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

I dont know. They said PSA of 23 for such a small amount of cancer was concerning and feeling the biopsy isnt telling the whole story.
The only thing that tells the whole story is the pathologist with the whole organ. Won't apply to you. Ask the radiologist why you have to have so many treatments. It's a fascinating story about cancer cells nucleus.
 
Good luck on this unwanted journey. I will be 68 in April. My last PSA happened to be a week ago and it is 0.56, one of the few things still good. It sounds like you have an absolute solid grip on all this and will defeat it without question. One of the best weapons is a great spouse and it sounds like you have that absolutely.
 
I would not recoment DaVinci. I had it 12 years ago and inspite of the surgeon saying after the surgery I would not be impotent-he lied. Maybe its better now. But I would NOT risk it (thats just ME)

I am happy with my Advantage plan. I am located near a major Medical Facility that has a Cancer Hospital. I don't forsee any bills say over $25. I am paying total $150 a month and we get $800 back on OTC stuff.

I was Paying 9300 per year for me and m y wife with the Supplemental.

Over all these years the supplemental cost $130,000 more than the Advantage.

God speed alarmguy with your cancer!!
 
I would not recoment DaVinci. I had it 12 years ago and inspite of the surgeon saying after the surgery I would not be impotent-he lied. Maybe its better now. But I would NOT risk it (thats just ME)

I am happy with my Advantage plan. I am located near a major Medical Facility that has a Cancer Hospital. I don't forsee any bills say over $25. I am paying total $150 a month and we get $800 back on OTC stuff.

I was Paying 9300 per year for me and m y wife with the Supplemental.

Over all these years the supplemental cost $130,000 more than the Advantage.

God speed alarmguy with your cancer!!
You have zero "out of pocket" before anything kicks in?
 
I would not recoment DaVinci. I had it 12 years ago and inspite of the surgeon saying after the surgery I would not be impotent-he lied. Maybe its better now. But I would NOT risk it (thats just ME)
Well, I think a chance of impotence (which is dramatically reduced with the DaVinci robot, but not eliminated) is still considerably better than death, no? Of course a lot of this comes down to the surgeon who is using the equipment and some are clearly better than others. Unfortunately, due to the scarring, laparoscopic isn't an option for the OP anyway, based on what he's shared here.

My good friend's dad was also diagnosed around the same time as my father, but he was older than my dad (my dad was about the same age as alarmguy when he had his surgery) and he was advised to go the other route. He got radiation and chemo, which seemed to work initially. Unfortunately, the cancer eventually came back, in a big way, and he died. This also happened to my dad's uncle.

The argument made by my dad's GP was that yes, radiation could work, but the cancer could still come back, and he'd have to keep getting checked and, if necessary, treated. You are basically just managing it. This decision, and the decision to sometimes even do nothing at all, is based on how aggressive it is, and the age of the person. If you are 90, and it's not aggressive, they'll just let it go, because you'll die before it kills you. On the other hand, wholesale removal of the prostate, assuming they get it all, has an extremely high degree of success for being totally cancer free with no recurrence, but this may only make sense if you otherwise have a good outlook lifespan-wise.

Now, I'm not familiar with your situation, and each one is different, but if yours was aggressive and the urologist thought that full removal was the safest route (like they did with my father) then that may have been the right choice, regardless of the unfortunately side effect of impotence (which, my father managed to avoid).
 
Are you getting the proton radiation or the "regular"? My MiL had regular radiation. It was not fun. Primarily, because the radiation facility was in a city hospital that was 15 miles from her house in traffic and forced valet parking. Hopefully, you have a local facility with easy parking and a stress-free drive. Luckily, my wife's employer arranged for a driver.

What drug are they giving you?

Wishing you the best and please keep us updated.
I’ll get back to you on the radiation. All I do know is it is very precise.

The drug is Orgovyx. I believe approved only recently by the FDA in 2023.
 
You have zero "out of pocket" before anything kicks in?
There on no deductibles with advantage C plans. Let me correct that there are very few plans that have a deductible so you should be on the lookout if that is not something you .
You make co-pays and depending on the plan there is a maximum out-of-pocket limit should you get seriously ill.
The only thing that bothers me a little is getting trapped with ever increasing out-of-pocket limits. Depending on what part of the country, there’s no way to make a blanket statement and there are a couple good advantages C plans still in my state with low out-of-pocket, but they are going up.

It’s easy to check the plans in your area using one source.
Just go to www.medicare.gov create a username and password.
You will be showing all the plans, and I mean all the plans of all the options in your area. What is even more cool when you sign up for one if it’s an advantage C plan you just click to sign up and the government takes care of everything. After all their paying.
 
Bottom line: You will beat this.


