Paralyzed with fear - gleason score 9 (very worried wife)

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djs123
djs123 Member Posts: 102
My husband was diagnosed with aggressive prostate cancer day before yesterday and we are both reeling. I am sure you can all relate to the feeling of shock, disbelief and numbness that accompanies the doctors bad news. I felt so sure his biopsy was going to be a false alarm....

Doctor opened with with "I'm sorry but you have a very aggressive case of prostate cancer". I'm so confused and have been scouring the web since we've gotten home. I really don't even know what to ask but need an outlet right now because I can't stop crying. It seems that time has stood still since we've found out. I put on a very brave and positive face for my husband, but inside I'm terrified.

Here are the fact as I know them so far.Biopsy 12 locations 8 came back positive.

(Btw, he was diagnosed through a urology team, his doctor is a DO. Are those credentials adequate, he seemed very thorough and knowledgeable)

His gleason score is 9 (5+4)
The doctor explained that the score can range from 2 to 10, with 10 being the worst, so obviously this is very bad.

at the bottom of this post, I will put in the other figures, so perhaps someone can tell me what they mean.

Today we went for a bone scan and Tuesday we will go for a cat scan. The follow up appointment with the doctor is next Friday.

The doctor said he is not a candidate for surgery and treatment will most likely be radiation and hormone therapy. After he's determined if the cancer has spread. He implied there was a good change with a gleason score of 9.

We spend half our time in Florida and half in Massachusetts and were due to go back the end of December. My husband wants to have treatment done in Florida which means we'd have to find an oncologist in our area. Does anyone have an opinion about this?

My husband is 78 years old, in very good health, strong and optimistic (I think), but he does not share his emotions or anxieties, never has.

As far as his symptoms go, he has trouble with a steady flow for the past few months and gets up at least once during the night. During the physical exam, the doctor did say he felt something (which he thought could have been calcium) on his prostate, but apparently was the cancer.

I need to support him and I'm not really sure how to do that. He is the type of man that doesn't like to be coddled or taken care of, nor does he like to be fussed over. I'm trying to become educated about this, so perhaps I feel as though I'm doing something.

Anything you can offer me would be very appreciated. Whether it be interpretation of lab report or what to do for him, I can use whatever guidance you're willing to offer.

Here are the other numbers listed under Diagnosis
Prostatic Adenocarcinoa, Gleason 5+4=9/1- LMB,LMA
Gleason 4+5 - 9/10 LLB, LLM,LMM
Gleason 4+4 = 8/10 RMA
Gleason 3+ 3 = 6/10

Thank you very much.
«1

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
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    Please get second opinions
    DJS,
    I am so sorry that you and your husband find yourself dealing with this diagnosis but you have come to a good place to gather information from others who have travelled this path before you. I hope you also encourage your husband to join the website as well as I think he will benefit from being able to interact directly with other men suffering from this disease.

    I assume that the “DO” doctor you are referring to is a doctor of osteopathic medicine. While he may seem very knowledgeable and thorough, I believe that with the serious diagnosis you have that you should consider immediately seeking second opinions from specialists in advanced prostate cancer. When I was diagnosed with “low risk” prostate cancer in 2010 I ended up seeing six specialists before deciding on a treatment.

    As you are beginning to understand, a Gleason 9 diagnosis is very serious indeed but it is certainly not the end of the world and there are many treatment options that can slow the progression of this disease and provide your husband a high quality of life and the both of you many, many more years together.

    Prostate cancer, like breast, ovarian, colon, and other cancers tends to metastasize. This is why your doctors ordered bone scans and the MRI. They are looking to see if there are any distant tumors that can be detected. Even if these scans come back “negative” it doesn’t mean that the cancer hasn’t spread, it just means that they can’t see it yet. That’s a good thing. If they can see distant mets they can decide how to treat them and that’s another good thing.

    Surgery to remove the prostate is typically not done for men over 70 or for men with heart conditions. Also, with a Gleason 9 the likelihood that the cancer has already spread is almost a certainty and removing the prostate won’t stop the progression of cancer elsewhere in the body. It will only add additional side effects involving urinary continence and sexual function on top of any symptoms the cancer brings. Keep in mind that cancer in the prostate is not what kills men, it’s the prostate cancer that spreads to other organs or the bone that eventually kills men although it should be kept in mind that only about 1 in every 35 men with prostate cancer actually die from it.

    Prostate cancer needs testosterone to grow and multiply. Hormone therapy drugs block testosterone from the cancer cells and in the absence of testosterone most (but not all) of the cancer cells will eventually die if the therapy is administered properly and for the right amount of time. There are side effects to hormone therapy that can involve hot flashes, loss of libido, mood changes, weight gain, breast enlargement, and so forth but there is considerable variation in how different men are affected. As prostate cancer progresses (as in the case of the higher Gleason scores) the cells become more primitive and can continue to grow even in the absence of testosterone or they will make their own testosterone. Other drugs are available to treat cancer cells that become resistant to conventional hormone therapy.

    Various forms of radiation are also used to treat advanced prostate cancer and to the mets in distant locations. Your doctors (and the second opinion doctors I hope you visit) can describe the pros and cons of this treatment. Typically radiation has very little side effects and is very effective in treating mets in the bones (prostate cancer really likes bone marrow).

    I fully understand your emotional condition at this point but there have been many advances in the treatment of this cancer in recent years and even advanced cancer such as your husband’s is no longer an automatic death sentence. At this point we need to rationally and pragmatically look at the options and the pros and cons of potential treatment opportunities. Every treatment has some sort of downside, and some can be quite severe. While none of us expect to live forever, in my opinion at least, those days that we do have left should be the highest quality possible. As you and your husband understand more about this disease you will be able to assess your individual quality of life priorities and balance those against the treatment options. In my opinion, only an educated and assertive patient with the support of his family can adequately meet this challenge.

