New diagnosis of Prostate Cancer

Clay Jars
Clay Jars Member Posts: 9
in Prostate Cancer #1

My husband has just been informed that he has prostate cancer. He is seeing a urologic oncologist at UCSF and we feel he is getting great care. So far, we know his gleason score of 9 indicates an aggressive cancer and he has been scheduled for surgery on March 15th. Before then he is to have a total body bone scan as well as a PSMA PET/CT. It is difficult to know the course until we get the results of these tests and know if it has spread. I'm sure all of you are familiar with the agony of waiting. Some of you are so knowledgeable and have fantistic input for those of us who are just beginning the journey so I look forward to your input. From previous discussions that I've read, I suspect you'll want a few more details so here you go:

My husband is 65 yrs old and has been monitored for a couple of years with BPH believed to be the cause of flow problems. Last November his PSA had risen to 4.4 so they did a scope in office and a 4K blood test prior to considering a TURP. Since the 4K came back high (5.67 with 34% score), he was referred for a biopsy. After doing some research, we decided to go to UCSF's Urology Oncology Dept for the biopsy. He had an MRI/ultrasound targeted biopsy and received the results a few days ago. The cancer was in the anterior lobe and was given a gleason score of 9. The doctor said he felt they had caught it early. Unfortunately, he received the call while out and about so we still have many questions and are waiting to hear back from the doctor. The doctor discussed both radiation and surgery but felt surgery was the best option considering my husbands (relatively) younger age and good health.

All of this seems surreal right now. We are trying to keep our eyes on Jesus and have an incredibly supportive community of friends, family, and church family who are praying for us. One of our family members is very knowledgeable and does alot of research (credible, evidence based). She is strongly encouraging us to seek a second opinion through Johns Hopkins as some of you have suggested to others. I'm just not sure at this time if this is warranted and would love input on that.

Thanks to all of you who have shared and encouraged so many others,

Clay Jars

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Comments

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited February 2017 #2
    Surgery?

    I am not an "expert" on advanced stage prostate cancer but I must say that it is highly unusual to treat a patient at Gleason 9 with surgery because it is almost certain that the cancer has spread beyond the prostate with such an evolved cancer. 

    It also doesn't matter how old the patient is, the risks of surgery are so severe that I don't think anyone w/PCa should subject himself to it unless there is no other treatment alterative available and there are ALWAYS alternatives to surgery available.

    I know that you said your husband got a MRI/ultrasound done but did he also get an MRSI/MRI - 3T spectrocopic MRI done?  If not, ask for it before he agees to surgery. 

    What the MRSI/3T MRI does is scan for the presence of choline which is a marker for cancer and if ANY of the cancer shows up beyond the prostate cancer, you should definitely NOT submit to surgery.

    You can have the entire prostate and suspected cancererous adjoining areas treated w/radiation by means of IMRT (intensity modulated radiation therapy, which is the most common method of radiation treatment) or CK (which is the most precise and advanced method of radiation treatment currently available) and he can also receive supplemental hormone and/or chemotherapy treatments as well. 

    Others here can speak in a more informed way about hormone and/or chemo than I can but you should definitely have an MRSI/MRI 3T scan done to determine the full extent and location of the cancer before you agree to surgery or any other form of treatment.

    Good luck!

    BTW, I was treated successfully at UCSF for my Gleason 6 by Dr. Gottschalk (the Head of the CK Dept) at the Helen Diller Center on Divisdero back in 2010.  

    I also had an MRSI/MRI done at UCSF as far of my treatment and diagnosis when it appeared that there might have been a recurrence; fortunately, that was not the case.  Point is,  the procedure is available at UCSF and you should ask for it.

     

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited February 2017 #3
    Deciding on a therapy

    Clay Jars

    Welcome to the board. In my opinion your husband is following the proper steps. After the bone scan and PSMA PET/CT he will be given a clinical stage based on the pathologist report (biopsy), any DRE, the PSA and past BPH case. UCSF is also a place to trust but your husband and you will be the ones to decide, so I question his doctor's prompt suggestion on surgery solo based on his "younger age and good health".
    Decisions on treatments for prostate cancer (PCa) are done on due diagnosis, higher assurances in cure and lesser side effects. This is what to procure before scheduling a therapy. You need to educate on the matter, obtain second opinions and create such confidence on an option in which you feel that you can rely.

    Being young is a plus when one needs time to treat failed therapies or recuperate from treatments that went wrong. The age is also considered when a patient confronting a difficult advanced case is recommended for sequential/combined type of therapies. For instance; surgery to be followed by adjuvant radiotherapy plus an hormonal component.

