Is CLL specialist the best care from the start?

[Gransan4]

I am going to Dana Farber in Boston for a second opionion from a highly rated CLL Dr.I'm only stage 0 at this point.Will I get better care going forward if I just stay with this specialist as opposed to my local hemalologist? I'm only an hour from Boston so it wouldn't be that big of a deal to go when needed.Thoughts!? Thank you

[Cllcanada Top Poster CURE Hero]

I think it depends on the patient age, on the stage, on the doctor and on the patient's ability to travel, insurance and so on ...

High risk CLL patients would be advised to see a specialist CLL doctor earlier, than someone very indolent disease that might be 15 years from treatment. Chances are the specialist will have retired anyways... it happens a lot.

Specialists are stretched for time and a typical boring patient and a, 'how are you feeling, a poke and prod and see you in 6 months', is not the best use of their time, in my view. Second opinions with a specialist prior to treatment is a good idea, certainly, for all that can manage it.

High risk patients, with comorbidities and poor genetic markers, do benefit from a specialist's knowledge more so throughout the watch and wait, they need closer assessment and streaming perhaps for a clinical trial.

During my 20 year history with CLL, I was under the care of a GP, for semi annual checks for 12 years, then moved on to a oncologist/hematologist and finally a CLL specialist after the Richter's transformation of 2012, and now I have two renown CLL specialist, as well as a few more on speed dial, who I'm fortunate to be able to contact, should I need too...should things go sideways again.

So its a process and access is different in different countries as well.

My primary local CLL specialist doctor was a fellow at Dana Farber, under Dr. Brown and Davids, so I can testifiy to the excellent care you will recieve there.

~chris

[Gransan4 in reply to Cllcanada]

Thank you for your reply.My Hematologist is the one sending me there.I do feel like I'm wasting her time at this point especially after your comments :/ I'll just ask her at my appointment in January what she thinks will be the best for me going foward.Thanks so much for your reply and I hope you are doing well.

[Cllcanada Top Poster CURE Hero in reply to Gransan4]

If your local hemaetologist is sending you then certainly I would go to DF for a consultation. It might be as a confirmation of your local doctor's diagnosis. CLL is a very rare cancer, and many doctors feel out of their depth.

There is a difference between a second opinion and constant care of a specialist, let me be perfectly clear on this.

~chris

[Gransan4 in reply to Cllcanada]

Thank you Chris

[cajunjeff]

I am not sure there is a right or wrong answer to this question. I am 4 hours from Houston but have gotten so comfortable with my doctor at md Anderson I take all my Cll related treatment there now. I had a local hematologist too I was seeing, but he left the area and thus far I have found no need to replace him.

I think a big danger with Cll is the lillnesses we are susceptible to because of an impaired immune system. I had been so healthy up until my diagnosis I did not have a true primary physician. Since my diagnosis I found a very bright, young internist to be my primary doctor for colds, flus and what have you. He is aware of my Cll and even studied up on it a bit for me. He is now my go to person locally and has online access to my md Anderson records. He doesn’t treat my Cll.

Since we are at higher risk for other cancers I have asked him to set me up with doctors in his network to see just to screen for other issues such as a dermatologist.

Being so close to your specialist, if you really like him or her, I would not think you need anyone else for your Cll. But that’s just me. I still might want a second opinion before treating.

There is a very cool study at the NIH in Bethesda about the natural history of Cll. If you enroll in that study you get to meet with some excellent specialists who could serve as your second opinion. I was not eligible for the study because I was too near treatment. But I did meet with the team there and stay in touch with one of the doctors there who was so very nice to me and took an interest in my case. Good luck to you. Jeff

[Gransan4 in reply to cajunjeff]

Thanks so much Jeff.I feel it's my life so I should get the best care possible but at the same time at stage 0 I almost feel like I'd be wasting her time.My appt.is in January so I'll ask her what she thinks is best for me.Thanks again for your reply!

[cajunjeff in reply to Gransan4]

I do not think you are wasting her time or yours. I think you are being proactive and smart. You are establishing a relationship with an expert.

When I saw my specialist at md anderson, he answered a lot of questions for me and set my next appointment a year out. I was to do quarterly labs and send then to him to be monitored. As it turns out, I only lasted two years on watch an wait. But I was not scrambling to get in to see a specialist when the time came to treat because my specialist was in place and knew all about my case.

[Gransan4 in reply to cajunjeff]

Thank you

[GMa27]

During W&W your local is fine. An hour is far. Everytime something comes up can be an inconvenience to get there and get appt in a hurry.

For example a node forms and you want oncologist to see it, measure it...you break out in rash/hives...so easy to get to local. An hour becomes a long drive when things come up.