    While I strongly suggest that you seek out second opinions from doctors who specialize in the treatment of prostate cancer, I would certainly talk to your DO about dietary changes that might help curb the progression of this cancer, particularly with the intake of red meat, dairy products, and processed foods.

    Best of luck to you both.

    K
  • djs123
    djs123 Member Posts: 102
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    Kongo said:

    Please get second opinions
    DJS,
    I am so sorry that you and your husband find yourself dealing with this diagnosis but you have come to a good place to gather information from others who have travelled this path before you. I hope you also encourage your husband to join the website as well as I think he will benefit from being able to interact directly with other men suffering from this disease.

    I assume that the “DO” doctor you are referring to is a doctor of osteopathic medicine. While he may seem very knowledgeable and thorough, I believe that with the serious diagnosis you have that you should consider immediately seeking second opinions from specialists in advanced prostate cancer. When I was diagnosed with “low risk” prostate cancer in 2010 I ended up seeing six specialists before deciding on a treatment.

    As you are beginning to understand, a Gleason 9 diagnosis is very serious indeed but it is certainly not the end of the world and there are many treatment options that can slow the progression of this disease and provide your husband a high quality of life and the both of you many, many more years together.

    Prostate cancer, like breast, ovarian, colon, and other cancers tends to metastasize. This is why your doctors ordered bone scans and the MRI. They are looking to see if there are any distant tumors that can be detected. Even if these scans come back “negative” it doesn’t mean that the cancer hasn’t spread, it just means that they can’t see it yet. That’s a good thing. If they can see distant mets they can decide how to treat them and that’s another good thing.

    Surgery to remove the prostate is typically not done for men over 70 or for men with heart conditions. Also, with a Gleason 9 the likelihood that the cancer has already spread is almost a certainty and removing the prostate won’t stop the progression of cancer elsewhere in the body. It will only add additional side effects involving urinary continence and sexual function on top of any symptoms the cancer brings. Keep in mind that cancer in the prostate is not what kills men, it’s the prostate cancer that spreads to other organs or the bone that eventually kills men although it should be kept in mind that only about 1 in every 35 men with prostate cancer actually die from it.

    Prostate cancer needs testosterone to grow and multiply. Hormone therapy drugs block testosterone from the cancer cells and in the absence of testosterone most (but not all) of the cancer cells will eventually die if the therapy is administered properly and for the right amount of time. There are side effects to hormone therapy that can involve hot flashes, loss of libido, mood changes, weight gain, breast enlargement, and so forth but there is considerable variation in how different men are affected. As prostate cancer progresses (as in the case of the higher Gleason scores) the cells become more primitive and can continue to grow even in the absence of testosterone or they will make their own testosterone. Other drugs are available to treat cancer cells that become resistant to conventional hormone therapy.

    Various forms of radiation are also used to treat advanced prostate cancer and to the mets in distant locations. Your doctors (and the second opinion doctors I hope you visit) can describe the pros and cons of this treatment. Typically radiation has very little side effects and is very effective in treating mets in the bones (prostate cancer really likes bone marrow).

    I fully understand your emotional condition at this point but there have been many advances in the treatment of this cancer in recent years and even advanced cancer such as your husband’s is no longer an automatic death sentence. At this point we need to rationally and pragmatically look at the options and the pros and cons of potential treatment opportunities. Every treatment has some sort of downside, and some can be quite severe. While none of us expect to live forever, in my opinion at least, those days that we do have left should be the highest quality possible. As you and your husband understand more about this disease you will be able to assess your individual quality of life priorities and balance those against the treatment options. In my opinion, only an educated and assertive patient with the support of his family can adequately meet this challenge.

    While I strongly suggest that you seek out second opinions from doctors who specialize in the treatment of prostate cancer, I would certainly talk to your DO about dietary changes that might help curb the progression of this cancer, particularly with the intake of red meat, dairy products, and processed foods.

    Best of luck to you both.

    K

    Gleason score 9
    Thank you so much for your advice. I'm grateful to hear rational sound advice. I know a second opinion is in order and although my husband does not want to visit another doctor, he's willing to send his records off and get a consultation that way, which I hope they agree to do. I would feel more comfortable having an expert review this.

    You have given me hope and I'm so grateful for that.

    This is not a great forum to be a part of, but I am so grateful it exists and there are people like you that will lend an ear an offer advice.

    Thank you.
  • VascodaGama
    VascodaGama Member Posts: 3,662 Member
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    djs123 said:

    Gleason score 9
    Thank you so much for your advice. I'm grateful to hear rational sound advice. I know a second opinion is in order and although my husband does not want to visit another doctor, he's willing to send his records off and get a consultation that way, which I hope they agree to do. I would feel more comfortable having an expert review this.

    You have given me hope and I'm so grateful for that.

    This is not a great forum to be a part of, but I am so grateful it exists and there are people like you that will lend an ear an offer advice.

    Thank you.

    Second Opinion on Biopsy
    DJS

    Welcome to the board.
    I am sorry about the diagnosis of your husband. I do understand your feelings and the need to cry. We all do when told of the diagnosis.
    As Kongo comments Gleason score 9 is aggressive but there are reasons to believe that your husband will knock down the cancer. Hormonal treatment (HT) may be the choice for 78 years old.

    I wonder what made your husband to go through a biopsy. Has he done a PSA test?
    Can you share what clinical stage was attributed to your husband in the pathologists’ report?