As a side note, my Humana plan was killed as well, got the golden ticket, so now I am buying ala carte so to speak. Regence. $162 mo/premium. Still have not picked a dental plan. Seems the coverage about the same - point being you remain correct about Advantage plans to this day. Thanks.
I’m paying Blue Cross Blue Shield of North Carolina $135 for plan N per month and this is one where I opted to get what they call their FIT option that will pay up to $110 per month for a gym
My plan D coverage is through Well care and the premium is zero. That coverage took affect once my advantage C plan ended on January 1 and here they are paying about $12,000 for this drug I’ll know more of what they actually pay once I see the claims forms
 
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Best of luck with your treatment. My dad was diagnosed I believe 5 years ago and his GP wasn't budging on treatment selection, which was complete removal via the DaVinci robot at Toronto General Hospital. He's been cancer free now (PSA of 0) for 4 years and side effects, beyond having to learn to pinch off his bladder, were minimal (still has use of).
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.
 
I would not recoment DaVinci. I had it 12 years ago and inspite of the surgeon saying after the surgery I would not be impotent-he lied. Maybe its better now. But I would NOT risk it (thats just ME)

I am happy with my Advantage plan. I am located near a major Medical Facility that has a Cancer Hospital. I don't forsee any bills say over $25. I am paying total $150 a month and we get $800 back on OTC stuff.

I was Paying 9300 per year for me and m y wife with the Supplemental.

Over all these years the supplemental cost $130,000 more than the Advantage.

God speed alarmguy with your cancer!!
Well, I think a chance of impotence (which is dramatically reduced with the DaVinci robot, but not eliminated) is still considerably better than death, no? Of course a lot of this comes down to the surgeon who is using the equipment and some are clearly better than others. Unfortunately, due to the scarring, laparoscopic isn't an option for the OP anyway, based on what he's shared here.

My good friend's dad was also diagnosed around the same time as my father, but he was older than my dad (my dad was about the same age as alarmguy when he had his surgery) and he was advised to go the other route. He got radiation and chemo, which seemed to work initially. Unfortunately, the cancer eventually came back, in a big way, and he died. This also happened to my dad's uncle.

The argument made by my dad's GP was that yes, radiation could work, but the cancer could still come back, and he'd have to keep getting checked and, if necessary, treated. You are basically just managing it. This decision, and the decision to sometimes even do nothing at all, is based on how aggressive it is, and the age of the person. If you are 90, and it's not aggressive, they'll just let it go, because you'll die before it kills you. On the other hand, wholesale removal of the prostate, assuming they get it all, has an extremely high degree of success for being totally cancer free with no recurrence, but this may only make sense if you otherwise have a good outlook lifespan-wise.

Now, I'm not familiar with your situation, and each one is different, but if yours was aggressive and the urologist thought that full removal was the safest route (like they did with my father) then that may have been the right choice, regardless of the unfortunately side effect of impotence (which, my father managed to avoid).
@OVERKILL I know we agree on nothing but as respectful as I can (which I always tried to do) I want to respond to these two posts and point of this thread is the hope that all these comments HELP others configure a line of questions for their doctor to answer in regard to their specific situation.
I stress knowledge is key, armed with questions to ask their doctor because not one situation applies to everyone, every medical institution along with medical equipment that they possess and knowledge to use them.

Also advances move sometimes at break neck speeds so we can not compare this person to that person you may know vs studies of thousands of people. Nor the latest and greatest equipment used, whether surgery or radiation/drug. Throw in right down the the current drug I am taking was only approved for use 2023 (where ins would pay for it) A tier 5 drug/special use only for Prostate cancer.

Also each individual case is different, how many biopsy cores contained cancer and what is the PSA level in relation to those cores.
ALL THESE THINGS (not yelling but dont want others to miss my point) are what you discuss with your doctor.
One thing you mentioned about me that isn't clear, my decision was not based on the problem with scarring. I still could have went forward with it, with a doctor at Duke University who believes in open surgery over robotic. Robotic wasn't an option for me anyway.
With that said, knowing there was a 20% chance the surgery would not work DID HELP my decision. But going into this I learned so much more to follow;

However in that almost half day event at Duke and then a second event on the coast where I live, all well regarded specialists.
Here is what I was asked, this is for ME ONLY and why everyone needs to sit with their doctors, take their time and also get another opinion.
All doctors asked me what is most important to me and they gave advice based on my situation/condition with my current cancer. listed in order are my preferences.

1. My biggest concern was incontinence - I was told hands down the radiation and drug I was going to take would cut incontinence risk in half so much so it's not even a concern. I was told surgery would assure me of incontinence for possibly up to a couple months but can be worked on to a satisfactory outcome. A percentage (single digits but still significant never achieve full control after surgery but are other things that can be done possibly.

2. Sex - A. Second was sex. I was told hands down radiation will preserve my sex life, meaning it won't guarantee that you may not need a pill. However it will be expected to be pretty normal taking into account you may need a pill.
With surgery as you mentioned it is true that an experienced doctor may have a good chance of preserving the nerve bundle around the prostate when it is removed there never can be a guarantee. Not every human is the same AND it depends how much they have to cut to get all the cancer making it unavoidable at times and even with injections or a pill some never recover from that.

