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My uncle was just dx with melanoma.

BluebirdOne's picture
BluebirdOne
Posts: 475
Joined: Jul 2018

Off topic, I know, but we just learned today from our 83 year old treasured uncle that he has been diagnosed with melanoma. I was horrified to learm of the missteps, incompetence and sheer lunacy of what he had already had to endure. Same story that many of us tell. Dermatologist dx melanoma after a biopsy, clown car incompetency ensued. He was misdirected to the wrong oncologist, and then the wrong surgeon, then the next surgeon also told him he does not do this type of surgery. WTF. Already it has been one month since dx, no surgery scheduled yet because no one cares enough to get my poor uncle a referral to the correct surgeon. Madness. He is very old school, wouldn't question a doctor if he was on fire. Come to find out he has a Medicare Advantage plan which holds him to being referred to only the docs within that plan. Aha. He is almost within walking distance to the Mayo Clinic in Rochester, where I was treated. But his old school "don't question your docs" mentality is keeping him from going there. Money is not the issue. I made my case for Mayo, I doubt he will contact them. Longevity is common in the family, so he may have many good years in front of him if he only listens to us. Our frustration level is off the charts.

Thank you for reading. It brings back bad memories of the awful time I had getting my dx and initial treatment. This type of stuff happens everywhere, I know, but I keep hoping things get better for cancer patients.

xxoo

Denise

Harmanygroves's picture
Harmanygroves
Posts: 294
Joined: Jun 2021

Uncle is very lucky to have your expertise behind him. Well done supporting him!

 

Deb2

BluebirdOne's picture
BluebirdOne
Posts: 475
Joined: Jul 2018

Thanks for the kind words. His preference is to not be proactive in any way shape or form. Our hair is on fire, while he is indifferent, but listening. We told him to call Mayo TODAY, but we shall see. Arggh!

xxoo

Denise

Good to see your face again, Deb2!

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

I had one when I was being investigated.  I had to wait 3 months for an appointment for the D & C.  I changed to Medicare Supplemental Plan as soon as I could.  Now I can go anywhere.  Maybe go onto the melanoma discussion board and get some examples.  Your uncle may be frightened too, just not showing it.  Prayers for a quick resolution.  By the way, now is the time to change Medicare Plans.  I had to join an AARP supplemental plan at first, and after 3 months I could choose the one I wanted.  There are offices that assist with this process.   In Washington State it is called Vibrant.

BluebirdOne's picture
BluebirdOne
Posts: 475
Joined: Jul 2018

gatekeepers, long waits, hard to get referrals. The more they don't treat you, the more money they make. My internist of 12 years in the biggest doctor group in Illinois, stopped taking anything but Medicare Advantage. So after 12 years I had to find another doctor. The group was bought by private equity so they are squeezing every nickel of profit they can. About 25 doctors in that group now will not take any Medicare, nor can you pay cash. It is especially wrong for someone with cancer, IMHO. Also, like many, I have two homes, and spend 1/2 year far away from my home doctors, so I have to have the ability that Medicare gives to go to anyone who accepts it. Where I live in Michigan has pretty good doctors, etc., that take care of checkups, etc., but you would definitely go to Chicago to see specialists who see many cases, which would be out of network.

The melanoma board is not very active, so not much help there. I am sure he is scared to death and I hope he will at least try to get a 2nd opinion at Mayo as we suggested. We also pointed out that he should have someone who does a lot of these particular surgeries as the melanoma is on his face. He agreed, but we shall see if he actually follows through. Sigh.

Thanks!

Denise

Maxster
Posts: 92
Joined: Apr 2020

I think it's always important to read the fine print. My advantage plan lets me go in and out of network at the same cost for services.  There are a few minor exceptions but the cost differential is quite small.  I live in Wisconsin and got a second opinion at MSKCC in New York City.  I also have international emergency coverage.  I do have co-pays with a maximum out of pocket.  I went on this plan when I was healthy and then got sick.  While I haven't checked it out personally, I was told I could not get a regular supplemental because of my cancer.  I am not sure of the premiums on the plans that pay all of the medicare co-pays.  My monthly premium is very small. So I think it just depends--like everything else in the insurance world--as to what individual plans work and what don't.