    Getting a second opinion on the biopsy cores is a good “first step” to start with. You can do it by courier yourself or request the doctor to send the samples and all pertaining data (and reports) to a reliable laboratory performed by a recognized expert in examining PCa tissue, such as Dr. Epstein at Johns Hopkins or Dr. Bostwick of Bostwick Laboratories.
    You can get the addresses here;
    http://www.psa-rising.com/prostatecancer/biopsy.htm

    A famous oncologist, himself a PCa survivor, is Dr. Charles Myers from Virginia. You could call his office to request a consultation. He may be the best choice for a second opinion in cases similar to that of your husband.

    I am younger at 62 and have been on HT for the past 13 months. The side effects have been many but mild. HT in my case is controlling the progress of the cancer and sent me to “remission” levels. Diet, changes in my life routines and physical exercises is helping me in countering the effects.

    Wishing you find peace of mind.

    Vgama
  • lewvino
    lewvino Member Posts: 1,010
    Options
    You have allready received
    You have allready received excellent synopsis and advice from a couple great members on our forum.
    So I will just offer my words of support and understanding.

    As mentioned the Gleason 9 is the serious category. Seek that second opinion as to treatment options.

    There are men and woman on this forum that have been down the road before you and we are all hear to support you and your husband during this journey.

    lewvino
    Gleason 7
    Prostate removed Davinci
    Cancer free 29 months!
  • tarhoosier
    tarhoosier Member Posts: 195 Member
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    Fear? Fear!
    Mrs S:
    Fear is the natural reaction. I recall it well. I lost 15-20 pounds after diagnosis and needed medication for sleep. I have moved on. I recall the shock and depression as clearly as possible after six years have passed.
    Your husband needs the BEST medical advice possible. A second opinion on the G score is proper and necessary as Vasco says. Another opinion on the treatment is possible as well. Radiation with hormone is a likely (certain?) recommendation.
    The good news? Your husband is not likely to die of this disease.

    I do not fully understand the biopsy information, but that is not really important. If the second opinion on the samples confirms anything over a G7 then treatment is likely to begin promptly. Mr. S has a very long time to go.
  • djs123
    djs123 Member Posts: 102
    Options

    Fear? Fear!
    Mrs S:
    Fear is the natural reaction. I recall it well. I lost 15-20 pounds after diagnosis and needed medication for sleep. I have moved on. I recall the shock and depression as clearly as possible after six years have passed.
    Your husband needs the BEST medical advice possible. A second opinion on the G score is proper and necessary as Vasco says. Another opinion on the treatment is possible as well. Radiation with hormone is a likely (certain?) recommendation.
    The good news? Your husband is not likely to die of this disease.

    I do not fully understand the biopsy information, but that is not really important. If the second opinion on the samples confirms anything over a G7 then treatment is likely to begin promptly. Mr. S has a very long time to go.

    Gleason score 9
    Thank you all for your comments and suggestions. To answer a question posed. My husband's psa on 12/22 was 1.46. We were under the impression that was within normal range, however, the report from the urologist states "elevated psa", under clinical history. However, I believe his psa has always been within normal range. The doctor did explain that the psa test is not an accurate gauge, but is the only tool they now have.
    The reason for the biopsy in the first place was on physical examination, the doctor said, things didn't feel right up there and were bumpy.
    Vgama, You asked about the clinical stage on the pathalogy report, I have it in front of me and short of the numbers I had indicated, the only other information outlined are the 12 areas biopsied with numbers next to them. Is that what you're asking about?

    Thank you for the information on John Hopkins, etc. I take it then, we don't have to physically go for a second opinion? That's good. I was also given Dana Farber as a contact (as we are in Massachusetts). However, if we can send lab results etc off, I guess location won't matter. Since my husband prefers to go back to Florida I think I'll make some calls today to try and get names of the best oncologist in our area down there. I feel like I'm in action, and I feel very grateful for the hope you have all given me.

    I pray this cancer has not spread, we will get those results end of next week.
  • Kongo
    Kongo Member Posts: 1,166 Member
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    djs123 said:

    Gleason score 9
    Thank you all for your comments and suggestions. To answer a question posed. My husband's psa on 12/22 was 1.46. We were under the impression that was within normal range, however, the report from the urologist states "elevated psa", under clinical history. However, I believe his psa has always been within normal range. The doctor did explain that the psa test is not an accurate gauge, but is the only tool they now have.
    The reason for the biopsy in the first place was on physical examination, the doctor said, things didn't feel right up there and were bumpy.
    Vgama, You asked about the clinical stage on the pathalogy report, I have it in front of me and short of the numbers I had indicated, the only other information outlined are the 12 areas biopsied with numbers next to them. Is that what you're asking about?

    Thank you for the information on John Hopkins, etc. I take it then, we don't have to physically go for a second opinion? That's good. I was also given Dana Farber as a contact (as we are in Massachusetts). However, if we can send lab results etc off, I guess location won't matter. Since my husband prefers to go back to Florida I think I'll make some calls today to try and get names of the best oncologist in our area down there. I feel like I'm in action, and I feel very grateful for the hope you have all given me.

    I pray this cancer has not spread, we will get those results end of next week.

    PSA
    djs,

    In advanced prostate cancer typical with a Gleason 9 it is not uncommon to have low PSA scores. This is because as the cancer cells become more and more advanced (they actually become more primitive cells and are less and less like normal prostate cells) they tend to produce less PSA.

