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Seeking Medical Experts When “Regular” Physican Isn’t Consistent with Suggested Follow-up Testing

Forums General Melanoma Community Seeking Medical Experts When “Regular” Physican Isn’t Consistent with Suggested Follow-up Testing

  • Post
    Julieanne
    Participant

      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?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?

    Viewing 8 reply threads
    • Replies
        tommonoli
        Participant

          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.

            Julieanne
            Participant

              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". 

              Julieanne
              Participant

                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". 

                Julieanne
                Participant

                  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". 

                tommonoli
                Participant

                  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.

                  tommonoli
                  Participant

                    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.

                    ThatHomeschoolDad
                    Participant

                      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: [email protected]

                       

                      –Tom

                      ThatHomeschoolDad
                      Participant

                        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: [email protected]

                         

                        –Tom

                        ThatHomeschoolDad
                        Participant

                          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: [email protected]

                           

                          –Tom

                            Julieanne
                            Participant

                              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

                              Julieanne
                              Participant

                                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

                                Julieanne
                                Participant

                                  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

                                  Julieanne
                                  Participant

                                    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

                                    Julieanne
                                    Participant

                                      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

                                      Julieanne
                                      Participant

                                        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

                                        Julieanne
                                        Participant

                                          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

                                          ThatHomeschoolDad
                                          Participant

                                            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

                                            ThatHomeschoolDad
                                            Participant

                                              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

                                              ThatHomeschoolDad
                                              Participant

                                                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

                                                eyecancerny
                                                Participant

                                                  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: [email protected]. 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

                                                  eyecancerny
                                                  Participant

                                                    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: [email protected]. 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

                                                    Julieanne
                                                    Participant

                                                      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

                                                      Julieanne
                                                      Participant

                                                        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

                                                        Julieanne
                                                        Participant

                                                          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

                                                          eyecancerny
                                                          Participant

                                                            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: [email protected]. 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

                                                            Julieanne
                                                            Participant

                                                              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

                                                              Julieanne
                                                              Participant

                                                                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

                                                              Julieanne
                                                              Participant

                                                                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

                                                                  ThatHomeschoolDad
                                                                  Participant

                                                                    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

                                                                    Julieanne
                                                                    Participant

                                                                      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

                                                                      Julieanne
                                                                      Participant

                                                                        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

                                                                        Julieanne
                                                                        Participant

                                                                          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

                                                                          edamaser
                                                                          Participant

                                                                            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

                                                                            edamaser
                                                                            Participant

                                                                              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

                                                                              edamaser
                                                                              Participant

                                                                                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

                                                                                ThatHomeschoolDad
                                                                                Participant

                                                                                  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

                                                                                  ThatHomeschoolDad
                                                                                  Participant

                                                                                    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

                                                                                  Julieanne
                                                                                  Participant

                                                                                    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

                                                                                    Julieanne
                                                                                    Participant

                                                                                      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

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