How were you diagnosed with SLL/CLL? You are w... - CLL Support
How were you diagnosed with SLL/CLL? You are welcome to reply to expand on your diagnosis experience.
Ha, I guess I'm the first to vote. It will be interesting to see how this trends.
Unfortunately, because SLL/CLL is uncommon (GP's see perhaps 6 lymphoma cases in their career of which SLL/CLL is just one of the more common variants), many of us went through a stressful time trying to find an answer to why we were unwell. Your experiences along the path to diagnosis will be of interest to this community. Here are some questions to start the ball rolling:
1) Who diagnosed you? Was it your regular doctor? Did a different doctor than your regular notice a problem - perhaps another doctor at your usual clinic, a relieving doctor or a doctor at another clinic? Were you sent to a hematologist or oncologist who eventually provided the diagnosis?
2) How long was it from when you noticed symptoms until your eventual diagnosis?
3) Did you report symptoms and / or have labs of concern that were dismissed and your concerns written off?
My answers:
1) My regular GP followed up a low neutrophil count in a blood test taken during a general check-up. Fatigue was my major symptom prior to diagnosis, but I dismissed it as age related. An earlier (and ignored) abnormal blood test indicates I probably had SLL at least three years prior to my eventual diagnosis. Looking back, I suspect I may have had it for upwards of 10 years.
Neil
2009 was a very busy year for me, work/family responsibilities wise. I had a lump in my neck that had been around for a year or so before I went to a walk in clinic in Toronto to have it diagnosed. The doctor on duty looked at it and told me to go to my regular GP and ask for a mammogram. That scared me and so I made an appointment to see my GP (I'd put it off as she always kept me waiting at least an hour in her waiting room). She ordered a needle biopsy at a local hospital. Before the needle biopsy, I was sent for a CBC. After a three week wait, the needle biopsy was done, and I waited a few more weeks for an appointment with the GP to get the result. The result was inconclusive due to low cellularity of the sample. The CBC taken 6 weeks earlier was then reviewed and the accompanying report favoured CLL! I was then referred to a Haematolgist and waited another couple of months for the appointment, then further tests were done which confirmed things. A CBC taken during 2008 when I saw the GP for a long bout of sinusitis showed a ALC of 6.5, so it probably started then.
None of the above. I was in his office for an annual checkup. I had no complaints or worries.
Have a history of heart problems and I went to a minor emerg clinic to see if ekg was ok...They said yes it was ok anything else ??? I told them my groin gave me sharp pain when granddaughter sat on my lap so they did a cat scan and told me I either had a severe infection or some other serious problem and sent me to a gastrinterologist .
A friend ,the GI guy , looked at ct scan and sent me to MD Anderson .. ...they diagnosed it as sll/cll and then came watchful waiting for 2 years... Now I am in a trial and have Ibrutinib which has almost eliminated the lymph nodes I can feel after 18 days of therapy.... but I am extremely fatigued and sleep a good 2 hours in the afternoon.. more than you wanted to know.. fish 61
Kaymack,
Was all the time in between appts because of socialized medicine?? fish 61
Probably fish61, but it didn't change the outcome, and another GP may have been more proactive. I'm now about to start my 3rd cycle of FCR in my birth country of New Zealand, a country that also has socialized medicine, and I pay $5 per cycle of FCR and no hospital fee. I'm very happy with the standard of treatment I get in the public hospital here. I have previously worked in the medical field in the U.K., Canada and N.Z., where the average life expectancies are higher than in countries without socialized medicine. I expect there is a correlation.
1)A rheumatologist diagnosed my CLL based on flow cytometry.
2)I was subsequently referred to a hematologist/oncologist who confirmed the diagnosis.
3)Several months went by before any physician thought to do a blood test.
4)Symptoms in the months preceding diagnosis were sore swollen lymph nodes, sudden sensory neural hearing loss, roving joint pain and Raynaud’s syndrome. My primary care physician, an oncology surgeon and an otolaryngologist all thought my symptoms were due to allergies. None of them thought to do a blood test.
5)Immediate treatment with F resolved all symptoms within two months, treatment continued for another 6 months followed by R.
6)That was 16 years ago. I’m currently on my 4th round of treatment, (2nd was FR, 3rd was Trenda/bendamustine and now R & Revlimid/lenalidomide).
Company policy is that all managers have the opton to have an mot every few years. It was one such health review that picked up the abnormal blood counts and subsequent diagnosis 5 months later. We had concluded it was likey to be leukemia, not denied by locum doctor, and was confirmed as cll by the heamatologist. No support nurse, no leaflet - just you have cll, best cancer to get? see you in a few months time.
