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Prostate Cancer: Have you been tested?
enforcinator
Member Posts: 232 ✭✭✭
Sometime last year My PSA went up and stayed high for two consecutive tests, so my urologist scheduled a biopsy, which came back positive. He told me most men my age and younger (I'm 55) just have the gland removed. It amounted to two days in the hospital, two weeks of recovery and back to life in general (according to him).
We got a second opinion from a radiology oncologist, but it seemed that 10 weeks of radiation would be too hard on me as I already have Ankylosing Spondylitis and the resulting scar tissue would make treating a re-occurrence more difficult, so we (my wife was in on the decision) decided to go with surgery.
I had difficulty at home after the surgery. I went to the ER twice for painful episodes. After two weeks of screwing around the doctor agreed something was wrong and I was re-admitted to the hospital.
Some time after the biopsy or surgery my bladder was passing urine into my pelvic cavity. The body's response was to vent the leaking urine from my bladder to the biopsy scar in my colon (adhesion?) by forming a fistula, an unnatural passageway.
I was taken back to surgery, not once, but twice over the next 24 hours and now I have a bag to pee in and a bag to poo in while we wait and see if the fistula will close on it's own. Presently over time (hours) my colon fills with urine from the leak.
If the fistula does not close on it's own, they will have to figure out something as the fistula is so far down in the pelvic cavity they are afraid to perform surgery as they may make it worse before they make it better.
My original surgery was Dec 12th. The emergency surgeries were on Dec 30th and Jan 1st. I am not allowed to lift anything over five pounds and spend most my time sitting in an upright position to keep natural pressure (the weight of my organs) on the fistula, waiting for something to change for the better, and of course filling and emptying my bags.
My advise to you is make sure you know all the facts surrounding prostate surgery. It is not just two days of your life in the hospital if something goes wrong as it did with me.
I am in no means trying to scare anyone. I don't have cancer now, which is a big plus. But when you get tested, don't just listen to the blue sky. Find out all you can.
I was never informed something could go wrong. and it did. [V]
We got a second opinion from a radiology oncologist, but it seemed that 10 weeks of radiation would be too hard on me as I already have Ankylosing Spondylitis and the resulting scar tissue would make treating a re-occurrence more difficult, so we (my wife was in on the decision) decided to go with surgery.
I had difficulty at home after the surgery. I went to the ER twice for painful episodes. After two weeks of screwing around the doctor agreed something was wrong and I was re-admitted to the hospital.
Some time after the biopsy or surgery my bladder was passing urine into my pelvic cavity. The body's response was to vent the leaking urine from my bladder to the biopsy scar in my colon (adhesion?) by forming a fistula, an unnatural passageway.
I was taken back to surgery, not once, but twice over the next 24 hours and now I have a bag to pee in and a bag to poo in while we wait and see if the fistula will close on it's own. Presently over time (hours) my colon fills with urine from the leak.
If the fistula does not close on it's own, they will have to figure out something as the fistula is so far down in the pelvic cavity they are afraid to perform surgery as they may make it worse before they make it better.
My original surgery was Dec 12th. The emergency surgeries were on Dec 30th and Jan 1st. I am not allowed to lift anything over five pounds and spend most my time sitting in an upright position to keep natural pressure (the weight of my organs) on the fistula, waiting for something to change for the better, and of course filling and emptying my bags.
My advise to you is make sure you know all the facts surrounding prostate surgery. It is not just two days of your life in the hospital if something goes wrong as it did with me.
I am in no means trying to scare anyone. I don't have cancer now, which is a big plus. But when you get tested, don't just listen to the blue sky. Find out all you can.
I was never informed something could go wrong. and it did. [V]
Comments
I had to go to 3 cities before i could find anyone to operate on me. I finally got someone from UNC Chapel Hill. Its a teaching hospital and my doctor was about 38. He is a great doctor.
