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Oncologist Appt today…things I should ask??
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Oncologist Appt today…things I should ask??

› Forums › General Melanoma Community › Oncologist Appt today…things I should ask??

  • Post
    • October 19, 2010 at 3:10 pm
    Wendi Lynn
    Participant

      Here is my background:

      Mole removed and diaginosed as MM on 5/27.  WLE on 6/15.  FNB for enlarged lymph node on 9/1 positive for MM.  PET scan on 9/13, questionable for lymph nodes under arm.  No further testing done.  Modified left neck dissection – 32 lymph nodes removed on 9/22 – only one positive for MM. 

      Here is my background:

      Mole removed and diaginosed as MM on 5/27.  WLE on 6/15.  FNB for enlarged lymph node on 9/1 positive for MM.  PET scan on 9/13, questionable for lymph nodes under arm.  No further testing done.  Modified left neck dissection – 32 lymph nodes removed on 9/22 – only one positive for MM. 

      Today I return to my oncologist for my 2nd meeting with him (met with him first on 7/1).  He is not a melanoma specialist and honestly I'm not sure how much experience he has with it at all.  I'm wondering what questions I should be prepared with today.  I've read here that people take alot more tests than I've had so I'm not sure if I should be requesting them (blood, brain scan, CAT scan).  When I did meet with him the first time, he did say that if the lymph node came back positive that we would do Interferon. 

      What are the key things I need to ask for now?  The doctors, so far, have not been very willing to volunteer info or tests (I'm assuming because I have HMO insurance), so I'd like to be prepared to ask for those things up front.

      Thank you!!!

      Wendi

    Viewing 9 reply threads
    • Replies
        • October 19, 2010 at 3:48 pm
        Jerry from Cape Cod
        Participant

          Wendi,

          Let us know where you are located.  I"m sure someone here can recommed a treatment center in your area that is experienced in melanoma. 

          I would also ask your doctor for a referral / recommendation which he should be glad to give.

          Jerry from Cape Cod

          • October 19, 2010 at 3:48 pm
          Jerry from Cape Cod
          Participant

            Wendi,

            Let us know where you are located.  I"m sure someone here can recommed a treatment center in your area that is experienced in melanoma. 

            I would also ask your doctor for a referral / recommendation which he should be glad to give.

            Jerry from Cape Cod

            • October 19, 2010 at 6:13 pm
            bluepeople
            Participant

               Good question!  We are in the same situation and just met with the oncologist.  It is very frustrating as our doctor does not seem willing to refer us to a specialist (we have Kaiser).  He said a specialist wouldn't be able to do anything that they couldn't do!!!  I would think that a specialist would have extra insight and experience with melanoma right??!!  My hubby is going to start interferon on Nov. 1st even though the doctor didn't seem to care what he chose to do either way, GGRRRR.  Good luck, and I hope you have a better experience than us so far.  Unfortunately I think you have to be a little pushy to make sure you get everything you need/deserve, with some HMO's.

                • October 19, 2010 at 6:43 pm
                Wendi Lynn
                Participant

                  I'm not happy to say this, but I'm glad I'm not alone.  It does seem that your wait time with the doctors has been a lot less than mine, so for that I'm happy for you!  As for the quality…..well, we do seem to be in the same boat. 

                  I'm in Southern California and actually, Julie in So Cal had recommended a couple of treatment facilities here.  If I don't get the answers I'm looking for today, I will be making an appointment there for a second opinion, but I need to get all my test/pathology reports before I do that.

                  Frustration with the process runs a close second to the fear of the battle, but I'm ready to fight!  Akilynr, I'll be curious to hear about your husbands experience with the Interferon.  Maybe about that time we can compare notes!

                  • October 19, 2010 at 6:43 pm
                  Wendi Lynn
                  Participant

                    I'm not happy to say this, but I'm glad I'm not alone.  It does seem that your wait time with the doctors has been a lot less than mine, so for that I'm happy for you!  As for the quality…..well, we do seem to be in the same boat. 

