New here: Husband has very high risk localized PCa

Hello, 

My husband (age 59) was just diagnosed with very high risk PCa. (PSA 28, GS 4+5, 8/8, 12/12+, N0, M0)

I am extremely upset not only because he has this cancer but even more because the doctor didn't even mention PSA screening at his previous physicals. I've since discovered national guidelines that direct against screening. I'm beyond shocked that men are abondoned in this regard, and receive care only when their cancer is symptomatic. I feel terrible that I knew nothing about PSA. How could I be so stupid? How could we have trusted the family doctor to perform a thorough physical? A simple blood test could have found this cancer early and my husband would have had a good chance of cure.

I have been researching like crazy. I know its likely that there is micrometastisis. At this point, I think the best option is mutilmodal: RP + RT + ADT but no doctor has really laid out a long term plan. Someone told me that RP is safer than RT for high risk because you can add RT to RP but not the other way around.

I expect the pathology report after surgery will not be great. 

Is anyone else in this terrible place? If so, did you begin ADT right after surgery? 

Thank you. 

 

 

 

«1

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,725 Member
    edited October 2016 #2
    Stressed

    Desperate,

    You are understandably very stressed.  But decisions based on stress are invariably bad decisions.  You have a period of research and consultation before making any decisions. Even advanced PCa (prostate cancer) is very treatable, and in some cases remain curable. And even metastatic PCa, which he might NOT have anyway, is treatable, usually for a decade or more.  So take a time out and relax for a moment.

    PSA guidelines in the US for the last few years have not "directed against" PSA screenings. They have suggested that PSA is overused and led to unnecessary biopsies and treatments.  I never agreed with this attitude, and have criticised it here many times, but all doctors have remained free to make their own clinical decisions.  My own family doctor agreed with the "PSA is overused" approach, and I took my results to a urologist, and she gave me an immediate biopsy, which discovered Stage II PCa.  So I understand your anger.  Similiar insurance-driven attitudes have been published regarding breast cancer in the last few years also.

    My PCa was treated via surgery.  But your husband sounds to me like a poor candidate for surgery. We are not doctors here, and cannot offer medical advice, but I'm sure all will agree with me on this.  Certainly I would not assume surgery at this point. You need to consult with at leat one Radiaton Oncologist with extensive PCa treatment experience,preferrably at a promininelt national or regional cancer center.  Surgery for metastatic or very likely metastatic PCa is a poor choice for cure.  What is potentially curative of matastatic PSC is radiation.  Hormonal treatments and chemo are not curative of PCa disease, but especially HT will control it, often for a decade or even much longer. 

    You need to consult with some proinent professionals before assuming what will transpire in his treatments.

    max

  • Old Salt
    Old Salt Member Posts: 910 Member
    edited October 2016 #3
    Excellent advice from Max

    Yes, as another layperson, it appears to me that surgery should not be included in your husband's treatment plan. As you already wrote, some cancer cells may have escaped the prostate. These can be controlled, or even eradicated, with hormone therapy. And the cancer itself, being confined (at least on a 'macro' scale) to the prostate can be treated with appropriate radiation. Importantly, the radiation plan should include areas immediately surrounding the prostate. An appropriate scan should be helpful in setting up a treatment plan.

    As an aside, my diagnosis was similar to that of your husband. I was treated with a combination of SBRT + IMRT on top of hormone treatment (1.5 years).

  • Stressed

    Desperate,

    You are understandably very stressed.  But decisions based on stress are invariably bad decisions.  You have a period of research and consultation before making any decisions. Even advanced PCa (prostate cancer) is very treatable, and in some cases remain curable. And even metastatic PCa, which he might NOT have anyway, is treatable, usually for a decade or more.  So take a time out and relax for a moment.

    PSA guidelines in the US for the last few years have not "directed against" PSA screenings. They have suggested that PSA is overused and led to unnecessary biopsies and treatments.  I never agreed with this attitude, and have criticised it here many times, but all doctors have remained free to make their own clinical decisions.  My own family doctor agreed with the "PSA is overused" approach, and I took my results to a urologist, and she gave me an immediate biopsy, which discovered Stage II PCa.  So I understand your anger.  Similiar insurance-driven attitudes have been published regarding breast cancer in the last few years also.

    My PCa was treated via surgery.  But your husband sounds to me like a poor candidate for surgery. We are not doctors here, and cannot offer medical advice, but I'm sure all will agree with me on this.  Certainly I would not assume surgery at this point. You need to consult with at leat one Radiaton Oncologist with extensive PCa treatment experience,preferrably at a promininelt national or regional cancer center.  Surgery for metastatic or very likely metastatic PCa is a poor choice for cure.  What is potentially curative of matastatic PSC is radiation.  Hormonal treatments and chemo are not curative of PCa disease, but especially HT will control it, often for a decade or even much longer. 