    Your doctor was right about the PSA level being a poor predictor of cancer. It only has about a 50% accuracy rate when used as a stand alone tool which means you can do just as well predicting cancer by flipping a coin. PSA density, PSA doubling times, and PSA velocity calculations give more insight into what might be going on but those are really only valid for cancers that are not as advanced as a Gleason 9.

    The only sure way to diagnose prostate cancer is through a positive biopsy and you certainly have that in spades.

    Given the high number of retirees in Florida I am sure you will have little problem in finding a top rate prostate cancer specialist.

    K
  • djs123
    djs123 Member Posts: 102
    Options
    Kongo said:

    PSA
    djs,

    In advanced prostate cancer typical with a Gleason 9 it is not uncommon to have low PSA scores. This is because as the cancer cells become more and more advanced (they actually become more primitive cells and are less and less like normal prostate cells) they tend to produce less PSA.

    Your doctor was right about the PSA level being a poor predictor of cancer. It only has about a 50% accuracy rate when used as a stand alone tool which means you can do just as well predicting cancer by flipping a coin. PSA density, PSA doubling times, and PSA velocity calculations give more insight into what might be going on but those are really only valid for cancers that are not as advanced as a Gleason 9.

    The only sure way to diagnose prostate cancer is through a positive biopsy and you certainly have that in spades.

    Given the high number of retirees in Florida I am sure you will have little problem in finding a top rate prostate cancer specialist.

    K

    GLEASON 9
    Well thanks to all of you, I have been very busy researching, reading and learning and am becoming more and more hopeful.
    I did go on the John Hopkins website and see that it is quite easy to get a second opinion and I understand how to do that through our doctor.
    Dr. Meyers may be an option, but I'm not sure my husband will want to go through him as he doesn't take insurance.

    I am waiting for a referral to Dana Farber also, I'm thinking perhaps it would be better to have an actual name there.
    Our GP in Florida has recommended an oncologist in Florida, so I have that information lined up.
    I've checked his credentials and they look good, (schools etc) Does anyone have any additional suggestions for me as to how to check further on this doctor's background?

    Husband has ct scan scheduled next week. After the appt with the doc, and we have more information, we'll send off all information for second and perhaps third opinions and see where we go from there.
    Do you think, perhaps just an opinion from John Hopkins would be enough. After all, how will we know which to go with if we get more than one. I'm a bit confused by that and considering my husband doesn't even feel a second opinion is necessary???? Although I think he may just be afraid and is probably anxious to get started with treatment. He feels that the lab reports are self explanatory and treatment is treatment.

    Again, thanks for the info and mostly for the hope. At least I feel like I'm doing SOMETHING, which is very helpful
    God bless you all and keep us all strong.
  • tarhoosier
    tarhoosier Member Posts: 195 Member
    Options
    djs123 said:

    GLEASON 9
    Well thanks to all of you, I have been very busy researching, reading and learning and am becoming more and more hopeful.
    I did go on the John Hopkins website and see that it is quite easy to get a second opinion and I understand how to do that through our doctor.
    Dr. Meyers may be an option, but I'm not sure my husband will want to go through him as he doesn't take insurance.

    I am waiting for a referral to Dana Farber also, I'm thinking perhaps it would be better to have an actual name there.
    Our GP in Florida has recommended an oncologist in Florida, so I have that information lined up.
    I've checked his credentials and they look good, (schools etc) Does anyone have any additional suggestions for me as to how to check further on this doctor's background?

    Husband has ct scan scheduled next week. After the appt with the doc, and we have more information, we'll send off all information for second and perhaps third opinions and see where we go from there.
    Do you think, perhaps just an opinion from John Hopkins would be enough. After all, how will we know which to go with if we get more than one. I'm a bit confused by that and considering my husband doesn't even feel a second opinion is necessary???? Although I think he may just be afraid and is probably anxious to get started with treatment. He feels that the lab reports are self explanatory and treatment is treatment.

    Again, thanks for the info and mostly for the hope. At least I feel like I'm doing SOMETHING, which is very helpful
    God bless you all and keep us all strong.

    Second opinion
    Just to be sure there is understanding, the second opinion I believe you are referring to is a second opinion ON THE BIOPSY SAMPLES. There may be no need for a second opinion on the treatment modality, though you may seek one. JHU can determine with near certainty the Gleason score of his samples. This is done by a doctor sending the samples to JHU and receiving the results in a reasonable time, usually 2-3 weeks, maybe less. This is to be certain the original pathology opinion was sufficient to require treatment. I think it is likely that the JHU opinion (or whoever is doing it) will still require hormone/radiation for Mr. S. There is some issue of starting promptly, particularly with G9. Hormone can start one place with radiation happening someplace else a biit later.
    At that point is is important to find the best and most experienced doctor for the radiation. Do not be intimidated by technology, unsupported claims, promises, jargon.
  • djs123
    djs123 Member Posts: 102
    Options

    Second opinion
    Just to be sure there is understanding, the second opinion I believe you are referring to is a second opinion ON THE BIOPSY SAMPLES. There may be no need for a second opinion on the treatment modality, though you may seek one. JHU can determine with near certainty the Gleason score of his samples. This is done by a doctor sending the samples to JHU and receiving the results in a reasonable time, usually 2-3 weeks, maybe less. This is to be certain the original pathology opinion was sufficient to require treatment. I think it is likely that the JHU opinion (or whoever is doing it) will still require hormone/radiation for Mr. S. There is some issue of starting promptly, particularly with G9. Hormone can start one place with radiation happening someplace else a biit later.
    At that point is is important to find the best and most experienced doctor for the radiation. Do not be intimidated by technology, unsupported claims, promises, jargon.

    second opinion
    Thanks for the clarification. I was under the impression the second opinion would review the slides, confirm the results and then recommend the treatment.
    There seem to be so many options on treatment, different types of radiation and different types of hormones.
    If in fact, the second opinion, only confirms the biopsy, how do we go about finding out if the treatment the current doctor recommends is the correct treatment for his problem. I agree he should start something immediately, so time is important here, Is it possible another lab would read these results differently? Aren't the results self explanatory to any expert reading these reports?

