CLL Support Association

So confused

Just over a year ago xmas 2016 I had bloods taken I was told my lymphocytes were raised test was repeated still raised. My GP mentioned to me I may need to see a haematologist and he spoke of CLL didn’t mean much to me until I went online and found out exactly what CLL was. Since then my blood has been checked every two months. Last year can’t quite remember when it was it went up again, I was referred to a haematologist. I saw this person on the 11th November last year. He told me he couldn’t say whether I had CLL or not but I was at risk. He took bloods that day FBC plus another test to do with proteins they told me. I never got the results of these tests. January 4th 2018 I called the haematology dept in question and was told my bloods hadn’t been tested they said it was too old by the time it got to the lab. I was never informed neither was my GP who I had been pestering for results. They told me if I could come to the hospital the following week one day before 12 midday they would repeat the test. This didn’t happen as it’s over 200 mile round trip to the hospital our car wasn’t up to it and neither was I. Then I got a letter from them for an appointment to see another haematologist and to have the bloods taken again. This appointment was today. First of I saw a nurse who took bloods from me she said the one test was a FBC which would be tested straight away once the results came back I would see the haematologist. The other test she said was the same as the previous haematologist had requested something to do with checking for proteins she said that test would take a bit longer. Once the FBC came back I was called to see the haematologist. This is when I became confused...he asked me some questions about how I was feeling he appeared to dismiss the facts that I told him about being very tired all of the time, bad sweating, back pain, loosing weight, loss of appetite, repeated infections UTIs Helicobacter feeling fluey and run down, bone and muscle pain, nerve pain. He said he wanted more blood from me I saw the bloods the nurse took sat on top of my records on his desk. He said this test he wanted would be sent away just the same as the nurse had told me. He then proceeded to speak about blood cancer and told me there was no cure and that they didn’t treat it. Yet in the same breath he said to make an appointment on my way out for 3mnths time and he would let me know the results of the blood tests. If it was normal he wouldn’t need to see me again if it was abnormal all that they will do is see me every 3/6mnths. My GP has lead me to believe there is cause for concern, I saw a psychiatrist on the 11th of this month he said there is something wrong with my blood and it needs to be seen to. In my mind I’m thinking why are they doing these tests if there’s no cause for concern, why are they saying there’s something wrong in one breath then the next they’re saying it’s nothing to worry about. One minute they worry me the next they’re wondering why I’m worried and stressed ...I just dont get it can anyone shed some light on this for me. I came home today to an email from CLLSA with regards to the thing in Parliament last week about educating GPS etc and getting more support and care for patients is it really this bad?

6 Replies
oldestnewest

Sorry you are going through all of this. It sounds like there is a lot of confusion. There are many of us who have CLL and have been on the watch and wait protocol for years. I was also told that there was “no cure” so they only treat symptoms. That (to me) sounds much worse than it is. There are many treatments for CLL that can manage the disease and keep it under control. In addition, there is a huge amount of research being done and a cure could be right around the corner. I know saying try not to worry is stupid, if you have not found a specialist in CLL yet, that would be my first move. You will find much support on this site, don’t be afraid to ask questions, there are many very well informed people that are kind and readily share info. Best of luck.

4 likes
Reply

Hi Cathbrg and welcome to our community.

If you do end up with a CLL diagnosis, you have found a great place to come for support, along with education that will help you live well with CLL. It's a pity that your entirely valid concerns were not better addressed by those you saw. It is quite likely that the protein test you've had done on your blood test is a Flow Cytometry test. This is the definitive test for confirming whether or not you may have a blood cancer. (Sometimes a change in our blood counts can be due to other causes, such as an underlying illness).

Broadly, there are two types of leukaemia - acute and chronic. Acute leukaemias require treatment promptly, (hence your GP's concern) whereas chronic leukaemias may not need treatment for a long time, if ever. Given you went for a year with unusual blood counts, you either have a chronic blood condition or perhaps some illness/inflammation causing these. If your suspected diagnosis of CLL is confirmed, you may fall into the group of about 30% who never need treatment.

Investigations have shown that the best way to look after the health of those with CLL is to monitor them until they meet treatment requirements, a process called 'Watch and Wait' which it appears you'll enter if your next test is abnormal. If you have some other cause for your unusual blood test results that resolves by the time you have your next blood test, you'll be able to go back to living without worrying about your suspected CLL diagnosis - it was just your GP being thorough.

If you do end up with a CLL diagnosis, you'll be assigned to a haematologist to monitor your health - which will primarily be regular blood tests, with the period between them lengthening if the CLL is slow changing.

Neil

2 likes
Reply

Thankyou for the replies it’s much appreciated and I’ve calmed down a bit today. Lol Think it was the manner in which the haematologist put it across to me ie there’s no cure for blood cancer and we don’t treat it was almost like he kicked me in the stomach. I do understand better now what he was trying to say to me but didn’t. I’m thinking it’s a long wait 3mnths I’ve already waited 2mnths not knowing that my bloods were never tested the first time. My GP told me this time they’re doing cell marker studies but they didn’t mention that to me at the hospital yesterday they said it was the same test that was done the first time to do with proteins in the cells which you’ve said Aussieneil is a flow cytometry test. Someone told me it doesn’t take three months for that test to be done and I should be able to go to my gp in a couple of weeks and he’ll be able to access the results and let me know. So I’m planning on doing that rather than wait for three months. I saw another consultant today with regards to surgeries I had done one was a sigmoidectomy for cancerous polyps plus had a follow up colonoscopy where they removed more bad polyps thankfully they hadnt become cancerous. I’d had a endoscopy as well last year had a bacteria infection which I got antibiotics for and then a breath test and it’s all cleared up. I thought maybe it was that that was causing the raised lymphocytes but my gp says no. I also have esophagitis and duodenitis which is inflammation can that cause raised lymphocytes in the blood. I had Shingles as well two years ago have never fully recovered from that still get sore itchy spots from time to time was wondering if the shingles virus has anything to do with it but I suppose the experts would know if that was the case. Apparently my blood is bad for clumping in the tubes they keep mentioning to me that the platelets clump together and they want the test repeated they’ve said too that I have very small platelets...I’m a nervous wreck with it all and oh what I’d give for a good nights sleep that’s a thing of the past especially since having the shingles I don’t think I’ve had one good nights sleep since then 😳

Reply

Inexcusable, in my opinion, for your doctor to leave you hanging for three months! Results from a flow cytometry takes about a week at most. I think you are in the U.K., and don't know your rights there regarding accessing test results. In the US we have the right to copies of any and all of our medical information. I would call the hematologist and ask, as forcefully as possible, for your results, or ask your GP to get them for you. Sometimes doctor to doctor is faster. Too many doctors seem to not understand the terrible stress that they cause patients when they only give us part of the information.

4 likes
Reply

Hi MsLockYourPosts ....I am in the UK we don’t have access to our results or records as far as I know. Think we have to pay if we want access to our records. I’ve been told the test only takes about a week as well why they won’t tell me until three months is a bit sick imo. I’ve already waited two months for bloods that were never done so that makes it five months all told. I will go see my GP in about ten days or so he’ll be able to access them I think. They seem to withhold information from me they may know what they’re doing and why but they don’t tell me for some reason.

Reply

Take a recording device to your appointment so you don't go crazy trying to write everything down and can be more engaged in the conversation. Hopefully others in the UK will know more about the availability of records. If you give your general location ( you might want to "lock" your post for that) others could, perhaps recommend a doctor in your area who is more patient oriented.

1 like
Reply

You may also like...