Diagnosis of Prostate Cancer - Looking forward.
Comments
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ThanksSwingshiftworker said:Thanks for the clarification, Old-Timer
If I had known the actual source and extent of your incontinence, I would have used another reference rather than your quote. However, this doesn't change the fact that many men still experience both ED and incontinence following surgery.
Obviously, there are risks of ED and incontinence w/EBRT, as well, but there have been significant improvements in the use of IMRT and other focused beam radiation treatments even in the 6 years since you were treated. Nonetheless, I'm sorry that you have had to suffer incontinence for so long since you received radiation treatment.
That said, just in case TitusvilleBills (and others) is (are) not aware of the full scope of the risks of surgery, I'll re-post a link to the following article, which I think explains those risks the best: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.
Ciao!!
Thanks SWingShiftWorker
Appreciate the information. I will gladly read this article.0 -
new memberTitusvilleBills said:Thanks
Thanks SWingShiftWorker
Appreciate the information. I will gladly read this article.
Hi Bill
I'm a new member to the club no one wants to join and have read all the comments above with great interest. I am 53 and was diagnosed 3/11 with a PSA of 3.6 normal DRE bioposy gleason 3+3=6 and spent several months reviewing my options. In the end I opted to get the cancer our and still have more bullets to fire later if there is a reoccurance. I live in Florida and had Robotic with Dr Patel on 11/13 and the cath removed on 11/19, back to work on the 20th, I'm a CPA so I sit with no heavy lifting. I'm a little over three weeks out and am 70-80% dry (lifting and waiting too long :)to hit the head cause a liitle leak) and taking viagra 3 days a week to awaken the snake. I'm optimisitc of a full recovery as I'm getting night time erections and have the Dr's go ahead to test the system next week. Clearly everyone has to choise their own treatment and I have friends the have gone different route, up till the last minute I was considering Protron treatment in Jacksonville, but then decided to get it out. Best of luck to you and your family as you work through the treatment options.0 -
Moving Forwardpaul2858 said:new member
Hi Bill
I'm a new member to the club no one wants to join and have read all the comments above with great interest. I am 53 and was diagnosed 3/11 with a PSA of 3.6 normal DRE bioposy gleason 3+3=6 and spent several months reviewing my options. In the end I opted to get the cancer our and still have more bullets to fire later if there is a reoccurance. I live in Florida and had Robotic with Dr Patel on 11/13 and the cath removed on 11/19, back to work on the 20th, I'm a CPA so I sit with no heavy lifting. I'm a little over three weeks out and am 70-80% dry (lifting and waiting too long :)to hit the head cause a liitle leak) and taking viagra 3 days a week to awaken the snake. I'm optimisitc of a full recovery as I'm getting night time erections and have the Dr's go ahead to test the system next week. Clearly everyone has to choise their own treatment and I have friends the have gone different route, up till the last minute I was considering Protron treatment in Jacksonville, but then decided to get it out. Best of luck to you and your family as you work through the treatment options.
I visited the folks at Moffit and was very impressed with the facility, doctors and nurses. I had a PSA test performed and once again it jumped up to 118 ng\mL. I wasnt too happy about that but the nurses and doctors assured me that there were possible explanations for the increase. I have had 3 doctors all agree that there is good reason to suspect that the cancer has spread external to my prostate. So if I chose surgery, I would most likely require some form of radiation treatment afterwards. I was seriously leaning towards surgery, but have elected to go with hormone therapy (got my first shot of Lupron on the 3rd, no side effects yet, I am taking Advart and some other pill to deal with the enlargement of my prostate). I will start radiation treatment in December for 5 weeks and follow up with seed implants.
It didnt make any sense to schedule surgery 30+ days from now, have surgery, wait to heal up, do follow ups to see what my PSA was, and most likely have some form of radiation performed anyhow. My wife and I spent Friday second guessing ourselves, but decided this is the best path for me. We are focusing on the positives, and remaining in postive spirits.