                    I'm in Southern California and actually, Julie in So Cal had recommended a couple of treatment facilities here.  If I don't get the answers I'm looking for today, I will be making an appointment there for a second opinion, but I need to get all my test/pathology reports before I do that.

                    Frustration with the process runs a close second to the fear of the battle, but I'm ready to fight!  Akilynr, I'll be curious to hear about your husbands experience with the Interferon.  Maybe about that time we can compare notes!

                    • October 19, 2010 at 7:57 pm
                    killmel
                    Participant

                      Where in southern california. UCSD Moores Cancer has some mel. specialists & trials. I think Kevin (name: himynameiskevin) is going there> Good Luck

                      • October 19, 2010 at 7:57 pm
                      killmel
                      Participant

                        Where in southern california. UCSD Moores Cancer has some mel. specialists & trials. I think Kevin (name: himynameiskevin) is going there> Good Luck

                        • October 19, 2010 at 8:35 pm
                        Wendi Lynn
                        Participant

                          I'm actually seeing doctors associated with Long Beach Memorial right now.  But I live in Cypress.  Julie recommended a couple of facilities in Santa Monica and West LA.

                          • October 19, 2010 at 8:35 pm
                          Wendi Lynn
                          Participant

                            I'm actually seeing doctors associated with Long Beach Memorial right now.  But I live in Cypress.  Julie recommended a couple of facilities in Santa Monica and West LA.

                            • October 19, 2010 at 9:04 pm
                            killmel
                            Participant

                              Hi Wedi Lynn,

                              I had a consultation with Dr. O'day at angeles clinic. He seemed rushed and did not give me much time. However, I went back to him again for a second chance  and it was the same. He had not looked at my history nor scans so he was not very prepared  to discuss treatment. While waiting for my appointment, I talked to a few other patients, and they had the same results. I just think that he is overwhelmed with running the angeles clinic, clinical trials, etc plus he travels a great deal so appoinments are hard to get. Dr.O'day tries to sign you up for his clinical trials rather than recommending the best treatment/clinical trial no matter where it is??? I expect an ONC to give me the best advice for treatment not just what trials are available through angeles clinc. Maybe I expected too much. For what it is worth, that is my experience with angeles clinic.

                              Good Luck!

                              • October 19, 2010 at 9:04 pm
                              killmel
                              Participant

                                Hi Wedi Lynn,

                                I had a consultation with Dr. O'day at angeles clinic. He seemed rushed and did not give me much time. However, I went back to him again for a second chance  and it was the same. He had not looked at my history nor scans so he was not very prepared  to discuss treatment. While waiting for my appointment, I talked to a few other patients, and they had the same results. I just think that he is overwhelmed with running the angeles clinic, clinical trials, etc plus he travels a great deal so appoinments are hard to get. Dr.O'day tries to sign you up for his clinical trials rather than recommending the best treatment/clinical trial no matter where it is??? I expect an ONC to give me the best advice for treatment not just what trials are available through angeles clinc. Maybe I expected too much. For what it is worth, that is my experience with angeles clinic.

                                Good Luck!

                                • October 19, 2010 at 9:05 pm
                                killmel
                                Participant

                                  Hi Wedi Lynn,

                                  I had a consultation with Dr. O'day at angeles clinic. He seemed rushed and did not give me much time. However, I went back to him again for a second chance  and it was the same. He had not looked at my history nor scans so he was not very prepared  to discuss treatment. While waiting for my appointment, I talked to a few other patients, and they had the same results. I just think that he is overwhelmed with running the angeles clinic, clinical trials, etc plus he travels a great deal so appoinments are hard to get. Dr.O'day tries to sign you up for his clinical trials rather than recommending the best treatment/clinical trial no matter where it is??? I expect an ONC to give me the best advice for treatment not just what trials are available through angeles clinc. Maybe I expected too much. For what it is worth, that is my experience with angeles clinic.

                                  Good Luck!

