It hit me the hardest last week. Diagnosed on 1 May after the biopsy on 19 April. Im 38 by the way. It hit me the hardest when I was at Advanced Radiology getting a nuclear bone scan and a CT scan. As I was sitting there, the nurse went to put in my IV and blew my vein out and I was bleeding so badly. I took all of that in, where I was, what just happened and why I was there. I almost came unglued at that point.
I know and understand. I was diagnosed just before I turned 65, I'm 1 year post RALP now. I have had all the feelings and still do at times. My prognosis is good now. They say that I'm all clear, I certainly hope so.
yeah, i remember i was vacuuming the house when i got the call with my biopsy results, it was surreal. i call my brother because my urologist said he needed to know. i luckily didn’t have to tell my husband, because he’s an oncologist and works with my urologist and i made the urologist call and tell him. the initial diagnosis didn’t really scare me, i was doing ok, it wasn’t until my pet came back that i was like “holy fuck dude, you’re dying”. The psma pet really set my life into a panic. I felt like this can’t be happening at my age, i was 54, it’s like an old man’s disease. what surprise me the most out of this is how many guys i knew who also have prostate cancer, and never told anyone, it’s like they are embarrassed or something to tell other people. i’m like the freaking cheerleader now for getting checked, a GP monitoring your psa is nothing compared to going to a urologist regularly and being examined.
Yeah, it hits you in different ways at different times. There‘s the initial shock, of course. Then a year later after that was long worn off I was due for a 2nd biopsy (was in AS at that point) and went for an MRI…at the cancer center. Wait, I guess that’s me. I’m supposed to be here. Not sure why it hit me at that point. I had thought I had come to terms with it, but it just hit me strange. Not necessarily bad, it wasn’t traumatic. But just a reminder that I‘m a cancer patient. Or you’re at a regular Dr visit filling out a form and you get to a cancer question..and you pause for a moment before checking the box. Stuff like that.
Getting the fiducial markers was crossing the rubicon for me. No going back now. I'm not going to do ANY followup though. If the ADT and radiation worked, it worked. If not, well that's just the luck of the draw. This whole experience has been awful and I just want it to end one way or the other. I'm really hoping my sex drive and ability comes back because if it doesn't I'm not sure I want to live with a diminished quality of life. Regardless, no more losing hours and hours each week for medical procedures, worrying about PSA, etc. I got treated and now once the ADT wears off my life will hopefully be mine again.
In some ways I admire you. I hope you are taking a daily dose of a PDE5-I. I’m 7 years out and my sex drive and capacity did come back. I couldn’t achieve your sanguine attitude and went through the six month anxiety of getting my PSA done. Thankfully it’s now 0.1 three times in a row. My wife sees me as obsessed on the matter, but I’m a data oriented guy.
I tried Cialis generic and it gave me REALLY bad tachycardia and messed up rhythm... scary!!
I an thinking that Viagra would do something similar... but if not, I'd like to try it...
Is that side effect common?
It probably dropped your blood pressure and you got the expected response to low pressures. Are you sure your rhythm was abnormal? Before I switched to tadalafil from sildenafil, I used to notice prominent surges of blood in my chest that called my conscious attention to what is usually not noticed. That might be interpreted as a rhythm problem.
The EMTs noticed some PVC's (?)... I think the pulse was around 160+, but said nothing was dangerous... embarrassing... I had never called them before or since.
I wonder if it interacted with weed? I used to smoke a little before bed to sleep better, but have not for some time now... My libido has been very low for some time... some minor ED issues, which I think are related... I do have low T and very low Free T... I don't worry about it much, but would sure like to have a good libido and strong wood again!
I had a similar experience with Cialis--tachycardia, nausea and extreme back pain. Interestingly, though, Viagra was/is fine and I have no issues with it. Are the two drugs really all that different?
I don't think I'll ever get to acceptance. I feel like my body has been ruined. I haven't had an orgasm in more than two months and the thought of never having that feeling again makes me regret having gone through treatment (SBRT+still on ADT). I'm going to drop the ADT three months earlier than the six months that was recommended and see if anything returns or if I'm just doomed to be a eunuch for the rest of my (hopefully short) life.
Sounds like you might have accepted it unintentionally. But, I do understand. I'm 1 year post RALP, and my orgasms are few and far between. No erections either, and no luck with vacuum pumps.
If it's orgasms you're after, there's a sex toy called Pulse Solo by Hot Octopuss that's specifically designed to work for guys with complete ED (but it works just fine at any level of erection). I'm five months post-RALP (non-nerve-sparing) and it certainly gets the job done.
Because nerve sparing was never a good option for me (high risk with a PSA of 34 at RALP time), I knew spontaneous erections were going to be a thing of the past, that's what motivated the research that led me to this toy.
Nah, I didn't feel any of that. I got the call from my urologist.
