I feel like a bit of a fraud here as all I have is a high WBC (52) and lymphocyte (48) count. I went to my GP today asking for a referral to the haematologist at the local hospital. She said that because I had no symptoms and am actually healthier than I have been for a long time due to a change in lifestyle (plant based diet, more exercise and no alcohol) I shouldn't worry and don't need that referral.
I have mixed feelings about finding out what 'strain' of CLL (as in 17p depletion etc) I have as I don't know if I want to know what the prognosis is. It's a bit like not wanting to know what sex your baby is!!!!! She had no idea about these variations and I think I know much more than she does. I feel fine- probably better than I have for a long time because of my changed lifestyle.
I am thinking I will send her links to all of the sites that have helped me in understanding this complex cancer- or am I being presumptuous in doing this? She is a very cool and I like her a lot.
What do you guys think?
Cheers
D
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Kiwidi
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My levels were not that high when I needed treatment. I didn’t have symptoms that they felt were CLL related.
I did have where the lymphocytes doubled and my platelets dropped. The oncol. suspected some other reason for the platelets dropping, but the bone marrow biopsy results showed my marrow was 90% CLL.
She said if this had been 40 years ago, the CLL likely wouldn’t have been discovered until I was very ill.
Not saying it to be concerning— just as a reminder that CLL seems to affect individuals very differently.
I’m surprised a GP wouldn’t want a specialist involved. How often is she monitoring your blood work?
I can’t answer to whether sending links is presumptuous or not. If she is “cool” as you say, then you could certainly send her links. But if she doesn’t appreciate them, you have to be aware it could result in needing to find another doctor for a few different reasons.
Some of your other comments about her not being aware of variations, etc.— well all the more reason to see a CLL specialist, or barring that a hematologist.
One other stray comment on the it worrying part. Meant to be reassuring, but I think you have reason to be concerned. I had a dentist tell me not to worry about a slightly infected dental implant. He felt it was important to leave it in and have use of it and that the infection was so small as to not possibly cause me any health issues. To let him do the worrying for me.
So I left the implant in. I ended up changing dentists about 8 months later for other reasons. Only to find out that I had bone loss and additional infection around the implant. Took more attempts at treating the infection to discover the implant had a mechanical failure. It had to be removed after 4 years of infection.
Glad you are healthy and feeling well— you definitely want to stay that way.
Kiwidi, you have had some excellent advice from many here about the importance of having a specialist oversighting your CLL. KatieBlue has put the case succinctly. CLL is a heterogeneous illness and rare. Australia's Leukaemia Foundation found that GPs saw about 6 cases of lymphoma, of which CLL is just one variety, in their entire career!
By all means provide your GP with reference information, but also get a specialist referral. They will send a report to your doctor after each of your appointments, letting her know how your CLL is going and taking the pressure off her. Your GP would I think appreciate being referred to the CLLSociety.org website, as it was created by an American GP and his wife and it is a very good source of maintained, accurate information, because the GP keeps in touch with CLL specialists world wide.
I would not consider your concerns make you a fraud in any form as it is quite reasonable for you to have concerns and to expect to see a specialist in the field. Whilst liking your GP is a reason to consult them, it does not necessary afford you the medical support and knowledge that a haematologist would have.
Like many people diagnosed with CLL, I did not fit the standard, being a 41 year old woman with normal blood test results, but with enlarged lymph nodes, to the point during months of blood tests and ct scans, many other diseases where suggested, such as Lupus etc.
When I was diagnosed with CLL I was referred to a haematologist within the NHS two week time frame for cancer referrals, I was seen every 6 months.. My blood results where pretty "normal" for the 9 years I was on watch and wait, as my diagnosis was from a biopsy on an enlarged lymph node. Throughout the 9 years my lymph nodes where the issue. Even though I was being seen by a haematologist regularly my need for treatment was because of not a very common reason that 3 GP's that I saw did not realise were related.