    You need to consult with some proinent professionals before assuming what will transpire in his treatments.

    max

    Thank you for your response.

    Thank you for your response. We did consult with surgeon and Rad. Onc. The Rad Onc seemed said it didn't matter which way we went, the outcomes were similar. However, I've been reading that RP + RT + ADT might lead to the best survival outcome. I wondered about the treatment that others with similar cancers had. 

    I live in Canada and the guidelines for PSA screening are NOT to have an informed discussion but screening but rather not to mention it. If the man brings it up the guidelines encourage informing him of all of the negatives associated with it. 

     

     

  • desperate for hope
    desperate for hope Member Posts: 44
    edited October 2016 #5
    Old Salt said:

    Excellent advice from Max

    Yes, as another layperson, it appears to me that surgery should not be included in your husband's treatment plan. As you already wrote, some cancer cells may have escaped the prostate. These can be controlled, or even eradicated, with hormone therapy. And the cancer itself, being confined (at least on a 'macro' scale) to the prostate can be treated with appropriate radiation. Importantly, the radiation plan should include areas immediately surrounding the prostate. An appropriate scan should be helpful in setting up a treatment plan.

    As an aside, my diagnosis was similar to that of your husband. I was treated with a combination of SBRT + IMRT on top of hormone treatment (1.5 years).

    Options not offered!

    Thank you very much. I'm so glad you commented and that you shared your traetment about SBRT and IMRT. Only high dose brachytherapy followed by EBRT were mentioned in the list of options given to us in a brochure for all PCa patients. It seems like your treatment options are not available at the cancer center we went to. 

    We are seeing another Rad Onc at a bigger center this week. 

    I attended a PCa meeting and a few men told me that if you have surgery, you can always do radiation after but if you start with radiation, surgery is not a likely possibility. Recent literature has reported benefits to survival for RP even for selected metastic patients. 

    How have you been feeling since your treatment? 

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited October 2016 #6
    side effects of active treatments are cummulative

    Surgery can have major side effects such as incontinence and erectile dysfunction.

    Surgery is generally done toward localized cancer within the prostate. In your husbands case with a high risk Gleason score of 4+5=9 it is probable that the cancer has escaped the prostate, thus surgery would not eradicate all of the cancer and radiation and hormone treatment would still be required. The surgery would be  redundant, and radiation and hormone treatment, or hormone treatment only would still be required.

    You need to find a Medical Oncologist, the very, very best that you can find to lead your medical team. This doctor is most qualified to administer hormone treatment.

    Also as previously recommend interview a radiation oncologist.

    I wonder if your husband has had any imaging diagnostic tests such as a 3T MRI or an advanced PET scan?

  • side effects of active treatments are cummulative

    Surgery can have major side effects such as incontinence and erectile dysfunction.

    Surgery is generally done toward localized cancer within the prostate. In your husbands case with a high risk Gleason score of 4+5=9 it is probable that the cancer has escaped the prostate, thus surgery would not eradicate all of the cancer and radiation and hormone treatment would still be required. The surgery would be  redundant, and radiation and hormone treatment, or hormone treatment only would still be required.

    You need to find a Medical Oncologist, the very, very best that you can find to lead your medical team. This doctor is most qualified to administer hormone treatment.

    Also as previously recommend interview a radiation oncologist.

    I wonder if your husband has had any imaging diagnostic tests such as a 3T MRI or an advanced PET scan?

    Please tell me more!

    Thank you for your comments.  I am very confused. The rad. onc we saw last week looked at the numbers and basically said outcomes are same: Radiation vs RP so whatever one you want. She didn't really seem to care actually. 

    It seems like everyone acts in silos: Surgeon, Rad Onc and medical oncologist. 

    No my husband has only had CT and Bone scan. Would a 3T MRI tell us if there is SVI, extracapsular extension or lymph node cancer? Am I correct that the improved information of a 3T MRI over a CT scan would enable us to make more informed decisions? 

    Does ADT also lead to erectile dysfunction? My husband's overall priority is to prolong his life and enjoy his family and grandchildren. 

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited October 2016 #8
    .

    "the bone scan involves the use of radioactive isotope that is picked up at the sites within the bone in thee presense of significant bone metastases.

    It is recommended for high risk patients. Great that your husbands results were negative.

