Switching CLL Docs?

[Jmiah717]

I am having a bit of an issue trying to decide what to do about my CLL Specialist. I have been going to see Dr. Mato at Sloan Kettering for at least the last few years and before that was just seeing a general Hem/Onc at Hershey Medical Center in Hershey, Pennsylvania, US. The issue I'm having is mostly distance. I work and to go see Dr. Mato it's at least a day off work. Then they often want testing and other procedures to be done there which ends up in more time missed. I could potentially stop working but that would likely mean being on state insurance which does not cover out-of-state care.

I can get care through the VA but don't want to get my oncology care there. I can get them to pay, but again, they will likely only fund something in state or a little closer to my location (maybe Maryland). I've looked at some of the other options and they are a bit limited.

Perhaps I could see someone in Philadelphia or Johns Hopkins in Baltimore but none of them seem to have the same level of expertise as Dr. Mato. the other issue is they often schedule me with the nurse practitioner. Traveling 3 hours one way and taking a day off work to see the NP is frankly, a waste of time. I could see my local oncologist and I believe would be getting better care.

The only advantage is Dr. Mato can easily see the visit/test results, etc. So, I'm torn and not sure what to do. I do trust him and value his expertise and his involvement in the latest research but I'm not sure the hardship of travel, time off, etc has been worth it to this point. I've been on this journey a long time now (14+ years). Any thoughts about various places in Pennsylvania, the Mid-Atlantic region, or just thoughts are welcomed. Stay well, friends.

Edited to add: I'm not under treatment yet but I believe I'm creeping in that direction within the next year or so, but who is to say. My WBC has been creeping up to new highs pretty consistently. Other values are still good though, which is why I haven't been treated yet.

[HopeME]

Hi

Is it possible to have some of your periodic blood tests at a local hospital and an annual meeting with Dr Mato? Perhaps find an oncologist locally who is willing to provide some of the routine care as well as collaborate with Dr Mato on bigger decisions. He is an excellent doctor and I’d be reluctant to leave him given his reputation and your comfort with him. None of the routine appointments are all that important until your CLL starts moving and then they are very important. How often are you seen by Dr Mato’s office?

Best

Mark

[lankisterguy Volunteer]

Hi Jmiah717,

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I agree with Mark HopeME - pick a hematologist or GP close to home, preferably one that is willing to work closely with Dr. Mato ( it could even be a VA doc ). -

The local doc would be used to arrange blood tests, diagnose odd symptoms, infections etc. and refer you to specialists if other specialties are needed. The blood test results can be directed to both the local doc and Dr. Mato's electronic records system, and then you can see/view Dr. Mato by a Telehealth visit when major decisions like treatment are imminent.

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Most of our currently used targeted therapies could even be prescribed and administered by your local doc. (The ramp up for Venetoclax might be the exception- requiring a team that has history with that drug).

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Len (BTW- Lankisterguy refers to Lancaster PA my home town)

[Jmiah717 in reply to lankisterguy]

Great to meet a fellow Pennsyltuckian! Thanks for the info, be well!

[Kbcjones]

If you are looking for someone in Maryland, I see Dr. Ravin Garg at Maryland Oncology and Hematology in Annapolis. He also teaches at Hopkins, though I don’t think he practices there. He is very kind amd compassionate, takes as much time as you need during appointments and is happy if you have done your research and ask questions. He is very knowledgeable about CLL and used to work at MD Anderson. I have not had treatment yet but we always talk about what my choices would be if and when it becomes necessary and what is new in research. I have been very happy with him and feel very secure in his care.Kathy

[Eagles1]

I was using Dr. Davids in Boston. We recently moved to Philly. Dr. Davids referred me to Dr. Schuster at Penn.

