What lies ahead?

24

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member
    Clinical Stage based on reliable "pictures"

    CC52

    I think that you are “handling” your PCa case properly. No rush but active in finding the right diagnosis to judge intervention.

    You got a classification (Gs7- Intermediate risk) confirmed and now you should do the same in regards to the clinical stage. Though you got a negative CT and bone scan, I think that you should try getting a second “picture” with higher resolution sophistication equipment and techniques (C11/F18 PET or mMRI) for a more accurate second opinion on the clinical stage. Locating the bandit is the goal.

    With the last report from JH and their confirmation on PNI (perineural invasion present), one should focus on the extent of the “invasion”. In other words, it is crucial to certify that cancer is still totally contained within the gland. The conclusion on these findings will tip the best choice to follow and the most “suitable” treatment, if any.

    Typically cancer spreads through the seminal vesicles and nerve bundles. These are known routes for extracapsular extensions of the tumour from where it may travel to close lymph nodes and from there to bone and organs. In fact these findings regulate the stage and accurately can provide a clue if the disease is curable, treatable or systemic.

    At this moment you got high PSA of 6.1 in low voluminous cancer (3 out of 18 cores), Gleason score of 7 composed of 40% of poorly differentiated type of cells (G-pattern of 4), with a PSADT of over 24 months since 2003, which is considered good in terms of indolence. Your case is for intermediate risk for metastases that would need to be treated if existent.
    Treating or following a Watchful and Waiting approach should be your decision. The positive PNI is not a good prognosis to aspire a simple Active Surveillance protocol. You need better knowledge of the aggressivity of the tumour and its location based on a GOOD picture (contained, localized or far) you could then make a better decision on what to do next.

    Here are some materials for you to read;
    http://www.drcatalona.com/quest/quest_spring07_4.asp
    http://onlinelibrary.wiley.com/doi/10.1002/cncr.24396/pdf
    http://en.wikipedia.org/wiki/Gleason_Grading_System
    http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-staging
    http://www.prostate.org.au/articleLive/pages/Staging-and-Grading.html

    Best,

    VG

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    Here is my post

    Since my last post in February and feeling I just needed some time away, I suppose I’ve got some updating to do.

    In March, I went to Johns Hopkins for the Multidisciplinary Consultation. For those that aren’t aware, it is a full day comprehensive look at your condition. It includes a full review of your slides by their pathologists, and that was an important consideration for me. This was my second visit to a highly regarded hospital (following a trip to Georgetown in Dec.) seeking a second opinion. Overall, the program is well run and informative, but it did not give me anything new to consider. Perhaps I should have expected that going in.

    So here are a couple of things I would welcome comments on:

    1) If the PSA result means very little to a DX of PCa, should anything be made of my 6.1 PSA level last June followed by the unchanged 6.1 prior to my JHU visit in March? I have my annual blood work coming up soon, so I will be interested to see what the level is then.

    2) Here are the reviews of my biopsies from both Bostwick Labs and JHU, with both in agreement of 3 of 18 cores positive as found on initial review:

    Right Mid Lateral - BL 3+4=7, 20% involvement (G4 in 40% of the cancer)

    JHU 3+3=6, 20% involvement

    Left Apex Mid - BL 3+3=6, 5% involvement

    JHU 3+4=7, 5% involvement

    Left Apex Medial - BL 3+4=7, 20% involvement (G4 in 10% of the cancer)

    JHU 3+4+7, 30% involvement

    Now with this, the initial review showed evidence of PNI in the Left Apex Medial, but Bostwick did not, and upon asking for more slides/info, JHU revised their finding to confirm the PNI possibility. What should I make of this?

    My thinking at this point is to wait until the fall, and go with the team at GUH to explore additional options (as suggested by Vasco and hopeful) of a gene test and multiparametric MRI. I have not been fully convinced to date that I need treatment, although I am mentally preparing for the eventuality. It still seems to me that the rush to treat is not always in the best interest of the patient, and while there is no disputing I have cancer, so do many that don’t know it and will live full lives and die from something else.

