Hi everyone,

[Curry777]

Rang up my cancer specialist nurses to ask about my full body scan results as of 5 weeks ago now. The nurse told me I would be contacted if there was a problem. I said surely they let you know if all is clear? She said 'No only if a problem.' She was rather vague. The next day I had a letter to give me an appointment on Monday at 17.00 for an Echocardiogram in the Hospital. Have broke a bone in my foot at the weekend, so can't walk about, have had a boot fitted and crutches. Seeing foot specialist in 2 weeks. Need some good news now, please?

[21Bedlam21]

Hi, it’s unfortunately the case. If nothing wrong they don’t notify you. Before I get any answers I have to see my Consultant. Had full blood tests 2 weeks ago and see her on the 3rd October. I had to ask last time for a copy of my blood test results. I expect I’ll have to do the same this time. When do you see your Consultant? Hope your foot is better soon.

[Curry777 in reply to 21Bedlam21]

Next Haematology cancer visit 5th November. My Doctor never seems to know much I have to update her as the N.H.S. Where I live doesn't communicate very well with each other. Thank you Bedlam having to rest and elivate at the mo. My foot is quite painful.

[Homebody123]

Hello I’m UK based, have private insurance and am in W & W under University College Hospital London - probably moving towards treatment. I have just had a PET scan and CT scan last week and yesterday an Echo. My understanding from my CLL specialist is it’s just the normal process of establishing a base line against which they continue to check you throughout your CLL journey. Neither test is difficult and I view it as a good health MOT! If there is anything wrong they tell you and if there isn’t, it’s just another message to get on and enjoy life! Best of luck and I hope your foot heals quickly.

[Curry777 in reply to Homebody123]

Thank you Homebody, I have my Echo on monday, nice to hear it sounds as if they are doing a general process to establish a base line check on the CLL. Great to hear your positive thinking of getting on and enjoying life. Best of luck back to you too. I hope my foot heals quickly, hate sitting around doing nothing x

[Homebody123]

Just one other suggestion, your results should be sent to your GP so you should be able to log on to the patient portal and see if there is anything up there.

[Curry777 in reply to Homebody123]

I have looked on my patient portal and it is not up to date, was no point even looking cause it didn't even mention I had been diagnosed with CLL. Thank you again

[Walkingtall62]

Do you have a patient portal you can log into. My hospital uses Patient Knows Best. Always nice to look at the results once home from the appointment. Maybe you could ask your CNS. All the best

[Curry777]

Thank you Walkigtall, big hug to you