3 Month follow up Path..Help Please
Comments
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Take a Deep Breath
janeebe3,
All of this can be overwhelming right now. As hard as it is to do, take a breath, slow down and be as methodical and logical as you guys were in the beginning upon PCa discovery.
I would absolutely concur that a change of doctors or at least a 2nd or 3rd opinion, is in order at this point. It has nothing to do with whether your dr or his lab has issues. It has everything to do with the confidence level that you need going forward. Right now you have doubts about the lab and the doc. These can only add stress to an already stressful experience.
The few days involved in additional testing will not make any difference on where you go from here. So have another test or 2 or 3. Seek confirmation one way or the other and then you can proceed with confidence.
Many have traveled this same path as you before. Many are still here talking and writing about their experiences. If the information is correct, you have many options.
I know that you may think that all of this is easy to say. But I am where you are now. My post surgery (9/17/09 path report was not stellar. My 30 day PSA test did not come back undetectable and I am facing the prospect of additional treatment options.
So I ordered another PSA test, now at 7 1/2 weeks and will get the results today. I am researching my options. But I am breathing deeply and staying calm. Nothing good will be gained if I go off the deep end.
So you and your husband try to hang in there. Have the additional tests run. Interview doctors until you find that confidence and comfort level again. And then proceed with your future together.
Blessings to you and your family,
Sonny0 -
Thank you for your thoughtsWHW said:Take a Deep Breath
janeebe3,
All of this can be overwhelming right now. As hard as it is to do, take a breath, slow down and be as methodical and logical as you guys were in the beginning upon PCa discovery.
I would absolutely concur that a change of doctors or at least a 2nd or 3rd opinion, is in order at this point. It has nothing to do with whether your dr or his lab has issues. It has everything to do with the confidence level that you need going forward. Right now you have doubts about the lab and the doc. These can only add stress to an already stressful experience.
The few days involved in additional testing will not make any difference on where you go from here. So have another test or 2 or 3. Seek confirmation one way or the other and then you can proceed with confidence.
Many have traveled this same path as you before. Many are still here talking and writing about their experiences. If the information is correct, you have many options.
I know that you may think that all of this is easy to say. But I am where you are now. My post surgery (9/17/09 path report was not stellar. My 30 day PSA test did not come back undetectable and I am facing the prospect of additional treatment options.
So I ordered another PSA test, now at 7 1/2 weeks and will get the results today. I am researching my options. But I am breathing deeply and staying calm. Nothing good will be gained if I go off the deep end.
So you and your husband try to hang in there. Have the additional tests run. Interview doctors until you find that confidence and comfort level again. And then proceed with your future together.
Blessings to you and your family,
Sonny
Thank you for your thoughts and blessings! Hope all is well for you today too!0 -
So sorry to hear of this
Restaging the prostate after a prostatectomy for Gleason score and TNM stage on a pathology report happens roughly one-third of the time. The news that he is now Gleason 9 is alarming. If the PSA is indeed 7 then it means just one of two things. First, the disease has spread to his bones (prostate cancer has a 'tropism' for bones, that is to say, is seems to prefer bone to grow into as it courses through blood stream). The other possibility, but I am extreamly doubtful on this, is that the surgeon left a great deal of tissue, which he should have taken, including much of the cancer. Honestly, I can't imagine any surgeon being that incompetent. A PSA of seven would mean that the surgeon would have to have left at least a third of the prostate behind and that is inconceivable to me. If there is good news it is this: on average, a man will live another 5 years after the disease spreads. However, there is no way to know how long the disease has been growing outside the prostate and the prostate bed. I would ask to see the pathology report. Was there nodal involvement? Were the seminal vesicles involved? Were there extra capsular extentions? If the path report says yes to these questions then you know that it has almost certainly spread to more distal parts of his body. There are many drugs that can help; including sirolimus (it can slow the growth of both androgen-independant PCa and dependent forms of PCa), various androgen blockers, powerful IMRT radiation to the pelvic field (and even to the bones, but that is given for palliative care only). If it turns out that it has indeed spread distally I would go to the webpages for Memorial Sloan-Kettering, M.D. Anderson, the Dana-Farber Institute, among others, and look for the pages that describe clinical trials that are seeking new participents. There are numerous clinical trials underway that he might be able to join to get the most promising drugs and therapies that are now being explored. I wish you the very best in this time of great anguish and I am hoping that your husband can find a way to stave off the disease.