    I welcome your comments and opinions.

    CC

     

     

     

     

     

     

    A layman's opinion

    I wonder what the experts at the world class medical institutions that you visited recommended?

    My laymans opinion is that a man with intermediate disease as you have , and is 61 is not a candidate for Active Surveillance. I also believe that it would be beneficial for you to have the multiparametric MRI for further diagnosis, to see if the test finds extracapsular extenstion or not. This MRI will be important to choose among the the active treatment that are available. I would not wait to have this test. I would seek treatment sooner rather than later; however you need to make an informed decision that you are comfortable with.

    I do not believe that the gene test is necessary for you to ask for , since the results of your biopsy indicate that active treatment is necessary at this point. 

    Wish you best results

     

  • Beau2
    Beau2 Member Posts: 261
    CC52 said:

    Here is my post

    Since my last post in February and feeling I just needed some time away, I suppose I’ve got some updating to do.

    In March, I went to Johns Hopkins for the Multidisciplinary Consultation. For those that aren’t aware, it is a full day comprehensive look at your condition. It includes a full review of your slides by their pathologists, and that was an important consideration for me. This was my second visit to a highly regarded hospital (following a trip to Georgetown in Dec.) seeking a second opinion. Overall, the program is well run and informative, but it did not give me anything new to consider. Perhaps I should have expected that going in.

    So here are a couple of things I would welcome comments on:

    1) If the PSA result means very little to a DX of PCa, should anything be made of my 6.1 PSA level last June followed by the unchanged 6.1 prior to my JHU visit in March? I have my annual blood work coming up soon, so I will be interested to see what the level is then.

    2) Here are the reviews of my biopsies from both Bostwick Labs and JHU, with both in agreement of 3 of 18 cores positive as found on initial review:

    Right Mid Lateral - BL 3+4=7, 20% involvement (G4 in 40% of the cancer)

    JHU 3+3=6, 20% involvement

    Left Apex Mid - BL 3+3=6, 5% involvement

    JHU 3+4=7, 5% involvement

    Left Apex Medial - BL 3+4=7, 20% involvement (G4 in 10% of the cancer)

    JHU 3+4+7, 30% involvement

    Now with this, the initial review showed evidence of PNI in the Left Apex Medial, but Bostwick did not, and upon asking for more slides/info, JHU revised their finding to confirm the PNI possibility. What should I make of this?

    My thinking at this point is to wait until the fall, and go with the team at GUH to explore additional options (as suggested by Vasco and hopeful) of a gene test and multiparametric MRI. I have not been fully convinced to date that I need treatment, although I am mentally preparing for the eventuality. It still seems to me that the rush to treat is not always in the best interest of the patient, and while there is no disputing I have cancer, so do many that don’t know it and will live full lives and die from something else.

    I welcome your comments and opinions.

    CC

     

     

     

     

     

     

    A couple of answers

    Hey CC52,

    in answer to your two questions:

    1.) I would not use the PSA increase/decrease as a good indicator of the aggressiveness of the PCa. I've known guys who had a low PSA (ie. in the 2 to 5 range), but had a very aggresive cancer (G8 and G9).

    2.) I think I understand your concern about PNI; however, based on tne little bit I know of your case and PCa in general these results indicate you have a significant amount of fairly aggressive cancer (G7) and you could have undetected (not found by the biopsy) higher grade PCa. On other forums, I have heard from guys who had G7 and did well with AS; however, I have also heard from G7s whose cancer progressed rather rapidly. In my opinion, with a G7 you just don't know. You should do your testing (as suggested by Hopeful and VG). I would suggest that if you decide to do AS you keep a "very" watchful eye on your PCa ... this could include annual biopsies that would track changes in your PNI.

    Best wishes and good luck.

