I jad the biopsy last year about this time awake. I didn't find it painful at all.
Your other question is a bit more complicated to answer. There are a number of factors. Gleason score, biopsy results, MRI results, PSA...over time.
My Journey Begins, Cancer and Medicare, Maybe this will help some others one day
- Thread starter alarmguy
- Start date
Your other question is a bit more complicated to answer. There are a number of factors. Gleason score, biopsy results, MRI results, PSA...over time.
It really doesn’t matter with an advantage plan. You’re getting a free at least in my case $1750 a year towards the implants that I received.
Not only that, but the difference that you pay is the negotiated price with the insurance company, which is always boatloads lower than what you would have to pay if you are Joe public without insurance and forced to pay retail
There is never a waiting period for dental in a
advantage C plan.
Also check ups and 2 to 3 cleanings a year are free as well as x-rays
This is something you do not get with plain Medicare
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I found the four biopsies I have had, first one was asleep, then three of them awake very unpleasant. However, the actual procedure is over with in less than 15 minutes tops. And a few minutes after that, you’re actually walking out of the office and driving home.
So I always advocated for the doctors not to wait to do another biopsy. I think I was rewarded catching this cancer very early and it would’ve been caught even more early. If my doctor didn’t make me wait six more months before he did it and even then he was offering to wait another six months. This is why you have to be your own advocate.
What I found even more unpleasant was the placement of three gold balls in my prostate for the radiation machine to better focus. Those were three very long needles but again in this case as brutal as I felt, it was in five minutes he was done.
I guess results vary, maybe you’re right as far as not being painful, I think it was the loud clicking of the machine with each of the 12 samples they took. But distress for everybody else I wanted all the biopsies I can get because catching something early is key and as you know, the whole thing is over in about 15 minutes.
Actually, worse with no pain though is the period of time for a week or two can be unsettling for some seeing some blood in your urine and other things
But the thousand dollar question is, do you wanna go through this little bit of inconvenience in order to live? Yes of course.
I hope you keep us up-to-date. I’m starting to lose track of who had white and will have to go back and read up.
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I found the"snipping" sound more disconcerting than any other aspect. I don't know what's involved and how long the entire process takes if they knock you out. I was in and out in under 40 minutes and driving home.
Yes! That’s it! That darn clicking sound!!! LOL
My first one I was knocked out in 2017. I can’t remember how long you’re there most of the day because they put you under and then make sure you’re OK once you wake. Maybe half day?
I would swear with my three other ones, for fun I would time it and I don’t think I was longer than 30 minutes from the time I walked in the door to the time I walked out. I would never want the hassle of being put to sleep after that.
SammyChevelleTypeS3
$50 site donor 2023
Thanks to Alarmguy , DuckRyder + anyone I may be missing. Thanks very much for sharing your information with BITOG folks. Majority of which I must guess are males here... Certainly must be some women too. No matter. We all can benefit from the information shared.
Thanks guys , stay strong and be well. Prayers to all dealing with ANY type health issues too. They all can be tough on folks to deal with at times. Some of us are lucky and have good family or friends to support us while some are not as lucky.
Thanks guys , stay strong and be well. Prayers to all dealing with ANY type health issues too. They all can be tough on folks to deal with at times. Some of us are lucky and have good family or friends to support us while some are not as lucky.
Ive been under several times lately, usually out in a couple hours. think the blasting takes 45-an hour of that...
Talked to my GP who said he fell in the "want it out" category, he said he'd have a particular guy do it and i'm reasonably sure his guy is the same guy my urologist was speaking of.
Talked to Dad, he had radiation ~ 15 years ago. Said aside form pretty much needing to always know her the head is he doesn't have any issues. He did not remember his gleason score, thought it might have been 9.
For me MRI early May.
Talked to my GP who said he fell in the "want it out" category, he said he'd have a particular guy do it and i'm reasonably sure his guy is the same guy my urologist was speaking of.
Talked to Dad, he had radiation ~ 15 years ago. Said aside form pretty much needing to always know her the head is he doesn't have any issues. He did not remember his gleason score, thought it might have been 9.
For me MRI early May.
Maybe they will, maybe they won't. In general I can't agree more with the comments of DuckRyder. The institution and doctor I was treated by couldn't have been less forthcoming, even to someone who had gone to great lengths to be educated.
