Choice of doctors

[JerrysGirl3]

Ok so I've got a real dilemma. I'm on W&W. I have two top CLL specialists in two sister hospitals. The first doc I saw , since 2016, works at NY Presbyterian Cornell Weill with Dr Furman, who basically "developed" the new BTK inhibitors which I am supposed to be starting on. Problem is this doc doesn't get back to me on portal. And he refuses to work with another CLL specialist. (I live a long way from both hospitals) I can also take a long bus ride back and forth to Cornell. The second doctor I love personally. Always gets back to me. Once within 10 minutes at 7:30 am!! Because she acknowledges the very long trip in she gave me the name of a CLL specialist that I can drive to (1-1/2 - 2-1/2 hrs by car) and she would work with them ! And then if anything serious comes up or at least 2-3x/yr I would have to be driven in by car by husband. I asked her if she had the same access to the Zanubrutinib as Cornell Weill and she said yes but it has not been fully approved yet (which I had heard) but approval was expected before end of year, even tho some people were already on it.

My problem ? I'm afraid to leave Cornell Weill because I believe they were the developer of Zanubrutinib and know more about it and insurance company might be more prone to them, but I get better communication from other doctor who is also giving me the great option of seeing a closer top CLL specialist who she will work with.

If I leave the Cornell Weill doc, I know he will not take me back again as a patient.

So who do I choose? My husband is not up anymore for the long drive in to the second hospital and there is no one else. He would do it if necessary but it would be a "long" drive. I don't want to use accessibility as a reason to choose, because at Columbia Presbyterian I also have ALL expenses covered thru insurance (prob except meds). Also would I have a better chance of better coverage with meds by the hospital that developed the drug?

It would have been fine if I lived closer to the city but it's a 12 hr day to either hospital.

[ornstin]

I think perhaps the accessibility issue may be more important here. You cannot be entirely sure, given what you say, that you or your husband will in future well or fit enough to drive so a hospital that is accessible by bus ie Cornell Weill does (as it seems to me ) have a major advantage even if the issue of accessibility may not seem important now. Furthermore you are already a patient there and they seem to be offering you a drug that you are happy with.

So maybe stay with Cornell Weill and think about as asking to see a different doctor there?

[JerrysGirl3 in reply to ornstin]

I never thought about that. He's already driving me after having had knee surgery and is not the most healthy man... thank you.

[Ladylin151]

First, if you are not currently planning treatment choose the doc you like that is more convenient unless your insurance is significantly different for visits. Treatments are changing fast enough and coverage for drugs also changes often so that you cannot predict what your particular course will be and might as well get comfortable. If you are in line for treatment soon, find out actual numbers from your medical AND prescription plan before making your decision. There is not likely a difference in coverage due to any expertise, but more likely due to business ties between organizations. That would sway your decision. And lastly, again, if no monetary advantage, choose the one you are happy with. Your ease and comfort will affect you just as much and probably more than any previous research at any institution. Get the real scoop on your insurance.

[JerrysGirl3 in reply to Ladylin151]

Thank you that was very informational regarding insurance!

[JerrysGirl3 in reply to JerrysGirl3]

I spoke to insurance yesterday and they told me that "oral treatment drugs for cancer are covered 100%" but someone else mentioned there might be tiers as well. I have that with my thyroid Meds. And sometimes if there is no generic available they cover it 100% (these are my words, the last sentence ). I've seen that happen as well, especially if the drug is new.

[JerrysGirl3 in reply to Ladylin151]

Actually I was supposed to be planning treatment because of nodal placement in my chest and throat but doc told me to message him after I did my research on meds and I did portal him and never received an answer. And I know the post was seen. Right now I'm having massive problem breathing so don't know if my W&W has gone crazy and it's gotten really big (even tho just had Ct scan which showed it bigger than last time but not immense) but they are slightly larger with every scan. Or. It could be environmental allergies. I just know that once I start meds there's no going back........