When I was referred to the haematologist at my local hospital, I was offered counselling at my first appointment, given contact details for a named haematology nurse, had a bone marrow biopsy etc. I was only tested for any deletions/ mutations at the point that treatment options were being looked at, which I think is the standard approach with CLL and the NHS. So it was only at that stage was I informed of having 11q.
You may find that you would be happy with a consultation at your local haematology department, so you can meet the staff, and feel comfortable, rather than only having contact with the department when you need treatment and then having no previous point of reference with a the new doctor. Maybe, once you have had a couple of consultations and you are familiar with the department, with the reassurance of your haematologist, you go on to have your bloods taken at your GP surgery, the results to be looked at by the haematologist and reported on, which is pretty much what I chose to do for 6 years.
I hope your GP will support you with your concerns, and agree to you being referred to a haematologist.
If you are on a plant based diet, maybe ask for regular vitamin D tests, I was found to be defficient when treatment started. Hopefully your GP is aware of the correct vaccines your should have.
I am based in the UK - and I know our systems very well. I cant imagine its so different in NZ.
Please help me understand your situation a little better.
Have you had a form CLL diagnosis? If so who made that diagnosis?
You have a raised lymphocyte count, that needs investigating by a Haematologist, using scans, biopsies and a bone marrow - sometimes. And in time FISH tests etc.
Here in the UK the "strain" of CLL is often not tested for until treatment is considered, because CLL is fluid and can change, and of course treatments are evolving fast. I lived with CLL for 3 years before I found out I was not 17p deleted. That was an anxiety for me.
To respond to your post directly...
Yes! You definitely should see a Haematologist and your GP must refer you. Ideally you should see a Haematologist who is an expert in CLL, and indeed in time get a 2nd opinion pre treatment from a CLL super-specialist at least once. (If you ever need treatment)
A raised white blood cell count needs Haematological investigation promptly.
I would not rely on educating this GP, I would firmly request a referral. If you don't succeed - get a different GP. That's always easier in an urban setting of course.
With time, many of us with CLL will know more about CLL than the average GP. And that's OK!
I will look out for your answers!
There are many on this amazing forum who are very self-directed patients. I trust you will get responses from them!
Meanwhile enjoy your wellness, attend to your diet and exertion therapy
I encourage you to keep pushing for a referral. Do you have to be referred or can you make an appointment with a specialist? We made our own appointment and so thankful we did. You may not need treatment for a long time, but if and when you do it’s crucial to have that specialist on board.
I was referred to Hemologist /oncologist by my urologist. After pathology on prostate tissue revealed it had been infiltrated with CLL. Now, as it turns out the hemo/onco is really a brest cancer specialist. After seeing she was not well informed on CLL. I asked my GP for a referral to a CLL specialist. The response back from the GP? "Could you ask your Urologist to refer you as I am not familiar with CLL. Your Urologist would be more familiar than me."
Uh, no the Urologist is unfamiliar with CLL as well. But the Urologist has referred me to a new CLL specialist that I requested at Duke.
I repeat, I found the specialist myself and then asked the Urologist to refer as he is always willing to refer.
Some Docs don't understand the disease, or just don't want the bother.
So, find a CLL specialist in your area. One that is highly recommended. Get a Doc to refer you as your blood numbers are out of norms. Sounds like your GP doesn't want the bother, so find another Doc to refer you!
I've been where you are. I too like my GP and trusted her. I too was refused referral to a haematologist. This was wrong advice. You only have one life, I hope you take this further
Kiwi, I think the answer to your questions become easier if you think it through. You have been diagnosed with a potentially very serious cancer. (I say potentially because there are a lucky few who never need treatment for Cll).
Cll is a complex disease, each person having their unique version of it, even among those with the same deletions. You have a well meaning GP who even if you educate with a few articles will likely never understand the complexities of Cll.