Bill0 -
Become a studentWilliam Parkinson said:So sorry to hear of this
Restaging the prostate after a prostatectomy for Gleason score and TNM stage on a pathology report happens roughly one-third of the time. The news that he is now Gleason 9 is alarming. If the PSA is indeed 7 then it means just one of two things. First, the disease has spread to his bones (prostate cancer has a 'tropism' for bones, that is to say, is seems to prefer bone to grow into as it courses through blood stream). The other possibility, but I am extreamly doubtful on this, is that the surgeon left a great deal of tissue, which he should have taken, including much of the cancer. Honestly, I can't imagine any surgeon being that incompetent. A PSA of seven would mean that the surgeon would have to have left at least a third of the prostate behind and that is inconceivable to me. If there is good news it is this: on average, a man will live another 5 years after the disease spreads. However, there is no way to know how long the disease has been growing outside the prostate and the prostate bed. I would ask to see the pathology report. Was there nodal involvement? Were the seminal vesicles involved? Were there extra capsular extentions? If the path report says yes to these questions then you know that it has almost certainly spread to more distal parts of his body. There are many drugs that can help; including sirolimus (it can slow the growth of both androgen-independant PCa and dependent forms of PCa), various androgen blockers, powerful IMRT radiation to the pelvic field (and even to the bones, but that is given for palliative care only). If it turns out that it has indeed spread distally I would go to the webpages for Memorial Sloan-Kettering, M.D. Anderson, the Dana-Farber Institute, among others, and look for the pages that describe clinical trials that are seeking new participents. There are numerous clinical trials underway that he might be able to join to get the most promising drugs and therapies that are now being explored. I wish you the very best in this time of great anguish and I am hoping that your husband can find a way to stave off the disease.
Bill
I am 47 years old and had robotic surgery 2/26/09 in Evanston, IL. At that time my PSA was 7. In May,for my post op PSA, I was 16. As my doctor put it "the smoke detector shows there's a fire in the house we just don't know which room". After numerous test consisting of Bone scans, MRI's, CAT scans and a prosticint scan, I was diagnosed with advance prostate cancer in the pelvic region. After a weekend pity party in which I was EMOTIONALLY paralyzed, I was able to come to grips with the diagnosis and began to become a avid student of the disease. Today I'm on Lupron [hormone therapy] and my PSA was 0.23 on 10/15/09.
With the use of the internet there is so much information readily available to help you make your decision. And I stress YOUR decision based on your body, your lifestyle and care available to you. Ask lots of questions and get seond or third opinions. I found when my wife and I spoke to different doctors we had organized notes showing them we were prepared.
It is a scary and difficult time and I found my faith, family, friends and those I don't even know [such as this discussion board] to be a wealth of help.
Thoughts, prayers and blessings to you and your family. Although you may feel alone in this battle please remember you have all of us to lean on.