Found 4 years ago on annual blood test because I take statins. Still on watch and wait. No symptoms apart from some tiredness.
Diagnosed during a minor operation at a hospital. It was badly handled with staff only having 2 minutes to discuss the matter. Was of course told I had the ‘Good Cancer’. Later the same hospital brought in a new younger oncologist who had as much time as anyone wanted and was very knowledgeable. As is often the case, it is the person you end up with and not ‘the system’.
Dick
Diagnosed in 2008 following blood test prior to hip op. Had had abnormal blood test 2 years earlier not followed up. Local haematologist told GP to monitor me herself. He reluctantly saw me June 2011 when level had doubled in 6 months. Monthly wait and watch despite increasing infections larger lymph glands extreme fatigue and leveldoubling every 6 months, told me no treatment as I did not have severe nights sweats. Oct 2012 he arranged bone marrow test for Dec. I found CLLSA on web, got transferred to CLL consultant at another hospital and started treatment within a fortnight. A few hiccups but now OK.
Hope to get new hip next year.
Disgracefully, when I asked "how long have I got?" he replied "How long do you think I have got I could walk under a bus when I leave here" I replied "What in a 4x4?" End of conversation, it was only 10 days later when my wife made an appointment with a different doctor at the practice we got SOME sensible answers by this time I was in a state of shock and depression and my wife was in an angry state of denial, now 18 months later we have managed to get some sense of normality back into our loving marraige. Thank God.
I decided to go for a PSA test in 2005 and was found to have a WBC of 17. CLL was diagnosed.
Same here, PSA test revealed WBC of 28. I was asymptomatic, working part-time, in the gym several days a week (10km on the treadmill), a volunteer in a night shelter for the homeless and playing tennis at weekends.
For almost 3 months I had 'suspected' CLL until a bone marrow biopsy confirmed it.
Funny how different haematologists work. I've never had a a bone marrow biopsy.
Neither have I, and I'm half way through my first treatment (FCR). It was started due to declining Hgb and Platelets. My ALC was only 80. No complaints.
1) I went to the doc to ask for a referral to my local hospital to take up my sleep apnea treatment after finally securing a job close to my family home. He noticed I hadn't been checked for blood sugars for over a year ( yes my weight means I am at risk of type 2 diabetes, I am working to lose it though) so I had a fasting blood check, this came back abnormal and the hospital sent it back saying I needed a non urgent haemotology appointment which was around 10 weeks later, a series of blood tests and case study confirmed the diagnosis and I am now on W&W, first told on Valentines day this year.
2) Had no real symptoms, was tired more at work but put this down to commuting and maybe my sleep apnea.
3) To date no nothing like that, it has been a very good response so far, my Haemotologist has written that I am well read on the subject so consultations are normally a chat on how things are and any questions I want answered.
Hi we had been on hoilday where I felt fine but when I came home I just felt ill. Tired couldn't sleep and a general feeling of being unwell. I went to my GP who gave me a blood test.I got the results via the phone, given wrong advice and no help. It took a lone time to be seen at my local hospital being this GP had not sent them a letter. When I did get seen at the hospital they were wonderful and I have had good care and treatment. But the may the initial diagnosis was delivered has coloured my opinion of Dr's for ever.
I'd had a sore 'patch' on the corner of my mouth for months which had not responded to any of the numerous treatments that my GP had tried. Other than that, I was feeling quite well. Thinking it could be caused by Anaemia, she ordered a complete blood screen as I also have a couple of other underlying conditions. Rang for the results a week later and was told that everything was fine. Got a phone call from my GP 2 weeks after that saying she wanted to talk to me about my blood results and had made an appt for me the following morning. I protested that I'd been told they were all clear. She explained that there was one that she would like to talk to me about. When pressed she admitted it was my FBCs. I knew then that it was going to be a Leukaemia related thing as my mother died from an acute version. My GP was and continues to be absolutely fantastic. When I saw her, she apologised and explained that my white count had come back abnormally high at 43 but rather than cause me unnecessary sleepless nights she had decided to order further tests to find out exactly what was going on before telling me anything. She told me that it was going to sound worse than it was etc etc. She had spoken to the Consultant specialising in CLL at the hospital and there was no need for anyone to do anything at the moment, other than monitor the situation. The specialist had set out the the circumstances under which I would need to be referred to the hospital.