I went through proton radiation, seeds and androgen suppression (using Lupron) in 2020. Nothing was said about the side effects of the suppression drug (a story in itself) or the seeds. On the radiation, a clerk read from a list of 20-30 items, with no provided context, percentages or any other way to gauge likelihood. When compared to the well known side effects of surgery, it still seemed comparatively non-invasive.
Four years later I discovered the radiation (with help from the seeds) had shriveled one kidney urethra down to being almost closed, and was causing severe loss of kidney function.
Yes, "things can be done"
. I've gone through three stenting procedures to get enough flow to determine whether the kidney is worth saving. This will have to be done every four to six months from here out. The most promising alternative is to try to reroute using the appendix or a section of the stomach. It gets worse from there. The surgeon has mentioned reconstruction using skin from inside my mouth.Once it was apparent this was a possibility, in retrospect it was easy to see it should have been warned about. The only warning was from the urologist at the same facility who said he prefers surgery, as the side effects for those patients tend to improve over time, whereas those irradiated tend to get worse. But that was just one small snippet amongst a very big picture, not standing out as it should have. I had booked a specific consultation with the radiation oncologist to try get the missing context. She couldn't have been less definitive, saying the outcome was the same, it was like deciding whether to get there by plane or bus!
Incidentally, this wasn't in some podunk facility. It was at the internationally known one here in Houston. My seeds were implanted by the doctor who invented the protective gel pack.
There is an additional test they can do to the biopsy sample to determine this.
I worked on an experimental oncology treatment with a well known cancer facility in Houston quite a few years ago and they were disorganized.Maybe they will, maybe they won't. In general I can't agree more with the comments of DuckRyder. The institution and doctor I was treated by couldn't have been less forthcoming, even to someone who had gone to great lengths to be educated.
I went through proton radiation, seeds and androgen suppression (using Lupron) in 2020. Nothing was said about the side effects of the suppression drug (a story in itself) or the seeds. On the radiation, a clerk read from a list of 20-30 items, with no provided context, percentages or any other way to gauge likelihood. When compared to the well known side effects of surgery, it still seemed comparatively non-invasive.
Four years later I discovered the radiation (with help from the seeds) had shriveled one kidney urethra down to being almost closed, and was causing severe loss of kidney function.
Yes, "things can be done"
Once it was apparent this was a possibility, in retrospect it was easy to see it should have been warned about. The only warning was from the urologist at the same facility who said he prefers surgery, as the side effects for those patients tend to improve over time, whereas those irradiated tend to get worse. But that was just one small snippet amongst a very big picture, not standing out as it should have. I had booked a specific consultation with the radiation oncologist to try get the missing context. She couldn't have been less definitive, saying the outcome was the same, it was like deciding whether to get there by plane or bus!
Incidentally, this wasn't in some podunk facility. It was at the internationally known one here in Houston. My seeds were implanted by the doctor who invented the protective gel pack.
Wow, thanks so much for chiming in. I always thought Proton was the latest and greatest. Plus you had seeds and Lupron. I mean they really hit you will a lot of stuff. Im assuming your case was on the more severe side.Maybe they will, maybe they won't. In general I can't agree more with the comments of DuckRyder. The institution and doctor I was treated by couldn't have been less forthcoming, even to someone who had gone to great lengths to be educated.
I went through proton radiation, seeds and androgen suppression (using Lupron) in 2020. Nothing was said about the side effects of the suppression drug (a story in itself) or the seeds. On the radiation, a clerk read from a list of 20-30 items, with no provided context, percentages or any other way to gauge likelihood. When compared to the well known side effects of surgery, it still seemed comparatively non-invasive.
Four years later I discovered the radiation (with help from the seeds) had shriveled one kidney urethra down to being almost closed, and was causing severe loss of kidney function.
Yes, "things can be done"
Once it was apparent this was a possibility, in retrospect it was easy to see it should have been warned about. The only warning was from the urologist at the same facility who said he prefers surgery, as the side effects for those patients tend to improve over time, whereas those irradiated tend to get worse. But that was just one small snippet amongst a very big picture, not standing out as it should have. I had booked a specific consultation with the radiation oncologist to try get the missing context. She couldn't have been less definitive, saying the outcome was the same, it was like deciding whether to get there by plane or bus!