So should you push to go to a specialist? That’s easy for me. You have a very unpredictable cancer. You absolutely should establish a relationship with a specialist who can monitor you, even if it’s just annual visits at this point.
Should you send some articles to your GP on Cll? If you have a GP interested enough in your case to read up on it, I would. Knowledge is power.
Insofar as doing FISH testing now and finding out what strain you have, that might be a moot point where you live as the specialist might wait to do it anyway. But it’s not like not wanting to know the sex of your unborn child where knowing doesn’t really change anything.
At most major cancer centers in the US, FISH is done at diagnosis. Doctors may want to monitor those with more aggressive strains of Cll more closely, so there is a purpose for early FISH testing. I wouldn’t consider it essential though. Unlike most other cancers, delaying a few extra months to treat Cll rarely changes your prognosis.
If I had a choice to do FISH, I personally would do it because I think more knowledge is usually better than less. That said, I understand why some doctors do not consider it essential at diagnosis as it is your labs and your condition that drive the decision to treat. FISH is important in selecting what treatment to do.
I was a provider in a primary care practice for 14 years. A GP is in no way equipped to manage CLL or any other cancer. At a minimum your CLL needs to be managed by a hematologist and preferably a CLL specialist even if your disease appears to be stable at this time. You need to have an established relationship with a hematologist who can oversee your CLL. Any GP who thinks they can monitor your CLL is not cool. We had a physician in our practice who was a great person and loved by many patients, but was extremely unsafe with limited medical knowledge. He made many mistakes and eventually I left the practice due to his incompetence and the dangerous care he provided. Your GP may be a wonderful person and perhaps even a great GP, but there is a reason why physicians get advanced training and certification as hematologists and oncologists. Get a referral and establish a relationship with a hematologist/CLL specialist so that you and your GP will have a resource if and when issues arise.
I think you need to insist on a referral to a hematologist (if not an actual CLL specialist). That really is in your best health interest. The very fact that you now know more your than your GP about CLL (and I can totally believe that!) is all the proof necessary. Even if you feel fine and are aware of no symptoms, you still want to have a hematologist (ideally CLL specialist) following your case, not just your GP. Good luck!
I understand where you’re coming from Kiwidi, because I used to be very healthy. In fact l was in top shape, exercising, ate good foods, no smoking, alcohol and took all the best vitamins. When I was diagnosed my numbers were looking pretty good, except for a little anemia. The doctor said I was very lucky to have the good leukemia.
The folks on this blog gave you some great advice. The best advice I’ll give you is what others have already said; see a Cll specialist and find out as much as possible about your condition.
Thank you all for your advice and concern. I have just had a long talk with a guy from Leukaemia NZ and have found out that our local (and only) haematologist is 'right up with the play' when it comes to CLL treatments. He works 2 days a week at the public hospital here and 3 in private practice. I will try to pressgang my GP into getting me an appointment through the public health system (free) or if that fails will see him privately. I have successfully floated between the two systems before when I had some eye problems so will probably only have to pay for the initial consultation.
Interestingly the LNZ guy said that here with no symptoms the threshold for referral is around WBC and LC 100 so my doctor was not so wrong in being reluctant to refer me. It is probably something to do with lack of resources though!
I have time on my side so I will let you know how it all pans out. Next thing is a BCell surface markers blood test which has to go to the other end of the country, then a trip to the haematologist. I have a plan! Have as good a day as you can and thank you again.
Oh by the way, I am only on a mainly plant based diet. I eat a lot of seafood and some chicken and occasionally I have a good big steak! Self discipline is not a strength of mine!
With regard to your GP, as you seem to like them stick with it and educate them. I am in a large London practice and I am the only patient they have with CLL. The main problem I found was dealing with infections. Patients with normal immune systems can fight them. After several Doctors said ‘it will go away’ they now listen and give me antibiotics when required.
