My Journey Begins, Cancer and Medicare, Maybe this will help some others one day

[alarmguy]

Because if you were ten years older the treatment may not be as extensive. They may not worry about the issue as much....if you get my drift.
But best of luck on your treatment.
So much good info for those who put down Medicare Advantage Plans-excellent info.

It occurred to me, my evaluation was so complete up at Duke University Cancer Clinic of which was all paid for by my Advantage C plan for 3 doctors to consult with my wife and I plus a hospital charge.

My cost was $10 per doctor co-pay and $10 for hospital (I guess because that is where the meeting was and use of the facilities) $40 to talk to 3 top professionals, looking into their backgrounds, many research grants, one of them also a professor ect. You reminded me of something, they also discussed treatment options because I was right at "that age" to go either way. However that was in regard to surgery or radiation. The therapy the same, it still bothers me but the good news is the new PSMA scan didnt pick up any spread that is about as good as you can get. A scan is not absolute but it certainly helps!

Anyway, I thought of your post this morning as the details of another bill came in for the month of Dec (remember as of now I am no longer in an Advantage Plan for 2025 but in Medigap N for this year with also Part D Drug. Both N and D are private insurance that picks up what Medicare A and B doesnt pay.

So the 2024 year Advantage C approved PSMA PET SCAN cost me another $10 *LOL* AS I mentioned before I love Advantage C plans and after this year I may or may be back in one I say almost certain but one thing bothers me if I go back into one you are stuck with ever increasing out of pocket limits and that bothers me. TO switch back to Medigap it isnt guaranteed that they take you unless that plan gets cancelled. Some states like NY I believe require no conditions to get back into Medigap so if this concerns someone you should check your state, there are a few with this rule.

This was my Pet Scan bill for Dec, only the pet scan bill The doctors consultation and hospital use were maybe up to $800 and my cost was $40

Ok, so now, this month Jan 2025 is the first time since turning 65 I have elected Medigap. Just to show the system works and works well, when I signed up for the Part D drug plan, all I did was look at prices online and on Medicare Website which I have an account. I Clicked to join that private drug plan part D on the government website, simple as that, done.. I still dont understand why but my cost is $0 so here I now am, as a cancer patient and clicked on the Medigap website and I have coverage.
Before I did, I checked the plan website to make sure the drug was covered, bottom line is if medicare says it's an approved drug I believe it had to be there and it was.
SO for the heck of since I was just checked to make sure it was approved the doctors didnt think so and I knew before them I simply put in what the cost would be if obtained at CVS even though now that it is prescribed its actually coming from the Medical Facility Speciality Pharmacy and I think the cost is higher then what I am going to show you.

Also it is sold only 30 days at a time which I didnt know, meaning an order has to go in every 30 days from the medical center. SO the pricing here is 90 day supply, not 30. CVS would have charged $7,512 for the first 90 days and then another $7,512 for the next 90 days. I believe but forget the specialty pharmacy at the hospital charges $3000 to $4000 a month and jsut like CVS I am only responsible for a one time out of pocket limit of $2000 for 6 months of a drug that will cost more than the $15,024 listed here.

 

[alarmguy]

That is a hormonal drug. The drug that I worked on developing was a MUC1 inhibitor.

Yes, It blocks Testosterone as PSA cancer lives off of Testosterone, the blocker starves the cancer. Also Lupron is the most commonly used since it has been around so long HOWEVER it has many uses. Orgovyx is limited by drug plans (at least mine) specific to prostate cancer. The drug is used for prostate cancer that has spread and high risk which they labelled me as. Standard procedure with radiation.
Im hoping you guys get these new drugs to market where they are 100% considered cure in the next 10+ years. S you may know if a cancer does come back it is possible it can "Learn" to live without Testosterone. Though they are calling me as a "cure" when I am done, of course with all the side effects.

 

[alarmguy]

I’m praying for you sir

Thank you!
I hope you are still doing well!

 

[alarmguy]

Hoping for successful treatment and a speedy recovery for you! You and your doctors have got this!!

Thank you! I honestly feel I do, meaning as far as modern medicine can give me, my wife and I REALLY did our due diligence and feel we have a good handle on it.

 

[alarmguy]

I agree. The robotic prostate surgery was a piece of cake for me and now all of my PSA readings since 2012 have been below zero.

Those stupid prostate cancers can metastasize to other parts of the body.

In my view, robotic removal is the best choice.

That is awesome! Yeah, the cancer is a tough one for sure.
My best friend from childhood had robotic, about the same time as you, maybe a little later. Still doing well. He had it done at Sloan in NY. I also know another person, was worked related who had the cancer come back 7 years after removal.

