has put me on 'Wait and Watch' but said I would be monitored regularly and would need regular blood tests and scans. Since then I havent heard anything from her or my GP. What are you meant to do? Am I supposed to contact my GP for an appointment or does my consultant at hospital make these appointments? I'm so confused.

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TM1972
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HAIRBEAR_UK profile image
HAIRBEAR_UKAdministrator

Hi TM1972 it is very hard to get your head around 'watch and wait' and also how things work with regards to appointments. Many he will relate.

Your understanding of frequent may feel differ from what we previously believed as frequent before diagnosis. 'Watch and wait' (or active monitoring) doesn't feel very active and needs time to provide answers, very difficult for patients to deal with though.

Monitoring appointments tend to be closer together in the beginning while they complete tests and get an idea over time how stable your disease is. I recall my first monitoring appointments were about a month apart, as the doctor learned more about me and the disease in me they went out to 3 months apart, because the disease was progressing slowly and was stable. 'Watch and wait' is very hard to come to terms with because you will know little yourself and everything is so uncertain to you, very hard to sit and do nothing, try to learn as much as you can.

This information book about watch and wait may be of help: media.leukaemiacare.org.uk/...

Here also HCL: media.leukaemiacare.org.uk/...

The haematologist you saw should arrange your first monitoring appointment and you then receive a letter from the hospital confirming time place and date. you could be referred back to your GP. for monitoring. Different hospitals use different processes, some make the appointments then and there during consultation some have you confirm with reception as you leave, some the appointment date is sent through the post it can take a while,

Try not to worry.

Give it a few days and if you hear nothing on Monday call haematology or your GP. Watching and waiting is hard enough without having to wait and worry for appointments.

Nick

emmieb-UK profile image
emmieb-UK

I'm 6 years post chemo but i have 6 monthly bloods which I have taken at the local GP surgery but get sent to my haematology consultant. He said what bloods he needed and they do the actual blood tests. I don't have scans though so someone else might be able to help. I see him every 2 years unless I am concerned about symptoms.

Can you ring your GP surgery and see what it says on your notes? Have you had a letter yet from your consultant explaining what would happen? It usually takes quite a few weeks for letters to come through. You can also speak to the medical secretary attached to your consultant who may be able to help if there is something on your notes.

Sorry not to be clearer. In my experience with all health things, it pays for you as the patient to do the active "managing" as the NHS is so stretched.

2003UK profile image
2003UKChampion

Hi, welcome to our site. You say you are slowly coming to terms with your diagnosis, I would say that you have had your world turned upside down and you are doing brilliantly, be kind to yourself and give yourself time. I am also on watch and wait and this is not uncommon with certain leukaemia's. We are all here to support you but if you feel you would like to talk to someone the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. You might also like to look at the Leukaemia Care charity website leukaemiacare.org.uk as it has a lot of information and factsheets. I remember when I was first diagnosed I went back to my GP and in retrospect I wish I had written down all my fears, thoughts, feelings and symptoms and taken someone with me to take notes. I have now learnt to ask those follow up questions too. Personally, and this is from a lay person, I am very happy to be on watch and wait (or active monitoring) and I count myself very lucky. Take care of yourself and give yourself the odd treats.

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