Husband just diagnosed with PC

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Comments

  • Murphy549
    Murphy549 Member Posts: 18
    #22
    AS monitoring

    Thanks for all the comments. My husband is now thinking about going ahead with the surgery. He wants to wait on the genetics test to see what it says and make a decision from there. I really appreciate all the input. It’s such a hard decision. 

     

    God if bless you all 

    Murphy 

     

  • ufknkidding
    ufknkidding Member Posts: 48 Member
    #23
    Quality of Life

    Another person's story included this video https://www.youtube.com/watch?v=eTN2vXpSHd8 which I thought was good because it talked about survival rates, quality of life, and the idea there may be new treatments on the horizon. I agree with Max Former Hodg... who indicated the worrisome issue is the perineural involvement.  You might want to review the information regarding perineural invasion at https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html

    If your husband elects RARP, be sure to do a lot of research on the treatment facility and the surgeon.  One reason (along with several others including my age for healing) I elected to proceed with surgery when I did was because I asked my surgeon how many RARP he performed monthly and yearly.  When I heard the numbers I recognized he had lots of experience with a high success rate and also knew he may not always be at my treatment facility.  Not all providers are created equally so please be sure to do lots of research on any and all providers to give your husband the highest possibility of the best clinical and quality of life outcomes.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #24
    Peace of mind

    I am glad for knowing that you are closer to a decision. I wonder if you have given a thought into radiation therapy. This is also a valid option, in particular if there is any possibility of cancer spread. Apart from the genetic test you should be scheduled for an image study (MRI) before making a decision.
    I think it wise to prepared a list of question for your next meeting at the Vanderbilt. You can start by inquiring about the issues put forward by your previous doctor, For instance, any possibility on extraprostatic extensions and what does it mean?
    I also recommend you to inquire about the need for additional exams or tests as preparedness for the intervention.

    I recall how stressful it was to my wife and I those times during the decision process. It took us two and a half month of consultations (3 specialists) and researches (almost none existent in the internet of 2000) to finaly decide on something. Today, 19 years later, I still think that we have chosen the best, in spite of a failed surgery. You will also decide on your best and feel accomplished. You couldn't have better.

    Best of lucks in this journey.

    VG

  • Murphy549
    Murphy549 Member Posts: 18
    #25
    Decision

    VG, 

    My husband asked about Radiation and the dr said the same thing. Save radiation for if you have a recurrence. I got  a long list of questions I started. The Dr will get tired of answering them. The Dr has my husband scheduled for an MRI and said we can move it up if the genetics test comes back showing aggressiveness in the samples. 

    Thanks again for all your help. 

     

    Murphy 

     

     

     

     

     

  • Murphy549
    Murphy549 Member Posts: 18
    #26
    ufknkidding said:

    Quality of Life

    Another person's story included this video https://www.youtube.com/watch?v=eTN2vXpSHd8 which I thought was good because it talked about survival rates, quality of life, and the idea there may be new treatments on the horizon. I agree with Max Former Hodg... who indicated the worrisome issue is the perineural involvement.  You might want to review the information regarding perineural invasion at https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/prostate-pathology/prostate-cancer-pathology.html

    If your husband elects RARP, be sure to do a lot of research on the treatment facility and the surgeon.  One reason (along with several others including my age for healing) I elected to proceed with surgery when I did was because I asked my surgeon how many RARP he performed monthly and yearly.  When I heard the numbers I recognized he had lots of experience with a high success rate and also knew he may not always be at my treatment facility.  Not all providers are created equally so please be sure to do lots of research on any and all providers to give your husband the highest possibility of the best clinical and quality of life outcomes.

    Quality of life

    Ufknkidding, 

    Thanks for the sites and the information. The second opinion on the biopsy from Vanderbilt doesn’t even mention the PNI seen on the first path report. That’s one of my questions for the Dr why it’s not mentioned  plus a lot more. Dr Smith at Vanderbilt has done over 7,000  robotic surgeries for Prostate. What’s the amount that a surgeon should have under his belt to be considered good? 

     

    Thanks 

    Murphy 

  • ufknkidding
    ufknkidding Member Posts: 48 Member
    #27
    Murphy549 said:

    Quality of life

    Ufknkidding, 

    Thanks for the sites and the information. The second opinion on the biopsy from Vanderbilt doesn’t even mention the PNI seen on the first path report. That’s one of my questions for the Dr why it’s not mentioned  plus a lot more. Dr Smith at Vanderbilt has done over 7,000  robotic surgeries for Prostate. What’s the amount that a surgeon should have under his belt to be considered good? 

