Scared to death. Got the news 2 days ago. Meeting Dr. face to face tomorrow
I have been pouring over web sites for hours and think I know the " right " questions to ask. I assume the stage, PSA and Gleason scores play a large part in selecting a treatment. That said I am guess I am in stage 1 and based on what I read a robotic RP would be a course of action. My girlfriend whom I hoped to charm into marrying me next year will be going with me. I can only assume what he will share and what we will discuss.
This shared. I would very much appreciate advice and input from the experience CSN members.
What answers must I walk away with tommorrow?
How hard and wide should I look for a second opinion and top Dr. in my area?
Other?
Thanks and blessings to all.
T Paul
Comments
-
Welcome
T Paul,
I am sorry to read of your diagnosis. The men who post here have all been in your shoes and we are keen to provide what support we can as you deal with this disease.
First off, it's way, way too early to be thinking about what kind of treatment you might require. First you need to understand completely the diagnosis which includes not only the number of samples that were positive but the Gleason score, the size of your prostate, your PSA history, family history of prostate cancer, DRE results, any physical symptoms that might exist, and your general health.
Prostate cancer is classified as either low risk, intermediate risk, or high risk depending upon the Gleason score and to a lesser extent the PSA velocity and the PSA doubling time, which BTW, is not an algebraic calculation. The most important thing you need to know is your Gleason score because recommendations for treatment almost always flow from that. In this regard, understand that the Gleason score is a SUBJECTIVE assessment of your slides by the pathologist that reviews them. It is not uncommon for pathologists to under or over read the Gleason scores and I strongly recommend that you get a second opinion on your slides from an institution that specializes in reading prostate cancer samples, like Johns Hopkins. Your doctor can explain how you can have your slides shipped off for a second opinion.
Your urologist is required to explain the diagnosis to you and review the gamut of common treatment methods which include surgical removal of the prostate, radiation, hormone therapy, or active surveillance. Since all urologists are surgeons, more than 90% of them will recommend the surgical removal of your prostate either through standard surgery or using the assistance of a robotic machine.
Radiation can be one of several different techniques but the most common are proton therapy, various forms of external radiation using photons, or internal "seed" implants called brachytherapy. There are several variations and techniques to these options.
Hormone therapy is often used either alone or in conjunction with radiation or surgery to curb the growth of prostate cancer by chemically castrating the patient and eliminating testosterone for a period of time that can be from a few months to a few years. Hormone therapy does not cure prostate cancer but it can slow the growth of the disease for several years. Until it reaches a very advanced stage, prostate cancer needs testosterone to grow.
Men with a low risk diagnosis should also consider active surveillance that involves frequent monitoring of PSA levels and follow-on biopsies every few years. Many prostate cancers are indolent and over treated by the medical profession and active surveillance is appropriate for a large number of newly diagnosed men.
With the exception of active surveillance, all of the common treatment options carry the risk of adverse side effects that will affect the quality of your (and your future wife) life forever. Many men who undergo surgery emerge incontinent and impotent. While the majority of men eventually regain most of their urinary continence and some degree of potency it will never be like it is today. Consider surgery very carefully.
If your surgeon suggests prostate removal to you he might mention "nerve sparing" surgery. The prostate is surrounded by tiny nerve bundles about the size of a human hair. These nerves are necessary for a man to achieve a normal erection. Nerve sparing surgery seeks to preserve these nerves so that a man may achieve an erection "sufficient for penetration once a month" which is the standard that successful potency recovery is measured. Should this procedure not work to the patient's satisfaction injections or mechanical implants may work.
Radiation carries the risk of side effects as well but they are generally fewer and less adverse than surgery. Men who are continent and potent before treatment are generally continent and potent after treatment. Some forms of radiation have been shown to sometimes have an effect on a man's ability to achieve an erection years after treatment due to the delayed effects of damage to the nerve bundles. Drugs like Viagra are successful in treating this condition. Depending upon the type of radiation you choose, the risk of these side effects can vary greatly.
Hormone therapy causes impotency and loss of libido because it blocks testosterone. Other side effects can include breast enlargement, depression, weight gain, and other lifestyle impacts.
As you can see, nothing in this game is for free. There are no magic bullets and run quickly from anyone who tries to tell you otherwise.
Please, please, please plan on seeking second opinions. At a minimum you should consult another urologist who will be a surgeon, a radiation oncologist that treats prostate cancer, and an oncologist who, hopefully, can give you a balanced opinion. In my own case with a low risk Gleason 6 diagnosis I met with six specialists before making a decision.
