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Newly diagnosed prostate cancer

I was just recently diagnosed with prostate cancer. My biopsy revealled 1 4+4 =8 with 10% involved, 2 4+3=7 with 5-10% involved, 4 3+4= 7 with 20-50% involved, 1 3+3=6 with 5% involved and 4 BPH 0 cancer. My uroligist has me graded at a gleason score of 8 with PSA at 11.9.

I am scheduled for bone scan this week and pelvic CT next week. She says I don't qualify for brachytherapy because gleason score is 8. Because I am 63, she says surgery is probably not advised. I am also type 2 diabetic and am also being treated for high blood pressure. This was the first time I ever had PSA test and although I have seen my primary doctor for almost 30 years, he never did the test nor a DRE and natually I sure didn't bring it up. I know I should have but I didn't. Any comments would be appreciated. I am a nervous wreck and having difficulty focusing and will be going back to work tomorrow. I am a supervisor in a hospital and I NEED to be able to focus. Thanking you in advance.

Dave

Comments

  • Old Salt
    Old Salt Member Posts: 834 **
    edited August 16 #2
    You need better advice!

    The data that you presented indicate that several therapies are possible. You will need to educate yourself and consult with different specialists. THe advice from your urologist seems off (to say it nicely). 

    Without knowing the details, I will state that you might qualify for brachy. There are two kinds of brachytherapy and either one can be combined with another form of radiation for a 'double punch'. Perhaps hormone therapy needs to be added (triple therapy). 

    I strongly suggest you find a competent radiation oncologist for guidance. Preferably one at an NCI Designated Cancer Center. 

    NCI-Designated Cancer Centers - National Cancer Institute

     

    My statistics were a bit worse than yours (PSA=11.9; cancer confined to the prostate, but many Gleason 9 foci). I enrolled in a clinical study that combined hormone therapy (Androgen Deprivation Therapy) + SBRT (Stereotactic Body Radiation Therapy) + EBRT (External Beam Radiation Therapy). Treatment was eight years ago and so far, so good (knock on wood!).

  • davedavalan
    davedavalan Member Posts: 8
    edited August 16 #3
    Old Salt said:

    You need better advice!

    The data that you presented indicate that several therapies are possible. You will need to educate yourself and consult with different specialists. THe advice from your urologist seems off (to say it nicely). 

    Without knowing the details, I will state that you might qualify for brachy. There are two kinds of brachytherapy and either one can be combined with another form of radiation for a 'double punch'. Perhaps hormone therapy needs to be added (triple therapy). 

    I strongly suggest you find a competent radiation oncologist for guidance. Preferably one at an NCI Designated Cancer Center. 

    NCI-Designated Cancer Centers - National Cancer Institute

     

    My statistics were a bit worse than yours (PSA=11.9; cancer confined to the prostate, but many Gleason 9 foci). I enrolled in a clinical study that combined hormone therapy (Androgen Deprivation Therapy) + SBRT (Stereotactic Body Radiation Therapy) + EBRT (External Beam Radiation Therapy). Treatment was eight years ago and so far, so good (knock on wood!).

    Thanks

    Thank you for your advice. I will update after the bone scan this Wednesday.

  • eonore
    eonore Member Posts: 111
    edited August 16 #4
    Surgery

    Do not automatically exclude surgery because of your age.  While I am slightly biased in favor of some form of radiation, every case is different.  I myself was sixty five and obese when I had a very difficult prostate removal (prostate was 240 grams and surgery took ten hours), and I had a very decent recovery.  Talk to both an excellent surgeon and radiation oncologist, do your research, and pick what best fits you.

    Eric

  • Clevelandguy
    Clevelandguy Member Posts: 711
    edited August 16 #5
    Locate the bandit

    Hi,

    If your scans show that your cancer has spread past your Prostate then surgery is probably not the best option to put you into remission. 
    Where your cancer is located will dictate the type of treatment for your unique case.  Study the side effects of the various treatments and like Old Salt said find the best doctors and facilities for your treatment.  A second opinion might not be a bad idea either.  You might want to look into a PET scan with radioactive tracer to help pinpoint where you cancer is hiding.

