Paralyzed with fear - gleason score 9 (very worried wife)

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  • ajfishin_fool
    ajfishin_fool Member Posts: 7

    Caseyh; I am sorry for offending you
    Caseyh

    I apologize for my above inquire post and I am sorry for the comments if they have offended you.

    I regard this type of cancer forums very important to the ones that just like us are confronted with the same problem and it irritates me when some “scrooges” try taking advantage of the prejudice of others for sales purposes.

    I can see that I have mistaken your comments, maybe because of seeing your post wiped out from another forum.

    May I ask you to be more active in this forum, helping us with your experiences along your twelve years as a survivor, particularly in regards to your experience with the newest USPIO MRI test? Can you “enlighten” us in the successes and perils of your case?

    Respectfully.

    VascodaGama

    Bring it down a notch...
    This is the wife of fishin_fool. Please remember that there is a high degree of emotions related to prostate cancer.

    Is anyone posting on the site an expert other than attesting to their own experiences?

    Be kind and gentle to one another.

    Anger is caustic.

    God's Blessings
  • caseyh
    caseyh Member Posts: 63

    Caseyh; I am sorry for offending you
    Caseyh

    I apologize for my above inquire post and I am sorry for the comments if they have offended you.

    I regard this type of cancer forums very important to the ones that just like us are confronted with the same problem and it irritates me when some “scrooges” try taking advantage of the prejudice of others for sales purposes.

    I can see that I have mistaken your comments, maybe because of seeing your post wiped out from another forum.

    May I ask you to be more active in this forum, helping us with your experiences along your twelve years as a survivor, particularly in regards to your experience with the newest USPIO MRI test? Can you “enlighten” us in the successes and perils of your case?

    Respectfully.

    VascodaGama

    No Problem
    VascodaGama

    Obviously, you have educated yourself well on the subject of prostate cancer and have made significant contributions to this site. Hopefully together, we can contribute to a better understanding of the disease for people who turn to this site for guidance.

    Thanks
  • Trew
    Trew Member Posts: 932 Member
    Take Courage
    I was dx with a 5+4 at time of surgery. Had positive margins- bladder neck invasion.

    I did have surgery, hormone shots, and a combination of proton and external beam radiation that ended in Jan, 2010. I am now planning some serious backpacking for this summer in Colo. I am only 63, but active is active.

    I wish your husband and you well.

    Be prepared- the hormone therapy can be an emotional roller coaster.
  • mssa58
    mssa58 Member Posts: 21
    Gleason 9 suvivor
    I am sorry to hear about your husband. I know the feeling. I was initially given a Gleason score of 8 but after surgery they discovered the cancer had spread to the bladder neck and they moved me up to a 9. I also underwent hormone therapy and radiation and was finally declared cancer free 3 months later. I had 15 month being cancer free. It may have returned now (will find out for sure in April) but that could be due to the fact that I am a Vietnam vet who was exposed to Agent Orange. Get a second opinion and don't give up hope, my wife and I will be praying about your husband.
  • djs123
    djs123 Member Posts: 102
    mssa58 said:

    Gleason 9 suvivor
    I am sorry to hear about your husband. I know the feeling. I was initially given a Gleason score of 8 but after surgery they discovered the cancer had spread to the bladder neck and they moved me up to a 9. I also underwent hormone therapy and radiation and was finally declared cancer free 3 months later. I had 15 month being cancer free. It may have returned now (will find out for sure in April) but that could be due to the fact that I am a Vietnam vet who was exposed to Agent Orange. Get a second opinion and don't give up hope, my wife and I will be praying about your husband.

    Gleason 9 & proton therapy
    Thank you so much Gleason 9's for your posts. I wish you continued good health and appreciate your positive information and encouragement.
    I will check the discussion board for posts on proton therapy, but I'm wondering if anyone has information they can share about your experience with this form of treatment. My understanding is that the side effects are fewer than other forms of radiation therapy.
  • Texas_Lady
    Texas_Lady Member Posts: 3
    Paralyzed with fear - Gleason Score 9 - (very worried wife) ALSO