I really appreciate everyone's support and sharing of their experiences. I will continue to stay involved with the postings here as it does help me stay positive. Some of the literature I read is depressing so it is encouraging to hear the postive stories from you all.
Thanks
Take care, and continue to share
Jim0 -
Excellent Decision!TitusvilleBills said:Moving Forward
I visited the folks at Moffit and was very impressed with the facility, doctors and nurses. I had a PSA test performed and once again it jumped up to 118 ng\mL. I wasnt too happy about that but the nurses and doctors assured me that there were possible explanations for the increase. I have had 3 doctors all agree that there is good reason to suspect that the cancer has spread external to my prostate. So if I chose surgery, I would most likely require some form of radiation treatment afterwards. I was seriously leaning towards surgery, but have elected to go with hormone therapy (got my first shot of Lupron on the 3rd, no side effects yet, I am taking Advart and some other pill to deal with the enlargement of my prostate). I will start radiation treatment in December for 5 weeks and follow up with seed implants.
It didnt make any sense to schedule surgery 30+ days from now, have surgery, wait to heal up, do follow ups to see what my PSA was, and most likely have some form of radiation performed anyhow. My wife and I spent Friday second guessing ourselves, but decided this is the best path for me. We are focusing on the positives, and remaining in postive spirits.
I really appreciate everyone's support and sharing of their experiences. I will continue to stay involved with the postings here as it does help me stay positive. Some of the literature I read is depressing so it is encouraging to hear the postive stories from you all.
Thanks
Take care, and continue to share
Jim
Good call, Titus!!
Too many men rush to surgery even though it will not do any good (and in fact put them at greater risk of complications) to undergo surgery to cut the prostate out. Your combined HT and IMRT and BT approach gives you an excellent chance of recovery without the risks of surgery.
I'm sure you've already read up about the risks associated w/HT, IMRT and BT and hopefully the any problems you experience will be will be minimal.
Good luck and keep us up to date on your process.0 -
I will SwingShiftWorkerSwingshiftworker said:Excellent Decision!
Good call, Titus!!
Too many men rush to surgery even though it will not do any good (and in fact put them at greater risk of complications) to undergo surgery to cut the prostate out. Your combined HT and IMRT and BT approach gives you an excellent chance of recovery without the risks of surgery.
I'm sure you've already read up about the risks associated w/HT, IMRT and BT and hopefully the any problems you experience will be will be minimal.
Good luck and keep us up to date on your process.
I will SwingShiftWorker (SSW). I read the article you sent me and it was of great help, thank you.0 -
Medical Team for the long runKongo said:Welcome
Jim,
So sorry to read of your diagnosis but you are approaching this with the right attitude. As you must have learned by now, the Gleason score of 4+3=7 puts you in the intermediate to high risk category of prostate cancer. There are a number of viable treatment options but your decision process is going to be trickier than those with either a low or high risk diagnosis.
A couple of suggestions as you prepare for your upcoming consultations. First, I would have your biopsy slides read by a pathology lab that specializes in prostate cancer. It is critically important that you have a very good idea of what you are facing and that you have as much information as possible when it comes time to make treatment decisions.
In particular, you want to examine your pathology report for references to PNI which stands for Perineural Invasion which is the presence or prostate cancer around or in the perineural space which is simply cancer in or near the nerves which surround the prostate and enable a man to have a normal erection. While it doesn't affect the Gleason score, evidence of PNI may indicate an increased possiblity that the cancer has escaped the prostate. It is also an indicator that nerve sparing surgery may not be an option if you choose to have the prostate removed.
You may wish to read about the potential significance of PNI by following this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476100/
In my lay opinion, it makes no sense to me to remove the prostate if there is evidence that cancer has spread beyond the prostate gland and can only increase the liklihood of adverse side effects associated with surgery. On the other hand, if there is no evidence of PNI from your needle biopsy (and confirmed by a second opinion) then you can have more confidence that PCa is confined to the prostate and surgery may be an option you wish to consider. It seems to be generally thought by most surgeons that young men such as yourself do better with RP than older men although you still run the risk of the many potential side effects. I encourage you to read back through several pages of this discussion forum where several discussion regarding the pros and cons of surgery have been debated in great detail.