    You seem very well informed and quite knowledgeable. Do you recommend we use Hopkins or Dana Farber for the second opinion? Appreciate anyone's opinion who cares to comment.
    Thanks
  • rch
    rch Member Posts: 79
    Options
    djs123 said:

    second opinion
    Thanks for the clarification. I was under the impression the second opinion would review the slides, confirm the results and then recommend the treatment.
    There seem to be so many options on treatment, different types of radiation and different types of hormones.
    If in fact, the second opinion, only confirms the biopsy, how do we go about finding out if the treatment the current doctor recommends is the correct treatment for his problem. I agree he should start something immediately, so time is important here, Is it possible another lab would read these results differently? Aren't the results self explanatory to any expert reading these reports?

    You seem very well informed and quite knowledgeable. Do you recommend we use Hopkins or Dana Farber for the second opinion? Appreciate anyone's opinion who cares to comment.
    Thanks

    Second opinion from JHU
    DJS
    Sorry to hear about your husband's CaP. If you are interested in a second opinion from Johns Hopkins , please visit the website below. It gives all the costs, terms and conditions and FAQs about the second opinion. Thanks
    http://www.hopkinsmedicine.org/second_opinion/urology/
  • djs123
    djs123 Member Posts: 102
    Options
    rch said:

    Second opinion from JHU
    DJS
    Sorry to hear about your husband's CaP. If you are interested in a second opinion from Johns Hopkins , please visit the website below. It gives all the costs, terms and conditions and FAQs about the second opinion. Thanks
    http://www.hopkinsmedicine.org/second_opinion/urology/

    second opinion
    Rch

    Thanks for the info. I am definitely going to follow up with John Hopkins and Dana Farber as well.

    I'm so happy and thrilled to report that his bone scan came through negative, got the news through the GP tonight with whom I was consulting about second opinions, etc.
    Now we wait....the catscan is next week.
    Sending blessing to all
  • VascodaGama
    VascodaGama Member Posts: 3,662 Member
    Options
    djs123 said:

    second opinion
    Rch

    Thanks for the info. I am definitely going to follow up with John Hopkins and Dana Farber as well.

    I'm so happy and thrilled to report that his bone scan came through negative, got the news through the GP tonight with whom I was consulting about second opinions, etc.
    Now we wait....the catscan is next week.
    Sending blessing to all

    Be Positive, Your Husband will do well
    DJS

    I am glad to read about the negative bone scan. This may indicate that your husband status is Localized and it could well be contained. The CT scan will take a picture at the pelvic area and may provide move evidence/info on the localized spread of the cancer. However, it is common to get negative image studies when patients have low PSA levels, because the tumour is too small for the equipment’s image capabilities.
    In fact, NCCN recommend these tests to cases with PSAs over 10, but CT data will serve as an important basic “tool” for future references and will provide a much needed peace of mind.

    In your first post you say that “...the doctor said, things didn't feel right up there and were bumpy...”, this piece of information is related to a positive DRE. The “bumpiness” is from nodes in the prostate shell felt by the doctor when touching the gland. The worse is that these nodes could be indicative of extra capsular extensions and, therefore it could indicate some possible localized spread of micrometastases.
    Is there any comment on ExCE by the doctor or the pathologist?

    If these micro colonies of cancer are big enough they may be caught by the scan.
    If the CT is negative one would think of your husband’s case as contained. In any case, surgery is not recommended on two points; The age of your husband and The positive DRE.
    Your husband has the word for the final decision. My opinion as a layman (no medical enrolment) is that he should follow a palliative protocol with androgen deprivation (hormonal). I read posts of guys at the age of your husband that have chosen surgery as their prime treatment. (????)

    The “numbers” you indicated from the pathologist report below, are probably from four cores found with cancer within the 12 samples taken. The percentage is also in the report and that would indicate the volume of the cancer.
    Gleason grades of 4 and 5 (the highest) are present in the Left Lobe. And Gleason grade of 4 are in the Right Lobe. Both medial base and apex are affected (MB and MA). The bumpiness may be at the lateral mid base (LB).

    “ Prostatic Adenocarcinoma, Gleason 5+4=9/1- LMB,LMA
    Gleason 4+5 - 9/10 LLB, LLM,LMM
    Gleason 4+4 = 8/10 RMA
    Gleason 3+ 3 = 6/10...”

    The above classifies your husband on the clinical stage T2c. With a positive CT scan he would become a T3a. If DRE have been negative then it would be T1c (contained).
    The PSA at 1.46 (ng/ml) is considered low. In the presence of a positive DRE and Gs 9 the diagnosis is for an aggressive form of cancer which requires control before it becomes systemic. After treatment (any form), the continuous evaluation of your husbands’ case will always use the PSA as a marker of success, even with G-grades of 4 and 5, because the cancer found is Adenocarcinoma. Kongo’s opinion on PSA is partially correct.

    In regards to second opinions, you can have both; Recheck the data obtained in other sources (biopsy, scans, etc.), and Opinions on treatments (RP, RT, HT, etc.).
    In both cases the whole data gathered by your doctor should be sent for the second opinion with a referral indicating the suggested therapy. Other information related to other health problems and medications taken should also be attached, so that you would get the best reply.