    Overall that decision is done by guessing the location of the cancer. Contained cases (the whole cancer inside the gland) have the high marks for cure by both radicals (surgery and radiotherapy). Localized (but not just contained) have lesser chances in cure via surgery alone. Radiotherapy (RT) becomes more practical for localized cases as it covers the gland and surrounding areas of the prostate. In advanced cases some are advised to debulk/dissect the whole gland (representing a big tumour) and follow with RT, both therapies in one protocol.

    From the data you share above, the most critical seems to be the presence of Gleason rate (4) and (5), and past urination problems. Gleason score 9 is a classification for poorly differentiated cells that typically produce small amount of PSA and spread. These are aggressive types of cancer. The biopsy report may have provided info on BPH if hyperplasia conditions were present. Positive confirmation could rule out the presence of cancer in the prostate base (just below the bladder), which area is difficult to be radiated without some injury to the sphincter. This info together with the image study will help in deciding if surgery against IMRT is better or if SBRT (CK) can still be recommended.

    I think it better you prepare a list of questions after researching on the above and consult with several specialist of the two options (surgery and radiotherapy). Your family member (knowledgeable on PCa) may help you to get details on the side effects in different treatment protocols. JH is famous for being good in second opinions. I would suggest you to send them the total number of biopsy cores together with the results from the image exams and other pertaining data for them to opinion on a diagnosis and treatment.

    I understand you both being stressed with the situation. You need to act but not rush. The present condition would not alter in two/three months. Move coordinately. Be positive and trust your decisions.

     Best wishes and luck.

    VGama

  • Clevelandguy
    Clevelandguy Member Posts: 1,212 Member
    #4
    More imaging tests?

    Hi,

    I think I would get more imaging tests done to try and pinpoint as clearly as possible where the cancer lies in his prostate.  If it appears to be outside of the gland then maybe radiation would be better.  If it's totally inside of the gland then surgery could be an option.  Definately you need to see both the urologist and an oncology doctors to get both sides of what is going on.  Then study all the various treatment plans for PCa plus their side effects and come to a decision on which way to go.  Sounds like you are on the right path, keep asking questions...............

     

    Dave 3+4

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    Choices

    Clay Jars,

    Your husband benefits from being at one of the best cancer treatement centers in the world already.  Unless you have money like Donald Trump, I don't see how travelling the nation for more opinions would be of value.   If you were at a local-yokel hospital in the heartland, I might recommend differently.

    Your surgeon is indoubtedly giving you sound advice regarding a treatment choice, but defiinitely contiue with the best scanning available, and consult with a radiation oncologist.

    Very generally, Gleason 9 is assumed to have escaped the capsule, unless there is certainty to the contrary, and such certainty is essentially impossible to come by with current imaging technology.  Very generally, any initial case that is outside the gland is recommended for radiation, not surgery.  I say this as a patient who had great success with surgery myself. But my disease was Gleason 6, and of limited volume, as determined by biopsy.

    Before choosing surgery I would require the surgeon to make a compelling case for why he believes there is not extra-capsular escape.  And make a radiation oncologist make his best arguments as well.

    We have this gift in earthen vessels.  

    So true,

    max

     

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited March 2017 #6
    A lot of good advice so far

    Let me just add that a PSMA scan is 'state of the art'; available only at a few hospitals in the USA. The results should be very infomative for mapping out a course of action. In that context, I want to emphasize to please look seriously at the radiation options.

    You could contact Alex Gottschalk (Dept of Radiation Oncology, UCSF); he has published on treating high-risk patients with radiation (Anwar et al. 2016).

  • Clay Jars
    Clay Jars Member Posts: 9
    #7
    Old Salt said:

    A lot of good advice so far

    Let me just add that a PSMA scan is 'state of the art'; available only at a few hospitals in the USA. The results should be very infomative for mapping out a course of action. In that context, I want to emphasize to please look seriously at the radiation options.

    You could contact Alex Gottschalk (Dept of Radiation Oncology, UCSF); he has published on treating high-risk patients with radiation (Anwar et al. 2016).

    imaging and decisions

    Wow, alot of great comments and advice. We spent the greater part of the last 2 days getting appointments set up for the total body bone scan and CT scans this week and next. My husband will be part of the PSMA trial at UCSF so will have the benefit of that scan as well but they have to have the other scans first. We have requested a consultation with the surgeon, urologic oncologist and radiation oncologist before proceeding with surgery. Several of you made strong cases to consider radiation over surgery so we will continue to do our research before making decisions. We are just missing important pieces of information at this time. The doctor who did the biopsy stated he thought the cancer was "well confined" so it's a little disheartening to hear that gleason scores of 9 have usually spread. We'll know more after the CT and bone scans.