Incidentally, this wasn't in some podunk facility. It was at the internationally known one here in Houston. My seeds were implanted by the doctor who invented the protective gel pack.
I get the drug suppression. I mean, this stuff isnt Childs play and some people it is not friendly, actually goes for any cancer treatment I think. I am hoping now 3 months into it and 3 months to go I will be ok. So far it seems just the hotflashes is bothering me and feeling tired and lazy. I have some muscle tightness in my thighs, not sure if that is the radiation or drug.
But once focused on something like hours of pickleball or working around the house I am ok. Then crash later. Orgovyx is the newest suppression drug I think only approved around 2022 by medicare. Works in a different way. From what I understand and told "ramp up time" is much faster and "ramp down" once done much faster. Pill a day no injection. I was told about it as previously posted by that doctor at Duke.
I see my medical oncoligist in a few weeks, including full blood work. He did tell me, as I was starting the Orgovyx suppression drug (that I asked for because of my Duke evaluation) that he (almost) emphatically said a lot of men really have a problem with it. I dont know what that meant and didnt ask further because I trusted the Duke advice.
I would chose the same course of treatment as I am doing. No one case is the same and you definitely have had a rough time. I hope things work out for you. After radiation I put myself at a 0 out of 10 with 10- being the best. now 4 weeks later I think I climbed up to a 6 out of 10 and seems like my function is improving even up until last night. From getting up every hour or so... I think I am now almost at getting up every two hours or so. This is a huge encouragement for me.
I wont know how things work for me until I guess up to another year? No not really, With 3 months to go regarding suppression I should have almost no detectable PSA in my blood, if I do I will cry, that means a problem. My radiation was the standard EBRT which is light years head of what it was (from what I understand) in the 1990s to the 2006 time period. Much more focused.
True story. you really seemed to have had cutting edge technology with a terrible outcome. I am mentioning this because when I went to the Duke Consultation I wanted all that stuff you mention. Interestingly Duke is doing cutting edge trials and treatments I mean they arent some back woods network. So maybe I got lucky? or my case was simple. They were there to consult with my wife and I.
Not to treat me. I bought up all those technologies INCLUDING all the ones on their website. They wanted the standard EBRT and drug therapy for me and explained. Yes they are in trails and working on a number of technologies but they do not have the track record of more than a couple years on how good these new advances are and what they propose is a time proven solution for ME and my condition. They really did not want to go into anything other than what I have and was very comfortable.
I agree with all the comments in here BTW. Including Duckrider and you. We are all treated in different areas, different doctors for a cancer that has maybe hundreds (?) of unique different challenges and side effects. No one person is the same.
Hopefully our stories help others to compile a list of questions to ask doctors AND seek another opinion if they wish. Yes, without question one must be proactive in their decision and to make sure they get the answers they ask. Duckryder and Others will benefit from our posts as he still will need treatment and now he can confidently ask more pointed questions if he feels his doctor is not being forthcoming.
I love this thread and thanks for contributing. I hope you continue to its a big help. Do you remember what your stage was?
Another thing about this cancer is different numbering systems (grade and stage) confuse people. When I talk grade I am thinking this.
This is my grade
Also here are my radiation oncologist notes in my file that I have access too. He really did go over everything and I am feeling fortunate. I do feel follow up after radiation could have been better. It's really non existent until the 3 month mark when I go back. With that said previously mentioned I am meeting with my medical oncologist in a few weeks.
Im glad I ran into your post because I forgot the discussion with my doctor but here it is right in his notes to my file in "MyChart" The possible side effects in their gory details. However that goes for almost any procedure and drug. It is sad hearing of someone though.
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Yes, not only was it Proton, but Pencil Beam as well.
My cancer was not all that different from yours, possibly a little more advanced. I had two biopsies in the preceding years, each showed two positive cores, with Gleasons of 3+3 and 3+4. My PSA at the beginning of treatment was 15.7, and increasing rapidly. Imaging showed extracapsular extension, meaning it was about to metastasize. I can no longer access the notes but I believe the T-score was three.
