Newly diagnosed Metastatic Prostate Cancer

Posted by rxgolfer @rxgolfer, Nov 4 4:37pm

Aloha all,I’m 67 y.o. Had recent biopsy - Grade group 4 in 2 of 12 samples. PET scan showed multiple lymph nodes in left pelvic area that lit up. Last PSA was 22. See MD this Friday to go over PET results.
I’m in Oklahoma. Have researched Mayo Clinic in Phoenix (relative lives near there), friends in California are recommending UCLA, UCSF, or Stanford. Gathering info at this point. Plan on fighting this disease as best I can, not gonna take no or let’s wait and see for an answer. Anyone been seen at Mayo cancer clinic in Phoenix, AZ ?

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@rxgolfer

Thanks. Mayo is on back burner for me now. Other reply was right about them not accepting Medicare Advantage plans, they said I could have my Dr. send them a referral and they could submit to administration to see if they could make an exception. I could switch to regular Medicare but would have to wait til Jan. 1st for it to kick in. In process of Trying to get an appointment with Stanford Medicine Cancer Center. UCLA will accept my plan per my phone conversation with my Insurance rep. MD Anderson is out.

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you might consider switching to original Medicare anyway. I admit I know very little about the advantage plans. I have Medicare with Humana supplement. I was old enough to get plan F. Plan F pays all the deductibles. I think your age will need a plan G. Some deductibles are not covered. Humana has silver sneakers so I like the gym coverage. Why I picked original Medicare is I can go anywhere in the US and be covered as long as they accept Medicare. Advantage plans require approval or Dr networks. I didnt want to mess with it. I dont have a dental plan. I just pay the $100 every 6 months for cleaning. You have until Dec 7th.

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@tuckerp

you might consider switching to original Medicare anyway. I admit I know very little about the advantage plans. I have Medicare with Humana supplement. I was old enough to get plan F. Plan F pays all the deductibles. I think your age will need a plan G. Some deductibles are not covered. Humana has silver sneakers so I like the gym coverage. Why I picked original Medicare is I can go anywhere in the US and be covered as long as they accept Medicare. Advantage plans require approval or Dr networks. I didnt want to mess with it. I dont have a dental plan. I just pay the $100 every 6 months for cleaning. You have until Dec 7th.

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Thanks, I used to have Humana, but get better dental and other perks with UHC. Going back to orig. Medicare is on the table, don’t know if I want to wait til Jan 1st for it to go into effect.
My UHC plan pays for out of state services supposedly if at an in network provider. Just jumping through hoops to see if I can get an appt. With Dr I want.

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Once you have a Medicare advantage plan most medicare supplement plans will not accept you. The exception to this rule may be if your advantage plan cancels you or if you change your primary residence. There are Medicare insurance agents that are much more knowledgeable about this issue than me and if you wish to change to a supplement plan they can help you, usually without any cost to you. Good Luck

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@hbp

Once you have a Medicare advantage plan most medicare supplement plans will not accept you. The exception to this rule may be if your advantage plan cancels you or if you change your primary residence. There are Medicare insurance agents that are much more knowledgeable about this issue than me and if you wish to change to a supplement plan they can help you, usually without any cost to you. Good Luck

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I also know after your initial signup then a change to your supplement plan requires their approval during the open enrollment. If you have medical issues it might not be as easy. Like you mention I am not an expert either. My Medicare Insurance agent does not cost me. They get paid by Medicare.

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@rxgolfer

Thanks, I used to have Humana, but get better dental and other perks with UHC. Going back to orig. Medicare is on the table, don’t know if I want to wait til Jan 1st for it to go into effect.
My UHC plan pays for out of state services supposedly if at an in network provider. Just jumping through hoops to see if I can get an appt. With Dr I want.

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I have considered going back to regular medicare. My agent told me that can be done on the first of any month, you do not need open enrollment. My wife has been to MAYO Phoenix. Incredible place.

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@rxgolfer

Thanks, I used to have Humana, but get better dental and other perks with UHC. Going back to orig. Medicare is on the table, don’t know if I want to wait til Jan 1st for it to go into effect.
My UHC plan pays for out of state services supposedly if at an in network provider. Just jumping through hoops to see if I can get an appt. With Dr I want.