    Thank you all for so much information. I will read through them more carefully tomorrow and push on to get a meeting of the different disciplines scheduled at UCSF. Thank you also for the contact name in the Dept of Radiation Oncology at UCSF - I will pursue that. I'm sure I'll have more questions.

  • Clay Jars
    Clay Jars Member Posts: 9
    edited March 2017 #8
    Max Former Hodgkins Stage 3 said:

    Choices

    Clay Jars,

    Your husband benefits from being at one of the best cancer treatement centers in the world already.  Unless you have money like Donald Trump, I don't see how travelling the nation for more opinions would be of value.   If you were at a local-yokel hospital in the heartland, I might recommend differently.

    Your surgeon is indoubtedly giving you sound advice regarding a treatment choice, but defiinitely contiue with the best scanning available, and consult with a radiation oncologist.

    Very generally, Gleason 9 is assumed to have escaped the capsule, unless there is certainty to the contrary, and such certainty is essentially impossible to come by with current imaging technology.  Very generally, any initial case that is outside the gland is recommended for radiation, not surgery.  I say this as a patient who had great success with surgery myself. But my disease was Gleason 6, and of limited volume, as determined by biopsy.

    Before choosing surgery I would require the surgeon to make a compelling case for why he believes there is not extra-capsular escape.  And make a radiation oncologist make his best arguments as well.

    We have this gift in earthen vessels.  

    So true,

    max

     

    Choices

    Thanks for your comments and vote of confidence for UCSF. As I said to Old Salt, it's disheartening to be told that Gleason 9 is assumed to have escaped. I hope the doctor didn't give us false hope when he said he felt the cancer was "well confined." We need to ask him why he believes that. CT scan is this Friday, Bone scan is in a week so we'll know more then. Once those are done my husband will get a PSMA PET scan which cutting edge. I'd like to know why you say Gleason 9 is assumed to have escaped - could you recommend some resources so I can be better informed? Thank you.

    God is good and faithful,

    Clay Jars

  • Clay Jars
    Clay Jars Member Posts: 9
    edited March 2017 #9
    VascodaGama said:

    Deciding on a therapy

    Clay Jars

    Welcome to the board. In my opinion your husband is following the proper steps. After the bone scan and PSMA PET/CT he will be given a clinical stage based on the pathologist report (biopsy), any DRE, the PSA and past BPH case. UCSF is also a place to trust but your husband and you will be the ones to decide, so I question his doctor's prompt suggestion on surgery solo based on his "younger age and good health".
    Decisions on treatments for prostate cancer (PCa) are done on due diagnosis, higher assurances in cure and lesser side effects. This is what to procure before scheduling a therapy. You need to educate on the matter, obtain second opinions and create such confidence on an option in which you feel that you can rely.

    Being young is a plus when one needs time to treat failed therapies or recuperate from treatments that went wrong. The age is also considered when a patient confronting a difficult advanced case is recommended for sequential/combined type of therapies. For instance; surgery to be followed by adjuvant radiotherapy plus an hormonal component.

    Overall that decision is done by guessing the location of the cancer. Contained cases (the whole cancer inside the gland) have the high marks for cure by both radicals (surgery and radiotherapy). Localized (but not just contained) have lesser chances in cure via surgery alone. Radiotherapy (RT) becomes more practical for localized cases as it covers the gland and surrounding areas of the prostate. In advanced cases some are advised to debulk/dissect the whole gland (representing a big tumour) and follow with RT, both therapies in one protocol.

    From the data you share above, the most critical seems to be the presence of Gleason rate (4) and (5), and past urination problems. Gleason score 9 is a classification for poorly differentiated cells that typically produce small amount of PSA and spread. These are aggressive types of cancer. The biopsy report may have provided info on BPH if hyperplasia conditions were present. Positive confirmation could rule out the presence of cancer in the prostate base (just below the bladder), which area is difficult to be radiated without some injury to the sphincter. This info together with the image study will help in deciding if surgery against IMRT is better or if SBRT (CK) can still be recommended.

    I think it better you prepare a list of questions after researching on the above and consult with several specialist of the two options (surgery and radiotherapy). Your family member (knowledgeable on PCa) may help you to get details on the side effects in different treatment protocols. JH is famous for being good in second opinions. I would suggest you to send them the total number of biopsy cores together with the results from the image exams and other pertaining data for them to opinion on a diagnosis and treatment.

    I understand you both being stressed with the situation. You need to act but not rush. The present condition would not alter in two/three months. Move coordinately. Be positive and trust your decisions.

     Best wishes and luck.