As you may know, hormone therapy does not cure cancer but it does curb its growth by interrupting the link between testosterone and the prostate cancer cell. PCa needs testosterone to thrive.
Before your consultations I hope you have the opportunity to read as much about prostate cancer as you can. There are a number of good books out there. When I was diagnosed in March 2010 I think I downloaded and read just about every book available in the Kindle Store at Amazon.com.
With an intermediate cancer diagnosis you have many options to consider and I'm sure your future consultations will lay out the range of possibilities for you. Please be sure to seek a blananced perspective across the field of experts which include radiologists with expertise in ALL of the type of radiation available as well as both open and robotic surgeons. You may also wish to visit a oncologist who specializes in prostate cancer. It almost goes without saying that you want to find a doctor with a lot of experience but this is particularly true in the area of robotic surgery where I have read that the standard learning curve to become truly proficient is about 350 operations. Some on here will tell you that your surgeon should have thousands of procedures behind them. That may well get you a good mechanic but in my case, (and I did not choose surgery) I wanted a medical team that was going to be there for the long term. A physician with thousands of procedures behind them is specializing in surgery and not follow up or long term relationships. If something goes wrong, s/he is going to hand you off to someone else. It all depends on what you're expecting from your doctor.
The frustrating thing about prostate cancer, particularly for the newly diagnosed, is that you are expected to make your own treatment decisions. To me this has always seemed incredible as most men (it was certainly the case with me) with lay backgrounds barely have an understanding of where their prostate is located and what its purpose is. Trying to make a decision about which treatment to choose, understanding the implications of decisions that can never be revisited, and appreciating the potential side effects of treatment without the technical background seems patently absurd to me. But that's the way it is.
It is good that you are involving your wife in your treatment decision. This is a couples disease and she will be affected regardless of what you eventually decide.
Please post more details from your pathology report and best of luck to you as you sort this out.
K
Hi Kongo
While I was wading through my decision on which option to pursue I struggled with teh idea of is it better to have a doctor with years of experience and zero bedside manner or follow up. My decision was easy once I met the folks at Moffitt Cancer Center in Tampa Florida. Finally I met a team of medical professionals that understood the urgency I felt on my disease. The nurse and doctor spent significant time with my going over my diagnosis, explaining the treatment plans available, discussed side effects for each, and gave me an idea of the road ahead. Shortly after meeting with these folks, I made a decision that I would go with radiation treatment with the professionals at Moffitt.
Upon returning to the East Coast of Florida (city of Titusville), I returned to work the next day and remembered a question I forgot to ask. I had left the nurse's and doctor's business card at home, so I reached out to a fiend of mine's LPN that worked at Moffitt. Not only did the LPN (remember she was not my nurse) respond to my email question, her reply was quickly followed up by my nurse and my doctor (all in less than 30 minutes). It was at that point that I realized that I wanted to team that was going to be with me the entire journey. Some of the other doctors I was talking with, made me feel like a number. In all fairness to these doctors, I realize they are extremely busy and competent professionals, but I wanted someone to work with me on my endeavor. I guess I know now what is important.0 -
Medical Team for the long runKongo said:Welcome
Jim,
So sorry to read of your diagnosis but you are approaching this with the right attitude. As you must have learned by now, the Gleason score of 4+3=7 puts you in the intermediate to high risk category of prostate cancer. There are a number of viable treatment options but your decision process is going to be trickier than those with either a low or high risk diagnosis.
A couple of suggestions as you prepare for your upcoming consultations. First, I would have your biopsy slides read by a pathology lab that specializes in prostate cancer. It is critically important that you have a very good idea of what you are facing and that you have as much information as possible when it comes time to make treatment decisions.
