What lies ahead?

CC52
CC52 Member Posts: 103 Member

Hello everyone,

I wanted to start by saying how much I appreciate the contributions each of you have made to this forum, and how I have already benefited from the knowledge, experiences and opinions you've shared.

Here's my situation:

I am 61, and diagnosed with Pca in October 2013. There is a history of Pca in my family, with my father (who will be 90 in May) and his three younger brothers. One of them died as a result of Pca about 20 years ago. 

PSA in 2003 was 1.9, increased to 6.1 in June 2013. Along the way, there were a couple of drops, but in all a steady rise. My pcp has encouraged me to see a urologist since 09, but I have resisted. But the reality of the family history and the 6.1 sent me to the urologist. Biopsy revealed 3 of 18 positive: Rt mid lateral @ 30%, Lft apex mid @ 5%, Lft apex medial @ 30% w/perineural invasion present. Gleason score of 3+3=6 in all cores, with overall Gleason of 6. CT and bone scans negative for mets.

Urologist wants me to move forward with treatment or removal. Radiation oncologist made no recommendation, (he advised taking my time, no rush) although he implied I may be a candidate for active surveillance.

I intend to seek second opinions from both Johns Hopkins and Georgetown. I am encouraged by the growing acceptance of active surveillance, and hope that may be an option for me. If the second opinions lead to the reality that something needs to be done, I am preparing for that eventuality.

If you have any comments, please share them with me. I will do the best I can to stay active here and update as things progress.

My thanks to all...

 

 

 

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member
    Family Opinions

    CC52

    The title you gave to your thread reflects well the descriptions posted. I can see that you are well informed and got to the “tip of the cliff” when you need to make a decision; jump or keep still.
    This is crucial and difficult to determine and only you can resolve the situation.

    As a member of a PCa family you know now that you are also a member of the PCa club however, the death of your uncle does not reflect any risk for one being “on the list” just because of a positive diagnosis. Your father is the real proof.
    According to the info you shared, your case seems to relate to low risk slow growing type which makes me think that the opinion of the radiologist is right for you in considering AS. This AS modality is similar to deferred treatment except that it would be done when the “time is right” or needed, if ever.

    I am a survivor of failed RT and RP in a 13 years history since diagnosis. My experiences together with the stories I have followed of various patients with various situations (low and high aggressive cases) confers me to recommend newbies to get proper examinations before any decision. And such a commitment to a therapy should involve family opinions and the financial aspect of the patient.

    Radical therapies are the only ones that may provide cure. Doctors by their side want to treat. They prefer to consider firstly Cure. That is their job. But in PCa treatments one puts in risk the quality of living. Cured but “handicapped” is not what one wants for the old age. Early death due to cancer is also not a preference. At 61 you are too young to give up with your life style however you are also in the group considered by the medical institutions as fit for an earlier therapy. That is when the meaning of the word “earlier” becomes important to judge and this is what one should think at his timing. Some guys prefer to continue their life style equally until, say the 70th and some would rarer strip out the malady the soonest unconditionally. This gives them peace of mind, I think.

    AS is proper to the ones with the guts to live with bandit but that can commit in following the progress with a series of periodical tests. The benefit in choosing AS is that it gives the “timing” for a treatment that could well be not necessary because one may die from other causes.
    In any case, I think it better you get a more concise image study with better contrast agents and cross information data, before deciding on embarking on AS. PET/3t-MRI would be my preferences.

    Welcome to the board.

    Wishing you luck in your journey.