    VGama

    Decisions

    Thank you VGama,

    I especially appreciate the information on the various therapies. It would be good to be more informed and prepared with questions prior to meeting with the surgeon and radiation oncologist. You make a good point regarding the doctor's quick suggestion for surgery before we even have the scans completed. It is good that we'll have time to meet with the various disciplines before proceeding with surgery. Plus we'll have alot more information from the scans when we do meet with them. Can you please pass on some resources to help us prepare for our meeting and the decisions we'll need to make?

    Thank you,

    Clay Jars

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    edited March 2017 #10
    Preparing for your meetings and decision

    Clay Jars,

    To answer your above request on preparation and decision making, I would suggest you to firstly inform the hospital that you need time to decide on a treatment so that you want to postpone the scheduled surgery for a latter date. If they say that the doctor is not available later then change doctors. However, if the PSMA trial involves this particular doctor then wait till the exam is done to inform on your decision. Do not allow to be coerced by them.
    The second suggestion is that you get copies and file the data from tests, reports and image studies which surely will be needed in other occasions.

    Regarding the list of questions, you may get ideas from below links. In particular, you need to know the number of cores found positive in the biopsy, and their percentage in terms of cancerous against benign tissue. Another question regards their opinion on the urination problem (could that be caused by cancer tumours or did the pathologist find hyperplasia tissue?). Was the DRE (digital rectum examination) positive?

    https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html

    http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

    Please note that CT and traditional MRI are not reliable as a tool to locate/detect cancer that is microscopic or of small sizes. The PSMA PET scan is the most appropriate to identify prostatic tissue. I wonder about the trial scope but maybe it involves the comparison of the exams. A PSMA PET against a CT (alone) or/and Bone scan. This PSMA PET is the reason why I told you before that you are on the right path.

    Another aspect that I would suggest you to investigate/inquire is on the side effects and the loss of the quality of life. Incontinence, erection dysfunction, proctitis, colitis, urination frequency/retention and bone loss are risks evident from the radical treatments. Your husband may get cured and will enjoy life but he will never return to the same status he got at present.

    There are also other aspects that I would recommend you to consider. One is to get now tests regarding; cardiovascular issues and bone health (osteopenia/osteoporosis, PCa likes to spread to weaken bone), lips, liver and kidney markers (low filtration rate and high creatinine prohibit the use of contrast agents), Testosterone, etc.

    A practical guide to prostate cancer matters;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news]=365457&cHash=b0ba623513502d3944c80bc1935e0958

    Diet and a change in live tactics become important to counter the treatment effects. UCSF got a publication on Nutrition & Prostate Cancer, which copy I highly recommend you to get. Here;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

    Best wishes,

    VGama

  • Clay Jars
    Clay Jars Member Posts: 9
    #11
    VascodaGama said:

    Preparing for your meetings and decision

    Clay Jars,

    To answer your above request on preparation and decision making, I would suggest you to firstly inform the hospital that you need time to decide on a treatment so that you want to postpone the scheduled surgery for a latter date. If they say that the doctor is not available later then change doctors. However, if the PSMA trial involves this particular doctor then wait till the exam is done to inform on your decision. Do not allow to be coerced by them.
    The second suggestion is that you get copies and file the data from tests, reports and image studies which surely will be needed in other occasions.

    Regarding the list of questions, you may get ideas from below links. In particular, you need to know the number of cores found positive in the biopsy, and their percentage in terms of cancerous against benign tissue. Another question regards their opinion on the urination problem (could that be caused by cancer tumours or did the pathologist find hyperplasia tissue?). Was the DRE (digital rectum examination) positive?

    https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html

    http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

    Please note that CT and traditional MRI are not reliable as a tool to locate/detect cancer that is microscopic or of small sizes. The PSMA PET scan is the most appropriate to identify prostatic tissue. I wonder about the trial scope but maybe it involves the comparison of the exams. A PSMA PET against a CT (alone) or/and Bone scan. This PSMA PET is the reason why I told you before that you are on the right path.

    Another aspect that I would suggest you to investigate/inquire is on the side effects and the loss of the quality of life. Incontinence, erection dysfunction, proctitis, colitis, urination frequency/retention and bone loss are risks evident from the radical treatments. Your husband may get cured and will enjoy life but he will never return to the same status he got at present.

    There are also other aspects that I would recommend you to consider. One is to get now tests regarding; cardiovascular issues and bone health (osteopenia/osteoporosis, PCa likes to spread to weaken bone), lips, liver and kidney markers (low filtration rate and high creatinine prohibit the use of contrast agents), Testosterone, etc.