     

    Basically the MRI provides finer resolution than the bone and cat scans, and is more effective in determining if the cancer is outside the prostate. Recommend that you ask for a multiparmetric 3T MRI so a more informed decision can be made.However, my lay opinion is that  in your husbands case it is  unlikely that the cancer is contained in the prostate.

    The T3 MRI  for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, may show evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. 


    here are some studies from pubmed about mri's and a high tech pet scan


    multiparametric mri t3 

    The impact of Magnetic Resonance Imaging on prediction of extraprostatic extension and prostatectomy outcome in low-, intermediate- and high-risk Prostate Cancer Patients. Try to find a standard.


    http://www.ncbi.nlm.nih.gov/pubmed/26154571



    The impact of multiparametric pelvic magnetic resonance imaging on risk stratification in patients with localized prostate cancer.


    http://www.ncbi.nlm.nih.gov/pubmed/24785987



    Preoperative 3-Tesla multiparametric endorectal magnetic resonance imaging findings and the odds of upgrading and upstaging at radical prostatectomy in men with clinically localized prostate cancer.
    http://www.ncbi.nlm.nih.gov/pubmed/23040223



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

    PET SCAN

    There are various pet scan that provide information about where the cancer may be outside the prostate, so directed radiation can be done. Below is one PET SCAN type. There are others that may be available and more effective.

    Detection of recurrent prostate cancer after radical prostatectomy: comparison of 11C-choline PET/CT with pelvic multiparametric MR imaging with endorectal coil.

    http://www.ncbi.nlm.nih.gov/pubmed/24434294
    This above comparason is looks at a high tech PET/Ct.

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

    Hormone treatments

    There are various hormone drugs that are available. Many of which lower testerone levels and  cause ED and can cause significant a side effects. Often there are vacations from these drugs where the patient may more normally function. My case does not require homone treatment,so I am far from being an competent about this,  but others who post here, who receive hormone treatment here can fill you in based on their experience and knowledge.

    Hormone medications, during the last few years have increased geometrically with some of them being very high sophisticated...thus the reason for a Medical Oncologist.

    Your husband will overcome this, but things must be done in a rational manner, based on knowledge.

  • .

    "the bone scan involves the use of radioactive isotope that is picked up at the sites within the bone in thee presense of significant bone metastases.

    It is recommended for high risk patients. Great that your husbands results were negative.

     

    Basically the MRI provides finer resolution than the bone and cat scans, and is more effective in determining if the cancer is outside the prostate. Recommend that you ask for a multiparmetric 3T MRI so a more informed decision can be made.However, my lay opinion is that  in your husbands case it is  unlikely that the cancer is contained in the prostate.

    The T3 MRI  for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, may show evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. 


    here are some studies from pubmed about mri's and a high tech pet scan


    multiparametric mri t3 

    The impact of Magnetic Resonance Imaging on prediction of extraprostatic extension and prostatectomy outcome in low-, intermediate- and high-risk Prostate Cancer Patients. Try to find a standard.


    http://www.ncbi.nlm.nih.gov/pubmed/26154571



    The impact of multiparametric pelvic magnetic resonance imaging on risk stratification in patients with localized prostate cancer.


    http://www.ncbi.nlm.nih.gov/pubmed/24785987



    Preoperative 3-Tesla multiparametric endorectal magnetic resonance imaging findings and the odds of upgrading and upstaging at radical prostatectomy in men with clinically localized prostate cancer.
    http://www.ncbi.nlm.nih.gov/pubmed/23040223



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

    PET SCAN

    There are various pet scan that provide information about where the cancer may be outside the prostate, so directed radiation can be done. Below is one PET SCAN type. There are others that may be available and more effective.

    Detection of recurrent prostate cancer after radical prostatectomy: comparison of 11C-choline PET/CT with pelvic multiparametric MR imaging with endorectal coil.

    http://www.ncbi.nlm.nih.gov/pubmed/24434294
    This above comparason is looks at a high tech PET/Ct.

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

    Hormone treatments

    There are various hormone drugs that are available. Many of which lower testerone levels and  cause ED and can cause significant a side effects. Often there are vacations from these drugs where the patient may more normally function. My case does not require homone treatment,so I am far from being an competent about this,  but others who post here, who receive hormone treatment here can fill you in based on their experience and knowledge.

    Hormone medications, during the last few years have increased geometrically with some of them being very high sophisticated...thus the reason for a Medical Oncologist.

    Your husband will overcome this, but things must be done in a rational manner, based on knowledge.

    Thank you!

    Your comments are much appreciated. Thank you. 

