Someone who sees plenty of CLL patients and keeps across the latest developments in CLL management and treatment, i.e. a 'CLL specialist' is more likely to correctly inform you of when to start treatment, i.e. know when you are in the treatment window and not treat you before strictly necessary. They will also be able to recommend a treatment that they consider best for your circumstances, rather than one with which they have the most experience (which could be superseded). Importantly, if you have any less commonly experienced symptoms, whether in watch and wait, in or post treatment, they are more likely to be familiar with the best response.
To use a car analogy, do you choose someone to maintain your car with expertise in your model, particularly if it is a rather rare, e.g. imported model, or do you choose your closest car service agency?
"A Mayo Clinic study found people who were cared for by doctors who focus solely on chronic lymphocytic leukemia had longer overall survival than those who were treated by hematologists and oncologists who manage many types of cancers."
I travel over 800km (500 miles) round trip to see my specialist and many here make similarly long or longer trips, perhaps annually, while in the regular care of a more convenient local specialist that hopefully is prepared to consult with the distant CLL specialist.
since you spelled hematologist the usa way i'm going to assume your in usa. The best reason to have a cll specialist is because usually they are at big medical centers and see mostly cll patients. most trials are held at their centers and they usually have a hand in administering some. They are far more informed than your local oncologist/hematologist on your issues.
I have a local hematologist and a specialist at Dana Farber in boston. I see the specialist about twice a year. She and my local doctor collaborate-mostly they agree. I get most of my tests and drugs from the local doctor.
Some hematologists that don't have lots of CLL experience mistakenly think that treatment must be started at WBC of 100. This is true for CML but not CLL. And CLL experts will usually track ALC / Lymph# and not WBC.
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You can get a 2nd opinion at no cost and without leaving your own home by applying here:
It was entirely due to the advice of this group that I sought out a CLL specialist in addition my local hematologist/oncologist after I was first diagnosed. Now about 3 years later I feel it was one of the best decisions that I made regarding my CLL.
Aside from the excellent reasons stated here already, I have also found a certain peace of mind in those moments that my local doctor and my specialist echo one another in their thoughts or conclusions about something.
I also feel that at this point, my CLL specialist and my local hema./oncol. each have a better sense of the "whole me" medically than might have otherwise been possible.
I see a local general oncologist every 3 months. He has a good insight on my SLL. That being said a CLL/SLL specialist is just that an oncologist that is an expert in That field.
It’s like seeing your general Dr , sure you general Dr has knowledge with your heart but if I had a heart attack I’d want a cardiologist to take care of me not a general Dr.
CLL specialists are generally haematologists who have chosen to specialise in CLL John. Oncologists are more general cancer specialists with a greater emphasis on solid cancers though they may take a special interest in blood cancers.
Your correct I was just referring to the CLL / SLL as the same B cell cancer and a specialist in that field is the way to go if one is available. My local oncologist / Hematologists is knowledgeable in cll/sll but he see’s all cancers more so solid tumor cancers. My Specialist just see’s CLL and Sll patient. If available I think having both is a great option because of the potential for secondary cancers that my local oncologist can also look out for and I pray I never get. And I pray none of us get.
My perspective is a little different since I and my wife both have CLL.
I'm on W&W, seeing a local oncologist. I'm also a primary care doctor. The same oncologist sees a handful of my patients for CLL. He seems to stay up to date and I'm totally comfortable with him.
My wife has had much more trouble with hers. Some of her treatment has been done at MD Anderson, or locally but directed by MDA. If really sick, hospitalization on a leukemia unit at MDA is entirely different compared with a local hospital where the doctors and nurses don't seem to see the big picture
Appeared to be cured for 10 yrs, then it came back hard. She was having large pleural effusions in about Feb-March. She is taking Imbruvica and the pleural efusions miraculously suddenly stopped. Doing well right now
I have seen 4 local oncologist/ hemotoligist. The one I liked just retired. I believe he knew the most. They have been all over the place with how they feel where I am. I am going to take the leap and go to MD Anderson. It has been to confusing and stressful and I feel like I have been managing myself more than 3 out of the 4 did. See a specialist.
I’ve been seeing my local oncologist for about eight years now while I’m on W & W. Now that I’m starting treatment I went to see a specialist and he actually had a different treatment plan than my oncologist had mentioned. They conferred and came up with what they think is best for me and as soon as my insurance approves everything my treatment will start. So for me seeing a specialist was definitely worthwhile. I’m lucky enough to live near a big cancer center so getting there is easy for me but I’d definitely travel if I had to.
1. They have extensive experience and expertise gained by treating only CLL patients.
2. They have up-to-date specialised knowledge of CLL, it’s treatment and clinical trials.
In contrast, generalist haematologists and oncologists might have less than 20 CLL patients, most of whom are on ‘watch and wait’ and who have check-ups only 1 to 3 times annually. A significant proportion of these patients might never need any treatment. So these doctors, even after a decade, get little experience in treating CLL patients.
If there are no CLL specialists near you, it’s definitely worthwhile to travel to another area if you can, or at least to seek a second opinion from a specialist. Second opinions might be possible by phone or Skype.
Beware doctors who advertise that they have an interest in CLL. ‘Having an interest’ and being a ‘specialist’ are entirely different things! I didn’t realise this until I found Health Unlocked.
I've been in the "wait and see" mode for my CLL for 5+ years. My WBC has only been between 18 - 22 during that time, but the oncologists I saw @ 1st recommended I get a bone marrow biopsy to see the extent of my situation. I have no other "major" symptoms except my red count has also been low (as low as 60 when I got ill in 2017, but typically around 90 - 100). You might want to set up an account @ one of the Mayo Clinics & have them do a total analysis of your situation. It's always good to have a local "specialist" or certainly an oncologist to assist you with your decisions, but I'm always in favor of NOT starting any major treatments (i.e. chemo, or even the newer drug treatments) UNTIL my body tells me it's time - and believe me, your body will tell you! Just monitor your situation at least with blood draws every quarter. Do the bone marrow analysis & see an oncologist along with your regular Dr. You'll be fine!!
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