Many of us have discovered that we've had CLL some time before our eventual diagnosis, in some cases many, many years beforehand. The delay in diagnosis may be because our doctors have been aware of our higher than normal white blood count (due to our raised lymphocyte count) and have been keeping an eye on what they see as a chronic condition without any obvious symptoms, but usually it's just because any symptoms we may have are more easily explained by far more common health conditions. Jon Emery, Professor of Primary Care Cancer Research, University of Melbourne, Australia explains:
Some excerpts: 'A GP has to be able to assess the likelihood of multiple possible causes of symptoms, creating their own internal ranking of possible diagnoses. Cancer will often be quite low down this list of possible causes simply because, statistically, it is less likely.
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So how soon should a doctor order key cancer diagnostic tests such as CT scans?...
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...many tests to diagnose cancer are quite invasive, such as colonoscopy, and can have significant risks, such as puncturing your bowel. There is also growing recognition of the harms of radiation from multiple CT scans, including causing cancers.
In a publicly funded health-care system, we must also be cognisant of the economic costs of ordering moderately expensive tests when the chance of finding an abnormality is low.'
Neil
Photo: Irrigation channel criss-crossed with strands of gossamer spider silk glowing in the afternoon sun.
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This article hit a nerve. My primary Doctor wasn't available so I saw his PA. I complained of fatigue, bruising and night sweats. She told me there was no need to be concerned because women over 50 tend to bruise easily because of thinning skin, and menopause gives us night sweats and fatigue. She was sure I was fine and needed to get used to getting older. My doctor wanted her to order blood work, "just in case". No high blood pressure, normal weight, etc. My Sister is a medical technologist and gave me the diagnosis before the doctor. He was shocked when I told him I already knew I had CLL. I feel this is why patients are uncomfortable complaining about their aches and pains. Needles to say I changed doctors. Sally
I think this article will hit a nerve with many people with CLL. I thought my husband had CLL long before he had a diagnosis by reading sites such as this. ( which is excellent by the way) IMO it was pretty obvious that he had something wrong. It's not normal for a 59 year old man to have fatigue and persistent enlarged glands . Even in a publically funded health system I would have thought blood tests would be ordered. As it is we had to go privately in order to get the full range of tests.
Last week we attend the CLLSA conference in Southampton and this difficulty in getting a diagnosis was something we heard from other people. Despite this we were extremely impressed with the calibre of the research going on in Southampton,and how the doctors are using this research to make decisions on the treatment of their patients. Once treatment is started, patients at Southampton have a nurse dedicated to them as their key contact. The lesson for us is to go to a centre of excellence if possible.
The next CLLSA conference is in Glasgow and I would recommend anybody in the area to go if they can.
My GP claimed in a letter that he did not understand the results so referred me to the hospital - not sure this was true just did not want to be the one to tell me!. This was some time after we had decide it was likely to be a leukaemia and probably cll based on the smudge cells. A visiting GP confirmed leukaemia was likely 2 weeks before I got the diagnosis officially . When diagnosis came it was a 5/5 Marsden score so no need for further testing - at least a positive
Certainly too many x-rays can be damaging but when needed it can be important to have them. In certain parts of the world the background radiation, Cornwall for example from radon gas, is far stronger then the dose from occasional x-tays and more damaging because it is a constant background dose.
You are correct that environmental exposures can have a higher radiation than a simple chest x-ray. But all exposure is cumulative, more radiation raises our risks of secondary cancers.
Full body CT Scans that are often used in clinical trials are 1,000 times more radiation exposure than a chest x-ray. 6 CT scans in one year ( required in the first year of some clinical trials ) is a greater annual exposure than allowed for workers in the US Nuclear industry.
Len
Additional CT scans increased risk for second primary malignancy in patients with non-Hodgkin's lymphoma
Chien SH. Int J Cancer. 2015; doi:10.1002/ijc.29433. January 30, 2015
Patients with non-Hodgkin’s lymphoma who underwent more frequent surveillance CT scans demonstrated an increased risk for a secondary primary malignancy, according to a results of a nationwide population-based study conducted in Taiwan.
Use of CT scans for patients with lymphoma undergoing curative-intent treatment has become more common, and development of radiation-associated second primary malignancies in long-term survivors has emerged as an increasing concern, according to study background.
Jyh-Pyng Gau, MD, of the division of hematology and oncology at Taipei Veterans General Hospital in Taiwan, and colleagues analyzed patients with non-Hodgkin’s lymphoma who received curative-intent treatment from 1997 through 2010.
Researchers divided patients into two groups based on the median number of CT scans performed (≤8 or ≥9).
Gau and colleagues used the Kaplan-Meier method to compare cumulative incidence of second primary malignancies in these groups, and they used propensity score matching to eliminate potential confounders. Cox proportional hazard models that used competing-risk analyses adjusted for mortality identified independent predictors for development of secondary primary malignancies.
Researchers identified 180 secondary primary malignancies in the study population.
Results showed patients who received nine or more CT scans had a significantly greater risk for secondary primary malignancy (HR=2.25; 95% CI, 1.61-3.13) than those who received ≤8 scans. The difference remained significant after correction with propensity score matching, researchers said.