    A practical guide to prostate cancer matters;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news]=365457&cHash=b0ba623513502d3944c80bc1935e0958

    Diet and a change in live tactics become important to counter the treatment effects. UCSF got a publication on Nutrition & Prostate Cancer, which copy I highly recommend you to get. Here;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

    Best wishes,

    VGama

    Preparing

    You have given me some terrific resources - thank you! We finally received the pathology report yesterday; it is so helpful in understanding more of what is being discussed. My husband has been followed for at least a couple of years and the DRE has always been negative. It wasn't until his flow symptoms worstened and his PSA increased to 4.4 that they started looking further. His initial visit at UCSF was an ultrasound which showed a diffuse atypical lesion which the doctor felt was not cancer (in fact, I believe it was not. The tumor was not seen on ultrasound). They subsequently did an MRI (a most unpleasant experience) which I have yet to get a report of the results, however, the pathology report says it revealed an estimated prostatic volume of 53 cc. The biopsy results include 14 cores of which 6 were cancer: 2 gleason 9, 5% involvement; 3 gleason 6, 3 to 11% involvement; 1 gleason 7, 3% involvement plus perineural invasion present. No extraprostatic tumor was seen in any of the samples. I don't see any mention of hyperplasia but they do say there is chronic and/or acute inflammation in 4 of the areas. I sent a question to the doctor as to whether they should be treating that inflammation, and I wonder if that is what's causing my husband to feel like crap. This may be far more information than YOU wanted but somehow I felt compelled to share. Thank you also for the recommendations of tests re: cardiovascular health, etc. Blood tests and EKG are part of his workup but we hadn't thought about bone density tests. Testosterone has been low for years and he was getting TRT - in hindsight it probably wasn't the best thing.

    Thankfully surgery is planned a month away so we have time to address questions. Surgery is not set in stone, especially after reading everyone's comments yesterday. I will more strongly insist on a multidisciplinary meeting and have requested that Dr. Alex Gottschalk be included, but that may be a pipe dream. At any rate I know a radiation oncologist will be a part of the team.

    I am a retired dietitian so I will look very carefully at the nutrition recommendations - I think my husband will be especially motivated to follow a more plant based diet (sigh, a challenge for all of us). Thankfully, he is pretty fit and exercises regularly. We are acutely aware of the implications of treatment and how it will change our lives forever. The main goal for us is longevity - we have lots of retirement plans, especially to see our grandchildren grow up. 

    I am about rung out right now and will divorce myself from the computer for the rest of the day. I cannot even think of any more questions right now though I know I should have many. Again, thank you.

    Clay Jars

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #12
    Your husband will do well. Be positive,

    Clay Jars,

    You are welcome.

    We survivors in this forum like to share the information and try to be very specific so that those reading, but not participating, can also benefit from our exchanged posts. Do not feel compelled in sharing it.

    From your descriptions, I now can understand better your husband's situation. Pathologists only comment on findings. It will be the urologist that will then guess on the situation. Calculi is not indicated so that one doesn't know what is causing the inflammation. I think that his urologist should recommend a protocol of anti-inflammatory drugs but it wouldn't be necessary if he plans already to dissect the whole gland (that includes the inflammation and everything with it).
    The inflammation also justifies the glands volume (53 cc) which most probably is the reason behind his past urination issues (a typical gland size is 20 to 35 cc).

    The other elements in the pathologist report and added info from you tend to indicate that your husband's case has high probability for not being contained. In my lay opinion, the most particular aspects that are risk factors for spread, are; the 6 out of 12 cores positive; Gleason score 9; Perineural invasion (typical route for cancer escape); Big gland in the presence of low levels of PSA (typical of aggressive types).
    One note to be included in your list of questions regards the choice in the type of radiotherapies. In some cases, big prostates limit the choice to IMRT/IGRT. You should get informed in case you decide to take that route.

    TRT is not recommended when the bandit exists. However some doctors believe that constant low levels of testosterone are linked to the origins of prostate cancer. The use of TRT in prostate cancer is in fact controversial. Nobody knows if the cancer gets worse (upgrade Gleason rates) or if absorbed/injected T has no influence on the cancer at all. Hypogonadism can be battled with estrogen patches too that are better for the kidneys and wouldn't be used by the bandit.

    I think that the PSMA Pet will provide you with a definite solution and peace of mind. This is just a bad chapter in your lives. You will accomplish your retirement plans and enjoy seeing your grandchildren grow up.

    If I may ask, can you share your idea of a diet good for us PCa patients? I was diagnosed recently with renal defficiency which situation prohibits me from getting a 68Ga PSMA PET exam to locate the bandit. I would think that your husband is fit for image studies using contrasts.

    Best wishes and luck.

