I am still waiting for my CT scan results.

[Curry777]

I am still awaiting my CT scan results which were done 4 weeks ago now. Hoping no news is good news for me? Started seeing a Psychiatrist this week to help me leave my past in the past, so I can concentrate on living a good life with CLL here and now. My Doctor has increased my depression tablets, which seem to be helping my emotions calm down, as I think I was crying too much, exhausting myself out, which is not good.

[Jetliz]

I've found from my experience having CT scans 6 monthly and now annually for a kidney removed that it's the administration side that drags on so much. My Clinical Nurse Specialist always books the follow up appointment for results around 4 weeks after CT scan. The results have to be diagnosed then passed on to a doctor/specialist as I understand and then relayed back to you. Its the most anxious time for you I know but hopefully not long to wait now. Take care and hope you can move on gradually from your past problems. It seems a mountain to climb at times but hope as a CLL Community we can be here for you always.

[Curry777 in reply to Jetliz]

Thank you Jetliz for the reply, you take care of yourself too x

[Curry777 in reply to Jetliz]

Thank you Jetliz, so good to hear from you. I feel we (Everyone living with CLL) are the only ones that Truly understand each other. xx

[Jetliz in reply to Curry777]

Hi Curry777I've come to realise that although people care and my husband is immensely caring it's so tough on your mental health sometimes. You don't have physical signs always but the worry of treatment or scans and having to be vigilant from infections is sometimes hard going. I've mentioned in previous posts just how grateful I am to have this forum and the wealth of valuable information and support. So yes I think ultimately we do understand each other as a CLL community definitely!

[Dusty54321]

I waited 7 weeks then had to chase , even though I was told it was marked “urgent” . It’s hard not to feel anxious . The only thing that helped me was to have as many distractions as possible to try keep my mind off it

[Curry777 in reply to Dusty54321]

7 Weeks? 🙄...Your right it is hard not to feel worried. I have been trying to distract myself, will have to carry on until I hear. Thank you for sharing with me your own experience Dusty. x

[seoul1949]

I had 3 times pet CT in 2023/2024. waiting time for results in Uniklinik Cologne was between one day and six days.

[AnneHill]

I always chase things up. Give the department a ring and ask if you can have the result. . I have never had a problem but they think they are an aid for them and dont intend to tell you outside of an appointment. Have you got an appointment? Its always best to check but if the scan showed anything worrying they would have been in touch. They dont realise we are worried. Have you had a blood test lately? Anne uk

[Curry777]

I have chased up the scan result and was told it will take a long time due to different specialists having to look. I have an appointment with my Doctor in just over a weeks time, my next blood test is not until beginning of November. I think your right Anne, they don't realise how much it worries us. Thank you for the reply x

[AnneHill in reply to Curry777]

The UK NHS is very different to the US health system. It is confusing for many people here. You have had a horrible start to being diagnosed with CLL. Has anyone explained CLL to you?

My diagnosis wasnt straight forward either. Cll is often discovered when being treated for something else. The important thing is that it is chronic and treatment is not needed for a long time in many people.

The consultants have got a sample of your blood and its good that you have had a scan.

Not knowing what you have been told, I am assuming its not a lot.

Hopefully your doctor can explain your blood test. A scan will show if you have enlarged lymph glands. I was diagnosed when there were few changes and it was 9 years before I needed treatment.

Treatment is totally different these days. Its mainly tablets. You wont lose your hair.

You need to know what stage your Cll is at. Its not urgent but you need a haematologist to explain this.

You have a blood test booked which shows you are not being ignored. You are being monitored. That is all we need. I have had cll for 23 years and been treated twice. Most of the time I have my blood test sent off and a phone consultation.

Write some questions down for when you see your doctor. Take care, Anne uk

[Curry777 in reply to AnneHill]

Thank you so much Anne for your reply, it touched me inside. So good to hear from you, your right I haven't been told much only given a leaflet to read. 9 years before you were treated, that does give me hope about being diagnosed. I will write down some questions Anne, you take care too my lovely xx

[AnneHill in reply to Curry777]

You have been diagnosed at a time when treatment has changed amazingly. New drugs are being developed and its possible there will be a cure. Dont worry, Anne uk

[thompsonellen2]

Wow, so sorry about that. I'd be out of my mind (esp since I get scans every 3 months!). I often have scan results in my patient portal the same day. I'm glad they are adjusting the meds. That's no way to sive. I find that forcing myself to do physical activity (walking counts) helps with the blues.

[Reetywell71]

hi. Waiting for results is the worst! My results come into my patient portal sometimes before the doctor even sees them. That’s a ying and a yang. Could cause more anxiety if you see some scary words but I would rather know asap.

[Skyshark]

If there was anything really amiss they would be on the phone and be seeing you ASAP.

Two of my scans were "urgent" they had the results the next day, about 30 hours. The first one triggered 2 biopsies and a PET/CT scan. Second was for restaging before start of Venetoclax. Scan Monday afternoon, results were not ready for am consultation but arrived mid afternoon, no doubt they been chased to get them quick.

As for NHS patients seeing actual results, have to do a patient records request.