    VGama  Wink

  • MichaelF1002
    MichaelF1002 Member Posts: 54
    Choices

    CC52:

    Hi.  My biopsy showed 5% of 1 in 10 samples as positive and my Gleason was 3+3=6.  I spent 6 months researching my options.  To make a long story short, I chose the DaVinci surgery option (and had my surgery on Oct. 9 of this year).  (I just didn't want to live knowing there was a cancer inside me and wondering if or when it would spread.)  After seeing the pathology report, which showed the cancer less than 1mm from the margin, the urologist told me he had thought for sure that I had been a candidate for AS but with the tumor being so close to the margin I really wasn't.  (I am not now very comfortable with such a close call and wonder if it has possibly spread beyond the margins; only time will tell).  I have my first post-op PSA test coming up in a couple of weeks.  In any event, there is really no way of knowing with certainty whether AS, radiation, or surgery is the right option.  It is really up to you to determine what is best for you.  It pretty much boils down to what side effects you can live with.  The side effect of AS is having to live with the uncertainty.  The side effects of radiation and surgery are well known -- I am living with incontinence and erectile dysfunction right now (hopefully both are only temporary, but it will be months before I know about the first and probably a couple of years before I know about the second).  I wish you the best in the decisionmaking process you will be undergoing and for the best results possible!

    Michael

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Dear cc52

    The information that Vasco gave is excellent.

    Since determining gleason scores is subjective, I strongly recommend that you have a second opinion on the pathology of your biopsy by a world class organization, where pathologists  specializes in prostate cancer. Since you plan to visit Johns Hopkins this would be a great choice.

    There is an excellent active surveillance program at Johns Hopkins in place. I would make an appointment with these people. I think that there is a Dr. Carter who is in charge of this program.

    You most likely have an indolent cancer, that is not likely to spread, and are an excellent candidate for AS. As Vasco mentioned it is important to confirm with an 3.0 tesla mri.

    Many who are eligible for AS seek treatment that can have major side effects. Many consider this to be over treatment.

    Since March 09 I have been treated with Active Surveillance. Please feel to click my name to see what I have been doing, and various sources that are available to you.

  • CC52
    CC52 Member Posts: 103 Member
    Thanks

    VG, Michael and hopeful,

    Thanks for your replies and offering suggestions...most of all your support! You provide all of us a wide spectrum of knowledge, opinions and personal experiences that are tremendously helpful.

    I am scheduled for a second opinion consultation at Georgetown in a couple weeks. JHU sometime after the new year.

    CC

  • CC52
    CC52 Member Posts: 103 Member
    Consultation today at GUH

    Consultation today at GUH with a RO who is very involved with the CK program there. I came away very optimistic about my prospects for active surveillance. They are calling for my slides, and will get their pathologist to re-evaluate. Dr's impressions are that because of my overall good health and age (61), treatment options and the likely side affects may result in a dramatic loss to my quality of life.

    Now he's speaking my language! Wink

    Seriously...I know it's not time to get giddy, but I am encouraged. Pending the path report, they have an AS clinical study there that I might be able to participate in - if my numbers allow. (25% max involvement, I have 2 @ 30%) We'll see where it leads.

    Sometime early next year, I'll get my next opinion from JHU in Baltimore.

    Take care everyone, and I wish you Merry Christmas and a Happy New Year

    CC

     

     

     

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

    Consultation today at GUH

    Consultation today at GUH with a RO who is very involved with the CK program there. I came away very optimistic about my prospects for active surveillance. They are calling for my slides, and will get their pathologist to re-evaluate. Dr's impressions are that because of my overall good health and age (61), treatment options and the likely side affects may result in a dramatic loss to my quality of life.

    Now he's speaking my language! Wink

    Seriously...I know it's not time to get giddy, but I am encouraged. Pending the path report, they have an AS clinical study there that I might be able to participate in - if my numbers allow. (25% max involvement, I have 2 @ 30%) We'll see where it leads.

    Sometime early next year, I'll get my next opinion from JHU in Baltimore.

    Take care everyone, and I wish you Merry Christmas and a Happy New Year

    CC

     

     

     

     Please desctribe the Active

     Please desctribe the Active Surveillance Clinical trial....what is involved?

  • CC52
    CC52 Member Posts: 103 Member

     Please desctribe the Active

     Please desctribe the Active Surveillance Clinical trial....what is involved?