    VGama

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited March 2017 #13
    Clay Jars said:

    Preparing

    You have given me some terrific resources - thank you! We finally received the pathology report yesterday; it is so helpful in understanding more of what is being discussed. My husband has been followed for at least a couple of years and the DRE has always been negative. It wasn't until his flow symptoms worstened and his PSA increased to 4.4 that they started looking further. His initial visit at UCSF was an ultrasound which showed a diffuse atypical lesion which the doctor felt was not cancer (in fact, I believe it was not. The tumor was not seen on ultrasound). They subsequently did an MRI (a most unpleasant experience) which I have yet to get a report of the results, however, the pathology report says it revealed an estimated prostatic volume of 53 cc. The biopsy results include 14 cores of which 6 were cancer: 2 gleason 9, 5% involvement; 3 gleason 6, 3 to 11% involvement; 1 gleason 7, 3% involvement plus perineural invasion present. No extraprostatic tumor was seen in any of the samples. I don't see any mention of hyperplasia but they do say there is chronic and/or acute inflammation in 4 of the areas. I sent a question to the doctor as to whether they should be treating that inflammation, and I wonder if that is what's causing my husband to feel like crap. This may be far more information than YOU wanted but somehow I felt compelled to share. Thank you also for the recommendations of tests re: cardiovascular health, etc. Blood tests and EKG are part of his workup but we hadn't thought about bone density tests. Testosterone has been low for years and he was getting TRT - in hindsight it probably wasn't the best thing.

    Thankfully surgery is planned a month away so we have time to address questions. Surgery is not set in stone, especially after reading everyone's comments yesterday. I will more strongly insist on a multidisciplinary meeting and have requested that Dr. Alex Gottschalk be included, but that may be a pipe dream. At any rate I know a radiation oncologist will be a part of the team.

    I am a retired dietitian so I will look very carefully at the nutrition recommendations - I think my husband will be especially motivated to follow a more plant based diet (sigh, a challenge for all of us). Thankfully, he is pretty fit and exercises regularly. We are acutely aware of the implications of treatment and how it will change our lives forever. The main goal for us is longevity - we have lots of retirement plans, especially to see our grandchildren grow up. 

    I am about rung out right now and will divorce myself from the computer for the rest of the day. I cannot even think of any more questions right now though I know I should have many. Again, thank you.

    Clay Jars

    Answer

    oClay,

    You asked me a few days ago why I was of the opinion that Gleason 9, high-volume disease has escaped the capsule. I apologize for having been too busy to reply, but Vasco's text answered the question regardless; 95% of what I would have written.

    We cannot absolutely or with authority say that surgery is wrong in your husband's case. What most of us are responding with is conventional wisdom and clinical insights that we have learned either through reading, our own discussions with doctors,  or from the writings of other patients here over the years.

    Bottom line: Just make the surgeon make his case for why surgery is a sound decision, given his particulars. Then, follow your gut with whom you most believe and have trust in.  After all the investigating, study, reading, prayer, and discussion is over, the two of you will just have to decide.  There is never a perfect choice, and no one ever gets perfect tranquility from their decisions.  You are doing all of the right things at this point,in the right way.

    Taking a day or weekend off as you described is a great idea.  Give yourself and yor husband some space for peace of mind; it is extremely helpful.

    max

  • Clay Jars
    Clay Jars Member Posts: 9
    #14
    Diet for PCa patients

    The resource you sent me recommends a "plant based" diet - very similar to guidelines for the Mediterranean diet. More fruits, vegetables, whole grains, legumes and nuts and lower in sugar and refined foods. They also recommend red meat less often, fish more often; higher monounsaturated fat (olive oil, avocado), lower saturated fat. I will read the guidelines more thoroughly as they talk about omega 3's and 6's as well as herbs and supplements. I noticed also that they really encourage lots of fluids which may be beneficial in keeping your kidneys healthy. I'm sorry you cannot get the PSMA PET scan; hope they can locate the bandit using other technology. 

    Thanks for your encouragement,

    Clay Jars

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #15
    Gleason 9 HAVE HOPE!

    Hi Clay Jars,

    After reading your thread, I am really happy to know that you have read my thread as well. 

    I read above that many are suggesting that surgery may not be the best option for your husband, but I will share a different angle on that question, from our experience. 

    Gleason 9 is serious. When we received my husband's biopsy, it was similar 14 cores, 4 affected (two Gleason 5+4 and two Gleason 5+5) perineural invasion present on one core. Because my husband is only 60 years old and in very good health otherwise, surgery was recommended after the bone scan and CT scan presented negative results for anything science could see, or not see in his case, regarding metastases. There are never guarantees along this journey, but our surgeon (Dr. Sam Bhayani - Barnes Hospital, St. Louis) felt we had a better than 50/50 chance on removing the cancer from my husband's body with robotic surgery. 

