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I need some help from you folks

Forums Cutaneous Melanoma Community I need some help from you folks

  • Post
    Bobman
    Participant

      So I  was  supposed  to be at UCSF  on the 9th. That's  been  canceled  as my insurance  has denied  me twice , and is now on appeal .  I thought , and was told that the appeal  was also cancelled , but it turns  out that my primary  care provider  doesn't  know  how  to do an appeal , and after being  held by the hand by the great people  at UCSF , the proper  paperwork  is now where  it needs  to  be . All the frustration  I have  experienced  navigating  the system  out here ,is now shared by fully  4 other people  at UCSF , who have been  in  constant  contact  with  me , really  going  the extra  mile to get me there. We have shared a laugh  or two on the phone after they receive progress  notes, instead  of pathology  reports  that were requested .  The  system  here is broken , and that's  putting  it mild. There have been uncountable  such diversions  in simple  routine  things  that should  take five  minutes  , stretching  into  months . 

      In the  meantime , I'm  up to my 11th  primary . I have so many  more  biopsies  needed it's  overwhelming . My surgeon  and  I  are just playing  whack-a-mole. He has forwarded  a letter to my insurance  to get me to SF. Neither  of us  are  comfortable  with  the  fact it's just me and  him chasing  this around . Fully ,10 of my primaries  have gone unnoticed  by three  dermatologists . I have literally  had to beg everyone  of those dermatologists  to biopsy  what I knew was a bad lesion .  I am  flying  under  the  radar  with them.

      I had family  support to financially  get me to SF after the first  two denials , but UCSF  is now talking  to my insurance  company , primary  care people  and anyone  else  needed  to move this along . They told me yesterday  to sit tight  possibly  another  month  to allow  the process  to unfold . They also  asked me if I   had ever had any genetic  mutation  testing  done, which I have not. They also  asked  if it can be done out here,and I actually  don't  know. This is the first  time that subject  has come up for me. Which brings  me  to  what I  need  some  help  with  from  anyone  of you that might  know . 

      I am flying  to Honolulu  on Thursday  for a PET  /CT , and  a visit  with  my oncologist  afterwards .  I have only seen him twice before  for a grand total  of no more  than 15 minutes  of his time,combined . His only  comments  to me was that I looked fine to him considering  how much Melenoma  I've  had. That was referring  to just looking at me. This will  be my fourth  scan in 5year's . The first one showed a suv value of 3.8 in the rectum,followed  by unremarkable  colonoscopy. The second  one showed suv of 6.8 in same area ,followed by another  unremarkable  colonoscopy . Third one showed suv of 8.3,same exact area,followed by yet another  unremarkable  colonoscopy ,then a MRI which noted a 15 mm mass on my liver. That was a year ago,with no follow  up since. Just several  more skin primaries  since,and so many  lesions  coming  up ,I  can't  keep  them  straight . Not a word from my oncologist  about anything  I just mentioned . What should  I  be asking  for here? Genetic  testing ?  I don't  have a clue. I've  been  working  hard  as I can  just to get cut off what I can. I just want to go in with a plan since I know  I'll  get precious  few moments  with someone  who doesn't  know  much about  melanoma .  I just  have to keep  moving  this along until  I can get to SF.

      Many  thanks  as always , 

      Bob  

    Viewing 2 reply threads
    • Replies
        Shaneswife
        Participant

          So sorry to hear of your troubles. I don't have any answers for you however I'm sure the rest of the community can offer some help. 

           

          Janis

            Bobman
            Participant

              Thanks  Janis…all thoughts  and words from everyone  helps me feel more connected . 

            jennunicorn
            Participant

              Wow Bob, just wow. I honestly don't know if asking your oncologist about genetic testing or anything above his knowledge will go over easily. I don't know what testing UCSF was referring to, I would ask them that question, what test(s) they would run. The only ones I know about are the BRAF, NRAS, CKIT tests which UCSF ran for me after my first incompetent non-ucsf doc didn't. But, there could be other tests they'd want to know the answers to, given your case is unique. And, honestly, you may not get your docs there to run these tests for you, you may have to wait until you're in SF. 

              What a crazy process. If you need a buddy in SF, let me know, I'm always around. 

                Bobman
                Participant

                  Yeah  Jenn , I  just have no idea  what I should  be pushing  for at this time. I actually  was supposed  to get a rectal ultrasound  to help figure  out what keeps  lighting up down there, but the only person  doing that out here refused my insurance . UCSF  told me to push the oncologist  tomorrow  on writing  a recommendation  to see them as my surgeon  did, figuring  that that would be possibly  a double  shot helping .  At any rate, one step at a time .  I'll  see what tomorrow  brings.

                  I'll  definitely  give you a shout when a SF trip is confirmed . 

                  Thanks  alot.

                  Bob

                Polymath
                Participant

                  Hi Bobman,

                  While I cannot offer much help, I do share your pain.  Being out here in the middle of the Pacific has it's benefits, right up until you need advanced knowledge and techniques, and you realize in many ways we are still a third-world paradise.  I don't know which insurance and hospital system you are using.  But with the ability to purchase insurance in the marketplace, you should consider investing in a better plan/insurer as it pays off in the end.  Although my local care is at Straub, I have become my own advocate and pretty much tell the local onc what UCSF specialist recommends and he follows.  As for genetic testing I doubt that anyone can help you here, and my understanding is even if you found somewhere, here or on mainland, insurance won't cover.  I guess Queen's with their MD Anderson connection would be a place to inquire anyway.  I sincerely hope you can get things worked out and make UCSF a regular trip, well worth taking.

                    Mark_DC
                    Participant

                      Agree with Gary / polymath  – you may need to obtain better insurance, especially while this option is still available. Perhaps UCSF can help you work out which insurance you need. Then make a plan for switching. This is really not fair, given your/our disease you are asking for pretty basic stuff. Hope this will work out well, mark

                      Bobman
                      Participant

                        Appreciate  the thoughts  Mark. I'm  definitely  looking  at insurance  hard right now planning  for the long haul  with this disease . 

                        Bobman
                        Participant

                          Gary..your  words,and experience  have help guide  me for a long time,and thank you for all your  help. Yeah , I transferred  to Queens  awhile  back in hopes  of the M.D. Anderson  connection , but so far it really  hasn't  panned out. My eyes  are set on UCSF  now,and it's  going  to happen . Just a little  more  time. I will definitely  keep  you posted buddy. Love to see you sometime  when I'm on your  island .  I'll  be over there soon as they get their  pet/CT up and running  at queens .  I just posted yesterday's  experience  there.

                           

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