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Hi @rxgolfer , I am a layman, 68 with Gleason 8 PCa. I am going the treatment route of proton beam radiation treatment + hormone therapy. I had trouble getting to see the doctor I wanted due to my Medicare Advantage plan here in MN. Checked out switching to Original Medicare. Regarding getting a supplemental policy, I recently checked with UHC, Blue Cross, Humana, Cigna, and HealthPartners. Since I am outside the "guaranteed right of issue" period during which you don't have to undergo underwriting for a supplemental policy, I was denied coverage at all of the above insurers. Need to be cancer free 2 - 5 years to get coverage they said.

You could risk Original Medicare without a supplemental plan but take on the risk of paying 20% part B coinsurance, and the risk of no cap on out of pocket expenses. Then you could switch back to Medicare Advantage at a later date. (Also, there is never any underwriting involved if you switch back from Original Medicare to Medicare Advantage.)

My digging also uncovered the following. It appears to me, due to state law, if you lived in NY or CT you could not be denied a supplemental policy. Also, a radical idea to get a supplemental policy would to be to move from OK to any other state, in which case you would be guaranteed an Original Medicare supplemental plan without underwriting.

Regarding getting a referral to Mayo Phoenix from your physician, you have nothing to lose, they may very well accept you despite your insurance. (I recently got my Medicare Advantage denial of coverage overturned via an appeal from my radiation oncologist's insurance team.) While waiting on Mayo's decision you can go forward with lining up an appointment with another doctor or doctors of your choice. Best to line up appointments ASAP because you will probably have weeks of lead time to the actual appointment. You can probably do telehealth consults to avoid traveling, initially.

One other point, if you choose radiation therapy you will probably need hormone therapy as well. My doctor started me on hormone therapy right away (Orgovyx). I am guessing your doctor, once you find one, will want you to start hormone therapy right away while working through your insurance situation.

Best of luck to you. Keep reaching out to this group with your questions / problems. There are many members here with lots of knowledge and personal experience!

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@rxgolfer

Thanks, I used to have Humana, but get better dental and other perks with UHC. Going back to orig. Medicare is on the table, don’t know if I want to wait til Jan 1st for it to go into effect.
My UHC plan pays for out of state services supposedly if at an in network provider. Just jumping through hoops to see if I can get an appt. With Dr I want.

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Someone on here mentioned at one point that Mayo Rochester may not have the same requirements for Medicare advantage. That might be a little more of a trip but it would be better than out of pocket expense.

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@carter777

Hi @rxgolfer , I am a layman, 68 with Gleason 8 PCa. I am going the treatment route of proton beam radiation treatment + hormone therapy. I had trouble getting to see the doctor I wanted due to my Medicare Advantage plan here in MN. Checked out switching to Original Medicare. Regarding getting a supplemental policy, I recently checked with UHC, Blue Cross, Humana, Cigna, and HealthPartners. Since I am outside the "guaranteed right of issue" period during which you don't have to undergo underwriting for a supplemental policy, I was denied coverage at all of the above insurers. Need to be cancer free 2 - 5 years to get coverage they said.

You could risk Original Medicare without a supplemental plan but take on the risk of paying 20% part B coinsurance, and the risk of no cap on out of pocket expenses. Then you could switch back to Medicare Advantage at a later date. (Also, there is never any underwriting involved if you switch back from Original Medicare to Medicare Advantage.)

My digging also uncovered the following. It appears to me, due to state law, if you lived in NY or CT you could not be denied a supplemental policy. Also, a radical idea to get a supplemental policy would to be to move from OK to any other state, in which case you would be guaranteed an Original Medicare supplemental plan without underwriting.

Regarding getting a referral to Mayo Phoenix from your physician, you have nothing to lose, they may very well accept you despite your insurance. (I recently got my Medicare Advantage denial of coverage overturned via an appeal from my radiation oncologist's insurance team.) While waiting on Mayo's decision you can go forward with lining up an appointment with another doctor or doctors of your choice. Best to line up appointments ASAP because you will probably have weeks of lead time to the actual appointment. You can probably do telehealth consults to avoid traveling, initially.

One other point, if you choose radiation therapy you will probably need hormone therapy as well. My doctor started me on hormone therapy right away (Orgovyx). I am guessing your doctor, once you find one, will want you to start hormone therapy right away while working through your insurance situation.

Best of luck to you. Keep reaching out to this group with your questions / problems. There are many members here with lots of knowledge and personal experience!