                                  • October 19, 2010 at 9:09 pm
                                  Wendi Lynn
                                  Participant

                                    Thank you so much for the feedback.  I appreciate it tons!

                                    • October 19, 2010 at 11:08 pm
                                    killmel
                                    Participant

                                      Hi

                                      I also had a similar experience with the Angeles Clinic as the earlier post mentioned. Saw both Dr. O'Day & Dr. Hamid. Very disappointed with these doctors because I was never treated  like a person,,,,more concerned to sign me up for one of their trials. Almost treated me like a lab rat. The doctors spents 10 minutes with me then sent in the clinical trial coordinators to sign you up for trial.

                                      I would try to see Dr. Spitler, she is a melanoma specialist.

                                      http://www.melanomacenter.com/welcome/melanoma_bios.html

                                      http://www.melanomacenter.com/index.html

                                       

                                      Best of Luck

                                      • October 19, 2010 at 11:08 pm
                                      killmel
                                      Participant

                                        Hi

                                        I also had a similar experience with the Angeles Clinic as the earlier post mentioned. Saw both Dr. O'Day & Dr. Hamid. Very disappointed with these doctors because I was never treated  like a person,,,,more concerned to sign me up for one of their trials. Almost treated me like a lab rat. The doctors spents 10 minutes with me then sent in the clinical trial coordinators to sign you up for trial.

                                        I would try to see Dr. Spitler, she is a melanoma specialist.

                                        http://www.melanomacenter.com/welcome/melanoma_bios.html

                                        http://www.melanomacenter.com/index.html

                                         

                                        Best of Luck

                                        • October 19, 2010 at 9:09 pm
                                        Wendi Lynn
                                        Participant

                                          Thank you so much for the feedback.  I appreciate it tons!

                                          • October 19, 2010 at 9:05 pm
                                          killmel
                                          Participant

                                            Hi Wedi Lynn,

                                            I had a consultation with Dr. O'day at angeles clinic. He seemed rushed and did not give me much time. However, I went back to him again for a second chance  and it was the same. He had not looked at my history nor scans so he was not very prepared  to discuss treatment. While waiting for my appointment, I talked to a few other patients, and they had the same results. I just think that he is overwhelmed with running the angeles clinic, clinical trials, etc plus he travels a great deal so appoinments are hard to get. Dr.O'day tries to sign you up for his clinical trials rather than recommending the best treatment/clinical trial no matter where it is??? I expect an ONC to give me the best advice for treatment not just what trials are available through angeles clinc. Maybe I expected too much. For what it is worth, that is my experience with angeles clinic.

                                            Good Luck!

                                            • October 20, 2010 at 8:28 pm
                                            LynnLuc
                                            Participant

                                              You need a melanoma specialist…my FORMER oncologist was not…he basically said there was nothing he could do or recommend other than radiation and temodar…when temodar stopped working he didn't want to do anything "until it gets bad and then I can bring out the hard core chemo",,, then he added it probably wouldn't work anyway…find a clinical trial…most are free…I am now Stage 4 Melanoma NED but I was given 6-9 months May 2009…

                                              • October 20, 2010 at 8:28 pm
                                              LynnLuc
                                              Participant

                                                You need a melanoma specialist…my FORMER oncologist was not…he basically said there was nothing he could do or recommend other than radiation and temodar…when temodar stopped working he didn't want to do anything "until it gets bad and then I can bring out the hard core chemo",,, then he added it probably wouldn't work anyway…find a clinical trial…most are free…I am now Stage 4 Melanoma NED but I was given 6-9 months May 2009…

                                              • October 19, 2010 at 6:13 pm
                                              bluepeople
                                              Participant

                                                 Good question!  We are in the same situation and just met with the oncologist.  It is very frustrating as our doctor does not seem willing to refer us to a specialist (we have Kaiser).  He said a specialist wouldn't be able to do anything that they couldn't do!!!  I would think that a specialist would have extra insight and experience with melanoma right??!!  My hubby is going to start interferon on Nov. 1st even though the doctor didn't seem to care what he chose to do either way, GGRRRR.  Good luck, and I hope you have a better experience than us so far.  Unfortunately I think you have to be a little pushy to make sure you get everything you need/deserve, with some HMO's.