It's a smart move to have your fiancé with you. She needs to know what she's getting into since prostate cancer is very much a couple's disease and her support and understanding as you go through the decision process and beyond will be critical. Ask her to take notes while the doctor is talking because I can almost guarantee you that you will be so emotionally strung out at this early meeting that you will not remember most of what he tells you.
Hope this helps and I hope that you come back and share the results of your visit. There are many men who post on this forum who will share with you their personal experiences in dealing with this disease and the aftermath of their treatment choices.
Best,
K
p.s. When you visit with your doctor tomorrow be sure to get paper copies of ALL his files on you. You will need them when you consult with other specialists and you will find yourself frequently referring back to these as time goes on.0 -
DiagnosisKongo said:Welcome
T Paul,
I am sorry to read of your diagnosis. The men who post here have all been in your shoes and we are keen to provide what support we can as you deal with this disease.
First off, it's way, way too early to be thinking about what kind of treatment you might require. First you need to understand completely the diagnosis which includes not only the number of samples that were positive but the Gleason score, the size of your prostate, your PSA history, family history of prostate cancer, DRE results, any physical symptoms that might exist, and your general health.
Prostate cancer is classified as either low risk, intermediate risk, or high risk depending upon the Gleason score and to a lesser extent the PSA velocity and the PSA doubling time, which BTW, is not an algebraic calculation. The most important thing you need to know is your Gleason score because recommendations for treatment almost always flow from that. In this regard, understand that the Gleason score is a SUBJECTIVE assessment of your slides by the pathologist that reviews them. It is not uncommon for pathologists to under or over read the Gleason scores and I strongly recommend that you get a second opinion on your slides from an institution that specializes in reading prostate cancer samples, like Johns Hopkins. Your doctor can explain how you can have your slides shipped off for a second opinion.
Your urologist is required to explain the diagnosis to you and review the gamut of common treatment methods which include surgical removal of the prostate, radiation, hormone therapy, or active surveillance. Since all urologists are surgeons, more than 90% of them will recommend the surgical removal of your prostate either through standard surgery or using the assistance of a robotic machine.
Radiation can be one of several different techniques but the most common are proton therapy, various forms of external radiation using photons, or internal "seed" implants called brachytherapy. There are several variations and techniques to these options.
Hormone therapy is often used either alone or in conjunction with radiation or surgery to curb the growth of prostate cancer by chemically castrating the patient and eliminating testosterone for a period of time that can be from a few months to a few years. Hormone therapy does not cure prostate cancer but it can slow the growth of the disease for several years. Until it reaches a very advanced stage, prostate cancer needs testosterone to grow.
Men with a low risk diagnosis should also consider active surveillance that involves frequent monitoring of PSA levels and follow-on biopsies every few years. Many prostate cancers are indolent and over treated by the medical profession and active surveillance is appropriate for a large number of newly diagnosed men.
With the exception of active surveillance, all of the common treatment options carry the risk of adverse side effects that will affect the quality of your (and your future wife) life forever. Many men who undergo surgery emerge incontinent and impotent. While the majority of men eventually regain most of their urinary continence and some degree of potency it will never be like it is today. Consider surgery very carefully.
If your surgeon suggests prostate removal to you he might mention "nerve sparing" surgery. The prostate is surrounded by tiny nerve bundles about the size of a human hair. These nerves are necessary for a man to achieve a normal erection. Nerve sparing surgery seeks to preserve these nerves so that a man may achieve an erection "sufficient for penetration once a month" which is the standard that successful potency recovery is measured. Should this procedure not work to the patient's satisfaction injections or mechanical implants may work.
Radiation carries the risk of side effects as well but they are generally fewer and less adverse than surgery. Men who are continent and potent before treatment are generally continent and potent after treatment. Some forms of radiation have been shown to sometimes have an effect on a man's ability to achieve an erection years after treatment due to the delayed effects of damage to the nerve bundles. Drugs like Viagra are successful in treating this condition. Depending upon the type of radiation you choose, the risk of these side effects can vary greatly.
Hormone therapy causes impotency and loss of libido because it blocks testosterone. Other side effects can include breast enlargement, depression, weight gain, and other lifestyle impacts.
As you can see, nothing in this game is for free. There are no magic bullets and run quickly from anyone who tries to tell you otherwise.