    As others have shared...there are pros and cons to every decision made when dealing with PCa, but because Gleason 9 is so agressive, IF (and you will never know for sure) it is contained, removing it quickly from the body, via surgery, rather than the "dying" process with radiation can be to your advantage. Again, there are risks with each treatment, but once you elect for radiation, the choice of surgery is more or less taken off the table. Knowing radiation is STILL available after surgery, if needed, allows one more "tool" in your toolbox for fighting the beast! 

    As I shared in my thread, but a bit more definitively here...100 days after receiving our PCa diagnosis, we received our second post-surgery PSA result of 0.01. Our surgeon reminds us of the severity of Gleason 9 (post-surgerical path actually lowered our two Gleason 10's to Gleason 9's - T3/N0/M0/Gleason Score 5+4=9) and that in his experience about 50% of his Gleason 9 patients need an additional form of therapy, but let's remember too that 50% do not! 

    My most important advice...do not lose hope! Remain hopeful and educate yourself, which I can tell you are doing! Have faith but most importantly, be sure to enjoy time together and do your best to balance the discussion between constant PCa talk and all the blessings you have together...both are important to discuss, but take the time to just enjoy each other!

    All the best to you while sending thoughts and prayers your way too! 

  • Clay Jars
    Clay Jars Member Posts: 9
    edited March 2017 #16
    Gleason Score 9 and 10 said:

    Gleason 9 HAVE HOPE!

    Hi Clay Jars,

    After reading your thread, I am really happy to know that you have read my thread as well. 

    I read above that many are suggesting that surgery may not be the best option for your husband, but I will share a different angle on that question, from our experience. 

    Gleason 9 is serious. When we received my husband's biopsy, it was similar 14 cores, 4 affected (two Gleason 5+4 and two Gleason 5+5) perineural invasion present on one core. Because my husband is only 60 years old and in very good health otherwise, surgery was recommended after the bone scan and CT scan presented negative results for anything science could see, or not see in his case, regarding metastases. There are never guarantees along this journey, but our surgeon (Dr. Sam Bhayani - Barnes Hospital, St. Louis) felt we had a better than 50/50 chance on removing the cancer from my husband's body with robotic surgery. 

    As others have shared...there are pros and cons to every decision made when dealing with PCa, but because Gleason 9 is so agressive, IF (and you will never know for sure) it is contained, removing it quickly from the body, via surgery, rather than the "dying" process with radiation can be to your advantage. Again, there are risks with each treatment, but once you elect for radiation, the choice of surgery is more or less taken off the table. Knowing radiation is STILL available after surgery, if needed, allows one more "tool" in your toolbox for fighting the beast! 

    As I shared in my thread, but a bit more definitively here...100 days after receiving our PCa diagnosis, we received our second post-surgery PSA result of 0.01. Our surgeon reminds us of the severity of Gleason 9 (post-surgerical path actually lowered our two Gleason 10's to Gleason 9's - T3/N0/M0/Gleason Score 5+4=9) and that in his experience about 50% of his Gleason 9 patients need an additional form of therapy, but let's remember too that 50% do not! 

    My most important advice...do not lose hope! Remain hopeful and educate yourself, which I can tell you are doing! Have faith but most importantly, be sure to enjoy time together and do your best to balance the discussion between constant PCa talk and all the blessings you have together...both are important to discuss, but take the time to just enjoy each other!

    All the best to you while sending thoughts and prayers your way too! 

    Hope

    Thank you so much for sharing your experience - what you say makes so much sense. And, more importantly, thank you for the reminder to enjoy life together and talk about something other than PCa...and for your message of HOPE. You are a good reminder that we will get through this - it's easy (especially at night) to get bogged down in the "what ifs" and take our eyes off Jesus and all the blessings in our lives.

    Thanks too for your prayers. 

    Clay jars

  • Gleason Score 9 and 10
    Gleason Score 9 and 10 Member Posts: 66 Member
    #17
    Clay Jars said:

    Hope

    Thank you so much for sharing your experience - what you say makes so much sense. And, more importantly, thank you for the reminder to enjoy life together and talk about something other than PCa...and for your message of HOPE. You are a good reminder that we will get through this - it's easy (especially at night) to get bogged down in the "what ifs" and take our eyes off Jesus and all the blessings in our lives.

    Thanks too for your prayers. 

    Clay jars

    The Nights....

    The nights are the worst...but, they will not be forever! Take one day at a time, live each moment, and make the best decisions you possible can...hope will prevail!

    I will stay in touch with your posts!