    Johns Hopkins and Dana-Farber are centres of excellence for prostate cancer. You could expect a trustful reliable opinion from their specialists. In Florida you have another institution of excellence the Mayo Clinic (http://www.mayoclinic.org/jacksonville/). You can inquire about their local services on PCa. To find an outstanding oncologist you can research at the pubmed site (http://www.ncbi.nlm.nih.gov/pmc/) typing his name as a researcher. The “good ones” got many published articles on studies involving diagnostics and treatments for prostate cancer.
    Others are also good but tend to follow guide lines from their “sector” of trade (speciality). Surgeons will follow AUS and radiologists will follow ASTRO and oncologists ASCO. It all depends in finding one that your husband likes and feels comfort in.
    The South Florida Radiation Oncology has a department for prostate cancer where you may get a second opinion on radiation oncology.

    Wishing you the best in your continuing researches.


    VGama
  • djs123
    djs123 Member Posts: 102
    Options

    Be Positive, Your Husband will do well
    DJS

    I am glad to read about the negative bone scan. This may indicate that your husband status is Localized and it could well be contained. The CT scan will take a picture at the pelvic area and may provide move evidence/info on the localized spread of the cancer. However, it is common to get negative image studies when patients have low PSA levels, because the tumour is too small for the equipment’s image capabilities.
    In fact, NCCN recommend these tests to cases with PSAs over 10, but CT data will serve as an important basic “tool” for future references and will provide a much needed peace of mind.

    In your first post you say that “...the doctor said, things didn't feel right up there and were bumpy...”, this piece of information is related to a positive DRE. The “bumpiness” is from nodes in the prostate shell felt by the doctor when touching the gland. The worse is that these nodes could be indicative of extra capsular extensions and, therefore it could indicate some possible localized spread of micrometastases.
    Is there any comment on ExCE by the doctor or the pathologist?

    If these micro colonies of cancer are big enough they may be caught by the scan.
    If the CT is negative one would think of your husband’s case as contained. In any case, surgery is not recommended on two points; The age of your husband and The positive DRE.
    Your husband has the word for the final decision. My opinion as a layman (no medical enrolment) is that he should follow a palliative protocol with androgen deprivation (hormonal). I read posts of guys at the age of your husband that have chosen surgery as their prime treatment. (????)

    The “numbers” you indicated from the pathologist report below, are probably from four cores found with cancer within the 12 samples taken. The percentage is also in the report and that would indicate the volume of the cancer.
    Gleason grades of 4 and 5 (the highest) are present in the Left Lobe. And Gleason grade of 4 are in the Right Lobe. Both medial base and apex are affected (MB and MA). The bumpiness may be at the lateral mid base (LB).

    “ Prostatic Adenocarcinoma, Gleason 5+4=9/1- LMB,LMA
    Gleason 4+5 - 9/10 LLB, LLM,LMM
    Gleason 4+4 = 8/10 RMA
    Gleason 3+ 3 = 6/10...”

    The above classifies your husband on the clinical stage T2c. With a positive CT scan he would become a T3a. If DRE have been negative then it would be T1c (contained).
    The PSA at 1.46 (ng/ml) is considered low. In the presence of a positive DRE and Gs 9 the diagnosis is for an aggressive form of cancer which requires control before it becomes systemic. After treatment (any form), the continuous evaluation of your husbands’ case will always use the PSA as a marker of success, even with G-grades of 4 and 5, because the cancer found is Adenocarcinoma. Kongo’s opinion on PSA is partially correct.

    In regards to second opinions, you can have both; Recheck the data obtained in other sources (biopsy, scans, etc.), and Opinions on treatments (RP, RT, HT, etc.).
    In both cases the whole data gathered by your doctor should be sent for the second opinion with a referral indicating the suggested therapy. Other information related to other health problems and medications taken should also be attached, so that you would get the best reply.

    Johns Hopkins and Dana-Farber are centres of excellence for prostate cancer. You could expect a trustful reliable opinion from their specialists. In Florida you have another institution of excellence the Mayo Clinic (http://www.mayoclinic.org/jacksonville/). You can inquire about their local services on PCa. To find an outstanding oncologist you can research at the pubmed site (http://www.ncbi.nlm.nih.gov/pmc/) typing his name as a researcher. The “good ones” got many published articles on studies involving diagnostics and treatments for prostate cancer.
    Others are also good but tend to follow guide lines from their “sector” of trade (speciality). Surgeons will follow AUS and radiologists will follow ASTRO and oncologists ASCO. It all depends in finding one that your husband likes and feels comfort in.
    The South Florida Radiation Oncology has a department for prostate cancer where you may get a second opinion on radiation oncology.

    Wishing you the best in your continuing researches.


    VGama

    Be positive
    Vgama

    I wonder, do you have any medical background? You are so articulate and well informed and such a big help. I'm thrilled to have you to confer with. You have calmed me down considerably and are giving me a better understanding of what we're dealing with.
    As far as EXce, I do not see that on the report anywhere, but the report does breakdown each area tested if you want me to send you that, I can type that out.
    As far as the bone scan goes, I should clarify (if I didn't previously) that these results were not given to us by the urologist. I would assume he will confirm what the GP told us when we have our appointment. I'm hoping there is only one way to read the bone scan results.

    The doctor never mentioned stage levels and they are not indicated on the report. Do these numbers correlate with Stages in other cancers, as in Stage 4 being the most aggressive? Again, thank you so much for all your help.