Peter -0 -
William,William Parkinson said:So sorry to hear of this
Restaging the prostate after a prostatectomy for Gleason score and TNM stage on a pathology report happens roughly one-third of the time. The news that he is now Gleason 9 is alarming. If the PSA is indeed 7 then it means just one of two things. First, the disease has spread to his bones (prostate cancer has a 'tropism' for bones, that is to say, is seems to prefer bone to grow into as it courses through blood stream). The other possibility, but I am extreamly doubtful on this, is that the surgeon left a great deal of tissue, which he should have taken, including much of the cancer. Honestly, I can't imagine any surgeon being that incompetent. A PSA of seven would mean that the surgeon would have to have left at least a third of the prostate behind and that is inconceivable to me. If there is good news it is this: on average, a man will live another 5 years after the disease spreads. However, there is no way to know how long the disease has been growing outside the prostate and the prostate bed. I would ask to see the pathology report. Was there nodal involvement? Were the seminal vesicles involved? Were there extra capsular extentions? If the path report says yes to these questions then you know that it has almost certainly spread to more distal parts of his body. There are many drugs that can help; including sirolimus (it can slow the growth of both androgen-independant PCa and dependent forms of PCa), various androgen blockers, powerful IMRT radiation to the pelvic field (and even to the bones, but that is given for palliative care only). If it turns out that it has indeed spread distally I would go to the webpages for Memorial Sloan-Kettering, M.D. Anderson, the Dana-Farber Institute, among others, and look for the pages that describe clinical trials that are seeking new participents. There are numerous clinical trials underway that he might be able to join to get the most promising drugs and therapies that are now being explored. I wish you the very best in this time of great anguish and I am hoping that your husband can find a way to stave off the disease.
Bill
I do agree with
William,
I do agree with most of what you said. And with a post surgical psa of 7, it is nearly 100% that the cancer was not confined. However, I do disagree with the liklihood that it has metastized to the bones. While there is always the possibility it has spread to the bones, it is equally as possible that the cancer is still confined within the prostate bed and seminal vesicles. It is likely that the post pathology indicated something more than just the GS of 9. It would also be helpful to know what the pre-surgical psa was.
Janeebe, hopefully you may still qualify for salvage radiation but only the full pathology findings and additional bone scans will tell. If the pathology report indicated "lymph node involvement" than radiation will not be helpful. However, on the plus side, I assume you already had all the bone scans not too long ago. While "hot spots" can develop over several months, I would think that there is an equal chance that they didn't. It doesn't mean you shouldn't get re-x-rayed but there is still some hope.0 -
PRE-op PSA 17. Lowered tonymets1 said:William,
I do agree with
William,
I do agree with most of what you said. And with a post surgical psa of 7, it is nearly 100% that the cancer was not confined. However, I do disagree with the liklihood that it has metastized to the bones. While there is always the possibility it has spread to the bones, it is equally as possible that the cancer is still confined within the prostate bed and seminal vesicles. It is likely that the post pathology indicated something more than just the GS of 9. It would also be helpful to know what the pre-surgical psa was.
Janeebe, hopefully you may still qualify for salvage radiation but only the full pathology findings and additional bone scans will tell. If the pathology report indicated "lymph node involvement" than radiation will not be helpful. However, on the plus side, I assume you already had all the bone scans not too long ago. While "hot spots" can develop over several months, I would think that there is an equal chance that they didn't. It doesn't mean you shouldn't get re-x-rayed but there is still some hope.
PRE-op PSA 17. Lowered to 11 with meds prior to surgery. No Scans were ever done. Nodes were also clear. 2nd PSA result tomorrow. Bone scan Friday. Thanks all.0 -
Hey nymets. Well, thejaneebe3 said:PRE-op PSA 17. Lowered to
PRE-op PSA 17. Lowered to 11 with meds prior to surgery. No Scans were ever done. Nodes were also clear. 2nd PSA result tomorrow. Bone scan Friday. Thanks all.
Hey nymets. Well, the problem is that the seminal vesicles are usually taken with the prostate. That is why it is called a 'radical' prostatectomy, because they remove more than just the prostate. And if it were just in the bed, it would be a local recurrence and the PSA reading would not be anywhere near seven. Also, and this is critical, she said in her other post that her husband had negative surgical margins, so it is not too probable that the cancer resides in the prostate bed. Usually the assumption among surgeons is that if the margins are negative, and the PSA never goes down to near zero and then up again, it is a distal spread of the disease. Having said that, I have met two men here locally who were told they would die years ago (one back in 1991!!!) and both are still around and living quite well!!! I hope for both of their sake that the reading is simply wrong and that a new reading will show no disease.