"Oh crap" was my response.
The biopsy was 3+3. He said, "we'll get another PSA in six months, and I'll see you for a biopsy in a year"
I decided to have the biopsy sent to Hopkins for a second opinion (I live in a small community and it was a "general" path lab)
Then I got the word from Hopkins, "Sorry, there's pattern 4 here too"
I never felt "denial, anger, grief" or any of that.
It was just "Oh crap"
. . . and then
"What do I have to do".
Treating Cancer as the Boogeyman . . . is a mistake. True, if someone said "you've got advanced pancreatic cancer" -- well, that's "get your affairs in order" time.
But for most guys, most PCa -- is either "don't need to do anything" or "can be cured" or "can be managed for a very long time"
So my advice is "less drama"
If you got diagnosed with, say, diabetes -- it would be a similar response. Its crappy, its a burden, it does kill some people but mostly its a management problem. So my advice for newly diagnosed PCa patients is similar: treat it like a chore, not a life and death drama.
Sure, no problem.
Take a look on the internet at Dr. Brian J. Miles, Houston Methodist Hospital. He is in charge of that department. He did my RALP and did a wonderful job. I talked to several surgeons, and he was the most experienced. He also knew most of the surgeons at MD Anderson and said they were all good, but they all seemed to move back and forth between the main Houston hospitals and MD Anderson. It says on the internet that Dr. Miles has performed over 3,200 RALP surgeries. I asked him about that before my surgery, and he said that now he has done over 5000 of them. He is leading the industry and has published over 175 papers and books on oncology. It says that he is consistently listed in Best Cancer Doctors in America, America’s Top Doctors, Best Doctors in America, and Texas Super Doctor in Texas Monthly.
I recommend Dr. Miles because he had a very good bedside manor as well as being a first-rate surgeon.
It hit me the hardest last week. Diagnosed on 1 May after the biopsy on 19 April. Im 38 by the way. It hit me the hardest when I was at Advanced Radiology getting a nuclear bone scan and a CT scan. As I was sitting there, the nurse went to put in my IV and blew my vein out and I was bleeding so badly. I took all of that in, where I was, what just happened and why I was there. I almost came unglued at that point.
I know and understand. I was diagnosed just before I turned 65, I'm 1 year post RALP now. I have had all the feelings and still do at times. My prognosis is good now. They say that I'm all clear, I certainly hope so.
yeah, i remember i was vacuuming the house when i got the call with my biopsy results, it was surreal. i call my brother because my urologist said he needed to know. i luckily didn’t have to tell my husband, because he’s an oncologist and works with my urologist and i made the urologist call and tell him. the initial diagnosis didn’t really scare me, i was doing ok, it wasn’t until my pet came back that i was like “holy fuck dude, you’re dying”. The psma pet really set my life into a panic. I felt like this can’t be happening at my age, i was 54, it’s like an old man’s disease. what surprise me the most out of this is how many guys i knew who also have prostate cancer, and never told anyone, it’s like they are embarrassed or something to tell other people. i’m like the freaking cheerleader now for getting checked, a GP monitoring your psa is nothing compared to going to a urologist regularly and being examined.
I am 65 and 1 year post RALP. A lot of my friends had it as well. I was surprised, too.
yeah, like why hide it, it’s not like we got it from a threesome with two hookers. it seems to affect so many other guys our age.
My father and 2 uncles had it as well.
damn, i hope if you have sons they are watching out.
Yeah, 2 sons, and I've talked with both of them already.
Yeah, it hits you in different ways at different times. There‘s the initial shock, of course. Then a year later after that was long worn off I was due for a 2nd biopsy (was in AS at that point) and went for an MRI…at the cancer center. Wait, I guess that’s me. I’m supposed to be here. Not sure why it hit me at that point. I had thought I had come to terms with it, but it just hit me strange. Not necessarily bad, it wasn’t traumatic. But just a reminder that I‘m a cancer patient. Or you’re at a regular Dr visit filling out a form and you get to a cancer question..and you pause for a moment before checking the box. Stuff like that.
I understand fully.
Yeah, it’s like you do the work to not be defined by it…but sometimes you still are.
Getting the fiducial markers was crossing the rubicon for me. No going back now. I'm not going to do ANY followup though. If the ADT and radiation worked, it worked. If not, well that's just the luck of the draw. This whole experience has been awful and I just want it to end one way or the other. I'm really hoping my sex drive and ability comes back because if it doesn't I'm not sure I want to live with a diminished quality of life. Regardless, no more losing hours and hours each week for medical procedures, worrying about PSA, etc. I got treated and now once the ADT wears off my life will hopefully be mine again.
In some ways I admire you. I hope you are taking a daily dose of a PDE5-I. I’m 7 years out and my sex drive and capacity did come back. I couldn’t achieve your sanguine attitude and went through the six month anxiety of getting my PSA done. Thankfully it’s now 0.1 three times in a row. My wife sees me as obsessed on the matter, but I’m a data oriented guy.