If you dont feel comfortable with your doctor go somewhere like University of Oregon or something. Find the best doctors out there. Good luck and prayers asked and God bless. David
I am 46 and i dont smoke or drink alcohol. Last year they cut off 95% of my tongue for cancer and replaced my tongue with my thigh and 38 lymphnodes in my neck for cancer. They did not explain how bad things would be after surgery. Later i asked why and they told me that everyone is so different that they could not list all possible things that could go wrong or the side effects.
I had to go to 3 cities before i could find anyone to operate on me. I finally got someone from UNC Chapel Hill. Its a teaching hospital and my doctor was about 38. He is a great doctor.
If you dont feel comfortable with your doctor go somewhere like University of Oregon or something. Find the best doctors out there. Good luck and prayers asked and God bless. David
Wow, you have been through h*ll as well. My Dr is supposed to be the best in the area, but that doesn't guarantee anything I know. Oregon Health Sciences is my next call if this doesn't resolve itself.
quote:Originally posted by bpost
I am so sorry to hear of your troubles. I hope your relative youth is a positive factor in your recovery.
Thank you both for the kind thoughts. [:)]
Not trying to rain on your parade, but I know of two reoccurrences with full removal with surgery.
I was recently told of a couple men who had the two little holes (can't think of what they call this procedure) for removal of the prostate, I believe, in Columbus Ohio. Had this been available I would have defiantly considered this procedure, at the time I had the cancer I heard to many horror stories of removal by surgery
As I told the Dr if I have to have any more treatment I will have a hole in my belly the shrink factor is unbelievable. Hell after all the biopsy needles and freezing and I were a ball park frank I would hide to. Oh yes almost forgot ED to
Also lost a left kidney to cancer going on five years. Doctors claim the prostate kidney cancers are not related totally separate. Who the hell knows?
I has prostate cancer at 38. I was treated with seeds and then chemo. I was able to keep my prostate but it was really bad. The pain is so bad I couldnt sleep or work.The Dr. told me it will probably come back but it has been 11 years and so far so good.I now watch what I eat and drink because it can effect the prostate. I smoke and that is the leading cause of prostate cancer in men.I was treated at the university of Pennslyvania by Dr Druck. I dread the day it comes back[xx(]
Ever think of quitting if that's true?
You didn't ask our advice, but I will give you mine, regardless: You need to find a West Coast World Class hospital with a World Class surgical urologist to patch up the damage & prevent permanent disability. On the East Coast, I would go to Johns Hopkins Hospital in Baltimore. (That's where I went for my RRP, which was done by the Director of Reconstructive Urology.) Do your research, seek care by the best, even if you need to travel far from home.
Neal
quote:Originally posted by Oakie
I has prostate cancer at 38. I was treated with seeds and then chemo. I was able to keep my prostate but it was really bad. The pain is so bad I couldnt sleep or work.The Dr. told me it will probably come back but it has been 11 years and so far so good.I now watch what I eat and drink because it can effect the prostate. I smoke and that is the leading cause of prostate cancer in men.I was treated at the university of Pennslyvania by Dr Druck. I dread the day it comes back[xx(]
Ever think of quitting if that's true?
I did quit for ten years and went back[xx(] I know marc, Stupid. I am having a hard time quitting but am trying real hard. I just got some meds from the Dr, but it made me smoke more. He said that happens sometimes. Next up is the patch.
quote:Originally posted by Marc1301
quote:Originally posted by Oakie
I has prostate cancer at 38. I was treated with seeds and then chemo. I was able to keep my prostate but it was really bad. The pain is so bad I couldnt sleep or work.The Dr. told me it will probably come back but it has been 11 years and so far so good.I now watch what I eat and drink because it can effect the prostate. I smoke and that is the leading cause of prostate cancer in men.I was treated at the university of Pennslyvania by Dr Druck. I dread the day it comes back[xx(]
Ever think of quitting if that's true?