  • CC52
    CC52 Member Posts: 103 Member

    A layman's opinion

    I wonder what the experts at the world class medical institutions that you visited recommended?

    My laymans opinion is that a man with intermediate disease as you have , and is 61 is not a candidate for Active Surveillance. I also believe that it would be beneficial for you to have the multiparametric MRI for further diagnosis, to see if the test finds extracapsular extenstion or not. This MRI will be important to choose among the the active treatment that are available. I would not wait to have this test. I would seek treatment sooner rather than later; however you need to make an informed decision that you are comfortable with.

    I do not believe that the gene test is necessary for you to ask for , since the results of your biopsy indicate that active treatment is necessary at this point. 

    Wish you best results

     

    Experts' recommendations

    At GUH, it was a much more relaxed view of my Dx and I was told no real rush for treatment. But remember, Bostwick's review did not show PNI. If that had been found, perhaps that would change the Dr's opinion. I will discuss this when I see the Dr again, along with the MRI.

    JHU wanted to treat, and discussed those options.

  • CC52
    CC52 Member Posts: 103 Member
    What lies ahead

    My thanks for your advice VG, Beau and Hopeful. Thanks too, VG for sharing the links...very helpful.

    In my earlier post, I may have implied that I may not do anything and may be considering AS. That is not the case, and the PNI factor is key in my decision to move sooner rather waiting.

    Hopeful, I greatly appreciate your perspective on PNI.

  • CC52
    CC52 Member Posts: 103 Member
    Georgetown tomorrow

    Recap: 

    PSA  July 2013, 6.1.

    Biopsy 3 of 18 positive Oct 2013. Gs 3+3=6

    Georgetown 2nd opinion Dec 2013, Gs upgraded to 3+4=7

    PSA March 2014 prior to visit @ Johns Hopkins, 6.1 Gs 3+4=7

    PSA July 2014, 8.0

    Concern about the significant PSA increase over 4 months has me going back to Georgetown again tomorrow. Will meet with Dr Collins and see what he recommends as the next step. I've done my homework and I'm mentally ready to proceed, so if treatment is advised, I will go with SBRT (Cynerknife).

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    Georgetown tomorrow

    Recap: 

    PSA  July 2013, 6.1.

    Biopsy 3 of 18 positive Oct 2013. Gs 3+3=6

    Georgetown 2nd opinion Dec 2013, Gs upgraded to 3+4=7

    PSA March 2014 prior to visit @ Johns Hopkins, 6.1 Gs 3+4=7

    PSA July 2014, 8.0

    Concern about the significant PSA increase over 4 months has me going back to Georgetown again tomorrow. Will meet with Dr Collins and see what he recommends as the next step. I've done my homework and I'm mentally ready to proceed, so if treatment is advised, I will go with SBRT (Cynerknife).

    SBRT

    I respect you for having done your research, and seeing doctors at top tier institution.

    SBRT is a very valid treatment decision for a man with your stats.  Cyberknife is one of the platforms that use SBRT.

    Good luck at Georgetown

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,013 Member
    CC52 said:

    Georgetown tomorrow

    Recap: 

    PSA  July 2013, 6.1.

    Biopsy 3 of 18 positive Oct 2013. Gs 3+3=6

    Georgetown 2nd opinion Dec 2013, Gs upgraded to 3+4=7

    PSA March 2014 prior to visit @ Johns Hopkins, 6.1 Gs 3+4=7

    PSA July 2014, 8.0

    Concern about the significant PSA increase over 4 months has me going back to Georgetown again tomorrow. Will meet with Dr Collins and see what he recommends as the next step. I've done my homework and I'm mentally ready to proceed, so if treatment is advised, I will go with SBRT (Cynerknife).

    Good Choice!

    Of course, as a CK alumnus and PCa survivor, I am biased but I am pleased that you have chosen CK as your potential choice of treatment.