Unrelated to the prostate my friend almost died after the operation. One of those very rare cases he developed lung clots a few days after the procedure and ended up in intensive care. As he recovered he told me that the doctor told him, "I dont know how you lived"
Certainly NOT a knock on the procedure just one of those rare events that can happen with any surgery. I do know one surgeon who commented to me that he is uncomfortable how long patients are put under with robotic versus scalpel but absolutely no bearing or concern with me. I think I would trust robotic more but doctors can be funny creatures, some believe how they do something is best... oh but wait, that is BITOG too!

 

[Nukeman7]

First and foremost, I am sorry to hear of your diagnosis and wishing you the best outcome from this situation. Your contributions on BITOG are appreciated and helpful to the board members.

FYI, I have been enrolled in the same $0 WellCare Plan D since 2022. For convenience, you might want to see if you can get a 90 day refill of Orgovyx through their Express Scripts mail order pharmacy (owned by Cigna). My research on WellCare's site shows a cost of $1999.42 for the 90 day refill through Express Scripts (see below). In any event, your $2000 annual out-of-pocket limit will cap that expense for you.

 

[alarmguy]

Yes, that's the bit I was talking about. The robot (DaVinci) is insanely precise and is far more likely to get all of the gland (reducing chance of recurrence), vs the scalpel (based on what we were told at Toronto General). It's also less likely (something like 75% chance of keeping erectile function) to cause impotence due to the added precision.

So, my understanding was the above, that the DaVinci robot wasn't an option for you, and, based on my understanding of the scalpel technique, I can appreciate and totally understand why you went the route you did.

Yeah, that's why my dad was checked several times to confirm his PSA remained at 0, to confirm they got it all with the robot. Because, as you note, sometimes they don't (though this is much rarer than vs the scalpel, as noted) and then you may need radiation after the fact.

Absolutely. Be your own advocate, talk to your doctors and specialists and make an informed decision, which you've done, based on your situation, which is all anybody can do, because each situation is unique.

As I said in my first post in this thread, I wish you all the best. I hope things go as well as they possibly can and that you are cancer free. We may disagree on things on here a lot of the time, but I don't wish you ill will and cancer is something I'd never wish on anyone. Godspeed and good health.

Thank you!
You know. I thought about you last night, you mentioned a few family members have had prostate cancer or at the least your father?

When I was at Duke, they gave me a card and said if I was interested the company does genetic testing for cancer genes. In my case to see, I think its one or two specific genes that is linked to heredity prostate cancer and the same gene is responsible for breast cancer in woman.
You either have the defective gene or not, if not, then the cancer is from other factors.
I decided to do it for my kids, both daughter and son as if the bad gene showed up maybe they could be extra diligent as they get older. Good news is my cancer is not heredity, my genes good. I have no idea if it makes a difference as far as re-occurrence but maybe I will look into it.

The test was free, yeah, I know they are building a data base etc... and giving away your DNA may unsettle some. All you do is spit in a tube and send it off in the mail. I selected to destroy the sample once the results were finalized.
Not sure if this is available up there - AHH ... only open to people with the cancer ... anyway if it helps anyone interested.

Prostate Cancer Promise – In The Fight Against Prostate Cancer, Your DNA May Be The Most Powerful Tool

www.prostatecancerpromise.org

 

[OVERKILL]

Thank you!
You know. I thought about you last night, you mentioned a few family members have had prostate cancer or at the least your father?

When I was at Duke, they gave me a card and said if I was interested the company does genetic testing for cancer genes. In my case to see, I think its one or two specific genes that is linked to heredity prostate cancer and the same gene is responsible for breast cancer in woman.
You either have the defective gene or not, if not, then the cancer is from other factors.
I decided to do it for my kids, both daughter and son as if the bad gene showed up maybe they could be extra diligent as they get older. Good news is my cancer is not heredity, my genes good. I have no idea if it makes a difference as far as re-occurrence but maybe I will look into it.

The test was free, yeah, I know they are building a data base etc... and giving away your DNA may unsettle some. All you do is spit in a tube and send it off in the mail. I selected to destroy the sample once the results were finalized.
Not sure if this is available up there - AHH ... only open to people with the cancer ... anyway if it helps anyone interested.

Prostate Cancer Promise – In The Fight Against Prostate Cancer, Your DNA May Be The Most Powerful Tool

www.prostatecancerpromise.org

Thanks for the info!

Yes, it's the males on my dad's (and his father's) side that seem to have a higher incidence of prostate cancer (though my grandfather didn't have it). Several of my dad's uncles and a few others who probably died from it and we didn't know, seem to have had it. I know my sister sent them (my parents) some genetic thing (23andMe?) that supposedly tests for cancer genes and stuff, I'll ask dad about it next time I'm over.