This is one big one for me even if sex worked after removal ... = If sex after removal does work, there is no fluid because the gland is gone, so ... pick and chose what is important that in itself is another side effect I dont want, no fluid. the gland is gone.


So those were the two most important for me.
Then this sealed the deal. I was told but all doctors people think (I saw this also in your post) when you remove the prostate the cancer is gone, you are done for life. I thought this too (and for the 50th time I say to talk to your doctor) Removing the prostate is NO guarantee that the cancer has been completely removed from your body. There can be some even a few cells left in the "stem" surrounding tissue, lymph nodes, bone that was not detected. So here are the facts I was presented with by my doctors, one of which I was in the radiology building. Around 25% of ALL their patients who undergo radiation therapy each year previously had their prostate removed. I had no clue this happened and WHY even years later the PSA levels of people who had them removed are still monitored.
He told me again, in my case, I can just about consider my treatment a cure, the cancer dead but will be followed up with PSA tests starting at 3 months.

Anyway, 1 & 2 were most important to me and in my case I posted what was best for me in my situation. Then learning that I would still be PSA monitored for life after removal surgery and 25% chance it will come back sealed it further, then the possilbilty that surgery might not be able to be performed was last but also helped my decision because it was still an option.
One positive of surgery IN MY CASE (I say that again so everyone knows this can only be determined with your doctor) is if and when the cancer does return, radiation is viable to treat it. Not so if I had radiation instead or removal, they won't do it twice at this point in time and will use other means or drugs again. Since medical advances moves so fast, if it did come back after radiation and drugs I would hope a good solution is already found. There are indications as radiation becomes more and more focused it maybe viable in the future.

Ok, last but not least, my radiation doctor emphatically told me (again in my case) my radiation/drug can be called a cure. However the danger with radiation still can have serious side effects, such as burning other parts of the body rectum ect. He indicated in the small amount of cases with the new technology it is much less frequent and can be managed if it happens. Also the surrounding tissue is exposed to .... RADIATION ... so other cancers can develop in time.years. Yet these new CT guided machines and gold implants focus much better than what was available even in the single digit 2000's (or something like that)

SO bottom line, last appointment with a specialist AGAIN IN MY CASE. A recent study of (I forgot how many men but study is used in the medical community) men who had prostate cancer they followed for 15 years, comparing radiation and removal. The survival rate was statistically the same. 90% in both cases made it to the 15 year mark which was considered a cure. However (I dont want to mis quote the study) a significant amount of those who had prostate removed required follow up radiation because the cancer came back.

This is why I say this prostate cancer sucks. There is no right or wrong in my case. I will live as long either way, so I was told to tell them what was most important to me and from there they gave me numbers and also their experience. I would suggest anyone in this situation do the same and do not rely on social media for anything more than to MAKE A LIST OF QUESTIONS FROM SOCIAL MEDIA TO ASK YOUR DOCTOR> and if need be ask more doctors, take your time dont rush, its a lifelong decision and NO ONE can say what is right for you.
Gosh this is so long, got to watch TV with the wife, can't proof read but should be ok.
 
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One thing you mentioned about me that isn't clear, my decision was not based on the problem with scarring. I still could have went forward with it, with a doctor at Duke University who believes in open surgery over robotic. Robotic wasn't an option for me anyway.
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.
Then learning that I would still be PSA monitored for life after removal surgery and 25% chance it will come back sealed it further, then the possilbilty that surgery might not be able to be performed was last but also helped my decision because it was still an option.
One positive of surgery IN MY CASE (I say that again so everyone knows this can only be determined with your doctor) is if and when the cancer does return, radiation is viable to treat it. Not so if I had radiation instead or removal, they won't do it twice at this point in time and will use other means or drugs again. Since medical advances moves so fast, if it did come back after radiation and drugs I would hope a good solution is already found. There are indications as radiation becomes more and more focused it maybe viable in the future.
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.
This is why I say this prostate cancer sucks. There is no right or wrong in my case. I will live as long either way, so I was told to tell them what was most important to me and from there they gave me numbers and also their experience. I would suggest anyone in this situation do the same and do not rely on social media for anything more than to MAKE A LIST OF QUESTIONS FROM SOCIAL MEDIA TO ASK YOUR DOCTOR> and if need be ask more doctors, take your time dont rush, its a lifelong decision and NO ONE can say what is right for you.
Gosh this is so long, got to watch TV with the wife, can't proof read but should be ok.
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.
 
I’ll get back to you on the radiation. All I do know is it is very precise.

The drug is Orgovyx. I believe approved only recently by the FDA in 2023.
That is a hormonal drug. The drug that I worked on developing was a MUC1 inhibitor.
 
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