Im new here so I have tons of questions

[kollock93]

Oncologist or Specialist? WHATS THE DIFFERENCE? Cause im working and my fatigue is getting more and more harder to deal with. I don't want to go into the ER I have a doc appt coming soon..why do I feel so crazy and insecure at times? This is getting hard. I take inbruvica. 1yr in.

[Newdawn Administrator]

What sort or results do you have from a year’s use of Ibrutinib? A haematologist, especially one specialising in CLL is more focussed on this condition than an oncologist who may deal primarily with solid cancers.

There are also haematology-oncologists who are cancer doctors specialising in blood cancers.

I see you are in the USA? What genetic profile do you have from the FISH test? Why did you need to start treatment so early at 45?

I’m wondering if you’ve discussed this with your doctor previously and what his view is on the success of your ongoing treatment.

Incidentally it’s best to lock these more personal posts to the community to protect your details and those of the people who respond.

Regards,

Newdawn

[HopeME]

An oncologist is a generalist who treats solid cancers. A hematologist is a doctor who treats blood cancers. A specialist is a hematologist who deals with only CLL/SLL or perhaps a couple other blood cancers. It is all about specialization. CLL/SLL is highly complex so it needs to be treated by a specialists for best outcomes. As an analogy, you wouldn’t want a divorce attorney preparing your estate documents. The more specialized a practitioner is the better he/she can handle a complex case. I hope that helps.

[cajunjeff]

My take might be a bit different than the others on this. A general oncologist is a doctor who treats cancer. In smaller towns in particular, a general oncologist may treat all sorts of cancers, including solid and blood cancers.

A general hematologist is a doctor who treats all diseases of the blood, including blood cancers. There are many types of leukemias other than Cll.

Some people on here will write they are seeing a specialist because they are seeing an oncologist or hematologist who sees a lot of Cll patients in their practice.

But when I think of a true Cll specialist, it’s a hematologist or oncologist whose practice focuses on Cll and sees mostly, or only, Cll patients. Cll specialists tend to be in bigger cities at major cancer centers. More often than not they are involved with Cll clinical trials in some form or fashion, write papers on Cll and give Cll seminars or lectures.

Usually a Cll specialist is a hematologist by training, but an oncologist who chooses to specialize in Cll can also be a cll specialist.

Why is seeing a Cll specialist so important? It’s because the landscape on Cll treatment and other cancer treatments changes so rapidly, only a specialist can keep up and be current on cutting edge treatment. A treatment a doctor learned in medical school last year for Cll might already be outdated today. I hope that helps.

[Newdawn Administrator in reply to cajunjeff]

Couldn’t disagree with that explanation Jeff 😊

Newdawn

[Peggy4 in reply to cajunjeff]

Great explanation Jeff. This is the reason I go to a big research hospital. I feel that if and when I need treatment I am already in the exact right place. Also I have a specialist nurse who on the (very) odd occasion I have a question then I can ring or mail her. My previous haematologist was lovely and caring but oh the difference when I saw a specialist. It makes me feel better. In the early stages at least I feel that CLL is harder on the mind than the body, just my opinion of course.

Peggy 😀

[HopeME in reply to cajunjeff]

Good points Jeff. The only question I have with your explanation is in the first line of paragraph four. Is it possible for an oncologist to be a CLL specialist? I thought you needed to specialize in hematology before becoming a CLL Specialist.

[cajunjeff in reply to HopeME]

To my understanding there is no official certification that recognizes anyone as a Cll specialist. There are no boards or tests one would take to be designated a Cll specialist.

Hematologists and oncologists treat Cll. Many have degrees in both hematology and oncology. There are many blood diseases a hematologist might treat that have nothing to do with cancer, so some hematologists might not see any cancer patients at all and focus on other disease.ps.

There is no official description of a Cll specialist either. It’s really just a hematologist or oncologist who has decided to focus their practice on treating Cll.

Someone who, for instance, sees 20 Cll patients out of 200 patients a year with other cancers might still consider themself a Cll specialist and since there is no specific criteria to be a specialist might be considered one. I personally think of a Cll specialist as being a doctor who devotes the majority of their practice to Cll. There certainly are very qualified Cll specialists who treat other blood cancers too.

I suspect there are Cll specialists who do not have a degree in oncology or hematology. But to your point, most Cll specialists are probably hematologists.

[HopeME in reply to cajunjeff]

Jeff: Good clarifying points. The bottom line is this is a complex disease with rapidly changing treatment protocols. My advice is to seek out the most experienced doctor available. I was initially treated by an oncologist who acted like he knew what he was talking about but had very little knowledge of the disease. His sidekick hematologist at one point told me my cancer could be cured. I kid you not. My wife was in Asia at the time where it was 2:00 AM so I sent her a text with the good news. I still have that text. It was like I was being treated by the keystone cops. Looking back there were so many signs that these guys didn’t know what they were talking about but I let them slide by as I was in a state of shock and I assumed a 70-year old oncologist had a handle of things. Big, big mistake. I know not everyone out there can get access to the research hospitals in major cities but if there is any way you can please try. It is well worth the effort, time and cost.

[Family2017 in reply to cajunjeff]

Great answer to question we all ask ourselves. THANKS

[lankisterguy Volunteer]

Hi kollock,

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Several great answers above, I would add one further suggestion - '

take a look at this idea from the CLL Society:

cllsociety.org/toolbox/buil...

cllsociety.org/wp-content/u...

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Some CLL patients that live a long travel distance from their CLL expert only see the expert once per year and when treatment decisions need thorough discussion. The remainder of the time they visit a local diagnostician for routine blood tests and exams, including dealing with the infections and side effects like fatigue that plague CLL patients.

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You also might consider getting a video 2nd opinion using this:

cllsociety.org/cll-society-...

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Len

[HopeME in reply to lankisterguy]

Hi Len: You offer excellent advice. Thank you. The folks at the CLL Society are doing their best to level the playing field for so many. Their efforts are tremendous and should be applauded!

Best,

Mark

[Hoffy in reply to lankisterguy]

Great site.

[LovecuresCLL]

In my opinion, it is as much about WHERE you go in the States as WHO you go to. We visited four large centers before we opted to go with MD Anderson Cancer Center in Houston Texas. Their “leukemia” department has dozens of specialists and approximately a half dozen who see mostly CLL patients. If you go to a large center, there are pluses and minuses. But the number of options expand, the larger the center, especially if you have an unusually aggressive variant of CLL, like I did. The best thing to do is to have a great specialist who knows how to risk stratify you using all the laboratory results to get you off on the “right foot” while you are treatment naïve.

But I am grateful to the CLL specialists at MDA. My doctor is Dr. Weirda and he has seen ALOT of patients with CLL with my intermediate to high risk mutation.

If you can go to a big center, you are better off, in my opinion. There is just too much happening in this disease right now for the local small town hematologist-oncologist to keep up.