     

    Thanks 

    Murphy 

    QOL, Case Loads, Star Ratings

    Hello Murphy.  Sorry I did not see your inquiry earlier.  Here is a link to an article that reviews annual caseloads and compares it to outcomes  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2860275/  You can also check out hospitals star ratings at https://www.medicare.gov/hospitalcompare/search.html

    The provider needs to tell you how many prostatectomies he or she has performed over the past 12 months and in the last month, not total number.  Also, ask the provider if he or she will be the only one performing the surgery and operating the robot.  Many hospitals are teaching hospitals and residents may be involved during various parts of the procedure.  You want to know this up front and your husband should decide if he wants the surgeon to do the complete procedure.  The response may be, well, we are a teaching hospital so be prepared to consider other facilities if that is a concern.  No disrespect to the ability or competency of a resident, but it is your husbands body and he gets to decide.

  • Murphy549
    Murphy549 Member Posts: 18
    #28
    ufknkidding said:

    QOL, Case Loads, Star Ratings

    Hello Murphy.  Sorry I did not see your inquiry earlier.  Here is a link to an article that reviews annual caseloads and compares it to outcomes  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2860275/  You can also check out hospitals star ratings at https://www.medicare.gov/hospitalcompare/search.html

    The provider needs to tell you how many prostatectomies he or she has performed over the past 12 months and in the last month, not total number.  Also, ask the provider if he or she will be the only one performing the surgery and operating the robot.  Many hospitals are teaching hospitals and residents may be involved during various parts of the procedure.  You want to know this up front and your husband should decide if he wants the surgeon to do the complete procedure.  The response may be, well, we are a teaching hospital so be prepared to consider other facilities if that is a concern.  No disrespect to the ability or competency of a resident, but it is your husbands body and he gets to decide.

    Surgery questions

    Ufknkidding, 

    Thanks for the link and your response. I’ll keep everyone updated once we get the genetics test back. 

     

    Murphy 

     

  • Murphy549
    Murphy549 Member Posts: 18
    #29
    Oncotype DX Genomic Prostate Score

    We received the score of 17 which the Vanderbilt DR says is a low score. So now it looks we’ll be waiting till Febuary to do the MRI and 2 weeks later the MRI guided biopsy. I’m stiil trying to get my husband to call & see about going ahead and getting the MRI done now so we  will know  something hasn‘t been missed? Just wanted to post the score and see what you guys think. 

     

    Thanks 

    Murphy 

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #30
    Genomic Prostate Score

    Thanks for sharing the news. Score 17 (in the scale of 1 to 100) is just excellent. This test has been improving since its start 5 years ago. Now the Oncotype assay analyze a package of 17 genes (chosen from more than 750 genes) to compare with so that the results are more reliable. In any case, the Oncotype differs substantially with its sibling the Prolia (that analyze 31 genes). The Oncotype provides more details suggesting failure where ever the Prolia analysis the aggressiveness of the cells in terms of faster division (prostatic cells life cycle can take between two to six months to divide and complete the cycle). At the beginning these laboratories only used the genes BRCA1 and BRCA2 (since 1995) testing breast cancer which are also involved in prostate cancer.

    I agree that the MRI can be done now. Though, in normal circumstances, the image would not present differences if taken in four months.

    Best wishes,

    VG 

  • Murphy549
    Murphy549 Member Posts: 18
    #31
    VascodaGama said:

    Genomic Prostate Score

    Thanks for sharing the news. Score 17 (in the scale of 1 to 100) is just excellent. This test has been improving since its start 5 years ago. Now the Oncotype assay analyze a package of 17 genes (chosen from more than 750 genes) to compare with so that the results are more reliable. In any case, the Oncotype differs substantially with its sibling the Prolia (that analyze 31 genes). The Oncotype provides more details suggesting failure where ever the Prolia analysis the aggressiveness of the cells in terms of faster division (prostatic cells life cycle can take between two to six months to divide and complete the cycle). At the beginning these laboratories only used the genes BRCA1 and BRCA2 (since 1995) testing breast cancer which are also involved in prostate cancer.

    I agree that the MRI can be done now. Though, in normal circumstances, the image would not present differences if taken in four months.

    Best wishes,

    VG 

    Test score

    VascodaGama,

    Thanks for the information on the testing. It’s helpful to understand how it all works. 

     

    Murphy 

     

  • Tarby
    Tarby Member Posts: 2
    #32
    15 week after RP

    Good luck with your decision what ever you do.

    My Dr was adement that I have the surgury and not radiation.

    His opion and my 2nd opion Dr is they dont normally recommend radiation for anyone under 65 yrs old.

    Its best to get surgery if your young because you can recover easier and move on with life.

    Im 57 and single and it was a huge decsion to do it. Its been 15 weeks on Monday since surgery and I am recovering well.

    I just had my 3 month PSA test and it was 0.01  

    I took control of my urinary issues in about 4 to 6 weeks and never had to use more than a ultra thin pad from day 1.

    just waiting on my friend to come out and play.

    So good luck with your decsion. If you cut it out, most likely its gone forever and you can move on with life.

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