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My Journey Begins, Cancer and Medicare, Maybe this will help some others one day
- Thread starter alarmguy
- Start date
GENETIC TESTING -
This may be of some help to those who have prostate cancer OR being monitored for it.
When I went for my team consultation at Duke Cancer Clinic they gave me a card for Prostate Cancer Genetic testing at no cost to me.
Doctors just offered it with no sales pitch.
It didnt cost me anything, so if you are interested and it hasn't been offered to you, I would ask your doctor. Yeah, I get it, sending a DNA sample might be unsettling but hey, everything is everywhere now. I did chose to "destroy" the sample when testing was done. I was thinking of my children when I decided to get it done.
Anyway, they gave me a card with activation number then filled out everything online, they sent a collect kit to my home. All you do is spit into a tube and mail it back.
Amazing.
The reason I CHOSE to do the test was I wanted to know if I had a genetic link to my cancer. Was it genetic or some "other" cause? As the doctors mentioned to me. I wanted to know and I love technology.
Some would say what is the difference if you already have it?
Well, I did it for my kids, my son and daughter (yes daughter too)
My wife and I were told the same genetic mutations that cause prostate cancer in men cause breast cancer in woman. By getting the test and if the cancer was shown to have a genetic history I would be able to alert my kids that this can be an additional factor to keep in mind and also to enter that in their history with their doctors.
Anyway, it seems quite a substantial list of genes they look at. I have no knowledge of how it works and it cant possibly cover everything but it would also alert I think, if other cancer traits were found. This is something to ask your doctor.
Anyway, good news for my kids is (at least from me) I have no genetic predisposition to cancer OF THE GENES tested. So according to the Duke team, the cause would be "other reason"
This is what the first half page of a 3 page report looks like, It lists all the genes tested and a whole bunch of other information.
Here is a link if interested to ask your health care provider. The card my doctors gave me provided the test free.
For my prostate cancer test it was spit in a tube, not blood sample as mentioned.
https://www.color.com/cancer
....
@Cropduster172
This may be of some help to those who have prostate cancer OR being monitored for it.
When I went for my team consultation at Duke Cancer Clinic they gave me a card for Prostate Cancer Genetic testing at no cost to me.
Doctors just offered it with no sales pitch.
It didnt cost me anything, so if you are interested and it hasn't been offered to you, I would ask your doctor. Yeah, I get it, sending a DNA sample might be unsettling but hey, everything is everywhere now. I did chose to "destroy" the sample when testing was done. I was thinking of my children when I decided to get it done.
Anyway, they gave me a card with activation number then filled out everything online, they sent a collect kit to my home. All you do is spit into a tube and mail it back.
Amazing.
The reason I CHOSE to do the test was I wanted to know if I had a genetic link to my cancer. Was it genetic or some "other" cause? As the doctors mentioned to me. I wanted to know and I love technology.
Some would say what is the difference if you already have it?
Well, I did it for my kids, my son and daughter (yes daughter too)
My wife and I were told the same genetic mutations that cause prostate cancer in men cause breast cancer in woman. By getting the test and if the cancer was shown to have a genetic history I would be able to alert my kids that this can be an additional factor to keep in mind and also to enter that in their history with their doctors.
Anyway, it seems quite a substantial list of genes they look at. I have no knowledge of how it works and it cant possibly cover everything but it would also alert I think, if other cancer traits were found. This is something to ask your doctor.
Anyway, good news for my kids is (at least from me) I have no genetic predisposition to cancer OF THE GENES tested. So according to the Duke team, the cause would be "other reason"
This is what the first half page of a 3 page report looks like, It lists all the genes tested and a whole bunch of other information.
Here is a link if interested to ask your health care provider. The card my doctors gave me provided the test free.
For my prostate cancer test it was spit in a tube, not blood sample as mentioned.
https://www.color.com/cancer
....
@Cropduster172
Last edited:
I've got my appointment with my GP tomorrow. Got the lab results from the blood work yesterday. PSA went from 4.45 to 7.05.
Urologist said get another PSA test and an MRI in July.
My experience is the PSA jumps back and forth over the last 2 years.
I'm on the "active surveillance" program. Kind of a doubled edged sword...on the one hand, you don't want the thing growing. OTOH, it's so small, insignificant that it can't be treated with even the most advanced techniques...ie HIFU(high intensity focused ultrasound), etc...
Urologist said get another PSA test and an MRI in July.
My experience is the PSA jumps back and forth over the last 2 years.
I'm on the "active surveillance" program. Kind of a doubled edged sword...on the one hand, you don't want the thing growing. OTOH, it's so small, insignificant that it can't be treated with even the most advanced techniques...ie HIFU(high intensity focused ultrasound), etc...
Good luck and as you know my feelings. Stay on top of it, which you are doing. That is a pretty significant jump. Same thing happened to me about 8 years ago but over the years, it wasnt until the 4th biopsy that something turned up.
Once I hit the 7+ mark it was years of even double that number and more. All over the board.
Yeah, listen to the doctor, stay proactive just in case you end up with the more rare but aggressive type. Seems like your doctor is on top of it.
It's kind of puzzling. The thing began when it went from like 4.8-5.4 that sparked the biopsy, bone scan and MRI. Then it dropped to 4.45 in 11/24 and now up to 7.05. Kind of jumps around. Anyway, I've got one of the best urologists in the Philly region.
Yeah, it jumps around but let’s take an average of about five and now it seems like we’re up to seven. I would be surprised if it drops back down that low.
Keep in mind and I’m just guessing I’m not a doctor but with cancer and prostate there’s also at times inflammation and irritation which can drive up PSA levels. I was evidence of that, but it eventually turned to cancer.
I’m assuming you’re not taking finasteride. If you are make sure your doctor was aware. As all of a sudden my doctor neglected to realize and the following specialists then put me in the high risk category telling me I had to double my PSA due to taking the drug which typically slices it in half.
Judging by the impression I got from all the specialists my regular urologist was out to lunch on me or something
I get it. I'm pretty good at being an advocate for my own health...you really have to be. I have complete confidence in my current doctor. He's truly top notch. He's told me flat out...."this will not effect your longevity"...He's seen a lot so I believe him. More likely than not, it'll be the pizza.
Although, I did start my gym routine yesterday after a 5 month hiatus.
New "cancer" patient here:
First off I want the thank Alarmguy again for putting all this out there I strongly suspect it is reaching a wider audience than just the membership. Truly it is a service, and even though at this stage at least I think I'll be on a different path, it has already helped me and added immeasurable value to the community.
Second: a little about me: When I say "new cancer patient", that's not really true, I've already had cancer of the quick killer variety, caught early and cured with truly minimal muss and fuss. I was very very lucky. I also have a family history, so I guess cancer wants another shot at me. I've seen an alarming number of people around me die of Cancer - a couple of examples: a family member - Sick at thanksgiving, Very very ill at Christmas and dead by Easter and in excruciating pain to boot. Another family member by marriage, diagnosed with troat cancer, told to get his affairs in order quickly, went to Md Anderson. They saved his life, I saw him wilt under the radiation, they lived for months at a time in houston with a lot of other people going there. They were as honest as i think they could be that they were going to save his life and it was going to be a miserable experience and it was I think he would agree orders of magnitude worse than miserable. he ultimately lived many many years and did not die of the cancer but in an ancillary way of the treatment and complications. In my opinion the side affects were pretty severe and I think his quality of life was not very good, but he was alive 15 years after he was not "supposed" to be. Neither of those were prostate cancer.