Looking back, I think it was the androgen deprivation that crashed me the hardest. I had nine months of it. They chose this, along with the seeds, to lessen the number of radiation treatments, which was only 22. A friend had warned me to try to get it in as small an increment as possible. They first proposed one nine-month injection (which I knew to reject), then a six month one, then a three month which I accepted.
But that was still too much. The timed release was very apparent. Each month brought a distinctly new, and cumulative, side effect – The first month was psychosis, the second month was shooting arthritis pains, particularly in my hands, and I think the third month was inability to get to sleep and hot flashes. By the end of the second month I was back at the oncologist saying we had to do something different, preferably surgery.
However, my surgeon of choice didn’t consider me a patient of choice, due to age and weight, and said the chances of permanent incontinence were high (as much as 1 in 3, if I remember correctly). I went back to the oncologist, who agreed to reduce the Lupron dosage to one month at a time. Even at that, the only way I managed to get through was to ask myself each month if I could possibly manage another.
The worst of the deprivation side effects (the mood problems – another story in itself) started to subside a couple of moths after the end of the Lupron. But my testosterone (always low, as is often the case with prostate cancer) didn’t rebound, and I didn’t have any energy or feel remotely like a human again until one of the oncologists gave me the go-ahead to seek T replacement therapy.
It was an extremely rough ride, and most days I wasn’t actually sure I wanted to make it. Many side effects remain – shrunken bladder, inability to get to sleep, decreased bone density, constipation, decreased white blood count, some lingering mood problems which I didn’t have before.
But I’m alive. The oncologist says if you make it five years without the reappearance of cancer, you have a 95% change of it not coming back. I’m at 52 months and feeling optimistic.
My cancer was not all that different from yours, possibly a little more advanced. I had two biopsies in the preceding years, each showed two positive cores, with Gleasons of 3+3 and 3+4. My PSA at the beginning of treatment was 15.7, and increasing rapidly. Imaging showed extracapsular extension, meaning it was about to metastasize. I can no longer access the notes but I believe the T-score was three.
Looking back, I think it was the androgen deprivation that crashed me the hardest. I had nine months of it. They chose this, along with the seeds, to lessen the number of radiation treatments, which was only 22. A friend had warned me to try to get it in as small an increment as possible. They first proposed one nine-month injection (which I knew to reject), then a six month one, then a three month which I accepted.
But that was still too much. The timed release was very apparent. Each month brought a distinctly new, and cumulative, side effect – The first month was psychosis, the second month was shooting arthritis pains, particularly in my hands, and I think the third month was inability to get to sleep and hot flashes. By the end of the second month I was back at the oncologist saying we had to do something different, preferably surgery.
However, my surgeon of choice didn’t consider me a patient of choice, due to age and weight, and said the chances of permanent incontinence were high (as much as 1 in 3, if I remember correctly). I went back to the oncologist, who agreed to reduce the Lupron dosage to one month at a time. Even at that, the only way I managed to get through was to ask myself each month if I could possibly manage another.
The worst of the deprivation side effects (the mood problems – another story in itself) started to subside a couple of moths after the end of the Lupron. But my testosterone (always low, as is often the case with prostate cancer) didn’t rebound, and I didn’t have any energy or feel remotely like a human again until one of the oncologists gave me the go-ahead to seek T replacement therapy.
It was an extremely rough ride, and most days I wasn’t actually sure I wanted to make it. Many side effects remain – shrunken bladder, inability to get to sleep, decreased bone density, constipation, decreased white blood count, some lingering mood problems which I didn’t have before.
But I’m alive. The oncologist says if you make it five years without the reappearance of cancer, you have a 95% change of it not coming back. I’m at 52 months and feeling optimistic.
I read your story. Yes, we were not all that different. Amazingly close biopsies. (thanks for posting in here, it helps others to ask questions from their doctors) Another thing about why cancer sucks is behavior can vary person to person. Even its placement in the gland itself can generate different outcomes.
Looks like you caught it at an early time. As I posted in here so many times for others to be proactive. You either had a very good doctor or you (as I had to do) made sure my doctor knew I did not want to wait on a biopsy even though over the years I already had three. He finally agreed but he should have agreed 6 months sooner as my PSA was still going crazy. He was actually willing to wait another 6 months, I said no.
