Newly Diagnosed

DanTW
DanTW Member Posts: 5
Hi All,

I've been reading since last night and find all of your input very informative. Thanks.

I was just diagnosed this past week, and My wife and I are just trying to digest things and begin talking about a path forward.

As a result of my GP finding a bump, I had a needle biopsy with the following results:

Right base, 2/2 cores, 5% involved, Gleason 3+3=6

Right mid, 1/2 cores, 35%, Gleason 3+4=7

Right apex and left base benign

Left mid, 3/3 cores, 40%, Gleason 3+4=7

Left Apex, 1/2 cores, 40%, Gleason 3+4=7

My doc says it's Stage 2b.

I'm 56 and in good health. PSA about 1-2.

I'm with Kaiser in No. Cal. I'll be seeing my urologist on this Wednesday.

Any advice as to what questions I should ask?

Thanks...

Comments

  • rch
    rch Member Posts: 79
    New Dx T2b with PSA 1-2 !!
    DanTW
    Did you say the PSAs were between 1-2 and the bx was prompted by a prostatic nodule? It looks like both lobes are involved. Please check with your Urologist on the actual Clinical stage. Also, if you wouldn't mind, please share with us if you are at Kaiser facility in the Bay Area.
    .
    PS-I'm also with Kaiser in the Bay Area
  • DanTW
    DanTW Member Posts: 5
    rch said:

    New Dx T2b with PSA 1-2 !!
    DanTW
    Did you say the PSAs were between 1-2 and the bx was prompted by a prostatic nodule? It looks like both lobes are involved. Please check with your Urologist on the actual Clinical stage. Also, if you wouldn't mind, please share with us if you are at Kaiser facility in the Bay Area.
    .
    PS-I'm also with Kaiser in the Bay Area

    Hi RCH,

    Yes, my PSAa over the past few years were between 1.2 and 1.9. And yes, a prostatic nodule prompted the biopsy (assume that's what you meant by bx).

    I'm in the Sacrtamento area, and my urologist is in Roseville. He told me that his interpretation was stage 2b. Will he have more specific info than that?

    Thanks...
  • Kongo
    Kongo Member Posts: 1,166 Member
    Stage T2B
    Dan, welcome to the forum and I am so sorry that you and your wife are now finding yourself dealing with this diagnosis.

    The definition of T2 cancers is:

    T2: the tumor can be felt (palpated) on examination, but has not spread outside the prostate
    T2a: the tumor is in half or less than half of one of the prostate gland's two lobes
    T2b: the tumor is in more than half of one lobe, but not both
    T2c: the tumor is in both lobes

    Since you described your pathology report as having cancer in your right base, right mid, left mid, and left apex it would seem that you have cancer in both the right and left lobes which means your stage should have been set at T2c not T2b. It really doesn't make that much difference in your treatment choices...what it is saying is that your prostate cancer is distributed across the entire prostate gland and can be felt by the finger in a digital exam.

    What is disconcerting in your post is your PSA levels. Typically with a man your age and a T2 stage the PSA levels are much higher. Not that there's that much specificity for cancer from a PSA test. Gleason 7 cancers, and yours were of the less dangerous 3+4=7 rather than the more aggressive 4+3=7 variety would typically be expected to generate a higher level of PSA and I would expect that you would be showing PSA values in the range of 8 - 15. The reason this is worrisome is that more advanced and less differentiated cancers produce less PSA yet your overall pathology doesn't give any indication that you're harboring a more advanced cancer.

    So, the first thing I would ask your urologist to explain is what his opinion is about why your PSA values are so low yet you have a biopsy report that shows only a 3+4 Gleason reading on both sides of your prostate.

    I have never been a member of Kaiser but have read of many men with prostate cancer who have been presented with only limited choices pertaining to prostate cancer treatments. Of course, that's how HMOs operate. I would carefully examine your policy coverage before visiting the urologist.

    In California urologists are required to give you an unbiased overview of the treatment options for prostate cancer. These include surgical removal of the prostate, brachytherapy (radioactive seeds planted internal to the prostate), or external radiation. Within these broad treatment subsets are very many variations such as robotic or open surgery, different types of brachytherapy seed implants using different radioactive isotopes, and a broad array of external radiation techniques that include proton therapy, IGRT, IMRT, SBRT, tomography, and on and on. There are also treatments that involve high frequency ultrasound (not approved in the USA), or freezing the cancer. Many of these are probably not covered under your HMO policy.