None of this is meant to derail AlarmGuys thread or make it about me, but I wanted to post as it were my "Qualifications" for speaking on the subject. I feel like a shouldn't have to say this, but my qualifications do not include a medical degree of any kind. Cases and the nuances of each can lead people who may be similar on the face to different paths, only you, your family and your doctors can make a decision about what is right for you.
Nothing I'm saying here is directed at anyone on the thread, I'm also not denigrating doctors or any other medical professional, they are by and large in my experience caring and honest people. We have little time with them, and i think a lot of them have little time to say up on new technologies.
Also i want to apologize in advance for any rambling, I will try to keep it as straight as I know how.
I wholly support the idea here that one has to be their own advocate, Ive already seen evidence of that, not only do you have to ask questions, you have ask pointed, and probing questions because IME at least doctors are going to gloss over some stuff. For instance unless you ask, probably no one is going to tell you that generally in the prostrate cancer "industry" when they say maintain function they mean "with drugs" even if you didn't need them before. In order to ask that sort of question you have to be educated enough to know it is a question. You have to make them tell you what they don't want to tell you.
There are a couple of other ideas i would like to introduce (at least i think they are new):
1) I strongly feel you should get the opinions of for lack of a better word "disinterested" medical professionals that you trust. What I am saying here is along the lines of "don't ask a surgeon if you need surgery". So i think you should talk to someone who isn't going to make any money other than the office visit off of your decision. I'm not suggesting that as a course doctors would be dishonest, but I think a surgeon (or radiologist, or chemo guy) has an inherent bias that he/she is very good at what he/she does and will get the best result, i think that's only human and not necessarily a bad trait in a doctor, but it bears checking out. Also though i have no proof, I'm hearing that there are unwritten protocols at places about "who goes where" to an extent that makes sense as those doctors all have to work together day in and day out.
2) We should all to a person be outraged that in 2025 so much time and money has been wasted on research, studies and testing that has no practical use in human medicine while we ignore more human relevant testing like cells on chips. We've all heard that we've cured cancer in rats thousands of times, but not in humans, Ok captain obvious here RATS ARE NOT HUMAN, why do we continue to try to cure cancer in rats? Why does so much money taxpayer and private go to research methods that don't translate to humans. This is really sorta out of the scope of this thread, but do some research on that if it interest you.
3) In spite of 2) progress is being made, there are better options now than even 5 years ago, radiation has improved, there are things like seed therapy and focused options.
So I'll tell you a little bit about how i came to have a prostrate cancer diagnosis, i sorta backed into it. Im already under the care of a urologist after an emergency room trip in late December for flank pain, I KNEW I had a kidney stone, that is another thing I've got more experience with than i would like, about to have my 5th or 6th procedure. I was referred to my urologist from the emergency room. We had never really gotten around to getting new doctors after the move so i figured it was also time to find a new GP. During routine blood work my PSA was found to be slightly out of range. We did a round of Cipro and re did the PSA with a Free PSA and it was essentially unchanged. With my history my GP was concerned and thought i should talk to the urologist. When i did, considering my number and family and personal history he said why don't we just do a biopsy while you are out and i agreed. I'm not upset about it, but if i knew what i know now, i might not have done that. Also my GP tried to explain the Free PSA, but i don't think knowing what i know now it was necessary as it seems to be an attempt to determine is the elevated PSA is from an enlarged prostrate. I had had an MRI at the E-Room and "enlarged prostrate" was mentioned. I mentioned this MRI to both my urologist and GP, but i'm not sure either of them looked at it. if someone had then we would have known that my PSA corresponded to the expected for the volume of my prostrate. I SHOULD have INSISTED they both review it. also i went a while without a test due to moving, but my PSA has never been low.
Example one, I should have researched the free PSA test and understood it better, i also should have researched the PSA value relative to Prostrate volume.
So back to the day of the procedure / biopsy - They got it approved by insurance, had me sign the additional paperwork including genetic testing and a complete review of all 12 cores rather than just a portion of the cores. They explained to my wife in the waiting room what was happening and i think we were both relived that it was being taken seriously. They also scheduled follow ups for the results and as it happens another procedure. Also think what you will of me but there is a ZERO chance he is doing a biopsy on my prostrate with me awake in his office, it is not happening. So i think we were probably both (me and the doc) relived that we weren't going to have to have that fight. What wasn't explained very well was that they perforate your bowel when they do a biopsy in the United States (typically at least) So they do the thing that every surgeon absolutely does not want to do due to the risk of infection, on purpose. Im now finding out that there is a faction of doctors who have moved away from biopsies in favor of MRIs. It's going to have to be a very compelling case for me to ever get another one. Apparently, in other developed countries the are generally done via a different route and under general anesthesia.
Example two, I should have researched the biopsy prior to talking to the doctor and if i had done one in conjunction with two i probably would not have done the biopsy.
Also I need to say this, I think i have a good urologist, if you have a kidney stone here id tell you go to him without question, he's a great doctor for that.
So, on the 4th we were to go to his office and get the results of the Biopsy. They had not called and said "hey everything looks great" so rightly or wrongly I was pretty much expecting it wasn't good news. It took my wife completely by surprise though, so I think I should have prepared her better for it. More along these lines in a bit. So we had a conversation about the last procedure and got some pleasantries out of the way. I complained a bit of some lingering issues and said "I guess if i'm about to die of prostrate cancer it doesn't really matter". and he said "You're not about to die of prostrate cancer". What he did not say is "You don't have prostrate cancer". We then talked about the biopsy and the cores and the gleason score. To his credit he did say I don't think we need to do anything right away, we need to get a MRI focused on the prostrate, a follow up PSA and meet agin in 3 months. We did discuss other options and he said something along the lines of "Some people would want it out, and thats a reasonable position" He then sold Robotic surgery by his partner (again to his credit he said his partner is very good at it does it more) and related the risk of radiation with what i believe is a somewhat outdated perspective. He then said that if he had to chose he would go with surgery, "grudgingly". I am not sure this is strictly true, i believe him if we are talking about radiation vs surgery, but if active monitoring is on the table....
Example three: I should have done some more research on prostrate cancer and better known questions to ask, you can bet we will have a more detailed conversation in 3 months. I'm probably going to tell him what i'm going to do and he's going to have to change my mind if he doesn't agree.
Ok, so there is another thing here, actually a couple, maybe even a few.
1) I sit here as someone who has been told "you have cancer" twice. It's scary, it's scary for your partner too, maybe even worse for them. For prostrate cancer in particular my advice is do not let then scare or rush you into an irreversible decision without some evidence that your particular prostrate cancer warrants urgency. As one doctor said "waiting times that would be irresponsible for any other cancer, can be fine for most prostrate cancer".