AS you know surgery wasnt really an option for me, unless I wanted to roll the dice with scalpel surgery and possible 20% fail rate that it would be successful . Besides that I was VERY concerned about incontinence with surgery. Both temporary and permanent. I was told if that is my #1 concern and #2 sex than without question in my case radiation was the choice to make for me.
Also my recovery time is almost instant vs surgery with outcomes depending on if and how much nerve tissue they made have damaged during surgery.
I kind of already knew this however they made it clear to me. The only problem with radiation is that if it comes back, you cant get radiation again and surgery is generally not an option either. However I was led to believe that the chances of it coming back is less with radiation then if I chose surgery. So it was a non issue. Surgical removal I was told does not mean that every cancer cell got removed, radiation will get some of the surrounding tissue to possibly kill any cells around outside.
The only thing that caught me off guard was the radiation itself. Staff was wonderful. you get to know them. I actually enjoyed going there. (I posted photos of me getting treated) First week I thought is this all there is to it? Second week I thought I could feel actual nerve sensations as I was getting my dose and after. 3rd week really started affecting me and getting more brutal, 4, 5 and 6th week I couldnt wait for it to be over. (all posted in this thread. Still I would choose radiation again for me personally.
So also posted in here the Dr did put in my notes the side effects and possible side effects. Im doing really well now almost 4 weeks after the last treatment. By that I mean, like almost a miracle the last week I have noticed significant improvements. Much like the doctor told me and put in my notes. It takes 2 to 3 months and he said I will return to 90% of my baseline before I started this routine. I went from 0 to now about 6 on a scale of 10 back to normal in about 4 weeks. FINALLY I am getting excited, it seems he is correct. I hope it continues and I think it is! I forgot about all this and was really starting to feel down about it. Then I looked at my notes in "My Chart" (posted in here) and it seems like things are moving exactly like I was told.
At first I was caught off guard. Frequent trips to the bath room all night to try to empty my bladder. Terrible for me (everyone is different though) I was told I might have a bit more trouble. But I haD no idea what that meant. IT WAS DEPRESSING AT TIMES.
Ok, so I am encouraged, at a new "high" mentally.
Now for the Orgovyx which is a hormone blocker and your post about Lupron. Between recovering from the tiredness of the radiation and the side effect of tiredness of the Orgovyx. I just feel lazy all the time EXCEPT when I get motivated such as playing pickleball or for example spent hours last week climbing in the attic of our new home installing a TV antenna. While I am involved in a project I really get into it. But wow, when I am done I just crash.
MY medical oncologist did tell me some men really have issues with this drug Orgovyx. I guess I am a bit lucky in that respect.
It's true it kills your sex drive so much, you dont even miss it, which is amazing for me while you take it but any of these treatments do. However with this drug within a week or two testosterone will start to ramp up quickly vs Lupron.
My biggest issue is the hot flashes. Wow, somedays it's nuts, even having one right now. But they go away within 4 minutes or so. It is a pain in the neck, yet Im kind of used to it but still nuts. Sometimes I get out of the shower, then 15 minutes later sweat like a dog all over again. *LOL*
The speciality pharmacy just called me this morning, they call every month before bringing the next 30 day supply to my house. 1 pill a day. The reason for the call is to find out about any other new medications, how I am feeling etc etc. Then a courier brings it to the house a few days later. This isnt a drug that can be filled at a CVS or Walgreens. I think the 6 month total cost is 15 to $18,000 covered by my Medicare Part D.
You really had a rough time with Lupron and even though I am not in that respect I am sure in other side effects I have had extremes. Such as I am surprised at how beat up I felt with the 28 radiation treatments. Towards the end of the treatments my Dr offered a few day break from them before finishing up. Meaning the weekend plus a few days he says he offers his patients. I told him to keep going and lets "plow through this"
Im rambling on, nothing new. It's awesome hearing your story. As you know, it's a subject that so many men wont talk about and it's time that changes because this cancer sucks and still to this day media kind of glosses over it. You are young and I am glad you are feeling upbeat. Im a young 68. When people met me and age come up, they question it. Including sometimes medical personal.
SO yes, we are alive and I hope our stories get people to their doctors sooner rather than later as the odds of beating it are PROVEN to be MUCH greater the sooner you deal with it.