    Dave 3+4

  • davedavalan
    davedavalan Member Posts: 8
    eonore said:

    Surgery

    Do not automatically exclude surgery because of your age.  While I am slightly biased in favor of some form of radiation, every case is different.  I myself was sixty five and obese when I had a very difficult prostate removal (prostate was 240 grams and surgery took ten hours), and I had a very decent recovery.  Talk to both an excellent surgeon and radiation oncologist, do your research, and pick what best fits you.

    Eric

    Thank you Eric for your

    Thank you Eric for your response. I appreciate it.

  • davedavalan
    davedavalan Member Posts: 8

    Locate the bandit

    Hi,

    If your scans show that your cancer has spread past your Prostate then surgery is probably not the best option to put you into remission. 
    Where your cancer is located will dictate the type of treatment for your unique case.  Study the side effects of the various treatments and like Old Salt said find the best doctors and facilities for your treatment.  A second opinion might not be a bad idea either.  You might want to look into a PET scan with radioactive tracer to help pinpoint where you cancer is hiding.

    Dave 3+4

    Thanks for you response. I

    Thanks for you response. I appreciate it.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,688
    edited August 18 #8
    Assessment

    Dave, I disagree with nothing any of the guys above have written.   With high gleasons from a variety of cores, and an overall score of 8, I think most Best Practices doctors in the US would steer toward RT (radiation therapies) as a curative hope.   In the US, age per se is not usually an argument against PCa surgery for men under 70 years, IF they have normal heart and lung health.  But diabetes would likely skew this, I just have not read a lot about diabetics and RP specifically.

    Gleason 8 usually suggest capsular escape, but this is NOT always the case; doctors often proceed cautiously, treating as if spread has occured.   IMRT/IGRT is the radiation therapy used in such cases, but SBRT is also used by some radiation oncologists in such circumstances.   You definitely need to consult with a radiation oncologist before deciding on a path.

  • Update: bone and CT scan

    The CT scan revealled: Bladder has diffused wall thickening. Small bilateral hydroceles on reproductive organs. Prostate not well assessed by CT and there are small califications. Vessels atherogclerosis. Impression: No evidence of metastatic. The bone scan revealled no skeletal metastases idenified. Incidental findings: urinary contamination of genitalia. Mild degenerative of shoulders, elbows and knees and kidneys are of normal size.

    I gather that most of these tests are of good results, but I've searched an am unable to figure out what the urinary contamination might be and wonderng if these scan results indicate the prostate cancer is localized and would'nt brachy be a consideration? I know radiation therapy should be on the table for discussion. I don't see my uroligist until a week from Friday for treatment plan. This waiting is agonizing. I really do appreciate all the feedback on this forum. It is a wonderful tool for all of us.

    ??

    Never heard the term 'urinary contamination,' but I suppose it likely means some form of seepage into the scrotum or points elsewhere.  Or may mean excessive urine is in the seminal fluid.  These are guesses

     

  • davedavalan
    davedavalan Member Posts: 8
    Update: bone and CT scan

    The CT scan revealled: Bladder has diffused wall thickening. Small bilateral hydroceles on reproductive organs. Prostate not well assessed by CT and there are small califications. Vessels atherogclerosis. Impression: No evidence of metastatic. The bone scan revealled no skeletal metastases idenified. Incidental findings: urinary contamination of genitalia. Mild degenerative of shoulders, elbows and knees and kidneys are of normal size.

    I gather that most of these tests are of good results, but I've searched an am unable to figure out what the urinary contamination might be and wonderng if these scan results indicate the prostate cancer is localized and would'nt brachy be a consideration? I know radiation therapy should be on the table for discussion. I don't see my uroligist until a week from Friday for treatment plan. This waiting is agonizing. I really do appreciate all the feedback on this forum. It is a wonderful tool for all of us.