Good to have second opinion and Dana Farber in your back pocket. If you need a trial treatment then you would go to Dana Farber. Friend on these sites goes to a center 45 min away. No trial. Appts 8:00...rush hour, had to go to local hospital, her doc is too far away to treat her.... You can always change if you prefer. I would use your local, if you feel they are on target with findings and plan. Use DF as back up till you really need for special treatment or another opinion.

[Gransan4 in reply to GMa27]

Very true!Thanks!

[TimHB]

In my opinion, you can't get enough second opinions or spend enough time with specialists. A CLL diagnosis is very complicated and each doctor can have a different interpretation of your stats. My hem-onc diagnosed my CLL and said I was Stage 0 and would go on watch&wait. But then he sent me to 3 specialists (Columbus, Boston & San Diego) and my diagnosis became Stage II, UNmutated and in need of urgent treatment. I got into a clinical trial at UCSD which is wonderful - no shortage of attention. After six months my numbers have all moved into the normal range and my symptoms are gone (replaced by a few nuisance side effects, but they're easier than my previous symptoms). I say GO FOR IT and NEVER feel like you're wasting a doctor's time.

[Gransan4 in reply to TimHB]

Thanks so much for the reply and I hope you continue to do well.Ughhh I have lots to think about! I know none of us ever expected this diagnosis but it's nice to have found this group to help answer my questions.

[Rose_fancier]

I was in a similar situation. The original Hemo/onc that I was assigned may have been knowledgeable but not very thorough in the initial exams and horribly lacking in communication skills and bedside manners. After the two initial visits, I self referred to a CLL Specialist in my state.

Upon meeting the Specialist, I immediately felt comfortable with and trusted him. After the Specialist confirmed my diagnosis of stage 0, 13q, mutated, indolent CLL, he gave me the option of staying with him, going back to the original hemo/onc or going to a different hemo/onc in my local area that the Specialist recommended. He assured me I could stay with him if I wanted.

Like you, I was torn between staying with the Specialist and trying the recommended local hemo/Onc. I felt like the specialist’s time could be better used to treat the high risk CLL patients, rather than monitoring me. In addition, travel to the Specialist’s office in winter meant traveling over snow covered mountain roads. After much thought, finally opted to see the recommended Hemo/onc.

I felt just as much at ease with him and recognized at the first meeting that he had the knowledge, communication, bedside skills that fit my expectations. The recommended hemo/onc has asssured me that he will confer with the Specialist if anything unusual comes up and when treatment time comes, so I feel that all my bases are covered at this point.

However, if The CLL type had been high risk or the meeting with recommended hemo/onc had turned out differently, I definitely would have stayed with the Specialist. For me, having that sense of trust and comfort, in addition to confidence in the doctor’s knowledge and skills, is essential. My advice, trust your instincts and do what is best for you.

[Gransan4 in reply to Rose_fancier]

Thank you so much

[Hoffy]

Dana farber is very good.

Just don’t do any trials involving FCR in my opinion.

Many people of done fine on FCR but if you have the ability to avoid it I think it’s good.

Cytotoxic chemotherapy is hard on one’s bone marrow in the short term and long term.

Combination targeted therapyis appearing to be very successful. Like Imbruvica plus Venetoclax.

Many people are clearing out there bone marrow after a little over a year on that combo.

Be well ,

Hoffy.

[Gransan4 in reply to Hoffy]

Thanks so much for the info.

[BeckyLUSA]

I saw a specialist for a second opinion and then stayed with him. He is 90 minutes away, but worth every minute of it. In my case, the insurance company worked better with the specialist than with my local hematologist. My insurance company would not approve me for IVIG even though my number was 450 and I had 6 sinus infections and mono within the past 12 months. The same insurance company approved the specialist’s request immediately.

Also, when I needed treatment, he was able to get me into a trial that he was administering at his location.

As far as getting information, appointments etc, I have no issues. I can e-mail my doc and he will answer the same day. I also have e-mail access to my nurses. Finally, a specialist is more aware of all the new stuff coming down the pike. Just my opinion, but it worked better for me.

BeckyL USA

[Gransan4 in reply to BeckyLUSA]

Thanks Becky.I would like to stay with the specialist.We'll see what she has to say when I go to the appt.Thanks again for your input!

[Jonquiljo]

If you’re only an hour from Boston then you really aren’t travelling far. I don’t quite agree that specialists should be reserved for advanced patients only. I went to a local oncologist and found that they were bored with me - or certainly appeared to be. She obviously had patients with other cancers to deal with who were far worse off. Her indifference was worse than going to a walk-in clinic. So I’m going back to the CLL specialist supposedly for quarterly monitoring.

