(long read but those interested might find it useful)
Well, after beating the most serious part of a family history of diabetes and heart disease (I still have some arterial disease, genetic) but no intervention of even drugs are needed unlike all the males in my family which were a train wreck and had heart by-passes 20 years before my current age. Being the youngest I decided to not let that happen to me and I pretty much beat it, even though I have High LipoProtein A which nothing can be done about. I made sure to eat healthy. I also avoided diabetes (so far)
So, what do you know? since 2017 I have had very high PSA levels it started at a 4.7 and ended 7 years later at higher and way higher than 10___. Multiple MRI's and 4 Biopsies the first 3 over the years turned up nothing the last one in Sept 2024 turned up cancer.
Out of 12 samples taken only 2 came back, that was good and most likely because I was very aggressive on insisting on Biopies. One core showed a 3/3 which really doesnt call for action at that point. The other was a 3/4 which would be considered intermediate risk. This to me was VERY early stage and I wanted it gone.
So my regular urologist calls me up to see what I want to do. Watchful waiting, Radiation or Surgery. He clearly thought Surgery was not at all called for (but read on) I couldnt make up my mind, so there was a 4th option. A referral to Duke University Cancer Clinic almost one of the top 10 in the USA. We (my wife and I) got an appointment a few days before Thanksgiving 2024 to meet with
3 specialists who spent hours with us, just for us, just to review my case and get the options, individually one on one. One Oncology Radiologist, One Surgeon and One Medical Oncologist
My wife and I made the 3 hour trip and stayed in a hotel for the meeting the next day. FREAKING wonderful experience. The entire 5th floor devoted specifically to prostate and other cancers involving that area and we were there. Just for me.
Throughout ALL of this my Medicare ADVANTAGE plan paid for everything, not one hiccup not one objection, no stipulations.
Sadly all 3 specialists were very concerned. It caught my wife and I off guard. Here I was so happy that I found out about this cancer so quickly and being so proactive, almost insisting my Dr do a biopsy. But they explained to me, even though my PSA was down to 11.5 it had to be doubled to a PSA of 23 because of a drug I was on. I found out that all three doctors were to label me "High Risk" and bumped me up from a 7 to more like 8 to 10 (10 being the worst) with favorable outcome.
Also I found out if I wanted surgery it might not be successful do to heavy scarring from an appendectomy I had in the 4th grade that couldnt be closed up at the time, I was septic and almost died. So the surgeon said if I want surgery, robotics is out and he will do it by incision but a 20% chance I will wake up only to find out he cut me open and could not proceed. I was almost relieved in the sense that radiation and drug therapy was making more sense.
Based on the 3 doctors, they ordered a PSMA PET SCAN the latest state of the art scan to see if prostate cancer spread in my body. They were very concerned on how my PSA can be 23 and only 2 cores showing cancer, they felt something great must be going on. However the earliest available appt was Jan 2nd so they offered if I could get one sooner near where I live by all means do it. I told them I want to be treated there, they offered there are many doctors good near me and mentioned one name in particular of a Radio Oncologist that they love and wanted him up at Duke that is within 1 hour from me. I arraigned though the new doctor closer to me AND instant response of the doctors at Duke to get a PSMA SCAN ordered closer to me on Dec 20th and follow up with the new doctor near me on Dec 30th. So thanks to Duke within 2 hours the order for a PSMA PET SCAN arrived at a place closer to me. I was so impressed and also impressed with the staff at what will become my new doctor. All this time, unknown to me and handled by their offices approval was needed by my Advantage Plan, I only found out because I got a letter in the mail it was approved. Once again, no hiccups at all from my plan. The retail cost of this scan was $19,000 and it was determined as far as the scan can tell, the cancer has not spread to any other part of my body.
SO that ends my journey with my medicare advantage plan 2024/ NOT ONE QUESTION, NOT ONE HOLD UP. EVERYTHING PAID FOR.
With that said the current Advantage Plan wasnt being offered in the New Year 2025 and I could care less, I just pick a new one on line on the government website and as soon as you click, you are covered for 2025.
HOWEVER since the provider had decided (Aetna) not to offer this plan for 2025 I also had the right to go into standard Medigap Plan with NO underwriting and guaranteed acceptance. SO here I am with cancer and after thinking about it for a month or so ( I knew way ahead of time) I decided for 2025 to go into private Medigap Plan N which includes Government A and B plus private plan D for drugs. The cost is only $135 extra a month and of that, they will pay a gym cost of up to $110 a month! Net would be $25 including the drug plan so why not? Here I was about to battle cancer and there would not be much to think about.