    I think that it is your best shot at ridding yourself of PCa without undue side effects and reduction in quality of life.  However, regardless of your choice of treatment, I wish you the best and, when the time comes, please keep us informed of your post-treatment progress.

    Good luck!

  • CC52
    CC52 Member Posts: 103 Member
    Onward with CK

    My meeting at GUH went well, and I have decided to move forward with CyberKnife treatment.

    As I await final details on the scheduling, once again I want to express my sincere gratitude to each of you for all of the input and support that has been offered here. It has proven invaluable to the process for me.

    I will most certainly update my progress along the way.

    CC

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    CC

    I am very glad for the news.

    You did your "home work" and now you are ready for the killing. I believe you chosed well, now you need some luck for a perfect outcome. Free of cancer,free of complications and free of concerns.

    Best wishes in your journey.

    VG  Kiss 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    Onward with CK

    My meeting at GUH went well, and I have decided to move forward with CyberKnife treatment.

    As I await final details on the scheduling, once again I want to express my sincere gratitude to each of you for all of the input and support that has been offered here. It has proven invaluable to the process for me.

    I will most certainly update my progress along the way.

    CC

     

     

    Dear CC,

    I wish you the very best with the treatment.

    I read the post that you made on a different thread ( which I will copy below). Great that you had an MRI to see if any extracapsular extension shows. This was very important

    I wonder on the details of the cyberknife that you will receive. How many sessions? ( 4 or 5) How will they be scheduled, daily, or every other day? ( Some years back there was a study by Dr. King while at Stanford who found that every other day had less side effects, on the other hand a very experienced doctor,, Dr . Katz avocates daily) What will the Gy's be?

    CC, cyberknife has now been around for 8 or 9 years. It's quite awhile. In my opinion it is the most technologically advanced of all the radiaiton treatments.

     

     

    "We all come at this in different ways Schin. Age, diagnosis (severity), quality of life all factor into a man's decision making.

    After my initial Dx last October, I spent the months following reading and researching all I could about treatment options. Seems that you are doing that as well.

    I heard about CyberKnife because my mother in-law had a malignant spot on a lung removed with it. Seemed a great option to surgery, and that was/is certainly high on my list. For me there were far too many potential side effects with DaVinci (robotic) surgery, conventional radiation was too lengthy w/side effects, and brachytherapy has issues too. There are still longterm unknowns with CyberKnife, but I am convinced this is the way of the future and I want my treatment to benefit others after me.

    With that, I'll tell you I have just entered into treatment via CyberKnife, so I can't speak to your questions - only share how I got to this decision. The fiducials (gold markers inserted into the prostate to aid in locating it during the treatments) were placed last Wednesday, followed by MRI and CT scans this week, then treatment will begin a week or two afterward.

    Good luck as you continue toward your decision.

    CC"

  • CC52
    CC52 Member Posts: 103 Member

    Dear CC,

    I wish you the very best with the treatment.

    I read the post that you made on a different thread ( which I will copy below). Great that you had an MRI to see if any extracapsular extension shows. This was very important

    I wonder on the details of the cyberknife that you will receive. How many sessions? ( 4 or 5) How will they be scheduled, daily, or every other day? ( Some years back there was a study by Dr. King while at Stanford who found that every other day had less side effects, on the other hand a very experienced doctor,, Dr . Katz avocates daily) What will the Gy's be?

    CC, cyberknife has now been around for 8 or 9 years. It's quite awhile. In my opinion it is the most technologically advanced of all the radiaiton treatments.

     

     

    "We all come at this in different ways Schin. Age, diagnosis (severity), quality of life all factor into a man's decision making.

    After my initial Dx last October, I spent the months following reading and researching all I could about treatment options. Seems that you are doing that as well.

    I heard about CyberKnife because my mother in-law had a malignant spot on a lung removed with it. Seemed a great option to surgery, and that was/is certainly high on my list. For me there were far too many potential side effects with DaVinci (robotic) surgery, conventional radiation was too lengthy w/side effects, and brachytherapy has issues too. There are still longterm unknowns with CyberKnife, but I am convinced this is the way of the future and I want my treatment to benefit others after me.