One of the people I discussed earlier kept their family nearly in the dark about the prognosis. This person let their family believe almost until the day they died that everything was going to be fine. It was cruel, they were surprised when the death occurred. Literally no one else was and most of us - forgive us - considered it a mercy, but he let the ones closest delude themselves and there was considerable fall out. If you get really bad news, i implore you to not do this to your loved ones.
Another one of the people discussed earlier had a spouse that was a bit of a bulldog, that educated themselves and advocated for the patient when they weren't able and asked all the questions and made them tell the whole truth. If your spouse is capable, let them be that person.
So i do have a few questions some folks may be able to guide me on:
Why does no one say anything about chemo anymore?
Has anyone had localized or targeted (AKA Focused) seed radiation or ultrasound (EX Tulsa Pro)
What does anyone know about barrier gels in relation to radiation?
Has anyone had short term radiation (Like 5-7 days vs 5 weeks)?
All right, well out for now.
First off I want the thank Alarmguy again for putting all this out there I strongly suspect it is reaching a wider audience than just the membership. Truly it is a service, and even though at this stage at least I think I'll be on a different path, it has already helped me and added immeasurable value to the community.
Second: a little about me: When I say "new cancer patient", that's not really true, I've already had cancer of the quick killer variety, caught early and cured with truly minimal muss and fuss. I was very very lucky. I also have a family history, so I guess cancer wants another shot at me. I've seen an alarming number of people around me die of Cancer - a couple of examples: a family member - Sick at thanksgiving, Very very ill at Christmas and dead by Easter and in excruciating pain to boot. Another family member by marriage, diagnosed with troat cancer, told to get his affairs in order quickly, went to Md Anderson. They saved his life, I saw him wilt under the radiation, they lived for months at a time in houston with a lot of other people going there. They were as honest as i think they could be that they were going to save his life and it was going to be a miserable experience and it was I think he would agree orders of magnitude worse than miserable. he ultimately lived many many years and did not die of the cancer but in an ancillary way of the treatment and complications. In my opinion the side affects were pretty severe and I think his quality of life was not very good, but he was alive 15 years after he was not "supposed" to be. Neither of those were prostate cancer.
None of this is meant to derail AlarmGuys thread or make it about me, but I wanted to post as it were my "Qualifications" for speaking on the subject. I feel like a shouldn't have to say this, but my qualifications do not include a medical degree of any kind. Cases and the nuances of each can lead people who may be similar on the face to different paths, only you, your family and your doctors can make a decision about what is right for you.
Nothing I'm saying here is directed at anyone on the thread, I'm also not denigrating doctors or any other medical professional, they are by and large in my experience caring and honest people. We have little time with them, and i think a lot of them have little time to say up on new technologies.
Also i want to apologize in advance for any rambling, I will try to keep it as straight as I know how.
I wholly support the idea here that one has to be their own advocate, Ive already seen evidence of that, not only do you have to ask questions, you have ask pointed, and probing questions because IME at least doctors are going to gloss over some stuff. For instance unless you ask, probably no one is going to tell you that generally in the prostrate cancer "industry" when they say maintain function they mean "with drugs" even if you didn't need them before. In order to ask that sort of question you have to be educated enough to know it is a question. You have to make them tell you what they don't want to tell you.
There are a couple of other ideas i would like to introduce (at least i think they are new):
1) I strongly feel you should get the opinions of for lack of a better word "disinterested" medical professionals that you trust. What I am saying here is along the lines of "don't ask a surgeon if you need surgery". So i think you should talk to someone who isn't going to make any money other than the office visit off of your decision. I'm not suggesting that as a course doctors would be dishonest, but I think a surgeon (or radiologist, or chemo guy) has an inherent bias that he/she is very good at what he/she does and will get the best result, i think that's only human and not necessarily a bad trait in a doctor, but it bears checking out. Also though i have no proof, I'm hearing that there are unwritten protocols at places about "who goes where" to an extent that makes sense as those doctors all have to work together day in and day out.
2) We should all to a person be outraged that in 2025 so much time and money has been wasted on research, studies and testing that has no practical use in human medicine while we ignore more human relevant testing like cells on chips. We've all heard that we've cured cancer in rats thousands of times, but not in humans, Ok captain obvious here RATS ARE NOT HUMAN, why do we continue to try to cure cancer in rats? Why does so much money taxpayer and private go to research methods that don't translate to humans. This is really sorta out of the scope of this thread, but do some research on that if it interest you.
3) In spite of 2) progress is being made, there are better options now than even 5 years ago, radiation has improved, there are things like seed therapy and focused options.
So I'll tell you a little bit about how i came to have a prostrate cancer diagnosis, i sorta backed into it. Im already under the care of a urologist after an emergency room trip in late December for flank pain, I KNEW I had a kidney stone, that is another thing I've got more experience with than i would like, about to have my 5th or 6th procedure. I was referred to my urologist from the emergency room. We had never really gotten around to getting new doctors after the move so i figured it was also time to find a new GP. During routine blood work my PSA was found to be slightly out of range. We did a round of Cipro and re did the PSA with a Free PSA and it was essentially unchanged. With my history my GP was concerned and thought i should talk to the urologist. When i did, considering my number and family and personal history he said why don't we just do a biopsy while you are out and i agreed. I'm not upset about it, but if i knew what i know now, i might not have done that. Also my GP tried to explain the Free PSA, but i don't think knowing what i know now it was necessary as it seems to be an attempt to determine is the elevated PSA is from an enlarged prostrate. I had had an MRI at the E-Room and "enlarged prostrate" was mentioned. I mentioned this MRI to both my urologist and GP, but i'm not sure either of them looked at it. if someone had then we would have known that my PSA corresponded to the expected for the volume of my prostrate. I SHOULD have INSISTED they both review it. also i went a while without a test due to moving, but my PSA has never been low.
Example one, I should have researched the free PSA test and understood it better, i also should have researched the PSA value relative to Prostrate volume.
So back to the day of the procedure / biopsy - They got it approved by insurance, had me sign the additional paperwork including genetic testing and a complete review of all 12 cores rather than just a portion of the cores. They explained to my wife in the waiting room what was happening and i think we were both relived that it was being taken seriously. They also scheduled follow ups for the results and as it happens another procedure. Also think what you will of me but there is a ZERO chance he is doing a biopsy on my prostrate with me awake in his office, it is not happening. So i think we were probably both (me and the doc) relived that we weren't going to have to have that fight. What wasn't explained very well was that they perforate your bowel when they do a biopsy in the United States (typically at least) So they do the thing that every surgeon absolutely does not want to do due to the risk of infection, on purpose. Im now finding out that there is a faction of doctors who have moved away from biopsies in favor of MRIs. It's going to have to be a very compelling case for me to ever get another one. Apparently, in other developed countries the are generally done via a different route and under general anesthesia.
Example two, I should have researched the biopsy prior to talking to the doctor and if i had done one in conjunction with two i probably would not have done the biopsy.
Also I need to say this, I think i have a good urologist, if you have a kidney stone here id tell you go to him without question, he's a great doctor for that.