[HopeME]

Hi Jersey Girl:

I’d speak with someone at Cornell and explain that your existing doctor’s unwillingness to work with your local oncologist is a burden for you given Cornell’s distance from your home. This is a very common arrangement for patients who live far away from teaching hospitals where CLL specialists are commonly located so you aren’t asking for anything unusual. Use this as a reason to seek a change of doctors at Cornell. If push comes to shove go further and state that you don’t feel your existing doctor is a good fit for you. My guess is you won’t be the first patient to ask for a change away from this doctor. It is very important you have a positive relationship with your CLL doctor.

Good Luck,

Mark

[JerrysGirl3 in reply to HopeME]

(Jerry's Girl lol) Unfortunately they are both in top Ny hospitals - Weill Cornell and Columbia. I think it's just competition between hospitals. But there have been so many great answers posted here as to how to go forward...I think I will start with ins company. However. The Columbia doc is willing to work with a top cll doc closer to me that I can drive to and the Cornell doc is not willing to even work with Columbia doc. I'm hoping that the meds would be the same price at both but I bet Cornell gets better prices. I don't even know the dose or what !!!!! I have to decide first who I really really want to use because Cornell doc wants to be the only one. 🙁. And Columbia doc who will hook me up with local doc I need to be driven to and the only person is my husband and as stated here, what if he was unable to drive, which in the future is a definite possibility.

[SofiaDeo in reply to JerrysGirl3]

Where a drug is physically developed & tested, has nothing to do with how the drug company prices the medication. Or the amount your insurance might reimburse. That contract is between the drug company and the insurance company. Which doctor or hospital you use won't affect your "drug price." The hospital won't be paying for the drug, you will. This is assuming zanubrutinib is approved. As far as investigational availability, one generally has to be in a study and whoever is a study site obtains the drug from the drug company. The hospital system doesn't pay for investigational agents. That being said, I know zanubrutinib has been available as "compassionate use" and I do not know how any fees are being done. Since you are starting treatment, if you want zanubrutinib I am thinking you need to be in a study. So whoever is a part of the study might narrow your choice. If both are zanubrutinib study sites, then it comes down to other factors.

[JerrysGirl3 in reply to SofiaDeo]

I was told by one doctor and also read it on one of the links here that it's expected to be approved in October. I also spoke to my insurance company and they said if the medicine is (sorry drew a blank on the word they used ) my meds are covered 100%😳😳😳😁😁

[SofiaDeo in reply to JerrysGirl3]

Did they say "on formulary" by any chance? Because sometimes brand new drugs are not approved "on formulary", sometimes one has to wait for a generic to come out. Other places have Tiers, and there is a copay or percentage paid, according to what Tier the drug is put into. These tiers are decided by the insurance company.

[JerrysGirl3 in reply to SofiaDeo]

I can't remember (stroke and recent head injury) but I feel it was more a way of prescribing, if that makes any sense. ? She did see the drug. Knew it by its name, Brukinsa, and said the Zanubrutinib was the generic name but there are no generics yet??? Does that make sense? Currently I take Tirosint ever day for thyroid replacement. That has no generic either and I pay $120 for a 3 month supply. I'm looking at my scribbled notes and see I wrote : oral oncology drugs are covered 100%

[SofiaDeo in reply to JerrysGirl3]

When drugs are approved, there is a designated chemical/ "generic name", in addition to the brand name a company uses. A company gets a patent on the brand name, and no other manufacturers can make it. When a drug patent expires, other companies can legally manufacture the drug and apply for approval to market the drug by its generic name. Since safety and efficacy studies are already done for the chemical, the generic drug approval costs less and thus can be sold for less. Every company wanting to make a generic drug has to apply for an approval. The generic making company just has to show that their product has similar absorption rates, and blood concentration rates. So while every drug has a "generic name", if it's still under patent, there will be no "generics available to purchase." And we write this difference, by capitalizing a brand name (Brukinsa) and leaving generic names (zanubrutinib) in lower case. It's confusing sometimes because when someone starts a sentence, we always capitalize the beginning of sentences. Sentences starting with "zanubrutinib" would then be using a capital Z, otherwise it's ""zanubrutinib" all lower case.