In particular, you want to examine your pathology report for references to PNI which stands for Perineural Invasion which is the presence or prostate cancer around or in the perineural space which is simply cancer in or near the nerves which surround the prostate and enable a man to have a normal erection. While it doesn't affect the Gleason score, evidence of PNI may indicate an increased possiblity that the cancer has escaped the prostate. It is also an indicator that nerve sparing surgery may not be an option if you choose to have the prostate removed.
You may wish to read about the potential significance of PNI by following this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476100/
In my lay opinion, it makes no sense to me to remove the prostate if there is evidence that cancer has spread beyond the prostate gland and can only increase the liklihood of adverse side effects associated with surgery. On the other hand, if there is no evidence of PNI from your needle biopsy (and confirmed by a second opinion) then you can have more confidence that PCa is confined to the prostate and surgery may be an option you wish to consider. It seems to be generally thought by most surgeons that young men such as yourself do better with RP than older men although you still run the risk of the many potential side effects. I encourage you to read back through several pages of this discussion forum where several discussion regarding the pros and cons of surgery have been debated in great detail.
As you may know, hormone therapy does not cure cancer but it does curb its growth by interrupting the link between testosterone and the prostate cancer cell. PCa needs testosterone to thrive.
Before your consultations I hope you have the opportunity to read as much about prostate cancer as you can. There are a number of good books out there. When I was diagnosed in March 2010 I think I downloaded and read just about every book available in the Kindle Store at Amazon.com.
With an intermediate cancer diagnosis you have many options to consider and I'm sure your future consultations will lay out the range of possibilities for you. Please be sure to seek a blananced perspective across the field of experts which include radiologists with expertise in ALL of the type of radiation available as well as both open and robotic surgeons. You may also wish to visit a oncologist who specializes in prostate cancer. It almost goes without saying that you want to find a doctor with a lot of experience but this is particularly true in the area of robotic surgery where I have read that the standard learning curve to become truly proficient is about 350 operations. Some on here will tell you that your surgeon should have thousands of procedures behind them. That may well get you a good mechanic but in my case, (and I did not choose surgery) I wanted a medical team that was going to be there for the long term. A physician with thousands of procedures behind them is specializing in surgery and not follow up or long term relationships. If something goes wrong, s/he is going to hand you off to someone else. It all depends on what you're expecting from your doctor.
The frustrating thing about prostate cancer, particularly for the newly diagnosed, is that you are expected to make your own treatment decisions. To me this has always seemed incredible as most men (it was certainly the case with me) with lay backgrounds barely have an understanding of where their prostate is located and what its purpose is. Trying to make a decision about which treatment to choose, understanding the implications of decisions that can never be revisited, and appreciating the potential side effects of treatment without the technical background seems patently absurd to me. But that's the way it is.
It is good that you are involving your wife in your treatment decision. This is a couples disease and she will be affected regardless of what you eventually decide.
Please post more details from your pathology report and best of luck to you as you sort this out.
K
Hi Kongo
While I was wading through my decision on which option to pursue I struggled with teh idea of is it better to have a doctor with years of experience and zero bedside manner or follow up. My decision was easy once I met the folks at Moffitt Cancer Center in Tampa Florida. Finally I met a team of medical professionals that understood the urgency I felt on my disease. The nurse and doctor spent significant time with my going over my diagnosis, explaining the treatment plans available, discussed side effects for each, and gave me an idea of the road ahead. Shortly after meeting with these folks, I made a decision that I would go with radiation treatment with the professionals at Moffitt.