We got over the shock and carried on as normal with regular blood tests. Unfortunately my white count accelerated rapidly and following a series of infections and with a white count now of 200, I was quickly referred to the hospital. 14 months after the initial diagnosis (I'd had the CLL for less than a year before diagnosis as everything was normal 12 months previous to that) I'm now taking part in a clinical trial comparing Ofatumumab and Bendamustine/Chlorambucil. Absolutely everyone I have had contact with about my CLL, from my GP to the Consultant to the nurses and HCPs on the wards, has been fantastic. I'm certainly lucky to live where I do.
I was referred to a haematologist (by my GP), due to fatigue and increasingly high lymphocyte counts. More tests were then done and I was told told that CLL was suspected, but not definite. It was explained that there would be no treatment needed at that stage anyway, so I shouldn't worry about it. Annual blood checks continued, from my GP surgery, and the lymphocytes kept creeping up.
Then one year (2008) I noticed a locum GP had written "Known CLL" on my blood request form. By that time my lymphocyte count was around 9,000 (total white cell count 15,000) so it shouldn't have been a great surprise to me, but it was still rather a shock to see those words written there. It really brought it home to me. I actually took a photo of that blood request form (just for the record, not to publicise it).
When I'm asked when I was diagnosed with CLL, my reply varies. I knew definitely that morning in 2008, when I saw it written on that blood form. But the docs probably knew before that, and I knew it was very likely.
Now, five years later, my lymphocyte count is 115,000 (double what it was a year ago). That and a few other symptoms are indicating I'll possibly need treatment within the next 12 months. So I'm now trying to get much more informed...
I had been feeling very tired and experienced a loss of energy for about two years and finally decided to visit a local clinic because I did not have access to a family GP. My blood work showed a high WBC. A follow-up flow-cytrometry indicated CLL and I was referred to internist who assured me I would not develop any further symptoms for several years if ever. Within 6 weeks I enlarged lymph-nodes in several places on my neck. I immediately sought a more "expert" opinion at the Hematology clinic in the nearest major centre. Where I was told my fatigue had nothing to do will CLL. Been on W&W for 4 years.
It sounds quite amusing to me now, but when I was still working around 2006 (for 46 years by retirement) when I stood up from my desk at work my legs would collapse from the top and I would fall back down into my seat! I visited my GP who examined me and (quite excitedly, as though making a significant discovery) announced that he thought I suffered from CLL. He then arranged a blood test and visit to a heamatologist. I subsequently had a hip bone biopsy which confirmed the diagnosis of CLL with the heamatologist saying I was in "watch and wait". I have soldiered on since then but recently in the past year or so I have had increasing night sweats and very bad fatigue with pain around very swollen lymph nodes. I have an appointmntment (after a long wait and A & E admission for unbearable paid) for 5th November 2013 to get up to date with things.
I have a question I have been burning to ask CLL bloggers: Has you GP ever prescribed any medication for the extreme fatigue which comes with CLL?
Some CLL patients report some fatigue relief from low dose Ritalin. It is something you should discuss with your doctor. You might also consider a sleep study to see if you suffer from sleep apnea, not uncommon in CLL/SLL, where nodes in the neck and throat are enlarged... I was on a CPAP machine for a year or so and saw some relief, but loosing weight through diet and exercise helped tremendously... ~chris
...should read "unbearable pain"
Hi Alana
Short answer no. Mine just does not give me antibiotics for my sore throats either, telling me we must keep them in reserve in case you get a chest infection and really need them. Ho hum!
Good luck on the 5th Nov.
Bub
Interesting poll - mine was the blood donation service picking up low haemoglobin levels.
This poll lumps 'follow-up of abnormal blood test' with 'blood donation check'.....are they subtly different, as with the blood donation check it is v likely you have no idea anything wrong (no symptoms of any kind)?
With the follow-up of an abnormal blood test, how did you get to that place? Is it via GP, who you went to because you were feeling rough?
Quarry,
The poll template limits you to 8 options, so for several likely factors leading to a diagnosis, I had to lump in one or more similar items to get down to the 8.
I was quite surprised to find that "Discovered while being investigated/treated for another condition" is the leading means by which most of us are diagnosed - and by a significant margin too. I personally was expecting this to be in the bottom half of responses. Arguably this overlaps with the "Follow up of an abnormal blood test/blood donation check". What I intended with this abnormal blood test category, was to capture people where their diagnosis was initiated from someone noticing that one of their blood counts was significantly out of the normal range and initiating a further investigation. That is typically a high lymphocyte count, but could also be a low count in another blood cell line due to the bone marrow and or spleen being infiltrated by the CLL. The initial blood count could have been taken as part of an investigation into an illness or tiredness/fatigue, part of a wellness/annual check up or from a blood donation check.