[Jmiah717]

I appreciate everyone's replies. I have a lot to digest. I have tried the two oncologists thing with my doc at Hershey and with Sloan checking in but they are very reluctant to do video and very reluctant to let any other place do testing, even lab work. So, while my local oncologist would be willing to play ball and I think Dr. Mato is willing to arrange something like that, in practice, it has not worked very well at all. and it has led me to go sometimes up to a year or more between oncologist visits. Now, I get bloodwork done regularly enough just from random illnesses to know that my counts are good. And I have had *some* video apts enough to know that Dr. Mato is not ready to treat me yet. I'm just hoping for a bit of a closer option that is just as competent. I may be asking for too much but the time off for me and even my father who takes me to apts sometimes, has just become a lot. I'm not sure if I'm even making a lot of sense at this point. I appreciate all of the replies and I will take some time to look at them and consider my next steps. I will probably look to schedule an apt with Dr. Mato in the New Year sometime, if not sooner. If that isn't possible schedule-wise, I'll see my local guy just to make sure the counts are good and nothing crazy is going on.

[lankisterguy Volunteer]

Hi Jmiah717,-

I understand your problems with using remote Tele health systems. My drive to see Dr. Furman at Weill Cornell NY Presbyterian is nominally 1 hour, and when I use their in person blood draw, labs and a personal visit it is very comfortable. BUT from the time I leave home until I am back home, I have blown the middle out of one day.

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My preference is that if I only have one appointment, I do them by Tele health ( I met my NY Presbyterian urologist yesterday by Zoom for the follow up to prostate surgery- it took 10 minutes out of my day). Yes some things take more effort and not every doctor is really enthusiastic, but I can be insistent when I must.

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When I must go to the hospital, I stack 3 or more appointments in one day and see Hematology, Dermatology and one other specialty (Ophthalmology, Urology, Gastro or Cardio) in one trip, about every 6 months.

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Getting my blood draw at Labcorp and dealing with the test reporting problems involved sometimes takes an extra hour but it is not most of a day lost.

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Len

[Jmiah717 in reply to lankisterguy]

Oh, I have no issues with doing all of my apts via telehealth. I'd prefer it for many reasons. It's Sloan Kettering who prefers not to do it. They will *sometimes* do it if I push, but they prefer everything be done there.

[Big_Dee]

Hello Jmiah717

It is a shame that you can not get blood testing done locally in concert with your CLL Specialist. I do the same but in actuality my CLL Specialist really is not doing anything for me while I am in remission. I only stay in touch with my Specialist due to very aggressive CLL and if I waited a year between appointments it would be all over but the shouting. When time to start treatment, you will surly need a CLL Specialist to guide you along. Blessings.

[Jmiah717 in reply to Big_Dee]

I agree and felt like it would be easy enough to do what you're suggesting. It's just that in practice, that hasn't been what happens. And then when they schedule me follow up apts at Sloan, they just put them in the system for me without calling and it's 9 times out of 10 with the nurse practitioner, despite me telling them many times that I'm not driving 6 hours and spending my whole day on the apt for Dr. Mato's NP. I'm doing so to see Dr. Mato. Nonetheless, it keeps happening. And then yesterday, I couldn't make the trip for logistical reasons so I called and asked if we could do telehealth and they refused...so here we are. I hate to lose Dr. Mato's expertise, but at this point, I'm not sure how much I'm actually getting that anyway.

[lankisterguy Volunteer]

Yes it is simpler for them, they find it convenient for their operations if you show up and wait for them to see you, and probably consider Tele health a PIA.

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NY Presbyterian is the same, but as long as the blood test results and lymph nodes are not changing significantly, I push hard enough that they "reluctantly" comply.

If I get too much push back, I let Dr. Furman know and I single out the specific department or staff member in the satisfaction surveys they send.

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I have found that if I push harder, and be more relentless when bureaucrats want to inconvenience me, eventually they figure out that I won't give up, and the least possible effort for them is to do it my way. I don't always win, but I can be very stubborn when my time and health are involved.

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Len

[lankisterguy Volunteer]

BTW- Dr. Mato does have office hours in Basking Ridge, NJ, a few days per month. 36 Mountainview Blvd, Basking Ridge, NJ 07920

It might be less hassle for you to drive there vs. the Upper East Side of Manhattan.

Len

[Jmiah717 in reply to lankisterguy]

Basking Ridge is where I go. Still works out to 3hrs often with traffic.