I did quit for ten years and went back[xx(] I know marc, Stupid. I am having a hard time quitting but am trying real hard. I just got some meds from the Dr, but it made me smoke more. He said that happens sometimes. Next up is the patch.
Never smoked in my life, but I did use Skoal for many years.
What it comes down to in the end John is your personal commitment to the quit.
I titrated down over a period of weeks, until I was so low on nicotine that I knew it couldn't matter anymore.
Didn't even really have the 3 day withdrawal per se.
Not intending to be high and mighty, but if you quit before, you can quit again all on your own.
I wish you success.[:)]
We don't use plastic or cook with anything but glassware or clay bakeware. We should be way healthy, but both of us have dealt with cancer now. She had colon cancer, went through h*ll, but was treated successfully with chemo and radiation and no surgery. She got a clean bill of health just one month before I was diagnosed.
EDIT: Regarding Quitting, Being short of breath is a real eye opener. starving for oxygen is scary. I became an EMT in the 80's. Part of my training was doing rounds with a respiratory tech at the hospital.
I saw old folks gasping for each breath of air like it was going to be their last. Grey skin, bloated faces, sweating like a pig for that next gulp of air. Fighting with the sputum in their lungs......
I threw away my cigs that night.
You can do it if you are motivated enough. Maybe you just haven't found the right motivation yet. I hope you do.
I smoked from 14 to 24 and quit, but worked in a bar as an entertainer from 2000 to 2007. Breathed a lot of secondhand smoke. Since meeting my wife 10 years ago we have been eating healthy and gotten most suspected substances out of our lives.
We don't use plastic or cook with anything but glassware or clay bakeware. We should be way healthy, but both of us have dealt with cancer now. She had colon cancer, went through h*ll, but was treated successfully with chemo and radiation and no surgery. She got a clean bill of health just one month before I was diagnosed.
Sorry for hijacking your thread.
I see we share the same name, and I was a firefighter/EMT many years ago.
Anyway,.....my best friend in the world that is older than I am had his prostate removed at 58.
It was done through that 'robotic' laparoscopic surgery.
So far he is doing fine after about 6 years short of his wife complaining that 'things' never went back to normal, if you know what I mean.[:0]
At this point I seem to be lucky.
I have a PSA test every year, and the dreaded finger as well.
PSA has always been .5 or .6 each time.
Hope everything works out for you![;)]
You guys have scared the poop out of me, I dont smoke, and my family doesnt have a history of prostate problems, but wow, All I can say is God bless to all of you.
quote:Originally posted by enforcinator
I smoked from 14 to 24 and quit, but worked in a bar as an entertainer from 2000 to 2007. Breathed a lot of secondhand smoke. Since meeting my wife 10 years ago we have been eating healthy and gotten most suspected substances out of our lives.
We don't use plastic or cook with anything but glassware or clay bakeware. We should be way healthy, but both of us have dealt with cancer now. She had colon cancer, went through h*ll, but was treated successfully with chemo and radiation and no surgery. She got a clean bill of health just one month before I was diagnosed.
Sorry for hijacking your thread.
I see we share the same name, and I was a firefighter/EMT many years ago.
Anyway,.....my best friend in the world that is older than I am had his prostate removed at 58.
It was done through that 'robotic' laparoscopic surgery.
So far he is doing fine after about 6 years short of his wife complaining that 'things' never went back to normal, if you know what I mean.[:0]
At this point I seem to be lucky.
I have a PSA test every year, and the dreaded finger as well.
PSA has always been .5 or .6 each time.
Hope everything works out for you![;)]
I had the "Lap" first time and was opened up for the next two surgeries. Only one branch of nerves were spared, so I already assume there will be ED. I've had a hose in 'junior' since Dec 12th, so I have no idea if anything still works, although I can still 'feel' touch and of course pain.