Cheers
Bill0 -
UPDATE...PSA levelsWilliam Parkinson said:Hey nymets. Well, the
Hey nymets. Well, the problem is that the seminal vesicles are usually taken with the prostate. That is why it is called a 'radical' prostatectomy, because they remove more than just the prostate. And if it were just in the bed, it would be a local recurrence and the PSA reading would not be anywhere near seven. Also, and this is critical, she said in her other post that her husband had negative surgical margins, so it is not too probable that the cancer resides in the prostate bed. Usually the assumption among surgeons is that if the margins are negative, and the PSA never goes down to near zero and then up again, it is a distal spread of the disease. Having said that, I have met two men here locally who were told they would die years ago (one back in 1991!!!) and both are still around and living quite well!!! I hope for both of their sake that the reading is simply wrong and that a new reading will show no disease.
Cheers
Bill
Second"opinion" lab results just came back. PSA 8.7 Dr. says he has never had a case where psa were so high. He has consulted with the others in his group who have only seen a "few" rare cases as such. Not many text book cases to consult either. Scheduling bone scan and some new CT scan only recently available. They will call thiws afternoon.
Advice?? Info?? ANYTHING! (this second set of PSA's were done by a different lab).0 -
You are not alone. We arejaneebe3 said:UPDATE...PSA levels
Second"opinion" lab results just came back. PSA 8.7 Dr. says he has never had a case where psa were so high. He has consulted with the others in his group who have only seen a "few" rare cases as such. Not many text book cases to consult either. Scheduling bone scan and some new CT scan only recently available. They will call thiws afternoon.
Advice?? Info?? ANYTHING! (this second set of PSA's were done by a different lab).
You are not alone. We are going through the same thing with my father. He had the surgery about 8 weeks ago, and his PSA recently came back as 3. Got a second PSA test and that one came back as 7! Needless to say we are devastated, confused, and awaiting the next steps. His appointment with the oncologist is not for a week and a half - you'd think that they could be a little more compassionate and not leave us hanging, but no.
I am so frightened ... I need my Dad. We all need him. I'll keep you updated on what we find out on our end.0 -
I dont know why they wait.pinot said:You are not alone. We are
You are not alone. We are going through the same thing with my father. He had the surgery about 8 weeks ago, and his PSA recently came back as 3. Got a second PSA test and that one came back as 7! Needless to say we are devastated, confused, and awaiting the next steps. His appointment with the oncologist is not for a week and a half - you'd think that they could be a little more compassionate and not leave us hanging, but no.
I am so frightened ... I need my Dad. We all need him. I'll keep you updated on what we find out on our end.
I dont know why they wait. It is the hardest for us too. We are scheduled for bone scan on friday. I will let you know how it goes. Please keep me posted too. There is so little information regarding these high PSA's directly following surgery. And, it helps to know you are not the only one! Chin up!
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Janeebe,janeebe3 said:I dont know why they wait.
I dont know why they wait. It is the hardest for us too. We are scheduled for bone scan on friday. I will let you know how it goes. Please keep me posted too. There is so little information regarding these high PSA's directly following surgery. And, it helps to know you are not the only one! Chin up!
I can not imagine
Janeebe,
I can not imagine that the surgeon did not order bone scans prior to surgery. Oh well.
Ok...let me say this--- there may be a chance that the bone scans will be clean. That doesn't mean something ain't goin on. It will however put your husband in need of more than one opinion as to what to do next. I say, cross that line when and if it happens. More importantly, be patient and keep your chin up!
Bill,
With PCa nothing is impossible and that would include having clear lymph nodes, yet systemic disease is present. Its just that its definetly not the "norm."0 -
Bone scan and ct results duenymets1 said:Janeebe,
I can not imagine
Janeebe,
I can not imagine that the surgeon did not order bone scans prior to surgery. Oh well.
Ok...let me say this--- there may be a chance that the bone scans will be clean. That doesn't mean something ain't goin on. It will however put your husband in need of more than one opinion as to what to do next. I say, cross that line when and if it happens. More importantly, be patient and keep your chin up!
Bill,
With PCa nothing is impossible and that would include having clear lymph nodes, yet systemic disease is present. Its just that its definetly not the "norm."
Bone scan and ct results due today.0
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