Thank you Colette. The LNZ guy said that this haematologist is very keen on educating GPs and has already facilitated a workshop in a neighbouring town. He is apparently hoping to do the same here. I will stick with my GP and will certainly inform her when that takes place. I reckon she is already researching CLL as she is a pretty smart cookie ( well, I think she is anyway) Have a great day ( or night) wherever in the world you may be😀
I am glad you are looking into things. And I’m glad I didn’t have that threshold for treatment. My symptoms were attributed to other health conditions and my highest labs were 38.5k WBC and 29k for lymphocytes.
The original plan given me was to do labs quarterly for about a year, then back off to every 6 months, then back off to 12-18 months. But that plan changed, and less than a year into the quarterly plan, I was back to monthly labs.
I hope until you can get in or are allowed to get in with an oncol / hematologist or CLL specialist, there is someone having you get appropriately timed labs and monitoring/watching those results.
Having the information about the type of CLL and establishing care with a specialist sooner than later can help save valuable time should things start to trend in a less favorable manner than you are currently experiencing...
My numbers are low. However I asked to be referred to a specialist. I figured I wanted to be ‘watched while I wait’. Also, when the time comes (as it will for the majority of us) then I am in the right place and in the system. I learned things from my specialist that I wouldn’t have from my GP. Just my take.
I think you should insist on being referred to a CLL specialist who completely understands our illness, not the gp who is just that “a general practitioner”. As nice as the gp is, they are not specialised.
CLL is unpredictable. Hopefully you will be one of the lucky ones to never need treatment,
I wish you luck on your journey and hope you get the referral.
I'm just commenting on the way I experienced the way CLL is dealt with here in New Zealand. Your guy from Leukaemia NZ is right - when first diagnosed the Haematology Dept at my local Public Hospital (Wellington) was notified but I was not seen by then. I was referred to GP for supervision during the watch and wait period and monitored by her - blood tests etc which seems to be standard practice here.
There is no haematologist in private practice in most of NZ by the way.
I eventually insisted on wanting to see a Haematologist face to face and made a nuisance of myself till that happened . They were pleasant and allowed me to ask questions but referred back to GP as nothing required intervention.
I think you are right and have a right to see a haematologist should you wish - up to you but not standard practice unless significant symptoms
Much later I did have a FISH test - we are talking years later as I had no symptoms including no lymph nodes, received the 17p deletion label. then more GP w&w with 6 monthly hospital visits and monthly blood tests reviewed by GP but with copies to specialists
There is NO CLL "specialist" or super specialist in NZ but the haematologists - at least in my city, all seem up to date with new advances- all attend overseas ASH and other international conferences, and work as a team. They got me Ibrutinib as first treatment 3 or so years ago, and are now are discussing next steps (Venetoclax possibly) as I am no longer responding and am having significant cardiac issues on top of kidney and other unpleasant side effects.
I hope this helps in terms of usual CLL management here. The NZ Leukaemia and Blood Cancer local coordinator was helpful for me also.
Thank you so much for clarifying that! I think this guy is attached to a private hospital and I ‘m hoping I can see him there if not in the public system.
Perhaps some plain speaking but being nice about it would help. Try telling your GP you are more than happy to be monitored by her but as CLL is a blood cancer you would like to see the specialist initially so that you are on their radar, and are comfortable with them should there be a deterioration and treatment become necessary. Say this would be less stressful for you.
One thing I liked in the public system was that although each patient is assigned to one of the named specialists the whole Haematology team case conference, so knowledge is shared and updated, and patients can choose to see another one of the team if not comfortable with first assigned person.
Once I started regular hospital appointments I was given the email address and phone number of "my" specialist so could contact him directly.
Wishing you every good luck and a long watch & wait period - mine was about 20 years despite 17q- .
Thank you so much for your reassurance. I am feeling fine about it all now having panicked a bit unnecessarily. It’s allowed me to clarify my thoughts and I do feel so lucky to have time on my side. 😀
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