Wife and I discussed that the most before surgery. We had a very fulfilling sex life before, so it was a decision that affected both of us. Thank goodness she is my soul mate and best friend, or It would have been much harder to accept the possible outcome.
quote:Originally posted by Marc1301
quote:Originally posted by enforcinator
I smoked from 14 to 24 and quit, but worked in a bar as an entertainer from 2000 to 2007. Breathed a lot of secondhand smoke. Since meeting my wife 10 years ago we have been eating healthy and gotten most suspected substances out of our lives.
We don't use plastic or cook with anything but glassware or clay bakeware. We should be way healthy, but both of us have dealt with cancer now. She had colon cancer, went through h*ll, but was treated successfully with chemo and radiation and no surgery. She got a clean bill of health just one month before I was diagnosed.
Sorry for hijacking your thread.
I see we share the same name, and I was a firefighter/EMT many years ago.
Anyway,.....my best friend in the world that is older than I am had his prostate removed at 58.
It was done through that 'robotic' laparoscopic surgery.
So far he is doing fine after about 6 years short of his wife complaining that 'things' never went back to normal, if you know what I mean.[:0]
At this point I seem to be lucky.
I have a PSA test every year, and the dreaded finger as well.
PSA has always been .5 or .6 each time.
Hope everything works out for you![;)]
I had the "Lap" first time and was opened up for the next two surgeries. Only one branch of nerves were spared, so I already assume there will be ED. I've had a hose in 'junior' since Dec 12th, so I have no idea if anything still works, although I can still 'feel' touch and of course pain.
Wife and I discussed that the most before surgery. We had a very fulfilling sex life before, so it was a decision that affected both of us. Thank goodness she is my soul mate and best friend, or It would have been much harder to accept the possible outcome.
That's the important part!
I can only imagine what you are going through right now, and once again I hope everything gets better soon.
I suppose not being able to do much other than engage in pleasant conversation with a woman would have been worse than death at 27, but at 57 it isn't such a big deal.
enforcinator you should have had PROTON Therapy. You would have avoided the pain and suffering. Proton therapy does not harm normal tissue![:D]
Proton therapy was discussed along with seeds. Some therapies were not covered by my insurance. Others were not available here. My wife and I are both disabled and on medicare. I have Ankylosing Spondylitis, an immune system disorder that fuses the spine and leaves a lot of scar tissue. There was not enough information on radiation treatment and A.S. and I didn't want to be the first case of my disease going full active because I was dosed with 10 weeks of daily radiation.
Surgery in my case was supposed to have the least long term side effects in view of my current condition. Had the surgery been performed without incident I wouldn't be pooping in a bag right now.
Someone, at sometime, nicked, sewed or completely missed the tissue that created the condition that I now find myself in.
I think there will be a lawyer in my future, but I want to get well before I cross that bridge, as I'm pretty sure it will get burned.
Kevin.
Gentlemen, very informative, thanks for posting; appreciated. [^]
Thoughts and prayers are with you.
You are added to the family prayer list.
2 guys I work with, both under 50 have had prostate cancer in the last year. Both had surgery and they think they are in the clear. Both of them were back to work within 3 weeks. There's always the possibility of things going terribly wrong in any surgery. Sorry to hear things went so poorly for you in surgery.
Furthermore, the PSA test is so inaccurate that I don't even get it.
It is about as accurate as a coin toss.
enforcinator I hope you had an accurate biopsy considering the hell you have been through.
Hang in there hopefully you will get better. What a medical nightmare.
Luckily for me, there was no cancer found (though they do miss it occasionally), and the only after-effect was blood and clots in the urine for about 2 months.
My PSA went back down to 1.4, and I have an annual checkup in a couple of weeks.
I'm not sure what course I'd take if diagnosed with cancer. I'm 71, and have other health concerns which will probably kill me before I could die of cancer. Plus, I'm very reluctant to let anyone cut on me for any reason.
I just recently reached by 10th year in remission from this terrible killer. Unfortuantely a boy in our town 21 years old just died from the same cancer.
