Choosing/Interviewing Radiologists

[Berta]

Hello -
I've been watch and wait for 5 years (Daniel Lee, MEEI) and recently was referred to and had my first meeting with a surgeon (Fred Barker, MGH) for consultation about treatment. At that appointment, he said I could either do surgery or radiotherapy, but it seemed pretty clear that the treatment best for me is radiation therapy. Is there any information on the ANA website specific to choosing a treatment center for radiation therapy and/or a radiation oncologist? Do you go directly to a radiation oncologist for a second opinion or do you go through the surgeon's office first? If you contact the radiation oncologist, how best to determine the best person to seek out? (I've been thinking of seeing if I could get a phone consult with Mayo.) I've seen the questions to ask radiologist and there are lots of videos with surgeons, but I haven't found anything specific to finding/choosing radiation professionals.

Thanks for any advice.

 

[v357139]

Hi Berta.  The ANA site does have a list of medical professionals.  See if you can find it.  Let me know if not, and I'll try to locate it for you.  Good idea for you to ask on this site.  Hopefully someone from up there will give you some local names.  I can tell you that Dr Kondziolka in NYC is well known for Gamma Knife.  He's at NYU.  Some doctors will let you send them your MRI and do a phone consult.  Did Dr Barker say he would do the radiosurgery, or did he give you a name?  For second or third opinions (I got like eight , you don't generally go through the first one you spoke to.

Again, let me know if you can't find the list on ANA and I'll try to locate it for you.  Let me know how it goes.  All the best.

[Berta]

Thank you, v357139! I'll look again at the list, I didn't think they were separated by professionals. When I met w/Dr. Barker he said I could go either surgery or radiation therapy. From our discussion, it sounded like radiotherapy would be best for me so I started asking about what type/what would that mean, etc. and he told me I'd have to talk to a radiation oncologist about options. (Honestly, I found him pretty cold and unhelpful.) He did refer me to Dr. Shih at MGH, but I can't get in to see her until June. I'm hoping to talk to some more specialists so that I feel more educated by the time I get to her.

[v357139]

Looks like Mass General is big on Proton Beam, which I don't know much about.  I know more about Gamma Knife and Cyberknife.  But this is one potential resource.

Proton Stereotactic Radiosurgery Center
Wang Ambulatory Care Center 745
15 Parkman Street
Boston, MA  02114
Phone: 617-726-3887

[v357139]

Here's another.  You could call them and ask which doctor is most experienced treating acoustic neuroma
Beth Israel Deaconess
Keith C. Field CyberKnife Center
330 Brookline Avenue
Boston, MA 02215

P 617-667-2345

[v357139]

Berta can you share some information on how big your tumor is?  And is it growing?  Some doctors (perhaps Barker?) will not operate when a tumor is below a certain size, but that is only certain doctors.  Other doctors will operate on smaller tumors.  If you think you might want regular surgery, you might want to also talk to another surgeon.  I would also ask Dr Lee if he can refer you to a radiosurgeon.  In this niche, you will find that different doctors will recommend different things.  Good to get several opinions.

[v357139]

One last one up there in Boston.  One way is to just call and ask for who the most experienced doctor practicing radiosurgery for acoustic neuroma.

https://www.tuftsmedicine.org/services-treatments/neurosurgery/gamma-knife-surgery#doctors

Also, there is probably an acoustic neuroma support group in Boston.  People in that group will most likely be able to refer you to specific doctors.  They are on the ANA site somewhere.  I'll see if I can find.

[v357139]

I don't see a support group in Boston,  I see support groups in Rhode Island, Lebanon NH, New Haven CT, and Albany NY.  Are you close to any of them?

[Berta]

Thank you for all your responses, I don't know how you find all that info! My tumor was diagnosed in 2019 at 3mmx4mm, my last MRI in January it was 7mm x 5.5 x 5 mm (TV x SI x AP). (I've noticed that people who post on this board have this information along the bottlom of their post, how do you get it there?). I'll be 66 in May. Dr. Barker did not think they'd do proton beam in my case, he didn't explain why and said that a radiation oncologist would be the best to explain.

I"m not too far from Rhode Island, so I'll check out their ANA group. I'm talking to someone from Brigham & Women's Hospital tomorrow...
Berta

[v357139]

Top left of your screen, where it says Home, Help, Search, Profile, My Messages, Members, Logout.  Go into Profile, Change Profile.  In there, its your Signature.  I think Phyllis will be a really great resource also.  Let me know if you need anything else.