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Hey you are pretty smart, Just saw my local Urologist/Surgeon at an Urology Specialty Clinic in Tulsa (I researched a little to find him) to go over PET, was impressed with their operation. Some of his colleagues have ties to UCSF in Ca. And he seems to be up to date on things. Started me on Orgovyx and is getting insurance auth for Zuniga. He started the process before my appt which I appreciated. Plan is to evaluate in 2 to 3 months and then decide on Surgery or Radiation he is ok with either. So I feel some relief (my wife is really relieved) to know that I am being treated now and have some time to figure everything out. Will keep option open of having surgery somewhere else. Appreciate all the info.

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@carter777

Hi @rxgolfer , I am a layman, 68 with Gleason 8 PCa. I am going the treatment route of proton beam radiation treatment + hormone therapy. I had trouble getting to see the doctor I wanted due to my Medicare Advantage plan here in MN. Checked out switching to Original Medicare. Regarding getting a supplemental policy, I recently checked with UHC, Blue Cross, Humana, Cigna, and HealthPartners. Since I am outside the "guaranteed right of issue" period during which you don't have to undergo underwriting for a supplemental policy, I was denied coverage at all of the above insurers. Need to be cancer free 2 - 5 years to get coverage they said.

You could risk Original Medicare without a supplemental plan but take on the risk of paying 20% part B coinsurance, and the risk of no cap on out of pocket expenses. Then you could switch back to Medicare Advantage at a later date. (Also, there is never any underwriting involved if you switch back from Original Medicare to Medicare Advantage.)

My digging also uncovered the following. It appears to me, due to state law, if you lived in NY or CT you could not be denied a supplemental policy. Also, a radical idea to get a supplemental policy would to be to move from OK to any other state, in which case you would be guaranteed an Original Medicare supplemental plan without underwriting.

Regarding getting a referral to Mayo Phoenix from your physician, you have nothing to lose, they may very well accept you despite your insurance. (I recently got my Medicare Advantage denial of coverage overturned via an appeal from my radiation oncologist's insurance team.) While waiting on Mayo's decision you can go forward with lining up an appointment with another doctor or doctors of your choice. Best to line up appointments ASAP because you will probably have weeks of lead time to the actual appointment. You can probably do telehealth consults to avoid traveling, initially.

One other point, if you choose radiation therapy you will probably need hormone therapy as well. My doctor started me on hormone therapy right away (Orgovyx). I am guessing your doctor, once you find one, will want you to start hormone therapy right away while working through your insurance situation.

Best of luck to you. Keep reaching out to this group with your questions / problems. There are many members here with lots of knowledge and personal experience!

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PS : don’t know if this has been discussed here but I saved a lot of time by calling the places I wanted to be seen and requested their NPI # and/or Tax I d # , then when I called my Insurance they were more likely to be able to verify coverage at each institution. Isn’t Insurance fun?

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@rxgolfer

Hey you are pretty smart, Just saw my local Urologist/Surgeon at an Urology Specialty Clinic in Tulsa (I researched a little to find him) to go over PET, was impressed with their operation. Some of his colleagues have ties to UCSF in Ca. And he seems to be up to date on things. Started me on Orgovyx and is getting insurance auth for Zuniga. He started the process before my appt which I appreciated. Plan is to evaluate in 2 to 3 months and then decide on Surgery or Radiation he is ok with either. So I feel some relief (my wife is really relieved) to know that I am being treated now and have some time to figure everything out. Will keep option open of having surgery somewhere else. Appreciate all the info.

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@rxgolfer , you are most welcome. Glad to hear you saw your urologist and discussed things and got things in motion. One big caution I have for you, I am only a layman, but I think that if you want to have surgery, surgeons don't want you to start the Orgovyx and Zytiga before surgery. My feeling is you should run this topic by your urologist. If you want to have radiation instead of surgery then you typically want to start the Orgovyx and Zytiga as soon as possible. Also, to the best of my knowledge, Zytiga is usually accompanied by a prescription for Prednisone. But these topics are for the experts, the doctors, to handle. This is where you need to be your advocate and ask them.

Something else you might find helpful in your journey is attending a Zoom support group held weekly by AnCan.org. There is a meeting at 5 pm CST on Tuesday, Nov. 12, for High Risk / Advanced Prostate Cancer patients. The moderators of this group have a large body of accumulated knowledge about prostate cancer and know many doctors.. Usually the group attendees include a couple of internists and a psychiatrist. If you would like the group's observations and suggestions on your particular situation, and you are willing to share, log in to the meeting about 10 minutes early and let the moderators know you are new to the group. You will then be given priority to share your case toward the beginning of the meeting. I have learned a huge amount for this wonderful group. Check out their website and look for the High Risk prostate cancer group, one of many groups that they have.

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