So, on the 4th we were to go to his office and get the results of the Biopsy. They had not called and said "hey everything looks great" so rightly or wrongly I was pretty much expecting it wasn't good news. It took my wife completely by surprise though, so I think I should have prepared her better for it. More along these lines in a bit. So we had a conversation about the last procedure and got some pleasantries out of the way. I complained a bit of some lingering issues and said "I guess if i'm about to die of prostrate cancer it doesn't really matter". and he said "You're not about to die of prostrate cancer". What he did not say is "You don't have prostrate cancer". We then talked about the biopsy and the cores and the gleason score. To his credit he did say I don't think we need to do anything right away, we need to get a MRI focused on the prostrate, a follow up PSA and meet agin in 3 months. We did discuss other options and he said something along the lines of "Some people would want it out, and thats a reasonable position" He then sold Robotic surgery by his partner (again to his credit he said his partner is very good at it does it more) and related the risk of radiation with what i believe is a somewhat outdated perspective. He then said that if he had to chose he would go with surgery, "grudgingly". I am not sure this is strictly true, i believe him if we are talking about radiation vs surgery, but if active monitoring is on the table....
Example three: I should have done some more research on prostrate cancer and better known questions to ask, you can bet we will have a more detailed conversation in 3 months. I'm probably going to tell him what i'm going to do and he's going to have to change my mind if he doesn't agree.
Ok, so there is another thing here, actually a couple, maybe even a few.
1) I sit here as someone who has been told "you have cancer" twice. It's scary, it's scary for your partner too, maybe even worse for them. For prostrate cancer in particular my advice is do not let then scare or rush you into an irreversible decision without some evidence that your particular prostrate cancer warrants urgency. As one doctor said "waiting times that would be irresponsible for any other cancer, can be fine for most prostrate cancer".
One of the people I discussed earlier kept their family nearly in the dark about the prognosis. This person let their family believe almost until the day they died that everything was going to be fine. It was cruel, they were surprised when the death occurred. Literally no one else was and most of us - forgive us - considered it a mercy, but he let the ones closest delude themselves and there was considerable fall out. If you get really bad news, i implore you to not do this to your loved ones.
Another one of the people discussed earlier had a spouse that was a bit of a bulldog, that educated themselves and advocated for the patient when they weren't able and asked all the questions and made them tell the whole truth. If your spouse is capable, let them be that person.
So i do have a few questions some folks may be able to guide me on:
Why does no one say anything about chemo anymore?
Has anyone had localized or targeted (AKA Focused) seed radiation or ultrasound (EX Tulsa Pro)
What does anyone know about barrier gels in relation to radiation?
Has anyone had short term radiation (Like 5-7 days vs 5 weeks)?
All right, well out for now.
@DuckRyder
WOW I had no idea of your post until today 3 days after you posted. I have a lot of answers to your questions and still recovering from radiation. Yes, me, just shy of 6 weeks 5 days a week. 28 treatments plus Orgovyx therapy until the middle of July.
My radiation ended March 25th. Im still recovering from it. Its made a condition I had worse but I was aware of this possibilty going into it. I have so much to add but I cant do it now. It will be a long one. I have a lot to say and I can even tell you about my inquiries about the spacer Gel not only from my radiation oncologist in Willmington but also another a completely different medical "system" at Duke Cancer Clinic because I inquired about it, first from my doctor (who was recommended to be by Duke) and then the original team doctor up at Duke.
Having been though what I have and if anyone here ever met me. I am a really active person and I would not have been comfortable monitoring a cancer inside of me. Everyone is different but I didnt have the option. Im going to end with this right now. so much to say but want to keep it in order. Somethings I cant agree with but that is only related to my experience.
One thing I can agree with 100% is to educate ones self. SO much credible information out there.
I'll have much more to say when time allows. Heading into the weekend can be a challenge sometimes.
I appreciate your kind words. This IS a brutal cancer and one that does not get the attention it deserves, it is serious and seemingly for some no way to stop it if it spreads far into the body or bones, they making progress yes and no case is the same. I know someone who has battled this for a decade, started when he was in his 40s, had radiation. Now later 50s, it's possible he has only a few years left. Some of that is his reluctance to act faster when his PSA started to rise.
Guys, if you think something is wrong, go to a doctor. Dont be afraid because it can be handled, if you ignore it, it is not going to go away.
I have many comments but want to take the time to answer.
WOW I had no idea of your post until today 3 days after you posted. I have a lot of answers to your questions and still recovering from radiation. Yes, me, just shy of 6 weeks 5 days a week. 28 treatments plus Orgovyx therapy until the middle of July.
My radiation ended March 25th. Im still recovering from it. Its made a condition I had worse but I was aware of this possibilty going into it. I have so much to add but I cant do it now. It will be a long one. I have a lot to say and I can even tell you about my inquiries about the spacer Gel not only from my radiation oncologist in Willmington but also another a completely different medical "system" at Duke Cancer Clinic because I inquired about it, first from my doctor (who was recommended to be by Duke) and then the original team doctor up at Duke.
Having been though what I have and if anyone here ever met me. I am a really active person and I would not have been comfortable monitoring a cancer inside of me. Everyone is different but I didnt have the option. Im going to end with this right now. so much to say but want to keep it in order. Somethings I cant agree with but that is only related to my experience.
One thing I can agree with 100% is to educate ones self. SO much credible information out there.
I'll have much more to say when time allows. Heading into the weekend can be a challenge sometimes.
I appreciate your kind words. This IS a brutal cancer and one that does not get the attention it deserves, it is serious and seemingly for some no way to stop it if it spreads far into the body or bones, they making progress yes and no case is the same. I know someone who has battled this for a decade, started when he was in his 40s, had radiation. Now later 50s, it's possible he has only a few years left. Some of that is his reluctance to act faster when his PSA started to rise.
Guys, if you think something is wrong, go to a doctor. Dont be afraid because it can be handled, if you ignore it, it is not going to go away.
I have many comments but want to take the time to answer.
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Best wish and hope things go well no matter what treatment you get.
..... (this is a great post, yeah, wow, you and family members have certainly had a run with cancer, glad your still doing ok)
Being this is a long post of yours I am going to reply in red, line by line as there is so much in here, I want to comment and not miss anything though I am sure I will but can answer the rest if I do.
As I posted throughout the thread and you know, the purpose is so people can make a list of questions to ask their doctors. Meaning to be informed of things you may not have thought to ask. THERE IS NO ADVICE HERE EXCEPT THINGS I WENT THROUGH AND MAYBE WANT TO ASK YOUR DOCTORS ABOUT for an informed decision, also many good resources on the internet. >
I wholly support the idea here that one has to be their own advocate, Ive already seen evidence of that, not only do you have to ask questions, you have ask pointed, and probing questions because IME at least doctors are going to gloss over some stuff. For instance unless you ask, probably no one is going to tell you that generally in the prostrate cancer "industry" when they say maintain function they mean "with drugs" even if you didn't need them before. In order to ask that sort of question you have to be educated enough to know it is a question. You have to make them tell you what they don't want to tell you.