    With that, I'll tell you I have just entered into treatment via CyberKnife, so I can't speak to your questions - only share how I got to this decision. The fiducials (gold markers inserted into the prostate to aid in locating it during the treatments) were placed last Wednesday, followed by MRI and CT scans this week, then treatment will begin a week or two afterward.

    Good luck as you continue toward your decision.

    CC"

    Treatment plan

    Hopeful,

    The full treatment plan hasn't been developed, so I don't know the Gy's will be. I'd like to ask them Wednesday when I go in for the scans. I do know there will be 5 sessions, every other day.

    Will let you know what I find out, hopefully before my treatments begin.

  • CC52
    CC52 Member Posts: 103 Member
    Shingles Outbreak

    I go for my last CK session tomorrow. The treatments have been a piece of cake, but after the 1st treatment I developed a case of Shingles.

    After some research, apparently a person is at greater risk of a Shingles outbreak with a weakened immune system, especially a cancer patient being treated with RT or chemo. I mentioned it to my RO, who discounted it as caused directly by the radiation treatments.

    I'll accept his explaination, but it does seem to me that along with all of the other known side effects of CK treatment (fatigue, urinary, bowel), if the possibility of an outbreak exists, maybe patients should be advised that the chance is there?

    It took several days for it to become full blown and get a Dx from my PCP and meds. It's been quite painful, and while nothing would have stopped the onset, knowing the possibility existed would have been helpful.

    Spread the word

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    Shingles Outbreak

    I go for my last CK session tomorrow. The treatments have been a piece of cake, but after the 1st treatment I developed a case of Shingles.

    After some research, apparently a person is at greater risk of a Shingles outbreak with a weakened immune system, especially a cancer patient being treated with RT or chemo. I mentioned it to my RO, who discounted it as caused directly by the radiation treatments.

    I'll accept his explaination, but it does seem to me that along with all of the other known side effects of CK treatment (fatigue, urinary, bowel), if the possibility of an outbreak exists, maybe patients should be advised that the chance is there?

    It took several days for it to become full blown and get a Dx from my PCP and meds. It's been quite painful, and while nothing would have stopped the onset, knowing the possibility existed would have been helpful.

    Spread the word

    Shingles

     

    I am sorry that you contracted shingles at this critical time. I hope that the rest of treatment was uneventful...wish you the best.

     

    Who should get the shingles vaccine? If I've already had shingles, should I get the vaccine so I don't get shingles again?

     

    http://www.mayoclinic.org/diseases-conditions/shingles/expert-answers/shingles-vaccine/faq-20057859

  • CC52
    CC52 Member Posts: 103 Member

    Shingles

     

    I am sorry that you contracted shingles at this critical time. I hope that the rest of treatment was uneventful...wish you the best.

     

    Who should get the shingles vaccine? If I've already had shingles, should I get the vaccine so I don't get shingles again?

     

    http://www.mayoclinic.org/diseases-conditions/shingles/expert-answers/shingles-vaccine/faq-20057859

    Vaccine

    Too late for the vaccineCry of course. Completed treatment Fri the 19th. The sessions went well.

    As an otherwise very healthy man, I had seen the ads for the shingles vaccine but never considered myself likely to have an outbreak. My only thought is I only wish I'd known more about the risk, especially as it pertains to cancer treatments - but I know that it is not in any way connected to the treatment (CK in my case), simply unfortunate timing.

    Hard to comment on the actual treatment and its side effects. I may not be the best to offer a testimonial to CyberKnife at this time because of the shingles episode. Went to two flomax to help with urinary symptoms, now added a steroid for two weeks. I will say it's been difficult for me, and perhaps trying to "balance" the various meds into something that could provide relief and avoid any interactions. Sleeping has been difficult. Some minor bleeding (rectal/stool), Dr advised to mantain low fiber diet - which I am doing.

