Recommendation for Lymphoma specialist (DC/MD/VA)

[Anonymous]

I'm newly navigating an advanced lymphoma diagnosis and was wondering if anyone has a recommendation for a good specialist in the field that is located within a couple hours of the DC area. I'd like to be treated at Hopkins or Georgetown... or perhaps UVA, which is near my hometown. I will be going to Dana Farber for a consult and second opinion, but Boston is too far for treatment, and Dana Farber is out of network for my insurance.

Thanks for any recommendations. I want to be able to trust that I've secured the best care in the area, as I am only 29 and have two very young children.

[Anonymous]

Hugs to you, OP. I think Hopkins would provide excellent care for you. I'm a physician. When I did my training there, the staff were well-versed in the latest treatment information and were very kind and compassionate. Wishing the best for you and your family.

[Anonymous]

Thanks, PP.

I did a little more research and am considering Dr. Cheson with Georgetown. Does anyone have any thoughts or experience with him?

[Anonymous]

I had lymphoma and went to Dr. Alex Spira at Virginia Cancer Specialists in Fairfax, VA two years ago. Incredibly intelligent, warm bedside manner and saved my life. Good luck to you, OP!

[Anonymous]

Call the NIH to get an opinion with Dr Kieron Dunleavey or Dr. Wyndham Wilson.

[Anonymous]

^^I should mention that it is the NIH in Bethesda MD. So it is local and world class treatment.

[Anonymous]

So sorry to hear this. I have some recommendations I will post in an hour or so when I get to my desk.

[Anonymous]

Ok, back! First of all, it would be helpful if you could share the lymphoma type, since there are so many. The recommendations I got when I had a relative facing a rare kind of non-Hodgkins lymphoma were:

- Dr. Cheson in Georgetown: a leading lymphoma doc. I got several strong recommendations for him.
- Dr. Ari Fishman in Silver Spring
- Dr. Sandra Ginsberg in DC
- Hopkins in general
- Sloan Kettering in general, and also Dr. Martin Tallman in particular
- Weill Cornell in NYC as an academic center at the top of the game on the particular type of lymphoma my relative had

We also got advice on how to select a specialist and treatment center.

- With lymphoma second opinions are VERY important, maybe even a 3rd opinion if it is very rare. I have had 2 relatives misdiagnosed.
- One good plan (especially since you have kids) is to get your second opinion or treatment plan at an academic center at the top of the field, then receive your treatment locally where you can have support and travel easily. This is what my relative did: his main docs are in a city 2 hours away, but he got his chemo and monitoring in his hometown. The chemo itself was standard so he did not need any special place to receive that. Then he will travel to the academic center to get the stem cell transplant and experimental part of his therapy (a vaccine made from his own cancer cells!) If you have a straight-forward type of lymphoma this may be less important.
- An ER doc who was himself treated for a rare lymphoma wrote: "I think it's a good idea to go to an academic center for a second opinion on therapy, but beyond that it's pretty hard to say one oncologist is better than another clinically. There is not a good rating system for that kind of thing. Having a doc that communicates well, makes you feel confident that they are listening and are willing to do the work to figure out what's best... that's more important. Often the "top doctors" are so busy that you are just another statistic, rather than a person. So, best to take the info and advice from the academic center back somewhere more peaceful."
- These links from the Lymphoma and Leukemia Society website might be helpful:
http://www.lls.org/#/resourcecenter/freeeducationmaterials/treatment/knowingtreatmentoptions
http://www.lls.org/#/resourcecenter/freeeducationmaterials/treatment/choosingcancerspecialistcenter

With all this information, I think if I were every facing a lymphoma diagnosis, I would probably go with Dr. Cheson in Georgetown, after getting a second opinion from Hopkins or Sloan Kettering. If the lymphoma type were really rare, I would also go to whatever academic center at the forefront of treating it.

GOOD LUCK! Lymphoma can be beatable, and they are developing new treatments every day.

[Anonymous]

Anonymous wrote:Thanks, PP.

I did a little more research and am considering Dr. Cheson with Georgetown. Does anyone have any thoughts or experience with him?

See above! Many people think he is terrific clinically. He may not be the fuzziest in manner but that is not the most important factor.