                                                • October 20, 2010 at 1:57 am
                                                Jenjen
                                                Participant

                                                  Hi Wendi,

                                                   

                                                  I am in San Diego, Stage 3a and I go to UCSF in San Francisco and see Dr. Daud..he is AMAZING!  I also had a consult with Dr. Edward Mclay in Encinitas, Ca and he was conducting a really successful bio chemo trial. They are both amazing doctors and treat you very well. Let me know if you want any other info! I went through some horrible doctors before i found them!

                                                   

                                                  Jenjen 3a NED 15 months

                                                  • October 20, 2010 at 1:57 am
                                                  Jenjen
                                                  Participant

                                                    Hi Wendi,

                                                     

                                                    I am in San Diego, Stage 3a and I go to UCSF in San Francisco and see Dr. Daud..he is AMAZING!  I also had a consult with Dr. Edward Mclay in Encinitas, Ca and he was conducting a really successful bio chemo trial. They are both amazing doctors and treat you very well. Let me know if you want any other info! I went through some horrible doctors before i found them!

                                                     

                                                    Jenjen 3a NED 15 months

                                                    • October 20, 2010 at 1:58 am
                                                    Jenjen
                                                    Participant

                                                      Hi Wendi,

                                                       

                                                      I am in San Diego, Stage 3a and I go to UCSF in San Francisco and see Dr. Daud..he is AMAZING!  I also had a consult with Dr. Edward Mclay in Encinitas, Ca and he was conducting a really successful bio chemo trial. They are both amazing doctors and treat you very well. Let me know if you want any other info! I went through some horrible doctors before i found them!

                                                       

                                                      Jenjen 3a NED 15 months

                                                      • October 20, 2010 at 1:58 am
                                                      Jenjen
                                                      Participant

                                                        Hi Wendi,

                                                         

                                                        I am in San Diego, Stage 3a and I go to UCSF in San Francisco and see Dr. Daud..he is AMAZING!  I also had a consult with Dr. Edward Mclay in Encinitas, Ca and he was conducting a really successful bio chemo trial. They are both amazing doctors and treat you very well. Let me know if you want any other info! I went through some horrible doctors before i found them!

                                                         

                                                        Jenjen 3a NED 15 months

                                                        • October 20, 2010 at 2:47 am
                                                        Wendi Lynn
                                                        Participant

                                                          Update:  Saw the doctor today.  He was just as charismatic as the first time I saw him.  He said that the options are to sit and wait or HD Interferon for a year or Clinical Trials.  He said that he was going to look into some local clinical trials and I expressed my concern about the Angeles Clinic and Dr. O'Day.  Said that he's not surprised that people feel that way.  He said they are there to do the trials, not to comfort the patients.  Guess I see his point, but everyone wants to feel like cared for.  In any case, I'm scheduled for a brain MRI and then will check with the doctor to see what he's come up with for the trials.  I'm sure I'll be looking for support once that info is provided.  Again, thanks to everyone for their help.  It's greatly appreciated!!!!

                                                          • October 20, 2010 at 2:47 am
                                                          Wendi Lynn
                                                          Participant

                                                            Update:  Saw the doctor today.  He was just as charismatic as the first time I saw him.  He said that the options are to sit and wait or HD Interferon for a year or Clinical Trials.  He said that he was going to look into some local clinical trials and I expressed my concern about the Angeles Clinic and Dr. O'Day.  Said that he's not surprised that people feel that way.  He said they are there to do the trials, not to comfort the patients.  Guess I see his point, but everyone wants to feel like cared for.  In any case, I'm scheduled for a brain MRI and then will check with the doctor to see what he's come up with for the trials.  I'm sure I'll be looking for support once that info is provided.  Again, thanks to everyone for their help.  It's greatly appreciated!!!!

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