Thanks for posting and good luck! Yes, you have good reason to be optimistic as I because we dealt with it at an early stage.
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I had radiation a year and half ago, 27 treatments 5 days a week. I can tell you that anyone that says the after effects are minimal are stretching. I'm not sure if any other type of treatment would have had less, so I grin and bear it. I am on Flomax for the rest of my life, and have minimal control of the waste disposal systems.
Sorry to hear this. I guess the key is you are alive.
I can confirm hands down what you say as far as the radiation treatments. As I posted many times in here. After the 2nd week of the 6 week treatment the side effects became strong. Based on my doctors mine were on the rough side. Getting up every hour or so to use the bathroom when I sleep at night and being able to completely empty my bladder. I always got up quite a few times at night, this doubled it.
Radiation ended 6 weeks ago but think I have been more fortunate in a recovery, so far anyway. I will post an update in a few days. I hope it continues.
But things seem to be going back to a more manageable normal (lack of better word) state now. The last two weeks since ending radiation 6 weeks ago I have really seen a change in needing to run to the bathroom. I am very excited as you know the mental sometimes depressing drain this treatment can become. The change for the better has been so dramatic in the last ten days or so that for the first time I think I can say I can actually live my life comfortably right now if I didn't recover much more. It would NOT be ideal but at my current level I can live a normal life.
Being I have a couple more weeks to go I am hoping for maybe that other 10 to 20% improvement. It's funny as you posted, the new "normal" you kind of get used to things. The "grin and bear" it part is unique to each person. I think I am at that point right now, my "waste disposal" systems are ok and livable but if I get can that extra 10 to 20% in the next couple weeks of recovery I will be pretty much to where I was before all this started.
My doctor says stats say 90% of what I was before and I think maybe he will be right which for me wasn't all that perfect anyway. Still it can take up to 3 months for all the tiredness to wear off but I do have one outlier and that is Orgovyx I am taking also makes you tired. I have 3 months to go on that so complete results will be vague until maybe Sept when all effects are back to normal along with my testosterone.
I guess those who read this understand why this cancer sucks. Radiation or removal carries side effects. I was told if one was concerned about immediate side effects and the risk of incontenance to go with radiation, in my case. They let me make up my own mind of course. Also removal would have been a roll of the dice for me.
I had both doctors there, surgeon and radiation oncologist.
The good news is if you address the cancer changes are VERY high you will live if caught early. The side effects can be all over the board and depends on the individual and what your baseline was.
Appreciate your comments. I think we can agree there is no cake walk with this cancer and I KNOW you must agree the media presents this other agenda leading one to believe dealing with prostate cancer is simple if even necessary, drives me NUTS, but yeah, grin and bear it if you want to live.
Funny how your perspective changes isn't it?
One thing I would like to add - Anyone facing any kind of cancer should be very careful about what resources they pay attention to. In particular - Pay ZERO attention to the summary blurbs put out by medical facilities, even prestigious ones. Those are nothing more than advertisments riding on the reputational coattails of medicine, and will lay a thick gloss over the downsides.
Look either for original studies as shown in Pub Med, or someone referencing those studies. I found the YouTube vids of Mark Scholz of PCRI (Prostate Cancer Research Institute) had great overviews of the best studies I could find.
Look either for original studies as shown in Pub Med, or someone referencing those studies. I found the YouTube vids of Mark Scholz of PCRI (Prostate Cancer Research Institute) had great overviews of the best studies I could find.
Thanks for your reply, I hope your improvement continues. There are days when it seems everything is getting better, then, well not so much. Its possible that some of my problems stem from my age, 81, and a younger man may have better results. All in all I was a little harsh on my comments, considering the alternatives. Best of luck to you.
No, not harsh, just honest about what you went through. We are all different and will have different side effects. Yes, age also is a big factor I was told by my doctors. I never knew what one of them meant in our intial conversation with my wife and I. I possibly forgot as we saw so MANY specialists. He brought up because my age (68) I was right in-between or "on the line" of recommendations.
Anyway, recovery I am told is slower the older you get. I can see at 81 you had many challenges.
I tend to agree but would chose these words for someone.