  • Clay Jars
    Clay Jars Member Posts: 9
    edited April 2017 #18
    Post op journey

    Fast forward from our last entry on March 6: My husband is now 1 week post-op for radical prostatectomy. He came to the conclusion that this was the best option after consultations with both Dr. Gottschalk, radiation oncologist at UCSF, and Dr. Nguyen, urologic oncologist at UCSF. They both spent so much time with us, answering all of our questions. Prior to surgery, a PSMA Pet scan was done as part of a trial at UCSF. The PSMA scan showed that his cancer was contained - no evidence of mets. Hopefully this scan will come into common use as it has the potential to prevent many of the prostate biopsies done for those in surveillance. We also got a phone call with the pathology results which are very encouraging - margins were clear, lymph nodes (20) all negative, and Gleason score lower than on biopsy (I'll need to see the actual report as Dr. Nguyen was talking about 3s, 4s, 5s, and a 7 - so a little confused). So next we'll wait for his next PSA and hope it is zero as the doctor believes it will be. 

    Meanwhile, my husband is uncomfortable with the catheter (as most of you report) but feeling a little better everyday. Does anyone have any suggestions for seat cushions that will make him a little more comfortable? I will also be looking at other's experience with catheter removal and incontinence issues. 

    I hope my husband's course is encouraging for others as others have encouraged us. Thank you all.

    Clay Jars

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #19
    Post OP

    I am glad for the news on your husband's treatment. The pathologist report is great and confirms the PSMA image exam. Lowering the Gleason grade is also good news. After withdrawing the catheter he needs to be active to avoid the typical side effects. Kegels and "lovely nights" are required even if such seem unnatural (pump, viagra, masturbation, etc). He needs to irrigate the penis cavernous with blood to keep it oxygenated. I hope he recovers the soonest and that the PSA brings you joy.

    Best wishes,

    VGama

  • Will Doran
    Will Doran Member Posts: 207 Member
    #20
    Best of Luck

    Clay Jars

    Best of Luck to you and your husband.  You have been given good advice above.  I really have not much I can add.  However one of the most important things is that you stay strong and give your husband as much support as you can. I know this is as hard on you as it is on your husband.   My wife has been wonderful through our journey.  She has made sure I did, and still do all that I'm supposed to do.  Plus she has allowed me to do as much as I want.  She has never stood in my way as far as trying things or taking things "away".  I am now 4 months into my 4th year post surgery.  So far all seems to be going well.  Not sure whether your husband will have to do Hormone Therapy and Radiation as clean up.  If so, that can get nasty at times.  Both physically and emotionally.  I went through that for two years with hormone therapy.  That is the time that it can get rather hard for both of you.  As has been stated above.  Enjoy life together and enjoy the simple things in life.  Rain storms, thunder & lightning, snow falls, birds and other wild life (Rabbits and Deer, etc.) in your/our yard.  Quite drives in the country, and even times where you get out there and "drive it  like you stole the car". (The rumble of my Hemi Powered Dodge Challenger is one of my best medicines)  Even a little off roading in my wife's Jeep Cherokee Trail Hawk makes me smile and us laugh like kids.  Quiet dinners together, and just watching old westerns on TV and sitting there holding hands  or doing word puzzles together.  Like I said, The simple things.  That's what you need to do, to keep your head "screwed on straight" during this battle. 

    Besy of Luck

    Know that your are in our thoughts and prayers

    Love, Peace and God Bless

    Will & Jo

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited April 2017 #21
    Clay Jars said:

    Post op journey

    Fast forward from our last entry on March 6: My husband is now 1 week post-op for radical prostatectomy. He came to the conclusion that this was the best option after consultations with both Dr. Gottschalk, radiation oncologist at UCSF, and Dr. Nguyen, urologic oncologist at UCSF. They both spent so much time with us, answering all of our questions. Prior to surgery, a PSMA Pet scan was done as part of a trial at UCSF. The PSMA scan showed that his cancer was contained - no evidence of mets. Hopefully this scan will come into common use as it has the potential to prevent many of the prostate biopsies done for those in surveillance. We also got a phone call with the pathology results which are very encouraging - margins were clear, lymph nodes (20) all negative, and Gleason score lower than on biopsy (I'll need to see the actual report as Dr. Nguyen was talking about 3s, 4s, 5s, and a 7 - so a little confused). So next we'll wait for his next PSA and hope it is zero as the doctor believes it will be. 

    Meanwhile, my husband is uncomfortable with the catheter (as most of you report) but feeling a little better everyday. Does anyone have any suggestions for seat cushions that will make him a little more comfortable? I will also be looking at other's experience with catheter removal and incontinence issues. 

    I hope my husband's course is encouraging for others as others have encouraged us. Thank you all.

    Clay Jars

    Thanks for the follow-up

    It appears that the outcome is as positive as can be under the circumstances.

    Great!

    PS: Hopefully, the recovery will be uneventful, but it may take (quite) some time.

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