Patients who received ≥9 CT scans demonstrated significantly higher incidence of secondary primary malignancies in the breast (HR=11.22), stomach (HR=5.22), and liver and biliary tract (HR=2.18) than those who underwent ≤8 scans.
Each additional CT scan increased risk for secondary primary malignancy by an estimated 3%, researchers wrote.
I read that research, but found it hard to assess risk from it. Since August 2014, having had a radio-active contrast agent for a suspected heart condition (it was okay), 3-4 for broken bones and one CT scan for pneumonia with another due in a month, I became concerned about my exposure and the risk of secondaries with CLL. However, my concerns have been gently dismissed by health staff, who work in at least four separate departments in various hospitals, so perhaps the accumulative dose isn't immediately apparent to them. Reading this has made me think again.
Damage is accumulative but medical x-rays are hopefully not routine unlike background radiation which is every day of our lives. Modern well maintained equipment is more likely to deliver the minimum required dose to achieve the objective.
None good especially when you also have cll.
Dose from a banana potassium-40 is used as a unit of radiation. The equivalent dose for 365 bananas (one per day for a year) is 36 μSv. But like other radiation from food it passes through unlike damaging particles taken into the lung.
We can't avoid background radiation, uk annual dose 2.7 mSv ( Cornwall 7.8 mSv), US annual dose 6.2 mSv.
Certainly worth asking doctors to justify the need for a CT Scan and whether there are there option available like an MRI scan. Many doctors will not have access to your full x-ray history so helpful to keep your own complete record to help educate a decision.
Thanks, that's good information. Taken into the lungs - this may be a stupid question, but if I inhale less when having an x-ray/CT would my dose would be lower? Or does that apply only to background radiation? I know this has drifted a little off-topic for this thread, but I hope it answers questions others might have.
You don't need to worry about how deeply or how rapidly you breathe for any radiological examination unless you are asked to inhale a radioactive contrast/tracer gas. With X-Ray and CT-scans, radiation exposure comes from the X-rays that don't go through your body, but are stopped by your DNA, damaging it. This damage is nearly always automatically repaired by marvellous cellular repair mechanisms. If unrepairable, the automatic repair mechanisms should trigger apoptosis - controlled cell death. On the very rare occasions when this doesn't happen and the cell continues to survive and begins to divide uncontrollably - i.e. incipient cancer, T-lymphocytes usually detect and kill the damaged cell. CLL cells impair T-lymphocyte activity, which is why we are at a higher risk of secondary cancers With X-ray and CT-scanning, contrast scans use heavier elements like barium and iodine that are more likely to stop the X-rays, providing the needed contrast.
Some other radiological scans like PET (e.g. checking for Richter's Transformation), use a short lived radioactive tracer - usually fludeoxyglucose (FDG) delivered by intravenous injection.
The easiest way to stop background radiation contribution from breathing is to avoid smoking and if you live in an area with high radon concentrations from radon gas (see Myrddin 's reply above), ensure your house is well ventilated. Lung cancer can be caused by radioactive particles lodging in your lungs and irradiating the surrounding lung tissue. By smoking, you breathe in more solid particles that can contain radioactive elements and you also paralyse the cilia that remove solid particles from your lungs, giving you longer exposure to the radioactivity.
thanks Neil. I've never smoked, although I played in very smoky bars for many years. That's useful info on the various scans too. Pity I can't 'favourite' replies to posts.
Didn't know clinical trials may include more testing. Something good to know about before deciding if it's the right trial for yourself. That's helpful.
I, too, had cll for several years prior to diagnosis. I was eventually diagnosed after insisting my GP authorised a blood test as I was getting frequent throat infections and guessed something just wasn't quite right. Two days later I was having a bone marrow biopsy in hospital. I was diagnosed well into stage B.
I had questioned lumps in my neck 4 years earlier but told I was fussing about nothing. Those same lumps completely disappeared following chemo treatment !
I was lucky in a way as (despite the delay) as I was only put on watch and wait and stayed on w&w for a few years before chemo. Much worse for those diagnosed late.
Sometimes just an extra step down the "process of elimination road" needs to be taken by our GP - sometimes at our insistence - but I recognise the financial/time restraints on them.
Love the spider's web, Neil - but so glad I can't see the spider!
At least with CLL, it's the exception to need treatment straight after diagnosis; most of us commence a hopefully long period of watch and wait. Those with more aggressive but equally rare cancers aren't so lucky...
Those silk strands were caused by hundreds if not thousands of baby gossamer spiders - each no more than a millimetre or two in size. It looks really weird with the strands waving in the breeze. I had to brush silk strands and a few spiders off me after trying to take close-ups of them readying themselves to launch themselves into the air...
In July 2012 my WBC was 20. I had meant to inquire but got busy at work and forgot about it.
In 2013 when it came back at 20 again, I called and asked the doctor why we weren't concerned about my high WBCs. Her response was that they had always been high!! I bit my tongue to keep from spewing ugly words back at her!! I went in for more labs the next day. A week later at my first oncologist appt my WBC was 30.
I never went back to that doctor who I now had no trust in whatsoever.
Three years later I am still at stage 0 w&w with a WBC of 40 and am being seen every 4 months by a leukemia specialist.
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Living well with CLL
in our discussions about cause of CLL 
ANN ARBOR STAGE 3