    In spite of it all - I remain confident in my decision to proceed w/CK, and I look forward to a promising outlook. See the Dr Oct 22 for 1st post treatment exam.

    Thanks for following and for all the feedback and support. Very helpful.

    CC

  • CC52
    CC52 Member Posts: 103 Member
    Update

    A brief update today to note that over the past several weeks I have had significant improvement with urination, especially overnight. I had been having serious problems during the night with incomplete emptying, frequency very weak stream with start/stop issues. Really disrupted sleep (up 3-4 times).

    Needless to say, this improvement is a significant one - and while I still have moments that remind me things aren't "normal" as I remember it - they are certainly better. And isn't it important to have something positive to help in your overall mental outlook? You bet it is.

    I'm still at 2 Flomax daily (1-am, 1pm), plus I continue with Advil as well. I have returned to a more normal diet, without complications. Stools are still soft and smaller than pre-CK. Also, I notice an urgency to go at times. Comes on suddenly, so don't get in my way!!

    I never lost sexual function, but I believe the Flomax caused retrograde ejaculation. Different, and a bit uncomfortable. I'm very happy to say things are improving there as well now.

    So now, at 30 days since my last treatment, I feel very good about where I'm at. Certainly were some rough spells along the way, compounded by the shingles.

    I have my 1st follow-up with my RO this Wednesday. Will continue updates as PSA results come over the next year.

    Take care all - CC

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    Update

    A brief update today to note that over the past several weeks I have had significant improvement with urination, especially overnight. I had been having serious problems during the night with incomplete emptying, frequency very weak stream with start/stop issues. Really disrupted sleep (up 3-4 times).

    Needless to say, this improvement is a significant one - and while I still have moments that remind me things aren't "normal" as I remember it - they are certainly better. And isn't it important to have something positive to help in your overall mental outlook? You bet it is.

    I'm still at 2 Flomax daily (1-am, 1pm), plus I continue with Advil as well. I have returned to a more normal diet, without complications. Stools are still soft and smaller than pre-CK. Also, I notice an urgency to go at times. Comes on suddenly, so don't get in my way!!

    I never lost sexual function, but I believe the Flomax caused retrograde ejaculation. Different, and a bit uncomfortable. I'm very happy to say things are improving there as well now.

    So now, at 30 days since my last treatment, I feel very good about where I'm at. Certainly were some rough spells along the way, compounded by the shingles.

    I have my 1st follow-up with my RO this Wednesday. Will continue updates as PSA results come over the next year.

    Take care all - CC

    Wishing you the best

    Too bad for the  shingles. Everything else is going well. 

  • CC52
    CC52 Member Posts: 103 Member
    One month follow-up

    One month follow-up on 10/22 went well, RO says I'm right on track. I continue on Flomax while things continue to "settle down", and urinary function remains greatly improved from the earlier problems I experienced.

    History:

    PSA at beginning of CK treatment was 7.5 ng/ml

    Psa 10/22 was 3.7 ng/ml

    Next appt is mid December.

    CC

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    CC52 said:

    One month follow-up

    One month follow-up on 10/22 went well, RO says I'm right on track. I continue on Flomax while things continue to "settle down", and urinary function remains greatly improved from the earlier problems I experienced.

    History:

    PSA at beginning of CK treatment was 7.5 ng/ml

    Psa 10/22 was 3.7 ng/ml

    Next appt is mid December.

    CC

     

    excellent news

    Great PSA decline

     

    So far, so GREAT

     

    Best

     

  • VascodaGama
    VascodaGama Member Posts: 3,583 Member

    excellent news

    Great PSA decline

     

    So far, so GREAT

     

    Best

     

    Congratulations

    Good news and great expectations.

    Which number is going to be your nadir? Let's guess.... guessing.......hum..............yes it is that.