     

  • rooster02
    rooster02 Member Posts: 12
    edited October 2016 #10
    Our Decision Experience

    Desperate

    I am sorry you are now a member of this group. Your team approach gives you more issues to consider for treatments and the general effects of each treatment. The success of the treatment plan has a direct relationship to the quality of life you and your husband will experience as you make treatment decisions.

    Old Salt, Max and others have made suggestions, based on their treatment choices, all worth considering. My wife and I made decisions in 2016 which have lasting effects; positive and negative; short term and long term.

    January 2016, annual physical PSA test at our family doctor's was slightly elevated - 6.1, previous test 4.2 - 63 years of age.

    February 2016, referred to Urologist for digital examine and then a 12 core biopsy two weeks later.  9 of the 12 cores were 100% hot, lab returned a sore - Gleason 3+4=7. A MRI and bone scan would follow in the next 15 days. Subsequent X-rays were taken of question areas which were determined to be osteoarthritis. Both the MRI and bone scan were negative.

    Mach 2016, research, discussion, and prayer. I happen to work at a large hospital, providing many varied opinions on how to address this cancer.

    April 6th our choice to have the prostate removed was completed robotically. The post-operative pathology report, for us, confirmed we had made the best choice in our situation, in our opinion. The post-operative pathological report of the gland was not what I had hoped for: 70% tumor, Gleason's grade 9 (4+5). Of more concern was the margins: bladder neck - positive bilateral, perineural invasion-positive, extraprostatic extension-positive, seminal vesicles-positive right.

    Stage: pT3b. NX.

    My cancer was not contained to the prostate only, The link to my specific history can be found in my September 30th posting “Adjuvant IMRT”.

    September 2016, we are now in the middle of Adjuvant IMRT treatments. These treatments were started about as quickly as you can after surgery, only a 5-month healing span. The aggressiveness of my specific cancer has had an impact on our treatment decisions.  

    We wanted to remove as much of the cancer as possible surgically, then address any remaining hot spots through a radiation oncologist. There are side effects to surgery we are dealing with; learning to live with. Will these side effects get better, lessen in time, possibly?

    This summary is only a reference, a little insight as to our pathway in fighting the bandit, the decisions we have made to date. This site is a great place to glean information, to find outside reference materials. I was not the first, nor will I be the last to fight this battle; study and make the best decisions you can for your situation.  We have found each member of this site to be on our side against this bandit; they will support you and your husband as well.

  • Will Doran
    Will Doran Member Posts: 207
    Cases all different

    Desperate,

    Sorry to hear of your husband's diagnosis.  All of our cases are different.  My case was simular to what Rooster02 stated. However my  PSA was 69, with a Gleason 3 + 4 =7.  I went to oncologists and weighed the options.  Decided on Robotic Assisted Surgery and had that Dec 2013.  Post surgery pathology showed one very small spot in one lymph node.  I was listed as a Stage pT3bN1.  Doctors said they were going to be very aggresive and they were.  I was treated as though I was a Stage 4.   After surgery, I started ADT and two months later started Radiation on the area where the Prostate had been , as clean up.  In two months time my PSA dropped to <0.010. I had 8 weeks of radiation 5 days per week, and two years on Lupron.   They had my Testosterone knocked down to 17.  Normal is 250 - 1,100.  My PSA has remaied undetectable since.  It had been holding at <0.010 for almost three years.  I've been off  the ADT (Lupron) for 9 months now, and my Testosterone is back up in the normal range .  It's now at 320.   With the "T" levels up, my PSA has come up a little bit to 0.035. They still call the undectable.  My doctors say that is OK for now.  If My PSA goes up to 2, then I will have to ga back on some form of ADT.  However we might have to start that sooner if we/they feel I'm in danger of Bone Involvement starting, or other spread.  I've had the same results as Rooster02 stated with followup MRI's.  I have Arthritis in my hips but my bones are otherwise fine, at this point.  I did have some bone density loss from the radiation and am currently on Prolia to help that situation.

    Make sure and research as much as you can on side effects, from all kinds of treatment.  As I said and as others have said what works for one of us is not always what will work for everyone.  I've told you what I've been through and how that has worked to this point. That way if your Husband is given these options you may know that I have had sucess from these treatments, so far.  I was originally told that If I did nothing, I'd probaly have two years to live.  After all I've been through I'm 3 years past diagnosis.  My doctors are now talking 10+ years down the road and talking what the next treatments might be, if needed.  However I'm not saying what I did  is the only way to be treated.  Thats' why it's very important to get all the opinions you can and study all the options. 