Can we really identify an “indolent” CLL patient from a few tests and genetics? Probably some, but likely there are some who initially appear indolent and turn out not to be. So ignoring a patient with “indolent CLL” is awfully irresponsible. If the CLL specialist is really a specialist they will understand that too.

So this leaves us with PCP’s. If we find one who has read a medical journal since med. school, perhaps they know enough to treat you - for a while. Best IMO to have an occasional visit to a specialist to look at things that may be missed by others.

[Gransan4 in reply to Jonquiljo]

Thanks so much.The majority of the replies to my question agree that a specialist is best for any stage CLL.

[Sepsur]

My local guys were great but not specifically geared up to recognise all the twists and turns of this disease. My specialist is well versed in this mercurial and heterogeneous disease

[Pacificview]

Well, I will toss in my experience over 5 years.I had UTI symptoms which led me to a local walk in clinic. After 3 months of Antibiotics that did not work and a climbing PSA. I was told to go to a Urologist. A turp procedure and biopsy later. Uroligist said I have good news, no prostate cancer but you do have CLL/SLL. I said whats that? He said I have referred you to Oncology and I knew what that meant.

I show up at oncology and the Hemo/onco ran all the CLL tests...even a pet scan. She would palpatate nodes, spleen and was quite thorough. But, her specialty as it turned out was Breast Cancer. It made sense because she was supprised I had no symptoms or enlarged spleen or nodes that were palpable. Me not knowing anything about CLL/SLL began a journey to educate myself. After 1/2 year with Breast Cancer Doc. I decided to go to a specialist at Duke, a well respected one named Dr. Brander. I was stage 0 and still HCMBL and not CLL yet. All though the medical record always says Lymphoma/ Non Hodgekins lymphoma/CLL-SLL. Because in reality, the difference between MBL and CLL/SLL is just more or less cancerous B cells.

So for 2.5 years I went to the appointments at Duke.. an all day event. Plus they charge for parking which always irritated me abit.

So inbetween visits to Duke I would get my GP Doc to order a CBC w/diff so I would know where I was at before I ever stepped into Dr. Branders exam room. I do not like getting cold cocked Like I did when I was told at Urologists office.

Plus I have been self employed my whole adult life. Always been in charge and like thinking ahead and directing where I go and when.

So, 4 years in and with enough knowedge how how this disease rolls. I decided to go to a local Hemo/onco/ with a lot of lymphoma patients Doc. She has a handful of CLL patients along with all the other variety of lymphomas and other cancers.

I like her, she is smart, competent and easy to talk to. Not to leave out her whole team is quite thorough and likeable. They are a 20 minute drive with traffic. Have everything I need right there, including an infusion center. Infusion nurses are fantastic.

So back to my point. When I knew nothing, I wanted a Specialist in CLL/SLL. As I became knowledgeable about the disease and progression. I realized I did not need to spend a whole day going to a specialist. Who was goimg to reaffirm what I already knew. Indolent, numbers slowly rising, treatment not needed and see you next time.

I figured I could do that local with a smart on top of it Doc who was very familiar with treating CLL and other lymphomas.

I could not be more pleased. I have gained a lot of knowledge on the disease. I know my strong points, know my weak points. I also know how to research. So when I don't know something. I know how to find out fast.

This community has been a God send. For both support and real world info.

I say be honest with yourself and go where you feel most confident and comfortable. If it turns out who you pick is not the right one, go somewhere else.

All that said, if your a newbee with CLL and with who to go see. I would say its best to go right to a CLL specialist. You can supplement with testing at your GP. So maybe if your Specialist is quite a drive. You won't have to go there every 3 months when your still stage 0.

It worked for me, walk into a satelite hospital clinic. Got the blood drawn and in and out in 15 minutes. Test results showed up on the hospital MYCHART system later that day. I would go online and look at the numbers. I would then know right away whether I was stable or progressing. Gave me great peace of mind. Depending on what the blood numbers said. Dictated how often I went to go see Dr. Brander.

I always thought, if I am symptom free and indolent. I want to enjoy that time as lomg as possible. If I was concerned I might get a CBC W/diff every couple months when I felt like it. Or I had a suspicion that I wanted an answer to.

About the 3rd year of watch and wait I was going to Brander every 4 months.

Hope this helps.

[lexie in reply to Pacificview]

Was the UTI resolved?

[Pacificview in reply to lexie]

No, no pathogens found ever found. I was diagnosed with a large prostate...BPH.I started to spit prostate stones so I needed the TURP. Afterwards the biopsy from the cored away flesh revealed an infiltrated prostate with CLL cells.

I have been waiting 5 years to see if treatment reduces inflamation in the prostate. Like it does in the spleen, lymph nodes etc. We shall see?

One other member that had this mentioned all prostate symptoms dissapeared after treatment.