    One thing to keep in mind is that surgery and radiation (including brachytherapy) all have almost the same long term survival rates. They do not, however, have the same level of side effects. Be sure to grill your doctor on the impact and likelihood of unwanted side effects for each treatment he reviewed with you. Common side effects for surgery include incontinence, ED, penile atrophy, and normal hazards associated with a major surgery. Radiation has much less incidence of incontinence and ED initially, but depending upon the type of radiation you elect there can be longer term effects on both of these areas. In short, every treatment has a downside.

    You will also want your doctor to talk about hormone therapy and what it can do in your situation and how long you should take it and what those side effects can be.

    I would also ask him his plan to rule out metastasis to the bone marrow, seminal vesicles, and lymph nodes. There are tests that can be conducted in each of these areas. If he determines that the cancer has indeed spread beyond then you will want to know his reasoning for primary treatments to the prostate since radiating the prostate or removing it are not going to stop the growth of prostate cancer in other parts of your body.

    I would take along a tape recorder and have both you and your wife attend the session.

    Best of luck to you.

    K
  • rch
    rch Member Posts: 79
    DanTW said:

    Hi RCH,

    Yes, my PSAa over the past few years were between 1.2 and 1.9. And yes, a prostatic nodule prompted the biopsy (assume that's what you meant by bx).

    I'm in the Sacrtamento area, and my urologist is in Roseville. He told me that his interpretation was stage 2b. Will he have more specific info than that?

    Thanks...

    New Diagnosis
    Hi DanTW
    When you see your Urologist on Wednesday,please stop by the Path dept at Roseville and get a complete copy of the Path report. You may have to sign a 'disclosure statement' to obtain this. The report should include all the relevant info on the biopsy as well as whether a second or third opinion was obtained before signing out. Kaiser usually gets 2nd or third opinion on it's own from another Kaiser facility or UCSF/Stanford before signing out.If your Urologist called you within a week after Bx , then most likely it was read internally by the Roseville/Sacramento Pathologist. In that case, it's not a bad idea to get a second opinion from a reputable Medical Center. The Path Dept should give you the slides for an outside opinion. Given your low PSA ,it's possible that it is a poorly differentiated variant as Kongo described,and you would want that to be read by another Pathologist to be sure.That might impact your treament plan. Your Urologist will most likely order a CT with contrast and a bone scan in the interim.
  • Kongo
    Kongo Member Posts: 1,166 Member
    rch said:

    New Diagnosis
    Hi DanTW
    When you see your Urologist on Wednesday,please stop by the Path dept at Roseville and get a complete copy of the Path report. You may have to sign a 'disclosure statement' to obtain this. The report should include all the relevant info on the biopsy as well as whether a second or third opinion was obtained before signing out. Kaiser usually gets 2nd or third opinion on it's own from another Kaiser facility or UCSF/Stanford before signing out.If your Urologist called you within a week after Bx , then most likely it was read internally by the Roseville/Sacramento Pathologist. In that case, it's not a bad idea to get a second opinion from a reputable Medical Center. The Path Dept should give you the slides for an outside opinion. Given your low PSA ,it's possible that it is a poorly differentiated variant as Kongo described,and you would want that to be read by another Pathologist to be sure.That might impact your treament plan. Your Urologist will most likely order a CT with contrast and a bone scan in the interim.

    Smart Move
    Very good advice, rch.
  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Kongo said:

    Stage T2B
    Dan, welcome to the forum and I am so sorry that you and your wife are now finding yourself dealing with this diagnosis.

    The definition of T2 cancers is:

    T2: the tumor can be felt (palpated) on examination, but has not spread outside the prostate
    T2a: the tumor is in half or less than half of one of the prostate gland's two lobes
    T2b: the tumor is in more than half of one lobe, but not both
    T2c: the tumor is in both lobes

    Since you described your pathology report as having cancer in your right base, right mid, left mid, and left apex it would seem that you have cancer in both the right and left lobes which means your stage should have been set at T2c not T2b. It really doesn't make that much difference in your treatment choices...what it is saying is that your prostate cancer is distributed across the entire prostate gland and can be felt by the finger in a digital exam.