    Know that You and your Husband are in my thoughts and prayers.

    Love, Peace and God Bless

    Will

  • desperate for hope
    desperate for hope Member Posts: 44
    edited October 2016 #12

    Cases all different

    Desperate,

    Sorry to hear of your husband's diagnosis.  All of our cases are different.  My case was simular to what Rooster02 stated. However my  PSA was 69, with a Gleason 3 + 4 =7.  I went to oncologists and weighed the options.  Decided on Robotic Assisted Surgery and had that Dec 2013.  Post surgery pathology showed one very small spot in one lymph node.  I was listed as a Stage pT3bN1.  Doctors said they were going to be very aggresive and they were.  I was treated as though I was a Stage 4.   After surgery, I started ADT and two months later started Radiation on the area where the Prostate had been , as clean up.  In two months time my PSA dropped to <0.010. I had 8 weeks of radiation 5 days per week, and two years on Lupron.   They had my Testosterone knocked down to 17.  Normal is 250 - 1,100.  My PSA has remaied undetectable since.  It had been holding at <0.010 for almost three years.  I've been off  the ADT (Lupron) for 9 months now, and my Testosterone is back up in the normal range .  It's now at 320.   With the "T" levels up, my PSA has come up a little bit to 0.035. They still call the undectable.  My doctors say that is OK for now.  If My PSA goes up to 2, then I will have to ga back on some form of ADT.  However we might have to start that sooner if we/they feel I'm in danger of Bone Involvement starting, or other spread.  I've had the same results as Rooster02 stated with followup MRI's.  I have Arthritis in my hips but my bones are otherwise fine, at this point.  I did have some bone density loss from the radiation and am currently on Prolia to help that situation.

    Make sure and research as much as you can on side effects, from all kinds of treatment.  As I said and as others have said what works for one of us is not always what will work for everyone.  I've told you what I've been through and how that has worked to this point. That way if your Husband is given these options you may know that I have had sucess from these treatments, so far.  I was originally told that If I did nothing, I'd probaly have two years to live.  After all I've been through I'm 3 years past diagnosis.  My doctors are now talking 10+ years down the road and talking what the next treatments might be, if needed.  However I'm not saying what I did  is the only way to be treated.  Thats' why it's very important to get all the opinions you can and study all the options. 

    Know that You and your Husband are in my thoughts and prayers.

    Love, Peace and God Bless

    Will

    thank you Will

    Thank you Will. I appreciate you sharing your experience. I imagine that we will follow a similar course to yours but will wait for surgical findings first. 

    Glad to hear your survived the RT and Lupron. I hope it wasn't too difficult. I'm afraid my husband will become another person. 

  • rooster02 said:

    Our Decision Experience

    Desperate

    I am sorry you are now a member of this group. Your team approach gives you more issues to consider for treatments and the general effects of each treatment. The success of the treatment plan has a direct relationship to the quality of life you and your husband will experience as you make treatment decisions.

    Old Salt, Max and others have made suggestions, based on their treatment choices, all worth considering. My wife and I made decisions in 2016 which have lasting effects; positive and negative; short term and long term.

    January 2016, annual physical PSA test at our family doctor's was slightly elevated - 6.1, previous test 4.2 - 63 years of age.

    February 2016, referred to Urologist for digital examine and then a 12 core biopsy two weeks later.  9 of the 12 cores were 100% hot, lab returned a sore - Gleason 3+4=7. A MRI and bone scan would follow in the next 15 days. Subsequent X-rays were taken of question areas which were determined to be osteoarthritis. Both the MRI and bone scan were negative.

    Mach 2016, research, discussion, and prayer. I happen to work at a large hospital, providing many varied opinions on how to address this cancer.

    April 6th our choice to have the prostate removed was completed robotically. The post-operative pathology report, for us, confirmed we had made the best choice in our situation, in our opinion. The post-operative pathological report of the gland was not what I had hoped for: 70% tumor, Gleason's grade 9 (4+5). Of more concern was the margins: bladder neck - positive bilateral, perineural invasion-positive, extraprostatic extension-positive, seminal vesicles-positive right.

    Stage: pT3b. NX.

    My cancer was not contained to the prostate only, The link to my specific history can be found in my September 30th posting “Adjuvant IMRT”.

    September 2016, we are now in the middle of Adjuvant IMRT treatments. These treatments were started about as quickly as you can after surgery, only a 5-month healing span. The aggressiveness of my specific cancer has had an impact on our treatment decisions.  

    We wanted to remove as much of the cancer as possible surgically, then address any remaining hot spots through a radiation oncologist. There are side effects to surgery we are dealing with; learning to live with. Will these side effects get better, lessen in time, possibly?