 

[alarmguy]

First and foremost, I am sorry to hear of your diagnosis and wishing you the best outcome from this situation. Your contributions on BITOG are appreciated and helpful to the board members.

FYI, I have been enrolled in the same $0 WellCare Plan D since 2022. For convenience, you might want to see if you can get a 90 day refill of Orgovyx through their Express Scripts mail order pharmacy (owned by Cigna). My research on WellCare's site shows a cost of $1999.42 for the 90 day refill through Express Scripts (see below). In any event, your $2000 annual out-of-pocket limit will cap that expense for you.

View attachment 259248

Wow, big difference Im not sure why but thank you. I guess I wont bother though because either way I have to pay the $2000 out of pocket for 6 months supply. I guess you saw my post, when going to Wellcare through their site I posted a copy on page 3 of $5,500 instore at CVS for 90 days... But thank you, maybe I will try to go in again, yet I wont change anything since either way I have to pay $2000.
OH!!! WAIT a minute are we posting the same thing? Are you saying that your post is showing what you pay? Because that is what my post shows too.
(its ok, if I am confused. I have been in here far too long the last two days*LOL*_
Check what I found on Wellcare site a while back in post #41 are we talking about the same thing? But still I am out 2k

ALSO - it seems they will only fill 30 days at a time and I saw that on Wellcare site, I also called Wellcare and she confirmed this drug as to be renewed every thirty days and that I can not get a 90 day supply. (yes I know their website says otherwise, and no saying the girl was correct but they did have me on hold yet my health care provider says the same) Maybe mail is different but anyway, my cost the same and it puts the burden on my health care provider who has been incredible to make sure I get my supply every 30 days. They sent it to my house by courier. I took my first dose on Wed which was a triple dose to start. Im wondering if and when the hot flashes will come *LOL* (not really laughing)

Thanks again

 

[wlk]

Sorry to hear of your story but thank you very much for sharing. My uncle died of prostate cancer 20 years ago, and to see what he went through was horrible. It spread to his bones and was extremely painful. You definitely have to be an advocate for yourself. I pray you have a complete recovery and wish you the best.

 

[ARCOgraphite]

Hi. I just read through this thread, I Hope things go well for you and your family, @alarmguy

- Arco

 

[alarmguy]

Sorry to hear of your story but thank you very much for sharing. My uncle died of prostate cancer 20 years ago, and to see what he went through was horrible. It spread to his bones and was extremely painful. You definitely have to be an advocate for yourself. I pray you have a complete recovery and wish you the best.

Yes, thank you, and from what I hear that is very painful what your uncle went through.
Absolutely you need to be your advocate and most of all don't be afraid of tests and biopsies. Take it from me, I had 4 of them since 2017. First one was asleep but they dont do that anymore. It's no fun at all but the actual procedure is about 15 minutes or so. So you endure it and then it is over. My PSA was so crazy the last year I CLEARLY let my doctor know I wanted another one (my 4th) he suggested wait 6 months which I did since my last one at the time was 2021 or 22. Then just last Sept 2024 I reminded him 6 months earlier I wanted one and he suggested I wait until Sept 2024 so at that point he gave me the option of doing one or waiting another 6 months. I made clear I wanted it done.

Thank you for the good wishes. I REALLY have a good feeling about this, yeah the side effects are going to be there but it will assure me that I live and even though labeled they way they did, I still caught it early by keeping track on my conversations with the doctor. Dont shy away from tests/ I have a sibling who has his entire life, its amazing he is still alive, if barely because even to this day, for some reason, he thinks he knows better than the doctor and always puts EVERYTHING off until things get worse. Dont play doctor, dont use the internet to play doctor. DO use the internet to become educated so you can have a conversation with your doctor and understand your options and terminology better. Ive learned so much and ... well that will be another post when time.

 

[alarmguy]

Hi. I just read through this thread, I Hope things go well for you and your family, @alarmguy

- Arco

Thank you! I feel good about my up coming treatments, yeah, lots of unknowns, I do know I will live, but this crappy cancer.

 

[Al]

One other thing. The biopsies are good but they can not be fully certain the cancer is "incapsulated" in the prostrate. My doc was very certainly though that it was encapsulated and it was. The biopsy of the removed prostrate confirmed it and no future cancer was supposed at 99%. In my case it proved to be true..