    I believe I should have said

    I believe I should have said a clinical study.

    As I understand it, the hospital works with the patient to ensure that PSA testing and biopsies are done as required, and they maintain the records of all patients involved in the program. (Noteworthy: The Dr. I met with also said that MRI guided biopsies are the next best thing, offering a much more reliable means of testing for  Pca than current ultrasound.) As more data is collected over time, the door may open to more men to benefit from AS.

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

    I believe I should have said

    I believe I should have said a clinical study.

    As I understand it, the hospital works with the patient to ensure that PSA testing and biopsies are done as required, and they maintain the records of all patients involved in the program. (Noteworthy: The Dr. I met with also said that MRI guided biopsies are the next best thing, offering a much more reliable means of testing for  Pca than current ultrasound.) As more data is collected over time, the door may open to more men to benefit from AS.

    Eligibility for clinical study

    At this point I do not see any reason for you not to be allowed in this program. If this hospital offeres and and you accept entrance into the program, will there be a MRI targeted biopsy as a requirement for entrance to the program.

    I have been in a program of this nature for the last 3 and half years, and on AS for four and a half years.

  • CC52
    CC52 Member Posts: 103 Member

    Eligibility for clinical study

    At this point I do not see any reason for you not to be allowed in this program. If this hospital offeres and and you accept entrance into the program, will there be a MRI targeted biopsy as a requirement for entrance to the program.

    I have been in a program of this nature for the last 3 and half years, and on AS for four and a half years.

    Guess it depends on how hard

    Guess it depends on how hard and fast they are on the 25% max involvement in any core. We'll see, but let's just say I'm "hopeful and optimistic" Smile

     

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

    Eligibility for clinical study

    At this point I do not see any reason for you not to be allowed in this program. If this hospital offeres and and you accept entrance into the program, will there be a MRI targeted biopsy as a requirement for entrance to the program.

    I have been in a program of this nature for the last 3 and half years, and on AS for four and a half years.

    Targeted MRI/ultrasound

    Targeted MRI/ultrasound fusion biopsy significantly outperforms random 12 core biopsy for prediction of total prostate cancer tumor volume

     

    THESDA, MD USA (UroToday.com) - Targeted magnetic resonance imaging/ultrasound (MRI/US) fusion biopsy has been shown to allow for more optimal lesion targeting. A group from NCI conducted this study to correlate the highest % core involvement and corresponding tumor length for both targeted fusion and random 12 core biopsy with total tumor volume.

    suoThe authors reviewed 696 men who underwent multiparametric MRI with targeted MRI/US fusion biopsy at NCI and then identified 109 men who met Johns Hopkins criteria for active surveillance. They calculated tumor volume in fusion biopsy-positive lesions and then correlated the highest % core involvement and corresponding tumor length for both targeted fusion and random 12-core biopsy. Using bivariate analysis they looked for the empirical relationship between these variables. For the highest percentage core involvement, targeted biopsy showed a positive correlation (R=0.57), whereas 12-core biopsy showed a poor correlation (R=0.016) with the total tumor volume (p < 0.0001 and p=0.91, respectively). Also, for tumor length of the highest % core, targeted biopsy showed a positive correlation (R=0.6), whereas 12-core biopsy showed a poor correlation (R=0.01) with the total tumor volume (p < 0.0001 and p=0.94, respectively).

    The authors concluded that targeted biopsy better predicts overall burden of disease and can aid in risk stratification of patients seeking active surveillance.

    Presented by:
    Chinonyerem Okoro, Soroush Rais-Bahrami, Arvin George, Peter A. Pinto, et al.
    National Cancer Institute

    Reported by:
    Reza Mehrazin, MD from the 14th Annual Meeting of the Society of Urologic Oncology (SUO) "Extraordinary Opportunities for Discovery" - December 4 - 6, 2013 - Bethesda, MD USA

    Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA USA

    image

     

     

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

    Guess it depends on how hard

    Guess it depends on how hard and fast they are on the 25% max involvement in any core. We'll see, but let's just say I'm "hopeful and optimistic" Smile

     

    Active Surveillance programs

    The programs at various institution vary slightly from one institution to another, but not by much.

