[kjpoppit]

Doctor referral, I'm confused.

by kjpoppit on Tue Oct 01, 2013 2:36 am

I asked my doctor for a referral to get a second opinion. She recommended a Dr. Pagel in Seattle Washington. I am confused though because my research on him says he is a specialist in leukemia. I know the cancers are similar in some respects but wouldn't I want a specialist in myeloma? I am waiting to hear from his office to schedule an appointment. I would be traveling from Alaska and wonder if the doctor would just use all the tests which have already been done and just do a phone consult? Or does the doctor do new tests and need to see me in person. My mother recommends I not settle for a phone consult. Thoughts on this everyone? (I am so thankful to have found this website. )

[tara51494]

Re: Doctor referral, I'm confused.

by tara51494 on Tue Oct 01, 2013 11:48 am

I would suggest you find a specialist in multiple myeloma. Talk to the office to clarify but I don't see why you would travel so far to see a doctor who doesn't specialize in multiple myeloma. Sometimes they will review your previous tests, other times they will want to run their own. It depends on the doctor, how recent your test are, and whether the specialists wants certain tests that haven't been done yet. They will always take blood, lots and lots of blood. It's difficult when you live far from a specialist but I would imagine there must be one somewhere in the Seattle area. Once you find one, work it out with a local oncologist so that they work together and you wont have to travel so often - the specialist would oversee treatment but you would see the local doctor more frequently with occasional visits to the specialist. I wish you the best of luck. I'm a nineteen year survivor but I remember how scary and overwhelming it all is in the beginning. This disease is very manageable - there is a lot of hope.

[Nancy Shamanna]

Re: Doctor referral, I'm confused.

by Nancy Shamanna on Tue Oct 01, 2013 1:11 pm

One of the doctors who has answered patients' questions on this site is Dr. Edward Libby, of the Seattle Cancer Care Alliance. I have not met him personally, but he is a myeloma specialist in Seattle. Hope that helps!

[kjpoppit]

Re: Doctor referral, I'm confused.

by kjpoppit on Tue Oct 01, 2013 2:53 pm

Hi Nancy, I noticed that last night and think I will contact his office. I hate the feeling of possibly upsetting my current doctor. Isn't that silly. After all it is my life we are talking about and I have the t (4:14) chromosome thing going on. My current doctor doesn't think its too much of an issue and considers me standard risk but that's not what I read. So, I do believe a second opinion is called for if only to make me feel better about the information my current doctor is giving.

[kdboca]

Re: Doctor referral, I'm confused.

by kdboca on Tue Oct 01, 2013 4:01 pm

Hope your current MD is at least a hema/onc. My PCP referred me to a local hema/onc but that guy was a train wreck. He did refer me to Moffitt in Tampa to an multiple myeloma specialist (3 hour drive each way). I did a 2nd opinion at Dana Farber in Boston. They all used the same BMB info. I got copies of bone scan and other tests and carried them with me. No need for any additional tests. I emailed copies to CTCA and they came back and said there was nothing different they would do. I'm IgG Kappa 10% SMM no symptoms and been followed for 2.5 yrs every 4 mo. Things like abnormal FISH and genomics may not be meaningful to a physician who does not spend all of his/her time with myeloma patients. Just tell your current MD you opted to get a 2nd opinion from a multiple myeloma specialist. Don't worry about hurt feelings. Wishing you well.

[kjpoppit]

Re: Doctor referral, I'm confused.

by kjpoppit on Wed Oct 02, 2013 1:55 pm

Turns out my doctor gave me the wrong name. I am happy to hear this. I now have to be patient and wait a few days to hear from Dr.Bensingers office. I am not good at waiting. I want to get moving on this but I guess better to make sure my initial treatment is the best way.

[Wayne K]

Re: Doctor referral, I'm confused.

by Wayne K on Wed Oct 02, 2013 2:29 pm

Kim I believe anxiety goes with the territory. The most important thing to remember is that history is not a good measure of success with multiple myeloma. The treatments and successes are evolving so fast that the future is the important measure.

[PBD]

Re: Doctor referral, I'm confused.

by PBD on Thu Oct 03, 2013 1:13 pm

The Hutchinson Cancer center in Seattle is one of the top Myeloma center in the country.
I can't beleive you couldn't get a consult there.

[kjpoppit]

Re: Doctor referral, I'm confused.

by kjpoppit on Thu Oct 03, 2013 2:33 pm

[quote="PBD"]The Hutchinson Cancer center in Seattle is one of the top Myeloma center in the country.
I can't beleive you couldn't get a consult there.[/quote]

@PBD, the good news is Dr. Bensinger is affiliated with the Fred Hutchinson Cancer Center. By going to Seattle I get 3 facilities working together. The SCCA, Fred Hutchinson, and the University of Washington. (would have been nice if I hadn't been misinformed about the referral in the first place.)

Wayne is correct there is a bit of anxiety going on. I am not in control of this. I have to rely on others which is hard for me. Waiting is hard. I will be better as soon as I can know how we are going to attack this.

[kjpoppit]

Re: Doctor referral, I'm confused.

by kjpoppit on Tue Oct 15, 2013 5:01 am

November 13. I finally have an appointment with a specialist. Yet, as usual I am still confused. The person scheduling the appointment said it's only a consult. There are no other tests planned or needed. If it's just a consult then why can't it be by phone? I will be flying from Alaska for a half hour appointment. She said he doesn't do phone consults. Sigh. . . .