^^ You hit this on the head. Questions are good and I do agree with you, there are going to be side effects of whatever you choose. Im still recovering from radiation that ended 3 weeks ago and into 3 months of a 6 month drug Orgovyx. Being I met with multiple specialists in their respective fields, radiation, medical (drugs), surgeon. Part of that discussion was about side effects and outcomes. They all were upfront about the downside of each, this was a team meeting with a panel of 3 specialists at Duke.
There are a couple of other ideas i would like to introduce (at least i think they are new):
1) I strongly feel you should get the opinions of for lack of a better word "disinterested" medical professionals that you trust. What I am saying here is along the lines of "don't ask a surgeon if you need surgery". So i think you should talk to someone who isn't going to make any money other than the office visit off of your decision. I'm not suggesting that as a course doctors would be dishonest, but I think a surgeon (or radiologist, or chemo guy) has an inherent bias that he/she is very good at what he/she does and will get the best result, i think that's only human and not necessarily a bad trait in a doctor, but it bears checking out. Also though i have no proof, I'm hearing that there are unwritten protocols at places about "who goes where" to an extent that makes sense as those doctors all have to work together day in and day out.
^^ I do sense some distrust of the industry and I get it. It was only by a stroke of luck that I was afforded the panel/team that met with me at Duke.
For others keep in mind I was diagnosed with prostate cancer, locally on the coast of NC. My local urologist called me up with the results of my biopsy that showed cancer. He pretty much on the phone gave me 3 choices = 1.watch and wait (nope, wasnt going to do that), 2. surgery or 3. radiation. When I questioned that I did not know, we went over things and he was ready to schedule a local radiologist to just meet with him, no commitment. I still hesitated and that is when he came up with another option. Meet with a team of three doctors up at Duke Cancer Clinic. Duke has no relationship to the health network I am in.
Duke cancer team was impressive. 3 doctors, just for me (and wife there too) to discuss my case for most the entire morning. THE VERY FIRST THING I WAS TOLD WAS THEY WERE THERE FOR ME, TO CONSULT WITH ME NOT TO TREAT ME AND NOT TALK ME INTO ANYTHING. The sole purpose of my visit was to look at my case. Fantastic, these doctors all specialized in prostate cancer and cancers related down there. IN fact the entire floor of the building was just for these types.
TO agree with you, yes, the surgeon believed in surgery, the radiation oncologist believed in radiation and the 3rd doctor was just there for me if I chose radiation if would be in conjunction with a drug, he was the medical oncologist.
All THREE doctors said "wait and watch" was not an option for me, they all were pretty upset at my high PSA and why my local urologist waited. (in so many words) My PSA was 11.5 but the drug I was taking meant the PSA had to be doubled to 23 as that drugs lowers the PSA reading. This threw my into Grade 3 cancer but the best of the 3 grades. Still not great. My PSA was suggesting it may have spread.
IN fact they bumped me up to "high risk" With that said, I dont feel the doctors were doing a mis service by promoting (lack of better word) their expertise, surgery or radiation. This is what they believe in. Surgeon believes in surgery and Radiation believes in radiation.
With that said, all three doctors met individually with us, then came back for a second round of questions. The surgeon was up front with what the side effects would be, complications and recovery time.
Radiation doctor did the same.
The two types of treatment present complications, however I was told with surgery it would be immediate and radiation more possible years out.
At that point I was still undecided but strongly leaning to radiation even before meeting with them by doing HOURS of research (and wife agreed only once after I told her she tried to not influence me)
All the doctors knew I was still open to both but undecided and strongly leaning towards radiation. Once the surgeon looked at my abdomen, the second he saw the scars from a burst appendix, without hesitation he said, "wow, this just helped you make up your mind." HE suggested no one is going to be able to do robotic on me with the scars I had, robotic needs a few holes that the procedure is done and they cannot do it through scar tissue. He suggested he knew of one doctor in Florida who maybe able to. HE was willing to do it by scalpel but looking at me said there would be a 20% chance he would not be able to proceed once he opened me up. He was willing to do it, if I understood that.
Bottom line? Individually they asked me the 3 most important things/concerns to me. My answer was first was incontinence, second sex, third I forget
For me then it meant radiation. Meaning after treatment the odds would be lower than surgery by a significant margin. However, yeah, he did bring up the words, for me, such as difficulty going to the bathroom things can be corrected. Right now (but getting a little better) its hard completely emptying my bladder so I get up a lot at night. It's brutal, but I THINK getting better. I rather have this than no control though.
Bottom line is, I chose radiation and to build creditability. They asked where I live, when they heard its a 3 hours drive they told me I do not have to be treated there, that radiation now it standard and they can do it anywhere. I still wanted to have Duke do it, but they assured me my local place is fine.
When I hesitated they offered one more thing. There is a radiation oncologist they like so much, (all 3 of them) that they wanted him to come up to Duke to work there but he wanted to stay at the shore. Home run for me. guy was great.
2) We should all to a person be outraged that in 2025 so much time and money has been wasted on research, studies and testing that has no practical use in human medicine while we ignore more human relevant testing like cells on chips. We've all heard that we've cured cancer in rats thousands of times, but not in humans, Ok captain obvious here RATS ARE NOT HUMAN, why do we continue to try to cure cancer in rats? Why does so much money taxpayer and private go to research methods that don't translate to humans. This is really sorta out of the scope of this thread, but do some research on that if it interest you.
3) In spite of 2) progress is being made, there are better options now than even 5 years ago, radiation has improved, there are things like seed therapy and focused options.
What I have learned, again, Yes, prostate radiation was almost the dark ages in the 1990s Todays radiation equipment (ask your Dr) at least what I received is much more focused to avoid as much as possible damage to surrounding tissue. First I had 3 gold balls inserted into my prostate that stay there forever now. They are injected with a needle.
Next step is an MRI and they also mark your body for the radiation. Once radiation starts, before each session of actual radiation application a CT scan is performed by the radiation machine. That CT imaging is overlaid with the original MRI and gold balls to accurately focus the radiation beam on the prostate. The whole treatment, takes maybe 10 minutes every day and you are out the door. The BEAR is you have to drink 32 ounces of water before each treatment *LOL*
So I'll tell you a little bit about how i came to have a prostrate cancer diagnosis, i sorta backed into it. Im already under the care of a urologist after an emergency room trip in late December for flank pain, I KNEW I had a kidney stone, that is another thing I've got more experience with than i would like, about to have my 5th or 6th procedure. I was referred to my urologist from the emergency room. We had never really gotten around to getting new doctors after the move so i figured it was also time to find a new GP. During routine blood work my PSA was found to be slightly out of range. We did a round of Cipro and re did the PSA with a Free PSA and it was essentially unchanged. With my history my GP was concerned and thought i should talk to the urologist. When i did, considering my number and family and personal history he said why don't we just do a biopsy while you are out and i agreed. I'm not upset about it, but if i knew what i know now, i might not have done that. Also my GP tried to explain the Free PSA, but i don't think knowing what i know now it was necessary as it seems to be an attempt to determine is the elevated PSA is from an enlarged prostrate. I had had an MRI at the E-Room and "enlarged prostrate" was mentioned. I mentioned this MRI to both my urologist and GP, but i'm not sure either of them looked at it. if someone had then we would have known that my PSA corresponded to the expected for the volume of my prostrate. I SHOULD have INSISTED they both review it. also i went a while without a test due to moving, but my PSA has never been low.