With the low percentage of blood donors (sadly), I wasn't expecting many responses for that particular reason. However, I guess that the chances of this being the reason for diagnosis increases because donors give many times a year and their blood is checked each time, compared to perhaps an average of one blood test per year for the rest of the community.
Neil
I had of course forgotten that blood donation service does test after donation, so my early summer donation must have been ok. Last Nov, the 'crude' pre-donation haemo test picked up an 11.5 and I was stopped from donating there and then. So I keep forgetting the donated blood is actually tested in more detail (eg lymphocytes etc): so something happened to me early autumn.........the plot thickens!
Interestingly, if I was not donating, I very much doubt I would have had a blood test anywhere near once a year.......I can not remember having one since I came back from Africa in the mid 80s!
I was referred after a series of three abnormal blood tests, the first one requested by a locum doctor I saw for tiredness and low spirits. She asked for it to be repeated after three months, or sooner if I felt unwell. Then I had an infection under a finger nail, which was slow to heal, and a blood test was requested again. The doctor who saw the results of the third test said he would have a word with a colleague at the hospital, very low key, and I came back from holiday to a series of letters asking me to make an appointment with the specialist. I had not realised it might be a significant problem until then.
It was investigated very quickly from then, and I was shocked to hear it might be CLL. Over the Christmas and new year period I had a full scan and then a bone marrow biopsy to establish a base line, but I am now on watch and wait, with an appointment for a year ahead after no significant change from the first tests. People's experience seems to vary so much.
I awoke one morning last year to find a strange lump, about the size of an extra-large egg, under my arm. It was on the weekend so I waited until Monday. I did some research and thought it was probably some kind of infection. On Monday, the doctor did too but couldn't figure out why. So she decided to let me go a week and come back. A week later my other arm sympathized and grew it's own. Next, an ultrasound.
The following week I got an ultrasound and had to wait for a few days. The next thing I know I'm referred to an oncologist. Now I get scared. I see him, we do the whole blood count and everything and he doesn't think it is cancerous. He isn't sure what it is but he'll have me on my feet in a couple of weeks. Let's do a CT scan.
Wow, I've got enlarged nodes all over my chest and neck. He still doesn't think it is cancerous but now wants to have a biopsy done to rule it out. In three days I go for the surgery and then I wait a week and a day for the results. It shows that I have lymphoma but she doesn't know the kind yet and my oncologist will be able to evaluate this. That will be in four days.
By this time a good six weeks has gone by from finding the lump to begin with. My oncologist tells me the startling news, I have SLL and it is in stage three. He wants to make sure it isn't in my bone marrow and he doesn't think it is but another biopsy is scheduled. A week passes and the biopsy is done. Another week goes by and the results are in. It is CLL and in stage four. I've probably had this for many years. Oh and happy holidays! (It was the middle of December when I got that last bit of news.)
I'm considered "lucky" because it is slow growing and he says that I'll live into my eighties easily. Somehow, with all the misdiagnoses I don't feel confident in that assessment and besides I am feeling quite a bit worse now than this time last year and the swelling has not subsided. Still on watch-and-wait however.
You might consider a second opinion with a CLL specialist... often clinical researchers in large centers or university hospitals.
Do I ask my oncologist for a second opinion and let him refer me?
This varies with your medical system, usually a GP will refer to a specialist...
Okay. Well, a GP did refer me to an oncologist. He's one of the best in Atlanta. He is also a hematologist and a cancer specialist so I kind of get the best of both worlds. I still see my GP and keep him informed and see my oncologist every three months still.
Atlanta...perhaps Dr. Christopher Flowers.
Hi, I had a large lump behind my ear - GP thought it may have been an infection as it was very painful, but it didnt clear up. She ordered a full blood count that revealed the CLL. I was on watch and wait for 3 years until last year when I started chemotheraphy on the ARCTIC trial. After the first treatment I felt so much better, I really didnt relalise how ill I had become over the preceding 3 years. I coped well with the chemo although Ive had a few infections since and a nasty bout of shingles in my head and around my eye - my consultant put me on a further six months of gammaplex to boost my immunity. Overall I am doing well. I cant commend my medical treatment highly enough, I am lucky to live in the UK where I receive gold star treatment via the NHS.
I had a pre-op exam for an unrelated surgery.
It's been interesting to read how people discovered their CLL .... and for me, its vagueness is reassuring! The diagnosis was harder to take than the symptoms I presented with - primarily bone pain, in lower legs and pins & needles in my toes! I am still not sure whether they are related to CLL - the blood test discovered it! Am now reconciled to, and hoping for, a long W&W!