 

[wlk]

Yes, thank you, and from what I hear that is very painful what your uncle went through.
Absolutely you need to be your advocate and most of all don't be afraid of tests and biopsies. Take it from me, I had 4 of them since 2017. First one was asleep but they dont do that anymore. It's no fun at all but the actual procedure is about 15 minutes or so. So you endure it and then it is over. My PSA was so crazy the last year I CLEARLY let my doctor know I wanted another one (my 4th) he suggested wait 6 months which I did since my last one at the time was 2021 or 22. Then just last Sept 2024 I reminded him 6 months earlier I wanted one and he suggested I wait until Sept 2024 so at that point he gave me the option of doing one or waiting another 6 months. I made clear I wanted it done.

Thank you for the good wishes. I REALLY have a good feeling about this, yeah the side effects are going to be there but it will assure me that I live and even though labeled they way they did, I still caught it early by keeping track on my conversations with the doctor. Dont shy away from tests/ I have a sibling who has his entire life, its amazing he is still alive, if barely because even to this day, for some reason, he thinks he knows better than the doctor and always puts EVERYTHING off until things get worse. Dont play doctor, dont use the internet to play doctor. DO use the internet to become educated so you can have a conversation with your doctor and understand your options and terminology better. Ive learned so much and ... well that will be another post when time.

Do you mind sharing the medication that was masking the PSA results? I try to be proactive as I have gotten older and just convinced my pcp to start PSA testing this year.

 

[alarmguy]

Do you mind sharing the medication that was masking the PSA results? I try to be proactive as I have gotten older and just convinced my pcp to start PSA testing this year.

Absolutely!
I'm not sure of your use of the word mask since I dont know the particulars and I have to tell you, I am a bit upset with my primary Urologist who I like as far as a person, when the drug didnt bring down the PSA more than it should have, He told me at the time he would like to see 8.5 from about 15, but it came in (rough number at 9.7) he said, "well its close" I told him I have no objection to another Biopsy. He said let's wait 6 months, I said ok. 6 months later it's 11.8! After I reminded him of our last discussion he gave me a choice at that time, wait ANOTHER 6 months or biopsy, without hesitation I said biopsy!

At no point did he mention anything about doubling that number. He did mention at the time that he would like to see it go down by about half, yet when it didnt, he said lets give it another 6 months.

It was up and Duke Cancer Clinic that ALL THREE specialists were alarmed of me showing a small biopsy cancer with such as high PSA because that 11.8 had to be doubled to over 20, 23 to be exact, this placed me now into the high risk category on the Gleason scale! All three were troubled.

The drug is actually shown in another post on this page or before, up until this cancer I only took two drugs, a statin and the drug Finasteride and a baby aspirin.
Anyway, Finasteride is the drug, its for an enlarged prostate, makes it easy to urinate. What is does, over a 6 month period of time is shrink the prostate by denying it something (I forgot) and also lowers your PSA. It's considered safe according to my doctor and is the same drug prescribed at a much smaller dose for hair loss. Hair loss solution was discovered by men who was taking the drug for the prostate. I abbrev to admit, I had no issues with it at all, and actually pretty much solved everything, except I had cancer *LOL*

Now here I am, spoke to so far 4 cancer specialists plus another next week and my regular urologist. The cancer specialists all are commonly aware of doubling the number. OF course, bring this up with your doctor and ask his advice if you take it.

You can also simply search on the internet too, then bring it up with your doctor.

"Conclusions: To interpret serum PSA levels in men with BPH treated with finasteride for 6 months or longer, the serum PSA level should be multiplied by 2 and compared to either age-independent or age-specific upper limits of normal for serum PSA in untreated men with BPH. On the basis of limited data the sensitivity and specificity of this approach appear to be similar to those of the corresponding PSA limits in untreated men with BPH."

Source (plus you can search on your own and make sure your doctor is aware) Contained in this link are many sources, it's been known a long time. If you do have an enlarged prostate the drug did work for me, I would tell anyone to talk to their doctor about it if what they have doesnt work. You notice I always say, talk to your doctor because some people (like a sibling I know) plays doctor on himself with the Internet information. He is now a train wreck. However, being educated to have an intelligent discussion with your doctor because of the internet would be proactive and prudent. Actually the specialists at Duke endorsed what I did, I told them I researched all I can so when I was there to talk to them I can have an informed discussion with them. It was great and to show you how you can miss things, I was clueless (and my wife) still, when they told me my PSA is not 11.8 it has to be doubled to over 20.