Example one, I should have researched the free PSA test and understood it better, i also should have researched the PSA value relative to Prostrate volume.
So back to the day of the procedure / biopsy - They got it approved by insurance, had me sign the additional paperwork including genetic testing and a complete review of all 12 cores rather than just a portion of the cores. They explained to my wife in the waiting room what was happening and i think we were both relived that it was being taken seriously. They also scheduled follow ups for the results and as it happens another procedure. Also think what you will of me but there is a ZERO chance he is doing a biopsy on my prostrate with me awake in his office, it is not happening. So i think we were probably both (me and the doc) relived that we weren't going to have to have that fight. What wasn't explained very well was that they perforate your bowel when they do a biopsy in the United States (typically at least) So they do the thing that every surgeon absolutely does not want to do due to the risk of infection, on purpose. Im now finding out that there is a faction of doctors who have moved away from biopsies in favor of MRIs. It's going to have to be a very compelling case for me to ever get another one. Apparently, in other developed countries the are generally done via a different route and under general anesthesia.
^^^ All cores are reviewed. My first or second of 4 biopsies had 15 samples taken, the others 12. There is a statement for each and every core. Line by line. I can maybe post my results for one someday. Wondering if you ahve "My Chart" with your network, all test results are there.
MRIs cannot detect prostate cancer ( as far as I was always aware). Every biopsy I had an MRI was normally done first. They then use that MRI to locate hot spots in the prostate and make sure to get a sample from that area. A hot spot can be cancer, an infection, or inflammation. My first 3 biopsies always had something but was non cancerous at the time.
I think a bit overstated that doctors dont want to do biopsies at least in my experience. Yeah, I read the "media" reports, seems like the latest rage to knock biopsies. We all know the media. Does anyone know of anyone treated for cancer, any type, that isnt confirmed with an actual sample of tissue? I would suggest no. Who would go under treatment without a tissue sample confirming cancer?
Ok, with that said, the latest, greatest is a PSMA SCAN. Only recently developed. The PSMA scan targets PSA cancer anyplace in your body. (so maybe a way to cut costs and skip the biopsy?, not for me) I will say, I have seen some doctors almost call it malpractice that ONCE A BIOPSY confirms cancer that a PSMA SCAN should be done to see if it has traveled outside the prostate. From the time I visited Duke, the doctors ALL were on the same page to get the PSMA SCAN done right away. However they were booked almost 6+ weeks out. They set it up for me to not lose time, but told me if I get get it locally faster near me do it and cancel the one they set up, said to try calling the doctor they liked here on the coast. I did, the office there was fantastic, between them and Duke two totally unrelated health networks, I was able to get it 3 weeks earlier. This scan so new, that when they set it up, the scheduler in radiology had to put me on hold as she wasnt sure they did it there. Bottom line they inject radioactive fluid that attaches to PSA cancer cells (uptakes) the dye and screams out in color on a scan where there is PSA Cancer. (it can also detect other cancers I am told but not with the dye if I understood it correctly)
Example two, I should have researched the biopsy prior to talking to the doctor and if i had done one in conjunction with two i probably would not have done the biopsy.
Also I need to say this, I think i have a good urologist, if you have a kidney stone here id tell you go to him without question, he's a great doctor for that.
So, on the 4th we were to go to his office and get the results of the Biopsy. They had not called and said "hey everything looks great" so rightly or wrongly I was pretty much expecting it wasn't good news. It took my wife completely by surprise though, so I think I should have prepared her better for it. More along these lines in a bit. So we had a conversation about the last procedure and got some pleasantries out of the way. I complained a bit of some lingering issues and said "I guess if i'm about to die of prostrate cancer it doesn't really matter". and he said "You're not about to die of prostrate cancer". What he did not say is "You don't have prostrate cancer". We then talked about the biopsy and the cores and the gleason score. To his credit he did say I don't think we need to do anything right away, we need to get a MRI focused on the prostrate, a follow up PSA and meet agin in 3 months. We did discuss other options and he said something along the lines of "Some people would want it out, and thats a reasonable position" He then sold Robotic surgery by his partner (again to his credit he said his partner is very good at it does it more) and related the risk of radiation with what i believe is a somewhat outdated perspective. He then said that if he had to chose he would go with surgery, "grudgingly". I am not sure this is strictly true, i believe him if we are talking about radiation vs surgery, but if active monitoring is on the table....
Since I commented on radiation already I wanted to make clear I look at surgery as outdated and the radiation the treatment of choice. I think far more risk with surgery, some even call biopsies invasive. But this was for me and my thoughts. One downside of radiation, once you get it, if it comes back, you cant get radiation again, and most likely unless things improve, you can get it removed after radiation. But then again, I am told 25% of the radiation prostate patients here on the coast are for prostate cancer where the person already had the prostate removed. However the risks of surgery and possible side effects for me discounted it. Bottom line, I was told by all doctors, the outcomes in lifespan is the same. I chose the one that I thought I would less risk to my quality of life. With that said I have a close friend who had his removed a decade ago and doing fine. But the operation almost killed him. Not related to the removal, he developed clots in his lungs a couple days later. Ended up in the hospital doctor said to him I dont know how you lived. None of this weighed on my decision though, each procedure has risks.
Example three: I should have done some more research on prostrate cancer and better known questions to ask, you can bet we will have a more detailed conversation in 3 months. I'm probably going to tell him what i'm going to do and he's going to have to change my mind if he doesn't agree.
Ok, so there is another thing here, actually a couple, maybe even a few.
1) I sit here as someone who has been told "you have cancer" twice. It's scary, it's scary for your partner too, maybe even worse for them. For prostrate cancer in particular my advice is do not let then scare or rush you into an irreversible decision without some evidence that your particular prostrate cancer warrants urgency. As one doctor said "waiting times that would be irresponsible for any other cancer, can be fine for most prostrate cancer".
I agree dont rush, make an intelligent decision with multiple opinions. I do not agree with waiting if action is called for. I hate when people are told no rush. Maybe there is no rush but I know of another that had an aggressive form that at first the doctor said no rush, then on his own he got another PSA test and off the scales - doctor admitted he was wrong. My question and suggestion to anyone is be proactive, get opinions! It is cancer and no one size fits all and not all types are innocent.
One of the people I discussed earlier kept their family nearly in the dark about the prognosis. This person let their family believe almost until the day they died that everything was going to be fine. It was cruel, they were surprised when the death occurred. Literally no one else was and most of us - forgive us - considered it a mercy, but he let the ones closest delude themselves and there was considerable fall out. If you get really bad news, i implore you to not do this to your loved ones.
Another one of the people discussed earlier had a spouse that was a bit of a bulldog, that educated themselves and advocated for the patient when they weren't able and asked all the questions and made them tell the whole truth. If your spouse is capable, let them be that person.