Upon returning to the East Coast of Florida (city of Titusville), I returned to work the next day and remembered a question I forgot to ask. I had left the nurse's and doctor's business card at home, so I reached out to a fiend of mine's LPN that worked at Moffitt. Not only did the LPN (remember she was not my nurse) respond to my email question, her reply was quickly followed up by my nurse and my doctor (all in less than 30 minutes). It was at that point that I realized that I wanted to team that was going to be with me the entire journey. Some of the other doctors I was talking with, made me feel like a number. In all fairness to these doctors, I realize they are extremely busy and competent professionals, but I wanted someone to work with me on my endeavor. I guess I know now what is important.0 -
Right OnTitusvilleBills said:Medical Team for the long run
Hi Kongo
While I was wading through my decision on which option to pursue I struggled with teh idea of is it better to have a doctor with years of experience and zero bedside manner or follow up. My decision was easy once I met the folks at Moffitt Cancer Center in Tampa Florida. Finally I met a team of medical professionals that understood the urgency I felt on my disease. The nurse and doctor spent significant time with my going over my diagnosis, explaining the treatment plans available, discussed side effects for each, and gave me an idea of the road ahead. Shortly after meeting with these folks, I made a decision that I would go with radiation treatment with the professionals at Moffitt.
Upon returning to the East Coast of Florida (city of Titusville), I returned to work the next day and remembered a question I forgot to ask. I had left the nurse's and doctor's business card at home, so I reached out to a fiend of mine's LPN that worked at Moffitt. Not only did the LPN (remember she was not my nurse) respond to my email question, her reply was quickly followed up by my nurse and my doctor (all in less than 30 minutes). It was at that point that I realized that I wanted to team that was going to be with me the entire journey. Some of the other doctors I was talking with, made me feel like a number. In all fairness to these doctors, I realize they are extremely busy and competent professionals, but I wanted someone to work with me on my endeavor. I guess I know now what is important.
Great perspective, Jim. I think the type of attitude exhibited at the medical center you visited in Moffitt is exactly what every man diagnosed with prostate cancer should have. I like the way you couch your relationship with them as more of a partnership in a joint venture to address your disease in a way that is best for you.
K0 -
Vasco does voluminous cancerVascodaGama said:Second opinions on the Biopsy
Jim
In my eleven years of PCa researches and attended conferences, I got to the understanding that no case is equal but similar. Nevertheless, I have noticed the following which may be helpful to you. Add those to your List of Questions:
1) Negative DRE is common in young patients.
2) Micro-metastasis is usually diagnosed in voluminous cancer produced by low Gleason grades.
3) High levels of PSA could be associated with BPH and cancer. This could be confirmed through the size of your prostate gland and from the findings in the cores. The pathologist would report on the presence of inflammation.
4) Neuritis and/or Peripheral neuropathy are typical conditions reported by many PCa diagnosed patients. This is related to inflammation or having an origin in an infection of the peripheral nervous system. The symptoms you describe “sudden and urgent urination” and “have to pass gas prior to urinating” and “pressure in my groin area” are typical of these conditions. Urologists usually recommend a dose of antibiotics before doing a biopsy.
Have you received a Clinical Stage?
Probably a review of the biopsy could give you peace of mind.
Micro mets are difficult to be detected with present image studies. ProstaScint is not very reliable and PET scan has given several false positives in the pelvic area, (agents attach to the fatty tissue surrounding the lymph nodes) and many doctors do not trust its results even with the newer contrast agents (choline, fluorine, fluorodeoxyglucose, etc.) because they lack sensitivity and are difficult to be administered (too short half-life). However, many patients like to have this tests performed and there have been positive results.
I was diagnosed with the micro mets after surgery at 50 years old. The diagnosis pre surgery was Gleason score 2+3=5, voluminous cancer (6 out of 6 positive), clinical stage B (T2) and negative DRE. All image studies were negative.
Wishing you find a solution to your case.
VGama
Vasco does voluminous cancer refer to the amount of posative cores or % found in any one core?0 -
Study SummaryTitusvilleBills said:I will SwingShiftWorker
I will SwingShiftWorker (SSW). I read the article you sent me and it was of great help, thank you.
Hello Titus:
Maybe this link will help you.
https://leisurelabs.egnyte.com/h-s/20111108/d9c660cb7b9a4b14
Best wishes,
robert10 -
Thank you Sirrobert1 said:Study Summary
Hello Titus:
Maybe this link will help you.
https://leisurelabs.egnyte.com/h-s/20111108/d9c660cb7b9a4b14
Best wishes,
robert1
Thank you Sir0
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