I have had PSA tested every year since age 35 and I do Colonoscopies every three years. All I can say is ge tthe tests , find it early if you are going to get it and then get treated by the best people in the world.
BTW my father in law was just treated in Boston in one of the city hospitals and I highly recommend the place and doctor who treated him. If you need that inforamtion let me know and I can get it for you.
About a year and a half ago, my PSA went from 1.7 to 7.1, so my Dr. ordered a biopsy. I don't know about others, but for me this unpleasant, but not painful procedure involved (after an application of local anasthetic) inserting a device and punching holes with a needle through the colon wall and into the prostate. They took about 16 "core samples" and submitted to the lab.
Luckily for me, there was no cancer found (though they do miss it occasionally), and the only after-effect was blood and clots in the urine for about 2 months.
My PSA went back down to 1.4, and I have an annual checkup in a couple of weeks.
I'm not sure what course I'd take if diagnosed with cancer. I'm 71, and have other health concerns which will probably kill me before I could die of cancer. Plus, I'm very reluctant to let anyone cut on me for any reason.
You prove my point Brian. The PSA test is worse than useless. You got a false positive and were subjected to hideous procedures that, it turned out, were not necessary.
Removal of the prostate often causes impotence and incontinence.
Furthermore, the PSA test is so inaccurate that I don't even get it.
It is about as accurate as a coin toss.
enforcinator I hope you had an accurate biopsy considering the hell you have been through.
Hang in there hopefully you will get better. What a medical nightmare.
They sent my prostate to pathology to make sure there was enough tissue taken. There has to be a greenzone so to speak around the cancer itself to be sure they didn't leave any behind. The cancer was bigger than they first thought, but they were confident they got it all.
I too had heard not to trust PSAs. Because of that I didn't believe it the first time it went up and back down a year ago. Had I had the biopsy then they would have caught it sooner and left me with both nerve branches or even a less radical treatment.
You can believe what you want, but if it's a 50/50 crap shoot I would still rather be tested and know. Once it gets in your bones a slow, painful death will follow.
The problem with the digital exam is that, by the time an abnormal prostate can be palpated, the cancer has often spread beyond the prostate.
Neal
While I am NOT an expert....I did learn a few things about Prostate Cancer. First...catching it EARLY helps. Second...There are SEVERAL options depending on diagnosis and age. In fact...there are so many options that it is DIFFICULT if not STUPID...to suggest a path for any individual to take. My Dad was diagnosed at 65 and he died at 91. He had NOTHING done...and lived a GOOD LIFE until 3 months before he died. SUCCESS???
EvilDr235
I had 12 biopsies, 6 were cancerous.
I went thru the Robotic surgey,
then the hormone treatment for 2 yrs.
My PSA is now 0.2 or so and crossing my
fingers.
Impotence issues are starting to fade away,
but I could care less because the alternative
isn't preferable!
Regressing: heart attack in '04 and prostate cancer
in '06, I decided to retire last year
and enjoy my family.
God Bless all!
ron
Might not be incredibly accurate, but it works for many people.
I started having mine tested at 40, and every year since. This establishes a 'baseline' for a given individual. Mine has ALWAYS been either .5, or .6 on every test. I would say that is a good baseline for me.
Now we all know that it can climb slowly as we age, but lets say I go in this year and my PSA is 5,......very good chance something is wrong.
As this point, most responsible docs would send you for a recheck every week or two to see if it comes back down, remains high, or goes even higher.
Without this test, my friend I spoke of above would most likely not be here. He had no other symptoms, and the urologist could feel nothing in his digital exam.
His PSA had always been at 1 or less,.......next year it read 6!
They retested 3 times, and it finished at almost 8.
Immediate biopsy, and straight to surgery.
Each person has the right to do whatever they wish, but as for myself, I get PSA and digital exams done each year.
A friend of my mothers husband died years ago from prostate cancer. He was too much of a 'man' to get the digital exam done. By the time they found his, it had metastasized to several other locations. He died a miserable death.