BluebirdOne's picture
BluebirdOne
Posts: 475
Joined: Jul 2018

Thankfully, he finally received the referral to get the MRI scan, and a referral to the correct surgeon. It appears that the melanoma has not spread, but they are waiting to schedule the surgery soon.  With his Medicare Advantage plan, Mayo is out of network, unfortunately. His plan is not a PPO, so he is limited to who is in his network. We are just grateful he finally got the referrals and the right doctors. Jeez Louise, what an unnecessary struggle after biopsy just to get a dx and treatment.

Denise

Spydergal's picture
Spydergal
Posts: 54
Joined: Jul 2021

I definitely understand what your going through. My Dad was diagnosed with multiple myeloma in 2008. My father was 81 and still working because of his heart conditions which resulted in a pace maker, expensive drugs and then a quadruple bypass. Then he was diagnosed with multiple myeloma (his oldest brother died from it), my dad was never able to retire because he couldn't afford the care otherwise. My mom had Alzheimer's on top of all that stress. I was single making only $8.50 an hour and no health insurance at that time so I couldn't help my parents financially which broke my heart.  last year of his life he got shingles and I believe that with his cancer is why he didn't live a little longer. Like your dad my dad trusted his doctors and wouldn't ask questions. He kept a lot from me and even his last two months of life his youngest sister and I begged him to let me leave Delaware and come to Florida to care for him and play protector from my mom's sundown temper tantrums do to her Alzheimer's. I got a phone call on a Thursday and my dad told me it was time which meant he had a couple days before he would die. He made me promise to find his tax papers and mail them to my uncle who was an accountant (his sisters husband) and he made me promise to take care of my mom which I did until she passed in 2015 at 89 I moved to Florida after he passed. The earliest flight was on saturday afternoon, his coworker picked me up from the airport. He collapsed on Friday and the blood transfusion didn't work at the hospital so they transferred him to hospice, he was unconscious and remained so until his death. The last time I got to speak to him was that damn phone call. I slept in a chair next to him that night. The next day they disconnected his pacemake And he passed. As he lay dying I whispered in his ear "dad I love you so much, don't worry I found and mailed the tax Papers today and I promise I'll take care of mom, it's ok to leave  I'll be ok. He died seconds after I said that as I held his hand looking in his beautiful unresponsive blue eyes. I understand how you are feeling, his doctors did very little, he was given chemo pills and blood transfusion, he had painful sores all over his back arms and chest from the shingles and they gave him stuff to put in a bath and whatever meds they might have gave him obviously didn't work. They never arranged for him to be seen at Shands or MOFFITT which would have offered better care than the small hospital with aging equipment and lousy doctors. That hospital was bought out by Shane's and then sold to Advent health who have done some upgrading. You will be in my prayers, I wish I could help you through this, it's painful as hell, I am sending you hugs. You are a good daughter and he loves you so much.

BluebirdOne's picture
BluebirdOne
Posts: 475
Joined: Jul 2018

Thanks so much for the kind words. This was my uncle, not my dad, but we are very close to him. Thank you for telling us your story about your dad and mom. You are a wonderful daughter and should always remember you did your best to help your mom and dad, I did the same for mine under very trying conditions to say the least. Being the primary caregiver and decision maker is about as tough of a job as there is when dealing with sick family.

We will know next week about his final staging and what they have to say about treatment. I have no idea what they do for melanoma besides surgery, I will wait until he is properly staged and see what the NCCN guidelines suggest. We are glad at least that he did reach out to us and hope we can monitor his treatment plan as it goes along.

xxoo

Denise

Spydergal's picture
Spydergal
Posts: 54
Joined: Jul 2021

treatments for myeloma has actually improved in the last ten years thanks to new medicines available that did not exist when my dad was alive. Heck, the vaccine for shingles became available shortly after my dad died. The shingels weakened his ability to fight the myeloma so much that it helped in killing him. Your uncle Is still kicking it and hopefully there will be even more successful treatments to extend his life. You and your uncle has been and will remain in my prayers. It is painful to watch somebody you love go through this,, I'm sending you hugs 

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