    This summary is only a reference, a little insight as to our pathway in fighting the bandit, the decisions we have made to date. This site is a great place to glean information, to find outside reference materials. I was not the first, nor will I be the last to fight this battle; study and make the best decisions you can for your situation.  We have found each member of this site to be on our side against this bandit; they will support you and your husband as well.

    Thanks for sharing Rooser

    I guess a big part of the decision might relate to your age. My husband is 60 and we have a son just entering high school. 

    Did you consider adjuvant ADT at the same time as adjuvant IMRT? Also, what does NX mean? I thought the options were N0 and N1. 

    Thanks again. I really appreciate your input

  • mikedayton62
    mikedayton62 Member Posts: 22
    edited October 2016 #14

    Different Person.

    Desperate,

    Yes, you do become a different person.  It happend slowly and I didn't notice it, until my Testosterone started coming back up, and now I'm back to feeling like my normal self.  I got to the point I really didn't care much about what was going on around me.  That has all changed back to normal.  My wife and I try to make light of that and laugh about it at times.  Some of the changes were actually for the better.  There are things that I used to really be very particular about. Like clean windows, well manicured lawn, spotless clean cars, etc. I NEVER used automatic car washes.  Now, they do the job just fine, and it saves me so much time.   Now some of those things really don't seem important anymore.  In the end it's not going to make a difference anyway. We work on that kind of stuff when we have time, unless we have something we want to do together to enjoy each other's company.  Like going for drives, fall "Leaf Peeking", and such things. 

    There will probably be times when your husband doesn't want to talk about his situation.  I was that way.  My wife was always there and still is here for support, but she never "pushed". Communication is very important.   If I wanted to talk she was and is a very good listener.  My most hated thing was and still is that I really don't want to have to explain my situation to other people and especially family members.  Family members can be the worst.  Especially those who have to know every detail so they can gossip about it to others.  I also get very upset, at times, with those who think I've done the Surgery, Radiation and Hormone Treatments and now everything is done and over with and I should be fine.  Well, as we all know, you are never over this.  Cancer is always the beast hanging over you head.  Given the right conditions it will be back.  This has been a real problem with my mother-in-law.  My wife has had to get rather short at times and tell her mother point blank to "Knock it off" when she's around me.  That didn't go over too well at first, but now, "Mother-in-law" stays out of my face.

    And don't be surprise if at times your husband just sits and cries.  If so, please be understanding.  Crying can be good medicine at times.  I did a lot of that when my testosterone was down to 17.  Now, that I'm back in the normal range for "T" levels, Not so much, but sometimes I just sit with a blank stare, and think.

    Enjoy every day and moment together and, Think about the Quality of Life.

    Love, Peace and God Bless

    Will

    You are absolutely correct, Will

    A PCa diagnosis definitely changes one's perspective, and causes one to realign his priorities. Same thing for the ladies impacted by PCa in their significant other.

  • Will Doran
    Will Doran Member Posts: 207
    Different Person.

    Desperate,

    Yes, you do become a different person.  It happend slowly and I didn't notice it, until my Testosterone started coming back up, and now I'm back to feeling like my normal self.  I got to the point I really didn't care much about what was going on around me.  That has all changed back to normal.  My wife and I try to make light of that and laugh about it at times.  Some of the changes were actually for the better.  There are things that I used to really be very particular about. Like clean windows, well manicured lawn, spotless clean cars, etc. I NEVER used automatic car washes.  Now, they do the job just fine, and it saves me so much time.   Now some of those things really don't seem important anymore.  In the end it's not going to make a difference anyway. We work on that kind of stuff when we have time, unless we have something we want to do together to enjoy each other's company.  Like going for drives, fall "Leaf Peeking", and such things. 

    There will probably be times when your husband doesn't want to talk about his situation.  I was that way.  My wife was always there and still is here for support, but she never "pushed". Communication is very important.   If I wanted to talk she was and is a very good listener.  My most hated thing was and still is that I really don't want to have to explain my situation to other people and especially family members.  Family members can be the worst.  Especially those who have to know every detail so they can gossip about it to others.  I also get very upset, at times, with those who think I've done the Surgery, Radiation and Hormone Treatments and now everything is done and over with and I should be fine.  Well, as we all know, you are never over this.  Cancer is always the beast hanging over you head.  Given the right conditions it will be back.  This has been a real problem with my mother-in-law.  My wife has had to get rather short at times and tell her mother point blank to "Knock it off" when she's around me.  That didn't go over too well at first, but now, "Mother-in-law" stays out of my face.