Please, please, please plan on seeking second opinions. At a minimum you should consult another urologist who will be a surgeon, a radiation oncologist that treats prostate cancer, and an oncologist who, hopefully, can give you a balanced opinion. In my own case with a low risk Gleason 6 diagnosis I met with six specialists before making a decision.
It's a smart move to have your fiancé with you. She needs to know what she's getting into since prostate cancer is very much a couple's disease and her support and understanding as you go through the decision process and beyond will be critical. Ask her to take notes while the doctor is talking because I can almost guarantee you that you will be so emotionally strung out at this early meeting that you will not remember most of what he tells you.
Hope this helps and I hope that you come back and share the results of your visit. There are many men who post on this forum who will share with you their personal experiences in dealing with this disease and the aftermath of their treatment choices.
Best,
K
p.s. When you visit with your doctor tomorrow be sure to get paper copies of ALL his files on you. You will need them when you consult with other specialists and you will find yourself frequently referring back to these as time goes on.
T Paul,
Kongo hit it. Most of us who had RP end up suffering incontinence, if they take seminal vessels impotence, and so on. Should you need treatment definetly have everyone explain what to expect. Urologists do have a tendency to recommend RP. If it is not too bad active surveliance is great. Unfortunately only you can make this choice. Once you know more share the info and the people here with great knowledge will offer their advice. This is "not medical advice". As most of us have only gone through this and are not doctors. The advice is frommthe heart and it usually tells you what we have experienced.
Good luck to you.
Mike0 -
Questions
Here's a link to questions you might want to consider asking the doctor:
http://www.cancer.org/acs/groups/cid/@nho/documents/document/questions-about-prostate-cance.pdf0 -
The best question you asked
You should look hard for a second opinion. Depending on your G score, which is the key factor in the decision, no treatment may be the best step at the present. Be CERTAIN that your first and second (and subsequent) opinions are fully explained, with consequences, side effects, and costs all covered. You have time, precious time to make this decision. Any decision entered in haste will be repented at leisure.0 -
duplicate
duplicate0 -
Sorry to heartarhoosier said:duplicate
duplicate
The doctor visit, it is good to have another person with you. There will be a lot of information comming at you. And you will not be able to remember all of it.
Get a copy of the lab biopsy report for your records. All you have to do is sign a release with the doctor's office.
The biopsy report for the most part will set the stage for treatment options.
Surgery is one method, but there might be other options that will work just as well.
Talk to the doctor and ask questions,if you donot understand, stop him and ask for explantion.
I would caution on surgery, the side effects can be rough, I have had a hard time comming back from this surgery,
If the cancer is low grade, then you might have some time to research and decide on the best treatment method.
Again sorry to hear about this, hang in there.
Kurt0 -
Critical Data
I'll wait to comment after you report exactly what your diagnosis is. The critical data are:
1) your Gleason score (6 is best)
2) your current PSA (10 of less is best)
3) your Stage (its NOT just 1, its T1c or something else like that)
If you don't know what these are, ask your urologist to explain them or research them on thee Net. With this data, you can determine what course of action needs to be taken.
Good luck!0 -
WelcomeSwingshiftworker said:Critical Data
I'll wait to comment after you report exactly what your diagnosis is. The critical data are:
1) your Gleason score (6 is best)
2) your current PSA (10 of less is best)
3) your Stage (its NOT just 1, its T1c or something else like that)
If you don't know what these are, ask your urologist to explain them or research them on thee Net. With this data, you can determine what course of action needs to be taken.
Good luck!
i can tell you about my decision. i went with a r/p in '03. as a result i have incontinence but only when i sleep. i had radiation therapy years later because of recurrence of cancer cells in my prostate bed. so far the radiation has seemed to work. i think i was to hasty with my decision. you've come to the correct place. lots of information here.0 -
The resultsKongo said:Welcome
T Paul,
I am sorry to read of your diagnosis. The men who post here have all been in your shoes and we are keen to provide what support we can as you deal with this disease.
First off, it's way, way too early to be thinking about what kind of treatment you might require. First you need to understand completely the diagnosis which includes not only the number of samples that were positive but the Gleason score, the size of your prostate, your PSA history, family history of prostate cancer, DRE results, any physical symptoms that might exist, and your general health.