    By the way, I went to the website you listed to try to find info on the doctor recommended to us and didn't get anywhere so I posted his name on this website, maybe someone is familiar with him.

    djs
  • VascodaGama
    VascodaGama Member Posts: 3,662 Member
    Options
    djs123 said:

    Be positive
    Vgama

    I wonder, do you have any medical background? You are so articulate and well informed and such a big help. I'm thrilled to have you to confer with. You have calmed me down considerably and are giving me a better understanding of what we're dealing with.
    As far as EXce, I do not see that on the report anywhere, but the report does breakdown each area tested if you want me to send you that, I can type that out.
    As far as the bone scan goes, I should clarify (if I didn't previously) that these results were not given to us by the urologist. I would assume he will confirm what the GP told us when we have our appointment. I'm hoping there is only one way to read the bone scan results.

    The doctor never mentioned stage levels and they are not indicated on the report. Do these numbers correlate with Stages in other cancers, as in Stage 4 being the most aggressive? Again, thank you so much for all your help.

    By the way, I went to the website you listed to try to find info on the doctor recommended to us and didn't get anywhere so I posted his name on this website, maybe someone is familiar with him.

    djs

    A bump in your Journey
    DJS

    I hope you get a response on Dr. Nicholas Iannotti. I couldn’t get any information on him even at Pubmed. However, I believe that your GP has no “interests” in your case so that he may have chosen Dr. Iannotti from past relations or just by chance. Florida is very wide and you can find many medical centres caring for prostate cancer. A famous researcher medical oncologist specialist in prostate cancer is Dr. Richard Sorace working with the famous radiologist Dr. Michael J. Dattoli at the Dattoli Cancer Center, Sarasota, FL.
    (http://www.dattoli.com/)

    This centre is well known by the PCa community for radiation therapy in particular the Brackytherapy. Dr. Sorace may be biased in his recommendations but he is very good and I would recommend him in case your husband decides to get a "look" on RT possibilities.

    You do not have to type-up here the other details of the biopsy. I hope your doctor is an expert on the matter and that he has requested/done the biopsy with references to the “bumpiness” (nodes) he felt on touch. Usually the needles are directed to standardized locations (for the 12 cores) but some may be directed to suspicious areas for checking on extra capsular extensions. The TRUS biopsy allows a view of the prostate live and can guide where to “drill”.

    For your reference, the clinical stages go from T1 to T4 as in many other cancers. You can read details here;
    http://www.psa-rising.com/prostatecancer/staging.htm

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter along the eleven years as a survivor and continuing patient. I have participated in several prostate cancer conferences and symposiums as a patient, and have been one of the panellists in cancer supporting gatherings.

    I like to see you so involved in your husband’s care. My wife was also the one that gave me the comfort I needed at my timing.
    Hopefully this is just another bump on your husband’s journey.

    VGama
  • djs123
    djs123 Member Posts: 102
    Options

    A bump in your Journey
    DJS

    I hope you get a response on Dr. Nicholas Iannotti. I couldn’t get any information on him even at Pubmed. However, I believe that your GP has no “interests” in your case so that he may have chosen Dr. Iannotti from past relations or just by chance. Florida is very wide and you can find many medical centres caring for prostate cancer. A famous researcher medical oncologist specialist in prostate cancer is Dr. Richard Sorace working with the famous radiologist Dr. Michael J. Dattoli at the Dattoli Cancer Center, Sarasota, FL.
    (http://www.dattoli.com/)

    This centre is well known by the PCa community for radiation therapy in particular the Brackytherapy. Dr. Sorace may be biased in his recommendations but he is very good and I would recommend him in case your husband decides to get a "look" on RT possibilities.

    You do not have to type-up here the other details of the biopsy. I hope your doctor is an expert on the matter and that he has requested/done the biopsy with references to the “bumpiness” (nodes) he felt on touch. Usually the needles are directed to standardized locations (for the 12 cores) but some may be directed to suspicious areas for checking on extra capsular extensions. The TRUS biopsy allows a view of the prostate live and can guide where to “drill”.

    For your reference, the clinical stages go from T1 to T4 as in many other cancers. You can read details here;
    http://www.psa-rising.com/prostatecancer/staging.htm

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter along the eleven years as a survivor and continuing patient. I have participated in several prostate cancer conferences and symposiums as a patient, and have been one of the panellists in cancer supporting gatherings.

    I like to see you so involved in your husband’s care. My wife was also the one that gave me the comfort I needed at my timing.
    Hopefully this is just another bump on your husband’s journey.

    VGama

    Next step
    Your information has been so useful. Frankly, my main concern now is securing the proper doctor. Sarasota is on the west coast we are on the east. I am confused as to how to find an expert to handle the radiation therapy and hormones that I suspect will be recommended. His physician has no one to recommend in our area.
    I will explore the Sarasota information you gave me and contact them, maybe they can make a referral.
    You've lived with this for a long time and I commend you for becoming an active participant in your own health care and also for helping those of us that are lost at the start.
    respectfully,
    d
  • caseyh
    caseyh Member Posts: 63
    Options
    Treatment in FL
    I have just read through your posts and the group responses. I agree that you should have a second opinion as to the diagnosis and the biopsy slides. That said, I don't think that either will influence what will turn out to be the most obvious course of action. It really doesn't make a lot of difference treatment-wise if the Gleason score is 8 or 9. As your doctor advised, surgery is probably not the best choice with either score. Datolli was mentioned in a previous post. They will have a doctor call you for a telephone consultation after receiving your records. I am a Datolli patient and can give you some insight into treatment options that are relevant for your situation. If you are interested, please contact me through the CSN email.
  • VascodaGama
    VascodaGama Member Posts: 3,662 Member
    Options
    caseyh said:

    Treatment in FL
    I have just read through your posts and the group responses. I agree that you should have a second opinion as to the diagnosis and the biopsy slides. That said, I don't think that either will influence what will turn out to be the most obvious course of action. It really doesn't make a lot of difference treatment-wise if the Gleason score is 8 or 9. As your doctor advised, surgery is probably not the best choice with either score. Datolli was mentioned in a previous post. They will have a doctor call you for a telephone consultation after receiving your records. I am a Datolli patient and can give you some insight into treatment options that are relevant for your situation. If you are interested, please contact me through the CSN email.