I paid attention to everything I read online, saw in medical center promotions and new treatment trials. I took this information with me, wrote them all down to ask the panel of Prostate cancer specialists at respected Duke Cancer Clinic which the entire 5 (or 4th) floor is for cancers down there.
I wanted the latest, greatest, newest technology. Duke is involved in MANY treatment trials. It's all online and yes they "promote" them (I agree with you) At the same time I knew radiation and surgery were the "staples' in the medical field.
I was quite surprised at their reaction (but not terribly) when I talked about all the alternatives to them/ They pretty much frowned on it FOR MY CASE. I was almost disappointed.
They explained to me, yes, they are up and coming procedures and treatments HOWEVER they are not proven long term results and not applicable to me. (my words) So I was down to radiation or surgery and all we would talk about.
However my wife I fully trusted their expertise. IT was a fantastic consolation with the 3 of them, not to treat me but to help me make a decision no matter where I get treated.
Im very happy with my treatments and I think KEY IS, if you are concerned, research on your own? Sure if you wish but with that knowledge meet with two different medical facilities and specialists and get their EXPERTISE and thoughts for your treatment.
Bottom line for me and what was suggested, The radiation and Hormone Therapy FOR MY CONDITION. I was told and learned even by my radiation oncologist from another health network it is (EBRT) much more focused then the old days of the 1990s and even early 2000s. My survival rate no different than surgery and side effects more in my favor for what I WANTED>
I think I made the right choice FOR ME, but you have to hang in there we know. Radiation to me was not a cake walk ( it was brutal for me) as I assume surgery is not a cake walk either. everyone is different. I am now posting from a new perspective today and will update later in the week. I have made many "ground breaking" almost amazing rapid wonderful changes in my recovery, now 4 weeks later almost like I was told to expect. Actually so rapid a change just this weekend I emailed my family and was in tears as I did and with my wife. (more on this in a few days)
So I did extensively watch videos by doing the search surgery or radiation for prostate cancer and a big YES to your mentioned PCRI Prostate Cancer Research Institute _ I agree on Mark Scholz and my wife and I LOVED the interviewer woman in all those videos. The one who wears the Black Blouse all the time.
It's world of information. TO BE USED BY ME FOR ONE THING ONLY. IT EDUCATED ME SOME OF THE TERMS AND TREATMENTS OUT THERE. I told the doctors at Duke I tried to educate myself for our meeting together by researching on my own. NOT to figure out what treatment I wanted but so I would understand terms and treatments for our discussion. They were receptive to the way I worded it. I also told them a lot of what I saw was on PCRI
https://www.youtube.com/@ThePCRI/videos
I can understand why some are down on the system. Im overall happy, and I am glad for all the options I had. Maybe the point of much my thread. Get opinions from different doctors if you are like me and find it hard trusting anything. All in all, right now I am so feeling positive I cant put into words. Regular EBRT and Orgovyx Hormone Therapy. Is working for my case. Actually with the radiation out of the way now, still recovering as it takes up to 3 months and I am into month 1 though by month 2 you should be good except maybe some lingering effects (in my case) I still will be on hormone therapy until mid July but dealing with it ok
With all said above. I dont want to convey everything is perfect but I am very encouraged I may end up like my radiation oncologist told me that patients in my condition end up at 90% of where they were before treatment within 2 months. That would be wonderful and only in the last week have a seen a huge move in that direction and it's only been 4 weeks.
The drag is still hormone therapy for 10 more weeks. Im mostly ok with it, the hot flashes are frequent but it is what it is, it's an inconvenience but is over with in 5 minutes or less. Plus it makes you lazy and tired. However I stay active as. you are supposed to. Pickleball, working about the house intensely. Then it's ok, to crash on the couch for an hour. I dont notice it while doing an activity it's only once you stop.
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Ok, so since this thread is also about Medicare and Prostate Cancer.
As posted I moved into Medigap Plan N and Plan D this year since the Advantage Plan I was in was not offered this year. I had the option to go to Medigap with no underwriting or choose another Advantage Plan. I chose Medigap next year, depending, I may go back to an Advantage Plan. One thing with Advantage (still a great deal) but they have been cutting back on "extras" and out of pocket limits rising. Not that I would ever hit an out of pocket limit... anyway, I will decide that in 6 months from now what to do for 2026
As of March 2nd -
My Medigap Plan N has processed $80,178 in claims for my cancer treatment.