    What is disconcerting in your post is your PSA levels. Typically with a man your age and a T2 stage the PSA levels are much higher. Not that there's that much specificity for cancer from a PSA test. Gleason 7 cancers, and yours were of the less dangerous 3+4=7 rather than the more aggressive 4+3=7 variety would typically be expected to generate a higher level of PSA and I would expect that you would be showing PSA values in the range of 8 - 15. The reason this is worrisome is that more advanced and less differentiated cancers produce less PSA yet your overall pathology doesn't give any indication that you're harboring a more advanced cancer.

    So, the first thing I would ask your urologist to explain is what his opinion is about why your PSA values are so low yet you have a biopsy report that shows only a 3+4 Gleason reading on both sides of your prostate.

    I have never been a member of Kaiser but have read of many men with prostate cancer who have been presented with only limited choices pertaining to prostate cancer treatments. Of course, that's how HMOs operate. I would carefully examine your policy coverage before visiting the urologist.

    In California urologists are required to give you an unbiased overview of the treatment options for prostate cancer. These include surgical removal of the prostate, brachytherapy (radioactive seeds planted internal to the prostate), or external radiation. Within these broad treatment subsets are very many variations such as robotic or open surgery, different types of brachytherapy seed implants using different radioactive isotopes, and a broad array of external radiation techniques that include proton therapy, IGRT, IMRT, SBRT, tomography, and on and on. There are also treatments that involve high frequency ultrasound (not approved in the USA), or freezing the cancer. Many of these are probably not covered under your HMO policy.

    One thing to keep in mind is that surgery and radiation (including brachytherapy) all have almost the same long term survival rates. They do not, however, have the same level of side effects. Be sure to grill your doctor on the impact and likelihood of unwanted side effects for each treatment he reviewed with you. Common side effects for surgery include incontinence, ED, penile atrophy, and normal hazards associated with a major surgery. Radiation has much less incidence of incontinence and ED initially, but depending upon the type of radiation you elect there can be longer term effects on both of these areas. In short, every treatment has a downside.

    You will also want your doctor to talk about hormone therapy and what it can do in your situation and how long you should take it and what those side effects can be.

    I would also ask him his plan to rule out metastasis to the bone marrow, seminal vesicles, and lymph nodes. There are tests that can be conducted in each of these areas. If he determines that the cancer has indeed spread beyond then you will want to know his reasoning for primary treatments to the prostate since radiating the prostate or removing it are not going to stop the growth of prostate cancer in other parts of your body.

    I would take along a tape recorder and have both you and your wife attend the session.

    Best of luck to you.

    K

    Second Opinion on Path-Report
    DanTW

    You got above good comments in which you can draw your questionnaire. In my opinion I would add a question regarding the type of cancer.
    I say this because of your diagnosis and your confirmation above of “...my PSAa over the past few years were between 1.2 and 1.9. And yes, a prostatic nodule prompted the biopsy...”
    The fact is that your PSA is low for the status in your path-report. Kongo points out well about the uncommon status and one should have in mind that some type of cancers are known to be more aggressive than the usual adenocarcinoma and still produce little or none PSA serum (refer to 24 varieties of PCa).
    You can see some reference in this link;
    http://csn.cancer.org/node/218861#comment-1059897

    Small cell carcinoma of the prostate is rare, doesn’t produce PSA and forms close to the shell of the prostate, together with other adenocarcinoma. The presence of positive DRE (cancerous nodule) could be indicative of extensions. If extra-capsular extension exists, metastases with low PSA levels could be related to SCC.
    Hunter has refered to it in your other thread. It may be opportune to get a second opinion on the slices from a reliable laboratory.

    Wishing you get a definite conclusion on your diagnosis.

    Good luck.
    VGama
  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    Check Your Other Thread
    I was a Kaiser PCa patient too and opted out because all you're offered at Kasier NorCal is surgery or brachytherapy.

    See my detailed response in your other thread here: http://csn.cancer.org/node/231988.