So i do have a few questions some folks may be able to guide me on:
Why does no one say anything about chemo anymore?
The following is to the best of my knowledge as I know it = Chemo sadly is when all options run out. When it spreads into your body. We know someone close, where this has happened, its almost hopeless at this point, he waited to long after radiation of a rising PSA and has now spread. He is offered Chemo or drug therapy with Orgovyx combined with another drug. The drug therapy will add a few years to his life. He doesnt want Chemo and if I am correct that might have been more effective. Im not sure what happens if it gets into your bones however or much of anything in this stage.
Has anyone had localized or targeted (AKA Focused) seed radiation or ultrasound (EX Tulsa Pro)
Seed has been around a long time I asked about other technologies and for me I was told they are not recommended. That they have a way to go to where the track record is complete. Duke does a lot of trials and new tech but they told me the track record is only a couple years at this point, so no other options were offered me.
What does anyone know about barrier gels in relation to radiation?
I asked about the Gel Spacer between the rectum and prostate. My primary radiation oncologist told me that they have had issues with them and why he doesnt recommend it. Im not sure I agree though, however he said I want it, a regular urologist is the one who would do it for me.
You must know me by now, but I wanted to confirm not getting a spacer. SO through "My Chart" I shot a message up to the radiation oncologist I met up at Duke as part of my evaluation, who at the time encouraged me if I had any questions to call, actually they all offered that.
His response was they dont feel its needed with the accuracy of the machines. Im not sure I agree as I read all the marketing material from that company but I now heard form two of my specialists and honestly wast looking to discount their feelings and also go through another procedure with yet another doctor. If someone told me their doctor thinks it is a good idea I would certainly agree with them. But what do I know?
Has anyone had short term radiation (Like 5-7 days vs 5 weeks)?
Yes, that was me, but I guess I posted on that, in fact I hope after all I wrote that you wanted to hear my thoughts!!! 28 treatments I had, jsut shy of 6 weeks. First week was a breeze, actually was enjoying it! People in the cancer center so friendly, felt good about taking care of myself, second week still ok, third week getting very tired by the end of the day and things getting brutal getting up during the night to use the bathroom many times a night, however I had that condition before radiation this just made it twice as bad. By the 6th week I was literally burnt out. In pain going to the bathroom, getting up 6 or 7 times a night. Urgently had to go during the daytime too and always tired and unmotivated to do anything. I was not expecting any or most of this but as I think back it was touched on. So here I am now, 3 weeks no treatments, I think I have gone on a scale of 10 with 10 being the best. from a 0 out of 10 to now a 6 out of 10 3 weeks later. I am noticing a progression of being better. Still tired a lot but keep in mind I am taking Orgovyx until the middle of July.
I HOPE ANYONE ELSE CAN ALSO STATE THEIR THOUGHTS! EVERYTHING I TYPED IN RED HAS BEEN MY EXPERIENCES AND THOUGHTS, NO TREATMENT IS RIGHT FOR EVERYONE, ONLY YOU AND YOUR DOCTOR CAN KNOW THAT. BE PROACTIVE, EDUCATE, ASK QUESTIONS, EVEN DISCUSS WITH YOUR DOCTOR IF YOU SHOULD GET ANOTHER OPINION. MY DOCTORS SUGGESTED I DO IF I WANTED TO.
Ps. I spent hours answering this and my brain now fried, you will ahve to excuse mis-spelled words or typos
All right, well out for now.
LAST BUT NOT LEAST, GOOD LUCK TO YOU (SINCERELY) AND YOUR DECISIONS. PROSTATE CANCER SUCKS, THERE ISNT ONE STANDARD WAY TO TREAT IT AND IT AFFECTS SO MANY BODILY FUNCTIONS BUT IT IS TREATABLE AND CAN BE ARRESTED, BE PROACTIVE BEFORE IT SPREADS. DONT SHY AWAY FROM TREATMENT OR TESTS WITH YOUR DOCTOR.
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Correction -
"One downside of radiation, once you get it, if it comes back, you cant get radiation again, and most likely unless things improve, you can get it removed after radiation"
Should say to ask your doctor because I was informed by all parties that
One downside of radiation, once you get it, if it comes back, you cant get radiation again. Also after radiation you can not get your prostate removed if cancer comes back.
The reason I am told is pretty much radiation turns the prostate to "jelly" and compounds the issue to avoid nerve damage which is already an issue for prostate removals without radiation. With that said, I am led to believe (check with your own doctor) in my case, if I had my prostate removed instead of radiation there is still @ 25% chance over time cancer will return in surrounding tissue. Where with radiation and no removal that is less likely because the radiation does get some of the surrounding tissue.
This is why prostate cancer sucks. Both options are less than ideal and all I am told is, In my case stats say I will live just as long with either. However we found out surgery would have been tricky for me and helped make my decision. I also was more concerned about immediate side effects of removal and preferred radiation. Though radiation I found is no picnic, kind of brutal for me at the end but I have no incontinence at all and that was a scary concern for me if I had surgery.
To agree with @DuckRyder I do think if you have concerns you do need to ask the specialist directly. They will mention possible side effects and then comment but "things can be done to fix it" Well if you run across that, ask the questions what can be done to fix it so you can be fully informed. I was made aware if I already get up a lot to use the bathroom at night, after radiation it will be worse "but things can be done to fix that" I never asked what. But I knew in my mind even people with enlarged prostates there are a number of procedures to open things up. Meaning standard procedures. However I wish I asked if that was the same for after radiation.
I have no regrets at my course of treatment I chose. More involved then I thought but pretty much in one piece and still slowly recovering. Still on drug therapy for 3 more months. My only real issue is tired from the med AND completely emptying my bladder but I am seeing progress on that so I feel very lucky to be in this good shape. I did not expect the treatments to be this draining on me physically and mentally but I want to live and a small period of my life to get through.
"One downside of radiation, once you get it, if it comes back, you cant get radiation again, and most likely unless things improve, you can get it removed after radiation"
Should say to ask your doctor because I was informed by all parties that
One downside of radiation, once you get it, if it comes back, you cant get radiation again. Also after radiation you can not get your prostate removed if cancer comes back.
The reason I am told is pretty much radiation turns the prostate to "jelly" and compounds the issue to avoid nerve damage which is already an issue for prostate removals without radiation. With that said, I am led to believe (check with your own doctor) in my case, if I had my prostate removed instead of radiation there is still @ 25% chance over time cancer will return in surrounding tissue. Where with radiation and no removal that is less likely because the radiation does get some of the surrounding tissue.
This is why prostate cancer sucks. Both options are less than ideal and all I am told is, In my case stats say I will live just as long with either. However we found out surgery would have been tricky for me and helped make my decision. I also was more concerned about immediate side effects of removal and preferred radiation. Though radiation I found is no picnic, kind of brutal for me at the end but I have no incontinence at all and that was a scary concern for me if I had surgery.