Prostate cancer is classified as either low risk, intermediate risk, or high risk depending upon the Gleason score and to a lesser extent the PSA velocity and the PSA doubling time, which BTW, is not an algebraic calculation. The most important thing you need to know is your Gleason score because recommendations for treatment almost always flow from that. In this regard, understand that the Gleason score is a SUBJECTIVE assessment of your slides by the pathologist that reviews them. It is not uncommon for pathologists to under or over read the Gleason scores and I strongly recommend that you get a second opinion on your slides from an institution that specializes in reading prostate cancer samples, like Johns Hopkins. Your doctor can explain how you can have your slides shipped off for a second opinion.
Your urologist is required to explain the diagnosis to you and review the gamut of common treatment methods which include surgical removal of the prostate, radiation, hormone therapy, or active surveillance. Since all urologists are surgeons, more than 90% of them will recommend the surgical removal of your prostate either through standard surgery or using the assistance of a robotic machine.
Radiation can be one of several different techniques but the most common are proton therapy, various forms of external radiation using photons, or internal "seed" implants called brachytherapy. There are several variations and techniques to these options.
Hormone therapy is often used either alone or in conjunction with radiation or surgery to curb the growth of prostate cancer by chemically castrating the patient and eliminating testosterone for a period of time that can be from a few months to a few years. Hormone therapy does not cure prostate cancer but it can slow the growth of the disease for several years. Until it reaches a very advanced stage, prostate cancer needs testosterone to grow.
Men with a low risk diagnosis should also consider active surveillance that involves frequent monitoring of PSA levels and follow-on biopsies every few years. Many prostate cancers are indolent and over treated by the medical profession and active surveillance is appropriate for a large number of newly diagnosed men.
With the exception of active surveillance, all of the common treatment options carry the risk of adverse side effects that will affect the quality of your (and your future wife) life forever. Many men who undergo surgery emerge incontinent and impotent. While the majority of men eventually regain most of their urinary continence and some degree of potency it will never be like it is today. Consider surgery very carefully.
If your surgeon suggests prostate removal to you he might mention "nerve sparing" surgery. The prostate is surrounded by tiny nerve bundles about the size of a human hair. These nerves are necessary for a man to achieve a normal erection. Nerve sparing surgery seeks to preserve these nerves so that a man may achieve an erection "sufficient for penetration once a month" which is the standard that successful potency recovery is measured. Should this procedure not work to the patient's satisfaction injections or mechanical implants may work.
Radiation carries the risk of side effects as well but they are generally fewer and less adverse than surgery. Men who are continent and potent before treatment are generally continent and potent after treatment. Some forms of radiation have been shown to sometimes have an effect on a man's ability to achieve an erection years after treatment due to the delayed effects of damage to the nerve bundles. Drugs like Viagra are successful in treating this condition. Depending upon the type of radiation you choose, the risk of these side effects can vary greatly.
Hormone therapy causes impotency and loss of libido because it blocks testosterone. Other side effects can include breast enlargement, depression, weight gain, and other lifestyle impacts.
As you can see, nothing in this game is for free. There are no magic bullets and run quickly from anyone who tries to tell you otherwise.
Please, please, please plan on seeking second opinions. At a minimum you should consult another urologist who will be a surgeon, a radiation oncologist that treats prostate cancer, and an oncologist who, hopefully, can give you a balanced opinion. In my own case with a low risk Gleason 6 diagnosis I met with six specialists before making a decision.
It's a smart move to have your fiancé with you. She needs to know what she's getting into since prostate cancer is very much a couple's disease and her support and understanding as you go through the decision process and beyond will be critical. Ask her to take notes while the doctor is talking because I can almost guarantee you that you will be so emotionally strung out at this early meeting that you will not remember most of what he tells you.
Hope this helps and I hope that you come back and share the results of your visit. There are many men who post on this forum who will share with you their personal experiences in dealing with this disease and the aftermath of their treatment choices.
Best,
K
p.s. When you visit with your doctor tomorrow be sure to get paper copies of ALL his files on you. You will need them when you consult with other specialists and you will find yourself frequently referring back to these as time goes on.
Thank you all for the insight and well wishes. The biopsy report as follows.
14 specimens. 11 benign. No perineural invasion. PSA 1.60
Stage = T1C
The right apex prostatic adenocarcinoma. Gleason 3+4=7. 14% tumor.
The right mid " " Gleason 3+3=6. 4% tumor.