Why did I decide to go to Medigap from an Advantage plans I so loved for 3 years? Simple, chances are it will cost me less for the year and to be honest, since I am new to the area I wouldnt have to worry about who is in network. I will say, after 2025 I plan but on going back to Advantage C if this all resolves itself. But I honestly do not know right now, though as of right now my Drs are in the Advantage Plan I would choose if I did there seems to be a little turmoil from year to year. The reason for this post is I read stories about Medicare and it's a wonderful system if you take advantage of it and use it, educate yourself right on the
https://www.medicare.gov/ website, you can read of days and study.
So the decision was made. Fantastic doctor here on the coast who my wife and I liked very much and they like him up at Duke that they wanted him to move up there, he didnt want too.
I am to undergo radiation and drug therapy. This doctor changed my threat designation a little bit. But he explained it means the same. From high risk favorable outcome to intermediate risk unfavorable outcome.
Yesterday, Wed, the drug was delivered to my house. I am to take one pill a day for 6 months. The drug cost is up to $3000 a month x 6 months roughly $18,000 but can be as little as $14,000 my cost is $2000 thanks to the new medicare drug out of pocket limit for 2025 or it would have been $8,000. My life as I know it will change for the next 6 months and I am not looking forward to it because of the drug but I want to live and make sure this thing is knocked out. The side effects are not going to be pleasant. However they are being aggressive in the sense they use this for high risk cases and in cases where it has spread.
Next week I am going to spend over another half day, meeting with two specialists (one of which is my new doctor) arranging and going over what will be my radiation schedule coming up which will be 5 days a week for 5 weeks as well as MRI and CT scan. This past Monday my regular urologist implanted 3 gold markers inside my body that the computer will use as markers in order to deliver the radiation to the proper area and avoid other areas as much as possible. My doctor tells me the survival rate is 90% for 15 years.
Prostate cancer sucks. The possible side effects of surgery or radiation are different but both can suck. Though immediate side effects for me with radiation will be almost none, 3 years down the road it POSSIBLY can rear its ugly head and even expose you in the future to cancers because of the radiation itself. My hope is, as time goes on medicine advances. One reason how far we have come was surgery was always preferred as late is 2006 now radiation is much more focused and that trend is almost reversed DEPENDING ON YOUR CASE>
SO FOR ALL OF YOU, MAKE SURE YOU ARE GETTING REGULAR CHECK UPS, DONT BE AFRAID OF YOUR DOCTOR, SURE EDUCATE YOURSELF, READ UP BUT ONLY SO YOU CAN TALK TO YOUR DOCTOR AND UNDERSTAND THE CONVERSATION. DO NOT RELY ON INTERNET FORUMS AND WHAT OTHER PEOPLE SAY. YOUR DOCTOR IS THE KEY. MY POST IS ABOUT BEING PRO ACTIVE IN DOING SO, DONT BE AFRAID OF TESTS, IF YOUR DOCTOR GIVES YOU THAT OPTION, TAKE IT, DONT PUT IT OFF.
From the sound of my cancer (they are all different in aggressiveness) I am so glad I was almost insistent on my 4th biopsy when my doctor gave me the choice to wait another six months or do it now.
As far as Medicare Advantage C plans and Medigap Plans plus D plan it comes down to cost and what you want and what you are willing to pay and possibly give up depending on the area you live. I loved my Advantage C plans but given the chance to go back (at least for now) Medicare A, B and private Medigap N plus private Plan D makes everything thoughtless for the extra monthly premium.
Medigap costs are pretty much fixed where the Advantage C plan can get pricey if your copays add up to many thousands and you have to stay in network. So right now, yeah, I am happy to be in Medigap the purpose of my post is to highlight my personal experience. Im sure the end result would be the same with my Advantage Plan. However should your Advantage C plan not be offered the following year, the system once again worked perfect. In the mist of a cancer diagnosis I got an unconditional acceptance into Medigap because my plan wasnt being offered and that gave me the option of choosing anything I wanted. If my plan was still offered I would think NO WAY would I have been accepted into Medigap and that is something each individual needs to know. Once you are in Advantage c you can only get out in the 1st year for guaranteed acceptance. UNLESS your Advantage C plan is no longer offered.
The system works and works very well, I am thrilled that I live in the USA and can get this latest technology, latest drug therapy that even my regular urologist never prescribed before. People trash our health care system, well, you will be thankful in cases like mine.
I was able to consult with a total of 5 specialists plus my regular urologist (who is specialist in his own right) and my cost was pennies. Making educated decisions is up to you, get opinions.