[Ironj]

I had a decision to make as well. I’m not getting any treatment I’m on watch and monitor at this time, but my first specialist at Sloan Kettering was kinda harsh. And it took me about five hours each way plus my time there so about 12 hours. I made a Choice to see another very good specialist that was only an hour and a half away but this doctor is much more caring with better bedside manners. The bottom line go with who you feel better working with. It’s my opinion the meds will be available at either place or a comparable one.

Listen to your gut feeling I always say.

Best wishes

John

[JerrysGirl3 in reply to Ironj]

Are you on W&W or on meds yet ? I don't know what I will be like on meds as I have very bad reactions to meds so if I can't find someone to drive me I might as well not even start them. I'm having such a difficult time now because of big node in my chest in my airways. Between that and allergies I can barely breathe. Although, that gives more credence to using the doctor closer to me and only see doc in city once or twice a year.

[JerrysGirl3 in reply to Ironj]

Sorry. I saw you mentioned you were in W&W! I found Sloan doctors not that great, considering my insurance considers them a "Center of excellence ". They are rushed and not that caring. Too many people getting cancer. 🙁

[HopeME in reply to JerrysGirl3]

There are good doctors and bad doctors at each institution. Find someone you trust while your health is stable. I’d think drug pricing is more dependent upon the insurance you have not which hospital is ordering it but I could be incorrect on that point.

Good Luck,

Mark

[JerrysGirl3 in reply to HopeME]

Found out of the Med is (can't remember the word they used ) it's covered 100% 😳😳😁

[Ironj in reply to JerrysGirl3]

I agree. I was rushed as well maybe 10 min spent with me after driving 5 hours each way.

[Smakwater]

Answer is in the question -

Do you want the best doctor, or do you want the doctor that is best for you?

JM

[JerrysGirl3 in reply to Smakwater]

Yes. That is a very good question. I went to the "best " doctor for my thyroid cancer surgery and I've been screwed up since then 2012 but that's because he didn't do it. One of his residents (I call them ducklings) did it. So actually yes. I want the doctor that is best for me. Thank you.

[Smakwater in reply to JerrysGirl3]

I'm with you on this one.

[JerrysGirl3 in reply to Smakwater]

Just wanted you to know I used these words in my final determination so thank you. They made complete sense.

[Smakwater in reply to JerrysGirl3]

You had the answer all along, it was nice of you to share your best move with me though!

Way to Go! That is self advocating!

Being respectful while at the same time being assertive about the right choice.

[Ironj in reply to Smakwater]

I would expect both the best Dr that is best for my condition as well as the best Dr for me emotionally as well , they should go hand and hand. My issue with my past Dr were a few one was rushing me out like I was being seen for the common cold. I found a Dr that gives me both the best Doctor for me and one of the best Drs that treat Cll.

John

[Smakwater in reply to Ironj]

Yes, One would hope that brilliance would also mean capable, yet, I have experienced otherwise.Often times in any field, it is the those who apply themselves the most that produces the better outcome.

[SusanBo]

Go with whoever is accessible when needed - to have a doctor who responds to you in your time of need is so very important. The Patient Portal is such a useful thing - it provides access to your physician without going through the hoops often created by huge hospital facilities - this can be enormously frustrating when you are truly in need. Think about hospitalization should the time come - what is easiest for you to get to. Two CLL specialists in two sister hospitals are two people who will definitely communicate with each other should the need arise. Can't imagine that one would have information that the other wouldn't. Information regarding the development of these drugs is available to both of them - this you can be sure of. No decent physician would ever withhold information regarding a drug that is being utilized and especially not to a colleague within the same umbrella. Both of these physicians are excellent choices - choose who you feel comfortable with - this is a long journey and the relationship grows over time or at least it should.

[JerrysGirl3 in reply to SusanBo]

Patient portals aren't always responded to either..and I think that Cornell would not cooperate with Columbia. I think I'm seeing my answer in all my responses. Weird but good. Now I have to accept the choice without fear which has been difficult since suffering PTSD from a procedure in 2015 and a stroke the same year. My fears over choosing the right doctor is very strong. But like I said. I see what I'm writing and I hear myself when I'm writing I just have to learn to listen to myself because I've made such bad choices in the past.