    And don't be surprise if at times your husband just sits and cries.  If so, please be understanding.  Crying can be good medicine at times.  I did a lot of that when my testosterone was down to 17.  Now, that I'm back in the normal range for "T" levels, Not so much, but sometimes I just sit with a blank stare, and think.

    Enjoy every day and moment together and, Think about the Quality of Life.

    Love, Peace and God Bless

    Will

  • Will Doran
    Will Doran Member Posts: 207

    You are absolutely correct, Will

    A PCa diagnosis definitely changes one's perspective, and causes one to realign his priorities. Same thing for the ladies impacted by PCa in their significant other.

    Wives, as well.

    Mike,

    Yes, at times I think this is harder on the wives than on us.  We just have to do what is suggested and let the treatments do their job.  The wives have the constant worry of the future.  My wife has had to take on some jobs that I used to do.  Especially with work in the yard.  We now go out there together,  Me on my tractor to cut the grass and her with her light weight rechargable weed whacker and we do the yard.  She has had to add some of these jobs onto all of what she always did on a day to day basis.  She's been a real trooper through all this.  I'd be a total wreck if it weren't for my wife. 

    God bless all of our wives,

    Will

  • Clevelandguy
    Clevelandguy Member Posts: 757 Member
    edited October 2016 #17
    Treatment plan

    Hi,

    Have you completed all the tests needed to make a final decision yet?  If you don't feel that your doctors are giving you a good shake then I would consult other doctors until you find one or several that you feel comfortable with.  
    Big decision to make, be informed, study, study, consult, you and your husband along with all the info can make the right decision for your particular case. PCa comes in many forms(inside or outside of the gland), each one has a tailored treatment designed by you and your doctors.

    Dave

    3+4

  • VascodaGama
    VascodaGama Member Posts: 3,501 Member
    Gathering evidence before deciding

    Desperate,

    Survivors above have provided you with great information. They are great members of this forum and provide the best opinions to follow. Their status were similar to your husband's but any treatment protocol you chose can differ from the outcomes above posted even if you decide on the same option. I think your best shot in confronting the problem is what you are doing in being as much informed as possible, reading about the cancer, the treatments and their side effects, gathering evident data on his status through tests and exams (the best available type of techniques) and from second opinions done by PCa specialists. 
    The last "action" will be to get together and discuss about a solution that both feel comfortable in. You need to include considerations to family finances, your young child schooling and the quality of life. 

    Surely you can go the sequential you have commented in your first post. However, you need to consider the risks and side effects your husband will be confronting. In other words, avoiding treatments that can not assure cure and opting for something not perfect but that can assure similar results at lesser risks, may become a better choice.

    Above you say that "My husband's overall priority is to prolong his life and enjoy his family and grandchildren". At the moment from the info you share here, I cannot see any reason for such wish not being achieved. There is no indication that you are confronting the worse case. Surely it is not also contained. Your info of 12/12+ (all cores positive) and the Gleason score 9 confirms the title of your thread; High risk localized case, and this means you can look for a treatment aiming at cure, not just in prolong his life.

    The negative Bone scan also rules out far bone metastases (M0). The CT result is most probable a false negative. If you want to confirm the existence of localized extracapsular extension such as lymph node involvement (N1) you should opt for an image study done by modern techniques using the latest contrast agents and PET scans. N0 M0 is just the answer by his physician on the results of the image studies. NX would have been more appropriate indicating that the data on lymph nodes is not available/recognized.

    In respect of the above, I think that aiming a radical is feasible, but surgery (RP) would be used only for the purpose of debulking. Radiation (RT) seem to be more appropriate providing a higher chance at cure even without surgery intervention. To such extent a better image for locating cancer hideaways would help in planning a better field of RT attack. We cannot throw arrows in the dark and expect them to hit the bulls eye.

    Hormonal treatments (HT, ADT) are palliative so that their inclusion in the combined therapy would only be useful for improving RT action. Surely you could also chose HT as the prime and solo therapy if you give preferences to extended life at lesser risks, but no cure. HT can also be used to pospone a RT therapy at no loss of treatment efficassy, this means that your husband can start already HT while investigating on a type of radiation, however, if surgery is an option than discuss firstly with your surgeon; he may not like to operate under HT effects.
    HT provide long periods of control in the advancement of the cancer if the cancerous cells are hormone dependent. One can get a clue of his own type of cells through a genetic test similar to the Decipher test.