To agree with @DuckRyder I do think if you have concerns you do need to ask the specialist directly. They will mention possible side effects and then comment but "things can be done to fix it" Well if you run across that, ask the questions what can be done to fix it so you can be fully informed. I was made aware if I already get up a lot to use the bathroom at night, after radiation it will be worse "but things can be done to fix that" I never asked what. But I knew in my mind even people with enlarged prostates there are a number of procedures to open things up. Meaning standard procedures. However I wish I asked if that was the same for after radiation.
I have no regrets at my course of treatment I chose. More involved then I thought but pretty much in one piece and still slowly recovering. Still on drug therapy for 3 more months. My only real issue is tired from the med AND completely emptying my bladder but I am seeing progress on that so I feel very lucky to be in this good shape. I did not expect the treatments to be this draining on me physically and mentally but I want to live and a small period of my life to get through.
I posted a lot in these 11 pages and many times I spoke highly of my wife and I trip to Duke University Cancer Clinic for an impartial consultation with three specialists in their respective fields regarding prostate cancer. I feel fortunate to have had this experience for the information I received even though I am being treated locally in a different health network. I have relied on what they advised to ask and be an advocate for myself locally. If it Duke wasnt three hours away I would have got my radiation there. However I felt their advice I would be fine locally was enough for me. It still allowed me to ask specific questions and even have input on the drug therapy I was going to get which my local urologist never prescribed until me. If I chose surgery I would have stayed at Duke I think.
DOnt misunderstand me, many good doctors all over the country. They just instilled a certain confidence and took maybe 2+ hours with us just to discuss my case. Just wonderful people/doctors.
Anyway, I hesitate to post this. but for me personally the caliber of the specialists I met a Duke gave me the confidence to move forward locally. I would stress to anyone, if they have a renowned cancer center in their state or reasonable area, there is nothing wrong by calling to ask if they will evaluate you as a second opinion or even primary. Even if you are not going to be treated there.
Ok. anyway, I got this email the other day. This was one of the 3 specialists at Duke that consulted with my wife and I. Who were there just for us, to evaluate my cancer diagnosis and develop thoughts and suggestions to help in my decision. AS posted many times, they were not "there for me" to treat me. They were there to offer their expertise.
I actually learned of Orgovyx from this doctor so once back in my area and my health network I am being treated in. I asked for it. It was the first time my doctor ever prescribed it which he did but then I moved to a medical oncologist specialist who monitors me and familiar with the drug. The other drug I am told is also fine and "standard" this new one works in a different way.
This was one of my Duke Specialists that I just got an e-mail from all three of them were great though and my wife and I were thrilled at the experience with them.
If one thing I learned is the human body so complex and cancer is too. I would always seek to look for specialists in the type of cancer you have. He certainly has the credentials look at his signature.
DOnt misunderstand me, many good doctors all over the country. They just instilled a certain confidence and took maybe 2+ hours with us just to discuss my case. Just wonderful people/doctors.
Anyway, I hesitate to post this. but for me personally the caliber of the specialists I met a Duke gave me the confidence to move forward locally. I would stress to anyone, if they have a renowned cancer center in their state or reasonable area, there is nothing wrong by calling to ask if they will evaluate you as a second opinion or even primary. Even if you are not going to be treated there.
Ok. anyway, I got this email the other day. This was one of the 3 specialists at Duke that consulted with my wife and I. Who were there just for us, to evaluate my cancer diagnosis and develop thoughts and suggestions to help in my decision. AS posted many times, they were not "there for me" to treat me. They were there to offer their expertise.
I actually learned of Orgovyx from this doctor so once back in my area and my health network I am being treated in. I asked for it. It was the first time my doctor ever prescribed it which he did but then I moved to a medical oncologist specialist who monitors me and familiar with the drug. The other drug I am told is also fine and "standard" this new one works in a different way.
This was one of my Duke Specialists that I just got an e-mail from all three of them were great though and my wife and I were thrilled at the experience with them.
If one thing I learned is the human body so complex and cancer is too. I would always seek to look for specialists in the type of cancer you have. He certainly has the credentials look at his signature.
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Medicare -
Ps, as far as the medical system regarding all these services, consultations and services I have received, medicare paid for everything. My consultations with 3 specialists at Duke cost me less than $100 with my Advantage Plan in 2024
With minor co-pays in 2024 and tiny deductible in 2025 the most costly is maybe $2000 (Part D Out of pocket limit) for 6 months of a drug that I selected.
Both my advantage plan in 2024 and medigap A,B,N, & D in 2025
How could I have been treated better? Love the USA for the best available options and ability to be your own advocate.
Ps, as far as the medical system regarding all these services, consultations and services I have received, medicare paid for everything. My consultations with 3 specialists at Duke cost me less than $100 with my Advantage Plan in 2024
With minor co-pays in 2024 and tiny deductible in 2025 the most costly is maybe $2000 (Part D Out of pocket limit) for 6 months of a drug that I selected.
Both my advantage plan in 2024 and medigap A,B,N, & D in 2025
How could I have been treated better? Love the USA for the best available options and ability to be your own advocate.
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Another aside about Medicare is I changed from Advantage to “regular “ Medicare. No difference except I pay $180 premium per month and no dental. Ugg. No eye either. But my gym membership is covered. Haha oh well
Thanks
and praise and prayers to you
Thanks
and praise and prayers to youYeah, miss my advantage plan. I may go back next year once my treatment is done. Im paying $133 a month (going up $10 in June) with BCBSNC plus the $185 (ish) for part B. Now have A,B,N,D so $318 a month and never a health care bill pretty much. Except drug out of pocket of 2k. Plus I have to pay for my contact lens and dental. (My wife put me under her company plan for that but you still pay monthly for it)Another aside about Medicare is I changed from Advantage to “regular “ Medicare. No difference except I pay $180 premium per month and no dental. Ugg. No eye either. But my gym membership is covered. Haha oh well
Thanks
I do get the gym thing up to $100 a month but havent used it (yet)
What makes me nervous about Advantage C is the out of pocket limits are forever going up but still some very reasonable ones here.
I do miss eye and dental. But once in it, your stuck except some lucky states that the law allows you back into Medigap without underwriting should you chose.
My state doesnt allow it however part of BCBSNC marketing is, if you are in one of their Advantage plans you can switch into one of their Medigap plans with no underwriting. I just dont know to believe it will be a forever thing.
Dental is just a money swap. The limits generally suck and almost all policies have significant waiting periods.
I agree but it came with my MA plan and my dentist accepted no problem. Currently no plan pay cash for check up
My kid is our dentist. Although she did send me to an endodontist for a root canal 2 weeks ago. First ever for me.
The regular charge was $1500 but the endodontist charged me $750...l guess it's the Penn Dental School alumni club bro deal. I'm not complaining. We get X-rays and cleanings free but we pay for fillings, crowns, etc...discounted but I'm fine with it.
A question that I had, how do they know if you have prostate cancer that needs to be treated vs the slow kind that, depending on your age, won't kill you and they can manage the symptoms?
@DuckRyder , a good friend of mine had prostate biopsy while awake. He referred to it as harpoons and said it was most unpleasant.
@DuckRyder , a good friend of mine had prostate biopsy while awake. He referred to it as harpoons and said it was most unpleasant.