    I don't know what the criteria is for the institution that you just visited, but at Johns Hopkins, I've read that a low, low patient risk, a patient with a random biopsy of 12,that there be less less than 2 cores positive with less than 50 percent involvement in each, psa less than 10, prostate size/psa ratio = 0.15 or less, a digital rectal normal or slight non normality.

    cc :  cc, it's wonderful to be   "hopeful and optimistic", that's what it's all about.

  • CC52
    CC52 Member Posts: 103 Member
    Increased Gleason score

    Following a review of my slides by Bostwick Labs, they determined a GS of 7 (up from 6).

    How significant is this increase, especially to my desired option of active surviellance?

     

     

     

     

     

     

     

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

    Increased Gleason score

    Following a review of my slides by Bostwick Labs, they determined a GS of 7 (up from 6).

    How significant is this increase, especially to my desired option of active surviellance?

     

     

     

     

     

     

     

    Well

    Well at age 61, an upgrade is significant. The difference in evaluation between the two pathologist can be a nuance..... I suggest that you speak to your doc about having the slides sent for gene evaluation.

    Of the core that is upgraded, is it a 3+4=7 or a 4+3=7? What is the involvement of the core that is upgraded, that is what percent of the core is cancerous? Are there other observations made by bostwick.

    You are seeing doctors at two fine institutions, ask them.

    .................

    In my case, my second opinion by Johns Hopkins is 3+4=7 . I am 70 yo; the criteria is relaxed for those over 70.

    Check my history for reference by clicking my name.

     

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member
    Upgraded

    Unfortunately you have been upgraded which sets you to a higher risk for metastases. The first grade in the score is the “commandant” and the mark indicating aggressivity. If grade Gr4 then you better think on a treatment earlier than if it were Gr3.
    In any case the “timing” to treat is still dubious. You may wait to verify indolence but at the risk for progressed diagnosis. Your next step could include a Multiparametric MRI or PET/CT (C11/F18) choline to get details of the tumour. The gene test recommended by H&O above can verify aggressiveness of your prostatic cells and it is most recommended if you decide on AS. It will also help in the future should your case become progressive.
    Other markers you may get today to serve as comparative data in future therapies is a DEXA scan for bone loss, ECG for heart health, lipids for diabetes risks and the Testosterone levels. Here is a link discussing means of caution in AS results; http://csn.cancer.org/node/260714#comment-1385279

    I wonder about the protocol of the clinical trial you mentioned above. I recommend you to obtain more details and think in getting involved if the contents are beneficial in your case. These types of trials/studies involve no risk and provide the possibility in extensive care, free of charges.
    It seems that the study has been recommended by the RO in the CK program at GUH. Active Surveillance may have been suggested because it may be part of the placebo group in a CK trial. You could probably now be included in the group who gets the treatment, if such would be your choice.

    Can you provide the details in the second opinion from JH?

    I would recommend you to get a book on prostate cancer and be cautious with your diet.

    Best wishes in your journey.

    VGama  Wink

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

    Upgraded

    Unfortunately you have been upgraded which sets you to a higher risk for metastases. The first grade in the score is the “commandant” and the mark indicating aggressivity. If grade Gr4 then you better think on a treatment earlier than if it were Gr3.
    In any case the “timing” to treat is still dubious. You may wait to verify indolence but at the risk for progressed diagnosis. Your next step could include a Multiparametric MRI or PET/CT (C11/F18) choline to get details of the tumour. The gene test recommended by H&O above can verify aggressiveness of your prostatic cells and it is most recommended if you decide on AS. It will also help in the future should your case become progressive.
    Other markers you may get today to serve as comparative data in future therapies is a DEXA scan for bone loss, ECG for heart health, lipids for diabetes risks and the Testosterone levels. Here is a link discussing means of caution in AS results; http://csn.cancer.org/node/260714#comment-1385279