    Caseyh; Are you a Salesman?

    I am very interested in knowing your story as a patient of PCa. I saw your posts being “wiped-out” deleted from another forum because of your obvious promotional sales of “treatments” in Sarasota.

    Hopefully your intent is just as that of our good comaradeship of the members of this forum.

    VG
  • caseyh
    caseyh Member Posts: 63
    Options

    Caseyh; Are you a Salesman?

    I am very interested in knowing your story as a patient of PCa. I saw your posts being “wiped-out” deleted from another forum because of your obvious promotional sales of “treatments” in Sarasota.

    Hopefully your intent is just as that of our good comaradeship of the members of this forum.

    VG

    I'm puzzled
    1. 1. No VascodaGama, I am not a salesman. Like you, I had an RP in 2000. I have undergone a number of treatments including radiation in 2003 & 2011. I joined this forum in 2002. My CaP history is detailed in my profile.
    2. My post was in response to Djs123's indication that her husband would most likely not seek a second opinion unless it was a telephone consultation, and her request for treatment information
    3. A previous post had already mentioned the Datolli Cancer Center to her: “A famous researcher medical oncologist specialist in prostate cancer is Dr. Richard Sorace working with the famous radiologist Dr. Michael J. Dattoli at the Dattoli Cancer Center, Sarasota, FL.(http://www.dattoli.com/) “ How flattering! That was your post!!! I did not introduce the Datolli Cancer Center into the conversation. You did!
    4. I do not consider advising someone that a telephone consultation is available to be promotional. Your post could conceivably be considered by some to be promotional, but not by me. I think it is an entirely reasonable dissemination of important information.
    5. You failed to mention in your post that Datolli offers treatments that are not available anyplace else in the country. One of these treatments is worthy of this patient's investigation. Most patients would not become aware of the availability of such treatments without forums like this. In an effort to avoid any accusations of impropriety, I tried to impart the information to Djs123 using the CSN email system.
    6. I have no financial interest or other reason to promote or be a salesman for the Datolli Cancer other than the positive experience that I had there. Certainly there is no evidence of any promotion in any of my posts. I do wish to give fellow patients information that will aid them in making life changing decisions. The only place in the country where patients can get USPIO scans and subsequent lymph node radiation is at Datolli. I am a veteran of that treatment.
    7. Only the moderator and I know the reason I left the other forum, and it has nothing to do with with any of the posts that I have made on this forum.
    8. The intent of your post puzzles me.
  • VascodaGama
    VascodaGama Member Posts: 3,662 Member
    Options
    caseyh said:

    I'm puzzled
    1. 1. No VascodaGama, I am not a salesman. Like you, I had an RP in 2000. I have undergone a number of treatments including radiation in 2003 & 2011. I joined this forum in 2002. My CaP history is detailed in my profile.
    2. My post was in response to Djs123's indication that her husband would most likely not seek a second opinion unless it was a telephone consultation, and her request for treatment information
    3. A previous post had already mentioned the Datolli Cancer Center to her: “A famous researcher medical oncologist specialist in prostate cancer is Dr. Richard Sorace working with the famous radiologist Dr. Michael J. Dattoli at the Dattoli Cancer Center, Sarasota, FL.(http://www.dattoli.com/) “ How flattering! That was your post!!! I did not introduce the Datolli Cancer Center into the conversation. You did!
    4. I do not consider advising someone that a telephone consultation is available to be promotional. Your post could conceivably be considered by some to be promotional, but not by me. I think it is an entirely reasonable dissemination of important information.
    5. You failed to mention in your post that Datolli offers treatments that are not available anyplace else in the country. One of these treatments is worthy of this patient's investigation. Most patients would not become aware of the availability of such treatments without forums like this. In an effort to avoid any accusations of impropriety, I tried to impart the information to Djs123 using the CSN email system.
    6. I have no financial interest or other reason to promote or be a salesman for the Datolli Cancer other than the positive experience that I had there. Certainly there is no evidence of any promotion in any of my posts. I do wish to give fellow patients information that will aid them in making life changing decisions. The only place in the country where patients can get USPIO scans and subsequent lymph node radiation is at Datolli. I am a veteran of that treatment.
    7. Only the moderator and I know the reason I left the other forum, and it has nothing to do with with any of the posts that I have made on this forum.
    8. The intent of your post puzzles me.

    Caseyh; I am sorry for offending you
    Caseyh

    I apologize for my above inquire post and I am sorry for the comments if they have offended you.

    I regard this type of cancer forums very important to the ones that just like us are confronted with the same problem and it irritates me when some “scrooges” try taking advantage of the prejudice of others for sales purposes.

    I can see that I have mistaken your comments, maybe because of seeing your post wiped out from another forum.

    May I ask you to be more active in this forum, helping us with your experiences along your twelve years as a survivor, particularly in regards to your experience with the newest USPIO MRI test? Can you “enlighten” us in the successes and perils of your case?

    Respectfully.

    VascodaGama