    I recommend you to forget about those comments regarding RT before or after RP as means of a decision, or even in chosing surgery for the sake of obtaing a pathologist report. It is better to continue your researches collecting reliable data before deciding. Do things coordinately and timely. A PCa case does not become worse overnight. The majority of Gs9 patients spend tow to four months in the process of decision making, from diagnosis to therapy.

    Best wishes and luck in his journey. You are simply wonderful.

    VGama

  • Old Salt
    Old Salt Member Posts: 910 Member

    Options not offered!

    Thank you very much. I'm so glad you commented and that you shared your traetment about SBRT and IMRT. Only high dose brachytherapy followed by EBRT were mentioned in the list of options given to us in a brochure for all PCa patients. It seems like your treatment options are not available at the cancer center we went to. 

    We are seeing another Rad Onc at a bigger center this week. 

    I attended a PCa meeting and a few men told me that if you have surgery, you can always do radiation after but if you start with radiation, surgery is not a likely possibility. Recent literature has reported benefits to survival for RP even for selected metastic patients. 

    How have you been feeling since your treatment? 

     

    Some background

    Thanks for your concern. I am currently feeling fine.

    Some background might be of interest to you and your husband:

    When my urologist told me that I had several Gleason 9 (4+5) tumors in my prostate, I (73 years of age at the time) obviously worried. His proposed treatment plan would be (Low Dose) brachytherapy (to kill tumors within the prostate) followed by External Beam Radiation (IMRT; 45 sessions to hit the prostate in a more uniform manner, as well as tissues surrounding the prostate). Note that he did NOT propose surgery; bless his heart!

    Although this treatment plan made good sense to me, I did explore other options. To make a long story short, I settled on a treatment plan consisting of three sesssions of SBRT, followed by 25 sessions of IMRT. Major reasons for this: 1. Much shorter (less expensive). 2. I really liked the radiation oncologist (academic; many publications; many patients) 3. State of the art equipment (CyberKnife for SBRT) at a nationally recognized cancer center.

    Note that both treatment plans (urologist and rad oncologist) would superimpose hormone therapy. Initially, the plan was to go for 24 months, but based on recent findings (at the time), this was shortened to 18 months. I did not complain!

    My PSA dropped to a low of 0.1 (during treatment) and after my testosterone recovered (this took about six months after the end of the hormone treatment) has held steady at 1.4 ng/mL for a year now. Published papers indicate that the biochemical control rate for the treatment that I received is about 70% after five years for HIGH-RISK patients. This means that I am not 'out of the woods' forever. But for now, I am extremely grateful for the care I received.

    The side effects of the treatment were manageable and my current 'Quality of Life' is excellent.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,725 Member
    edited October 2016 #20

    Thank you for your response.

    Thank you for your response. We did consult with surgeon and Rad. Onc. The Rad Onc seemed said it didn't matter which way we went, the outcomes were similar. However, I've been reading that RP + RT + ADT might lead to the best survival outcome. I wondered about the treatment that others with similar cancers had. 

    I live in Canada and the guidelines for PSA screening are NOT to have an informed discussion but screening but rather not to mention it. If the man brings it up the guidelines encourage informing him of all of the negatives associated with it. 

     

     

    My read of his comments....

     I believe what the radiation oncologist was referring to when he told you, "it doesn't matter which way you go" (surgery or radiation) is the outcome of either of those two treatments being employed agains all first-line PCa patients.  Nothing else makes sense.

    But: most first-line (ie, never before treated) PCa patients begin with incipient, early disease; no the sorts of results that your husband has.

    Several guys who did begin with terrible numbers have shared their inspiring and successful histories.  As Vasco noted below, do not assume the worst in this; keep fighting for answers. And you do need oncologists who are expert in advanced disease .  I would ask them directly: What do yo know about late-stage treatments?

  • desperate for hope
    desperate for hope Member Posts: 44
    edited October 2016 #21

    Treatment plan

    Hi,

    Have you completed all the tests needed to make a final decision yet?  If you don't feel that your doctors are giving you a good shake then I would consult other doctors until you find one or several that you feel comfortable with.  
    Big decision to make, be informed, study, study, consult, you and your husband along with all the info can make the right decision for your particular case. PCa comes in many forms(inside or outside of the gland), each one has a tailored treatment designed by you and your doctors.

    Dave

    3+4

    Thanks Dave

    It seems we cannot get an MRI which I understand might be beneficial to predict local spread to SVI, LN and ECE. We could go to the USA and pay out of pocket. I'm not sure what kind of MRI to ask for. 

    Yes, making the best decision is critical because if things don't go well, then we can at least know we made the best decisions we could.