    I wonder about the protocol of the clinical trial you mentioned above. I recommend you to obtain more details and think in getting involved if the contents are beneficial in your case. These types of trials/studies involve no risk and provide the possibility in extensive care, free of charges.
    It seems that the study has been recommended by the RO in the CK program at GUH. Active Surveillance may have been suggested because it may be part of the placebo group in a CK trial. You could probably now be included in the group who gets the treatment, if such would be your choice.

    Can you provide the details in the second opinion from JH?

    I would recommend you to get a book on prostate cancer and be cautious with your diet.

    Best wishes in your journey.

    VGama  Wink

    If there is high involvement

    If there is high involvement of the cancer in the core with the G7, I would ask for a Multiparametric MRI for indication of extracapsular extension.

    If there is low involvement of the cancer, I would ask about being placed in the program where there is multiparametric MRI fused with a three dimensional biopsy machine to give details of  what is going on in the prostate, and see if there is extracapsular extension.

    Vasco, as far as the pet/CT (C11/F18) I'm thinking that it is not necessary at this time unless the MRI  is positive or other circumstances give indication for for extracapsular extension. Comments?

  • VascodaGama
    VascodaGama Member Posts: 3,547 Member

    If there is high involvement

    If there is high involvement of the cancer in the core with the G7, I would ask for a Multiparametric MRI for indication of extracapsular extension.

    If there is low involvement of the cancer, I would ask about being placed in the program where there is multiparametric MRI fused with a three dimensional biopsy machine to give details of  what is going on in the prostate, and see if there is extracapsular extension.

    Vasco, as far as the pet/CT (C11/F18) I'm thinking that it is not necessary at this time unless the MRI  is positive or other circumstances give indication for for extracapsular extension. Comments?

    Ira

    Ira

    I hardily can read your post with so small letters.

    My suggestion for the choline image study is due to the possibility of checking for any bone lesions. It would serve for comparison in the present and future diagnosis, if any. The PSA is high enough to detect anything and it is "clean".

    Surely in his case it may be unecessary, apart from being more expensive, but it could substitute the pMRI. 

    Best

    VG

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

    Ira

    Ira

    I hardily can read your post with so small letters.

    My suggestion for the choline image study is due to the possibility of checking for any bone lesions. It would serve for comparison in the present and future diagnosis, if any. The PSA is high enough to detect anything and it is "clean".

    Surely in his case it may be unecessary, apart from being more expensive, but it could substitute the pMRI. 

    Best

    VG

    Dear VG

    Thanks for the explanation. Sealed

  • CC52
    CC52 Member Posts: 103 Member

    Well

    Well at age 61, an upgrade is significant. The difference in evaluation between the two pathologist can be a nuance..... I suggest that you speak to your doc about having the slides sent for gene evaluation.

    Of the core that is upgraded, is it a 3+4=7 or a 4+3=7? What is the involvement of the core that is upgraded, that is what percent of the core is cancerous? Are there other observations made by bostwick.

    You are seeing doctors at two fine institutions, ask them.

    .................

    In my case, my second opinion by Johns Hopkins is 3+4=7 . I am 70 yo; the criteria is relaxed for those over 70.

    Check my history for reference by clicking my name.

     

    Waiting

    I am still waiting for the results from Bostwick. Dr called me with the news a couple of weeks ago, and we only talked a few minutes. Not many details, and he said he would forward the lab report. I just sent him a follow-up email.

    I have not been to Johns Hopkins yet...many other things demanding my attention these days.

     

  • CC52
    CC52 Member Posts: 103 Member
    New Info

     

     

  • CC52
    CC52 Member Posts: 103 Member
    CC52 said:

    New Info

     

     

    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