- May 3, 2017 at 11:47 am
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 ,
- May 3, 2017 at 2:44 pm
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.
- May 3, 2017 at 5:44 pm
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.
- May 3, 2017 at 9:03 pm
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 .
- May 4, 2017 at 8:03 pm
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.
- May 5, 2017 at 1:08 am
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
- May 5, 2017 at 12:13 pm
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.
Tagged: cutaneous melanoma
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