  • CMO2021
    CMO2021 Member Posts: 51
    edited August 20 #11
    Urinary Contamination

    I'll throw my two cents in.  Urinary contamination may mean you dribbled a little bit with urine drops on the scrotum which then show up on the scan.  I had a note in my bone scan that said " surface contamination due to excreted urine". So that maybe what they were referring to.

     

    Best regards,

    CMO

  • Bill91101
    Bill91101 Member Posts: 79
    CMO2021 said:

    Urinary Contamination

    I'll throw my two cents in.  Urinary contamination may mean you dribbled a little bit with urine drops on the scrotum which then show up on the scan.  I had a note in my bone scan that said " surface contamination due to excreted urine". So that maybe what they were referring to.

     

    Best regards,

    CMO

    CMO,
    CMO,
    I think you hit the nail on the head. The technician performing my last bone scan mentioned having urine (radioactive tracer in it) on oneself could influence the interpretation of the scan results.
    I tried my best.
    Bill
  • davedavalan
    davedavalan Member Posts: 8
    edited August 20 #13
    CMO2021 said:

    Urinary Contamination

    I'll throw my two cents in.  Urinary contamination may mean you dribbled a little bit with urine drops on the scrotum which then show up on the scan.  I had a note in my bone scan that said " surface contamination due to excreted urine". So that maybe what they were referring to.

     

    Best regards,

    CMO

    Thanks for your input. I

    Thanks for your input. I kinda think that may be the case as I have read some that does mention external urine. Again, thanks and I await the treatment plan next Friday.

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    Look for second opinions before deciding

    Dave,

    According to the info you describe above, the term used by the radiologist as “urinary contamination” is to justify the inefficiency (false negative) of the CT in identifying tumors, in spite of your voluminous cancer case of 8 positive cores. I strongly believe in the possibility of you having micrometastases and tumors of small sizes (less than 7mm) that are out of reach of the common CT capabilities. In your shoes I would request a MRI,  preferably a 3Tesla MRI, that is more reliable in smaller tumors cases. The MRI will help in justifying a better clinical stage from where to chose a therapy. 

    Gleason score 8 cases with voluminous biopsies are usually directed to RT therapies. Most of these cases are found to have extraprostatic extensions (EPE) therefore not contained. The negative BS (bone scan) can lead to think that you have a localized case. To such extent, your preference with Brachytherapy would require a combination of brachy plus EBRT. Probably the hypofractionated SBRT + EBRT described by Old Salt above could be a better choice because of the micrometastases possibilities.

    The bady in your case is the Gs8 diagnosis. The goody is the negative BS. Surely you need to recheck the involvement of lymph nodes and seminal vesicles to have a clue of the field of attack for the radiation.

    I think that you should look for a second opinion on the issue together with your doctor’s recommendations of Friday. Try visiting a specialist at a top institution. Your family should be involved in the decision process. 

    You doing well in investigating further.

    Best wishes and luck in your journey. 

    VGama

     

  • davedavalan
    davedavalan Member Posts: 8
    edited August 26 #15
    My uroligist called yesterday

    My uroligist called yesterday and told me the bone scan and CT scan were negative and that it was good news. She also said surgery is back on the table and we would discuss at my appointment tomorrow....but as my luck would have it, my son tested positive for covid today and he lives with me. My daughter and her husband and 4 young boys possibly have it as well because they all went down to Florida a couple weeks ago. I know I have to disclose to my uroligist about this since they ask upon arrival if you been around anyone with covid. Although I have been vaccinated, I'm sure they will want to reschedule. That means, more waiting! This is torture!

