Seeking Medical Experts When "Regular" Physican Isn't Consistent with Suggested Follow-up Testing

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7/30/2012 5:37pm
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Replies: 13

If my primary physician is not at all familiar with OM (choroidal melanoma) and his suggested treatment following initial diagnosis and subsequent plaque treatment consists of blood testing only, what could I do to obtain a list of options regarding experts for follow-up treatment?

Why would a primary physician handle your care going forward?  It should be handled by an Ocologist with experience with Ocular Melanoma, an internet search of your local area should provide someone, if not local, then several are available if you are able to travel to them.

Oh, geez, of course you're right---sorry, the diagnosis and dealings are still pretty fresh, and my logic isn't as clear as it normally is.  I'm feeling pretty isolated, and for the first time having to learn to be proactive in medical strategy and terminology.  Doctors so far have been pretty worthless--just a lot of shoulder-shrugging with facial expressions of "you're pretty screwed". 

Ditto on finding an oncologist for this.  GPs will be clueless.  I found my first oncologist by accident -- My local hospital has a melanoma center, but no ocular experience, but they ref'd me to another local oncology group with one doc who had an OM patient in the past.  Still, if I had to do it over again, I would have sought out a big gun like Sato in Philly from the get go.

Even if you're not near PA, you can still contact Sato's office for a potential recommnedation.  It's such a speciaized field that I bet they know of someone near you.

Contact:

Renee M. Zalinsky, RN, OCN
Senior Cancer Care Coordinator
Jefferson Kimmel Cancer Center Network
1015 Chestnut Street, Suite 622
Philadelphia, PA 19107
Direct 215-955-3158
Fax 215-955-1020
E-Mail: Renee.M.Zalinsky@jeffersonhospital.org

 

--Tom

Keep Rowing!

Tom,

Thank you so very much!  I read your response here about 20 minutes ago, immediately sent an email to Ms. Zalinsky, and she has already responded with very helpful information and suggestions!

Again, huge, HUGE thank you!

Julieanne

Tom,

Thank you so very much!  I read your response here about 20 minutes ago, immediately sent an email to Ms. Zalinsky, and she has already responded with very helpful information and suggestions!

Again, huge, HUGE thank you!

Julieanne

JUST AN UPDATE ON HOW HELPFUL FOLKS ON THIS FORUM ARE, & HOW BEING ASSERTIVE WORKS

Tom (the helpful one here in the forum) suggested I contact Renee in Dr. Sato's office.  Renee responded within 10 minutes (close to 7:00pm), was VERY helpful, and forwarded me Dr. Sato's follow-up imaging schedule to give to my local doc.  Local doc ordered the listed MRI and CT scans, both to be done this coming Monday.

This sounds smooth and easy, but it took many calls---insistent calls---to my local doc's office to order these tests, and to prioritize their scheduling.

I'm not ordinarily an assertive person about medical stuff, but am learning to be based upon the advice of folks here.

Good luck to each of you facing similar challenges and frustrations.

Julieanne

Yeah, assertiveness was (is) a learning curve for me too, but I've gotten into a sort of groove with it.  I'm never nasty, I just keep calling, and calling, and emailing, usually with a "gee whiz, I think something might be screwed up here, so how do we fix it" sorta tone.  If I do need to "fire" a doctor, which has only happened twice, I just cancel my next appointment and request the records.  Office receptionists don't really care either way.

On the other hand, while I was laid up at UPMC after IHP, it was really helpful to have my wife, the veteran public school teacher, as an advocate.  Teachers don't take an inch of crap from anyone, regardless of the initials after their names.

--Tom

Keep Rowing!

Hi Julianne,

There are many resources available, it's just difficult to find them.  I put together a resource list and if you're interested you can e-mail me at: eyecancerny@gmail.com. It's also listed as a file on the Ocular Melanoma Support Facebook page.  Not sure if you're on that site.

Best,

Anne Marie

Anne Marie,

I had not considered looking to FB for OM groups, and just did, and found the document....THANK YOU!  I can tell that took a lot of work to compile, and I can already tell will be very helpful.

Julieanne

Ok, so I obtrained the follow-up imaging schedule from Dr. Sato's office, which includes follow-up MRI, CT and blood tests.  I passed along this information to my local oncologist's office.  My local oncologist ordered me a CT and bloodwork (which I had done today), but he is not wanting to do an MRI.  Brachytherapy for choroidal melanoma was exactly 1 year ago.  Should I push for an MRI?  If so, any suggestions on how or what to say/show my local oncologist to convince him that an MRI is standard follow-up post plaque?  Isn't this kind of like telling the melanoma guy that he's not doing a good job, or that he's not up-to-speed about (choroidal) melanoma?

Julieanne

Yes, push.

Hard.

Ask Renee at Jeff to see if she can get you documentation, or even have someone on the Jeff team to write a letter outlining the medical rationale for both CT and MRI.  It was a letter from that team that got my IHP -- all $250,000 of it -- covered by Blue Cross even though the whole thing was done out of network.   HTere are probably studies they can cite for the importance of an MRI.  The everage Joe GP wouldn't be aware unless told by the experts.

--Tom

Keep Rowing!

WOW, this process is so incredibly frustrating and so incredibly slow.  I realize that this is only the beginning of a long and exhaustive journey. 

Long story short----my local medical oncologist (as in Joe GP) still insists on CT and bloodwork only.  Those came back clear, but that's not good enough.  It's definitely time to switch oncologists.  I've never had to "fire" a doc before.  How do I go about getting an actual referral to Dr. Sato?  I have Blue Cross/Blue Shield.  Can my PCP do a referral; or, can my ocular oncologist?  Or, do I have to get my Joe GP to do it?

I've communicated with Renee at Jeff (who is wonderful, if anyone else is wondering) and am currently completing the paperwork/accumulating records to forward to Sato's office for review.  But, if I can't find a Joe GP to follow Dr. Sato's recommendations, then . . . . ?

Julieanne

Julianne,

All you have to do is to call and make an appointment with Dr. Sato.  Renee could surely help you.  No referral necessary.  I have found that to be true of any doctor I have tried to see, even the big "stars." 

I have even called "out of the blue" docs whom I have never seen, whose name I found on a paper on the net, and they have welcomed my call and answered my questions.  Do not be intimidated by the receptionists/secretaries who see their role as protecting their doc.  The docs themselves are open and available once you get to them.

Good luck,

Esther