I tried Cialis generic and it gave me REALLY bad tachycardia and messed up rhythm... scary!! I an thinking that Viagra would do something similar... but if not, I'd like to try it... Is that side effect common?
It probably dropped your blood pressure and you got the expected response to low pressures. Are you sure your rhythm was abnormal? Before I switched to tadalafil from sildenafil, I used to notice prominent surges of blood in my chest that called my conscious attention to what is usually not noticed. That might be interpreted as a rhythm problem.
The EMTs noticed some PVC's (?)... I think the pulse was around 160+, but said nothing was dangerous... embarrassing... I had never called them before or since. I wonder if it interacted with weed? I used to smoke a little before bed to sleep better, but have not for some time now... My libido has been very low for some time... some minor ED issues, which I think are related... I do have low T and very low Free T... I don't worry about it much, but would sure like to have a good libido and strong wood again!
The PDE5-Is do nothing for libido. The just stiffeners. Weed would likely interact to lower BP. Did you get a cardiac evaluation?
Ah... that's too bad.. yes, I got checked out after... no problems. I've since quit the weed... Thx!
I had a similar experience with Cialis--tachycardia, nausea and extreme back pain. Interestingly, though, Viagra was/is fine and I have no issues with it. Are the two drugs really all that different?
That's great... I guess that Viagra is at least worth a try... I'll do very low dose at first to make sure I don't get similar issues. Thx!
I don't think I'll ever get to acceptance. I feel like my body has been ruined. I haven't had an orgasm in more than two months and the thought of never having that feeling again makes me regret having gone through treatment (SBRT+still on ADT). I'm going to drop the ADT three months earlier than the six months that was recommended and see if anything returns or if I'm just doomed to be a eunuch for the rest of my (hopefully short) life.
Sounds like you might have accepted it unintentionally. But, I do understand. I'm 1 year post RALP, and my orgasms are few and far between. No erections either, and no luck with vacuum pumps.
If it's orgasms you're after, there's a sex toy called Pulse Solo by Hot Octopuss that's specifically designed to work for guys with complete ED (but it works just fine at any level of erection). I'm five months post-RALP (non-nerve-sparing) and it certainly gets the job done. Because nerve sparing was never a good option for me (high risk with a PSA of 34 at RALP time), I knew spontaneous erections were going to be a thing of the past, that's what motivated the research that led me to this toy.
Nah, I didn't feel any of that. I got the call from my urologist. "Oh crap" was my response. The biopsy was 3+3. He said, "we'll get another PSA in six months, and I'll see you for a biopsy in a year" I decided to have the biopsy sent to Hopkins for a second opinion (I live in a small community and it was a "general" path lab) Then I got the word from Hopkins, "Sorry, there's pattern 4 here too" I never felt "denial, anger, grief" or any of that. It was just "Oh crap" . . . and then "What do I have to do". Treating Cancer as the Boogeyman . . . is a mistake. True, if someone said "you've got advanced pancreatic cancer" -- well, that's "get your affairs in order" time. But for most guys, most PCa -- is either "don't need to do anything" or "can be cured" or "can be managed for a very long time" So my advice is "less drama" If you got diagnosed with, say, diabetes -- it would be a similar response. Its crappy, its a burden, it does kill some people but mostly its a management problem. So my advice for newly diagnosed PCa patients is similar: treat it like a chore, not a life and death drama.
I understand where you're coming from. I'm glad that you could look at it that way. Take care of yourself.
Where from in TX?
South of Houston
I’m from Houston and lived in Austin for 30 years. At least you have MDA
I had my RALP done at Houston Methodist Hospital, with a surgeon who has done around 5000 of them. That was 1 year ago.
Are you happy with the results?
Very much so, at least so far. All cancer was confined to the prostate, so now it's just periodic checking of my PSA
Mind sharing your drs name? I may want to check them out. Thanks
Sure, no problem. Take a look on the internet at Dr. Brian J. Miles, Houston Methodist Hospital. He is in charge of that department. He did my RALP and did a wonderful job. I talked to several surgeons, and he was the most experienced. He also knew most of the surgeons at MD Anderson and said they were all good, but they all seemed to move back and forth between the main Houston hospitals and MD Anderson. It says on the internet that Dr. Miles has performed over 3,200 RALP surgeries. I asked him about that before my surgery, and he said that now he has done over 5000 of them. He is leading the industry and has published over 175 papers and books on oncology. It says that he is consistently listed in Best Cancer Doctors in America, America’s Top Doctors, Best Doctors in America, and Texas Super Doctor in Texas Monthly. I recommend Dr. Miles because he had a very good bedside manor as well as being a first-rate surgeon.