The effect of finasteride on prostate specific antigen: review of available data - PubMed

To interpret serum PSA levels in men with BPH treated with finasteride for 6 months or longer, the serum PSA level should be multiplied by 2 and compared to either age-independent or age-specific upper limits of normal for serum PSA in untreated men with BPH. On the basis of limited data the...

pubmed.ncbi.nlm.nih.gov

 

[wlk]

Absolutely!
I'm not sure of your use of the word mask since I dont know the particulars and I have to tell you, I am a bit upset with my primary Urologist who I like as far as a person, when the drug didnt bring down the PSA more than it should have, He told me at the time he would like to see 8.5 from about 15, but it came in (rough number at 9.7) he said, "well its close" I told him I have no objection to another Biopsy. He said let's wait 6 months, I said ok. 6 months later it's 11.8! After I reminded him of our last discussion he gave me a choice at that time, wait 6 ANOTHER 6 months or biopsy, without hesitation I said biopsy!

At no point did he mention anything about doubling that number he did mention at the time that he would like to see it go down by about half, yet when it didnt, he said lets give it another 6 months. It was up and Duke Cancer Clinic that ALL THREE specialists were alarmed of me showing a small biopsy cancer with such as high PSA because that 11.8 had to be doubled to over 20, 23 to be exact, this placed me now into the high risk category on the Gleason scale!

The drug is actually shown in another post on this page or before, up until this cancer I only took two drugs, a statin and the drug Finasteride and a baby aspirin.
Anyway, Finasteride is the drug, its for an enlarged prostate, makes it easy to urinate. What is does, over a 6 month period of time is shrink the prostate by denying it something (I forgot) and also lowers your PSA. It's considered safe according to my doctor and is the same drug prescribed at a much smaller dose for hair loss. Hair loss solution was discovered by men who was taking the drug for the prostate. I abbrev to admit, I had no issues with it at all, and actually pretty much solved everything, except I had cancer *LOL*

Now here I am spoke to so far 4 cancer specialists plus another next week and my regular urologist. The cancer specialists all are commonly aware of doubling the number. OF course, bring this up with your doctor and ask his advice if you take it.

You can also simply search on the internet too, then bring it up with your doctor.

"Conclusions: To interpret serum PSA levels in men with BPH treated with finasteride for 6 months or longer, the serum PSA level should be multiplied by 2 and compared to either age-independent or age-specific upper limits of normal for serum PSA in untreated men with BPH. On the basis of limited data the sensitivity and specificity of this approach appear to be similar to those of the corresponding PSA limits in untreated men with BPH."

Source (plus you can search on your own and make sure your doctor is aware) Contained in this link are many sources, it's been known a long time.

The effect of finasteride on prostate specific antigen: review of available data - PubMed

To interpret serum PSA levels in men with BPH treated with finasteride for 6 months or longer, the serum PSA level should be multiplied by 2 and compared to either age-independent or age-specific upper limits of normal for serum PSA in untreated men with BPH. On the basis of limited data the...

pubmed.ncbi.nlm.nih.gov

Thank you very much, as I have been on Finasteride for 2 or 3 years now for what my PCP thinks is internal narrowing of the prostate. Although the prostate is not enlarged, it still has some urinary issues. I went to a urologist in Nov, and he is trying a new med as he thinks it may be bladder-related but kept me on finasteride for now. I see him again next month for a follow-up. I appreciate the info as I have been reading about side effects of finasteride lately, but this was not one of them. I will keep it in mind when I get blood work and psa checked in March.
Used masking for reference that your urologist forgot to double the result.

 

[alarmguy]

Thank you very much, as I have been on Finasteride for 2 or 3 years now for what my PCP thinks is internal narrowing of the prostate. Although the prostate is not enlarged, it still has some urinary issues. I went to a urologist in Nov, and he is trying a new med as he thinks it may be bladder-related but kept me on finasteride for now. I see him again next month for a follow-up. I appreciate the info as I have been reading about side effects of finasteride lately, but this was not one of them. I will keep it in mind when I get blood work and psa checked in March.
Used masking for reference that your urologist forgot to double the result.

Oh, yes, my, good for you that you will be getting a PSA check, then you can bring up in the conversation about doubling that number, even print it out for him

 

[doitmyself]

Thank you for sharing all of this important information. I need to study it more. My older brother did brachytherapy about 3 years ago and is doing very well.

I wish you Godspeed.

 

[zrxkawboy]

I wish you the best! My dad was diagnosed with prostate cancer last year at 73. He chose surgery, but there were complications and the surgeon stopped the surgery before he got very far. So, Dad had radiation treatments, and so far is doing well. His Dr warned him about probable nasty side effects during the treatment, but the worst thing he experienced was extreme fatigue.

Coincidentally, I was diagnosed with kidney cancer in May, and had a nephrectomy in August, so Dad and I were being treated for cancer at the same time. I just had my first CT scan, and everything looked good. I will have scans every 6 months.