My Plan D drug plan has processed $13,256 for three months of taking one pill a day.
My cost for Plan N (rough number) is the monthly standard Medigap $185 premium plus $133 Plan N premium = $318 a month
My actual cost for the cancer treatment was maybe $300 out of pocket.
My actual cost for the Plan D drug was under $2,000 (there is a $2000 out of pocket cap)
my Premium for Plan D = $0.00
This is my Plan N processed payouts for my cancer treatments from Jan to March-
My Drug Plan D
First 30 day supply was delivered in Jan, following months were, Feb, March, April and I just received May 30 day supply.
By the time I get June 30 day supply the retail value of the drug is $19,884.00 for the six month one a day pill treatment as charged to the Part D insurance is below. I forgot exactly what they actually pay but think their actual cost is closer to around $2,400 a month.
My cost pennies as far as I am concerned.
Im confident in my doctors because I got so many opinions and sort out second opinions. I do think "follow through" and guidance after treatment is lacking and you almost have to seek it out to know what comes next. With that said I am overall happy with my treatment and confident in it. I do think the health care network where I got treated could be more helpful. Meaning a central person to pull everything together and keep you informed, up to date etc. Instead of you seeking this information. In reality I am told of the "next steps" But I think, a nice worksheet printed out for you would be a huge help. True a lot is posted my MyChart but in my area two places merged and its kind of wonky right now. For example like this week. I am going to get blood drawn for a series of tests and meet with the Medical Oncologist next week. I am told to call my local place to draw blood and it's in their system. Yet it isnt in my chart. Only thing in there is blood to be drawn in a few months for my regular annual check up. SO I have to make calls now and make sure the blood to be drawn is what the Medical Oncologist needs and that the order is from him. (stuff like this bothers me)
As posted I moved into Medigap Plan N and Plan D this year since the Advantage Plan I was in was not offered this year. I had the option to go to Medigap with no underwriting or choose another Advantage Plan. I chose Medigap next year, depending, I may go back to an Advantage Plan. One thing with Advantage (still a great deal) but they have been cutting back on "extras" and out of pocket limits rising. Not that I would ever hit an out of pocket limit... anyway, I will decide that in 6 months from now what to do for 2026
As of March 2nd -
My Medigap Plan N has processed $80,178 in claims for my cancer treatment.
My Plan D drug plan has processed $13,256 for three months of taking one pill a day.
My cost for Plan N (rough number) is the monthly standard Medigap $185 premium plus $133 Plan N premium = $318 a month
My actual cost for the cancer treatment was maybe $300 out of pocket.
My actual cost for the Plan D drug was under $2,000 (there is a $2000 out of pocket cap)
my Premium for Plan D = $0.00
This is my Plan N processed payouts for my cancer treatments from Jan to March-
My Drug Plan D
First 30 day supply was delivered in Jan, following months were, Feb, March, April and I just received May 30 day supply.
By the time I get June 30 day supply the retail value of the drug is $19,884.00 for the six month one a day pill treatment as charged to the Part D insurance is below. I forgot exactly what they actually pay but think their actual cost is closer to around $2,400 a month.
My cost pennies as far as I am concerned.
Im confident in my doctors because I got so many opinions and sort out second opinions. I do think "follow through" and guidance after treatment is lacking and you almost have to seek it out to know what comes next. With that said I am overall happy with my treatment and confident in it. I do think the health care network where I got treated could be more helpful. Meaning a central person to pull everything together and keep you informed, up to date etc. Instead of you seeking this information. In reality I am told of the "next steps" But I think, a nice worksheet printed out for you would be a huge help. True a lot is posted my MyChart but in my area two places merged and its kind of wonky right now. For example like this week. I am going to get blood drawn for a series of tests and meet with the Medical Oncologist next week. I am told to call my local place to draw blood and it's in their system. Yet it isnt in my chart. Only thing in there is blood to be drawn in a few months for my regular annual check up. SO I have to make calls now and make sure the blood to be drawn is what the Medical Oncologist needs and that the order is from him. (stuff like this bothers me)
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