  • My uroligist called yesterday

    My uroligist called yesterday and told me the bone scan and CT scan were negative and that it was good news. She also said surgery is back on the table and we would discuss at my appointment tomorrow....but as my luck would have it, my son tested positive for covid today and he lives with me. My daughter and her husband and 4 young boys possibly have it as well because they all went down to Florida a couple weeks ago. I know I have to disclose to my uroligist about this since they ask upon arrival if you been around anyone with covid. Although I have been vaccinated, I'm sure they will want to reschedule. That means, more waiting! This is torture!

    Tom Petty

    dave,   Tom Petty, also from Florida, noted in a hit that 'the waiting is the hardest part.'  I agree.    Interesting that a decision was made for surgery.  The good thing regarding surgery is that, upon removal, and analysis in a patholigy lab, the doctors will know precisely what has been going on with the disease, and will have strong evidence regarding whether metastasis has occured.   If it has, RT will be started after surgical recovery.

  • davedavalan
    davedavalan Member Posts: 8
    Robotic Prostatetomy

    Went to see uroligist today. She is now saying gleason score of 7 and 8. I am scheduled to see surgeon up in St. Louis on 9/16 which is about 30 miles east of where I live.

    He works for Mercy hospital in St. louis, and I work for Mercy hospital in my hometown. I have read some very good positive reviews about thi doctor, so I am pretty convinced I don't need a 2nd opinion. Another interesting fact is Mercy is in the process of opening there own proton facilty next summer.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited August 28 #18

    Robotic Prostatetomy

    Went to see uroligist today. She is now saying gleason score of 7 and 8. I am scheduled to see surgeon up in St. Louis on 9/16 which is about 30 miles east of where I live.

    He works for Mercy hospital in St. louis, and I work for Mercy hospital in my hometown. I have read some very good positive reviews about thi doctor, so I am pretty convinced I don't need a 2nd opinion. Another interesting fact is Mercy is in the process of opening there own proton facilty next summer.

    .

    Vasco gave you good advice. 

    A CT scan does not provide the definition that an MRI with a Tesla 3.0 will. Additionally there are now PET PSMA's that provide better definition than bone scans, whether it is a T99 or even the better F18 bone scan. With the large amount of aggressive cancer indicated in your pathology, you want tests that provide best definition so you can best make a treatment  choice. 
    Please be aware that surgery is a localized treatment. If there is extra capsular extension, an additional treatment such as radiation will be needed. The side effects of each treatment is cumulative. 

    Best wishes in determining where you stand 

    H

  • Josephg
    Josephg Member Posts: 309 **
    2nd Opinion and MRI/PET Scan

    If your Urologist states that you have elements of Gleason 7 and 8 cancer, in my layperson opinion, you need to SERIOUSLY consider getting (1) a second opinion (regardless of the opinion/rating of the referred surgeon), and (2) an MRI or PET scan, and (3) a Medical Oncologist.  These Gleason numbers are quite serious, and before starting any kind of treatment plan, you would be best served to gather as much detailed information about your specific cancer and its location, and this additional detail can only be obtained by an MRI or PET scan.  For example, if the cancer is confirmed to have spread beyond the prostate through an MRI or PET scan, and Gleason scores of 7 and 8 have a very significant probability of cancer spread beyond the prostate, then surgery may not necessarily the best treatment plan option.

    I strongly suggest that you engage a Medical Oncologist, and let that person be the leader of your treatment team, going forward.  A Medical Oncologist has no specific preferences for surgery or radiation, and they will advise you on the best treatment plan for your specific situation.  And, if hormone therapy is recommended as a concurrent treatment (in addition to surgery or radiation), which is not uncommon for Gleason 7 and 8 cancer, the Medical Oncologist is the expert for prescribing and monitoring hormone therapy treatment.  My Medical Oncologist has remained the leader of my treatment team for about a decade of my prostate cancer (PCa) journey, which has included surgery, radiation, and hormone therapies.  The surgeons and Radiation Oncologists have joined and departed from my treatment team, as needed, by the recommendations and referrals from my Medical Oncologist.

    I wish you the best of outcomes on your PCa journey.