The right lateral apex " " Gleason 3+3=6 33% tumor
So the Dr. did not steer me towards any specific treatment but Robotic radical Prostatectomy and Brachytherapy were discussed the most as these were the two treatments I am the most interested in at this time. There was also some discussing about combining brachytherapy with IMRT. In looking into this further found some information about ProstRcision which appears to be a combination of the two.Tomorrow I will be looking to schedule second opinion consultations with St. Josephs prostate center in Atlanta and the Cancer Treatments Center in Newnan Ga.
Lastly. Would it be recommended to have the biopsies looked at by another lab and do I really need to move on the before the end of the year?
Thanks for the feedback.
T0 -
second opinion by a pathologist/ Also tesla 3.0 MRI diagnostic tT Paul said:The results
Thank you all for the insight and well wishes. The biopsy report as follows.
14 specimens. 11 benign. No perineural invasion. PSA 1.60
Stage = T1C
The right apex prostatic adenocarcinoma. Gleason 3+4=7. 14% tumor.
The right mid " " Gleason 3+3=6. 4% tumor.
The right lateral apex " " Gleason 3+3=6 33% tumor
So the Dr. did not steer me towards any specific treatment but Robotic radical Prostatectomy and Brachytherapy were discussed the most as these were the two treatments I am the most interested in at this time. There was also some discussing about combining brachytherapy with IMRT. In looking into this further found some information about ProstRcision which appears to be a combination of the two.Tomorrow I will be looking to schedule second opinion consultations with St. Josephs prostate center in Atlanta and the Cancer Treatments Center in Newnan Ga.
Lastly. Would it be recommended to have the biopsies looked at by another lab and do I really need to move on the before the end of the year?
Thanks for the feedback.
T
This is very, very important.....YOU NEED TO GET A SECOND OPINION ON YOUR BIOPSY SLIDES BY A WORLD CLASS PATHOLOGIST WHO SPECIALIZES IN PROSTATE CANCER. Determining the gleason scores are subjective, and the run of the mill pathologist may or may not be accurate. This is very important for those diagnosed with low aggressive disease. You do not want to be under or over treated
..........................
Click my name to find information about getting an MRI diagnostic test.....you want to know where the potential cancer is in the prostate, and if there is extracapsular extension.....this will affect your treatment decision.0 -
No Need To Be Scared to DeathT Paul said:The results
Thank you all for the insight and well wishes. The biopsy report as follows.
14 specimens. 11 benign. No perineural invasion. PSA 1.60
Stage = T1C
The right apex prostatic adenocarcinoma. Gleason 3+4=7. 14% tumor.
The right mid " " Gleason 3+3=6. 4% tumor.
The right lateral apex " " Gleason 3+3=6 33% tumor
So the Dr. did not steer me towards any specific treatment but Robotic radical Prostatectomy and Brachytherapy were discussed the most as these were the two treatments I am the most interested in at this time. There was also some discussing about combining brachytherapy with IMRT. In looking into this further found some information about ProstRcision which appears to be a combination of the two.Tomorrow I will be looking to schedule second opinion consultations with St. Josephs prostate center in Atlanta and the Cancer Treatments Center in Newnan Ga.
Lastly. Would it be recommended to have the biopsies looked at by another lab and do I really need to move on the before the end of the year?
Thanks for the feedback.
T
Based on this data, you really have no reason to be "scared to death."
You have a "relatively" early stage PCa with a Gleason 6-7 and a very low PSA. The extent of the cancer seems broader than the typical early stage PCa but, if the cancer has not yet spread beyond the prostate capsule your prospects for survival are very good.
Now's the time to take stock and to research all of the various methods of treatment available to you, which is basically all of them. As I mentioned in another thread, I don't see the reason to receive both LDR BT and IMRT at the same time, even for a Gleason 7. You'd just be hitting the same areas w/a primary and secondary dose of radiation when either one alone should be enough.
See my comments here (in the 3rd post in the thread) about that and other methods of treatment available to you: http://csn.cancer.org/node/249453
As for surgery, I don't like it even for more advanced cancers because IMHO the risks of surgery do not warrant the benefits given the availablility of equally effective and less risky radiation treatments. If you are considering surgery, I seriously suggest that you read the following article, which should definitely give you pause before making it your choice:
http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/
My advice to you is the same I have gave in the other thread:
"Don't simply rely on what I, your doctors or anyone else tells you. Do your own research and make your own decisions about how you want to treat your cancer. This will give you the greatest opportunity for success and control over the results that follow>"
Good luck!0
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