    I also - found out 2 days ago that my husband has Prostate cancer. Two PSA's done 2 mo. apart 33 and 34. 12+ Biopsies - Gleason score 5 + 4 / 9. I have read and read and read and cannot find the information I want. My husband is 100% disabled Vietnam veteran - a real American Hero. His disabilities are caused by Agent Orange. So, before getting this news of a Gleason 9, he already has medical conditions: Diabetic, Obese, High Blood Pressure caused by a hormone deficiency (took 5 years of runaway high blood pressure before we finally walked into the right doctors office, diagnosed, and now under control with meds), Neuropathy, had one stroke years ago, and taken to hospital 7 months ago with Congestive Heart Failure (caused by him not taking the evening water pill for many weeks). He has had several of the Prostate Cancer Symptoms for some time now (not that we knew before now). He asked the VA twice to do the biopsy sooner than 4.5 months after the second PSA of 34, but he says they wouldn't  budge. I am crazy at this point - out of my mind.
    I cannot find any information about treatment for aggressive Prostate Cancer in CONCERT with an Agent Orange disabled person with my husband's illnesses. He has bone scan, bloodwork, and cat scan scheduled for late next week. We see the urologist specialist in two weeks. I am also 100% medically disabled after working with my disabilities for at least 20 years of the 43 years I worked. I mention this so you all can appreciate that there isn't any retirement account / savings. We sold our home ten years ago and paid off medical bills. My husband is 63 and I am 61. Anyway, second opinions outside of the VA would be very expensive, and not possible. Having said that, I do believe when we walk into the doctor's office in two weeks, we need to be educated and know what it is we need to know to have intelligent conversation regarding my husband's treatment plan. I just realized how old this string is. I need to figure out how to post this as a new string / thread (what do you call it??? lol)

  • Treysdad
    Treysdad Member Posts: 1
    djs123 said:

    Gleason score 9
    Thank you so much for your advice. I'm grateful to hear rational sound advice. I know a second opinion is in order and although my husband does not want to visit another doctor, he's willing to send his records off and get a consultation that way, which I hope they agree to do. I would feel more comfortable having an expert review this.

    You have given me hope and I'm so grateful for that.

    This is not a great forum to be a part of, but I am so grateful it exists and there are people like you that will lend an ear an offer advice.

    Thank you.

    Djs223

    If Florida is 2nd home I, a Gleason 9, suggest Dattoli Cancer Center in Sarasota, Fl... The best and you will see a lot of him mentioned here.Highlt recommended buy Medonc Snuffy Meyers. Give Dattoli a call and he will call you back in the evening and discuss your husbands case.

    God spread his wings around you both.

    Treysdad

  • rooster6
    rooster6 Member Posts: 9

    Paralyzed with fear - Gleason Score 9 - (very worried wife) ALSO

    I also - found out 2 days ago that my husband has Prostate cancer. Two PSA's done 2 mo. apart 33 and 34. 12+ Biopsies - Gleason score 5 + 4 / 9. I have read and read and read and cannot find the information I want. My husband is 100% disabled Vietnam veteran - a real American Hero. His disabilities are caused by Agent Orange. So, before getting this news of a Gleason 9, he already has medical conditions: Diabetic, Obese, High Blood Pressure caused by a hormone deficiency (took 5 years of runaway high blood pressure before we finally walked into the right doctors office, diagnosed, and now under control with meds), Neuropathy, had one stroke years ago, and taken to hospital 7 months ago with Congestive Heart Failure (caused by him not taking the evening water pill for many weeks). He has had several of the Prostate Cancer Symptoms for some time now (not that we knew before now). He asked the VA twice to do the biopsy sooner than 4.5 months after the second PSA of 34, but he says they wouldn't  budge. I am crazy at this point - out of my mind.
    I cannot find any information about treatment for aggressive Prostate Cancer in CONCERT with an Agent Orange disabled person with my husband's illnesses. He has bone scan, bloodwork, and cat scan scheduled for late next week. We see the urologist specialist in two weeks. I am also 100% medically disabled after working with my disabilities for at least 20 years of the 43 years I worked. I mention this so you all can appreciate that there isn't any retirement account / savings. We sold our home ten years ago and paid off medical bills. My husband is 63 and I am 61. Anyway, second opinions outside of the VA would be very expensive, and not possible. Having said that, I do believe when we walk into the doctor's office in two weeks, we need to be educated and know what it is we need to know to have intelligent conversation regarding my husband's treatment plan. I just realized how old this string is. I need to figure out how to post this as a new string / thread (what do you call it??? lol)

    Gleason 9 score

    You are not alone in your worry, my husband had prostrate removed 6 years ago, radiation 3 years ago his score went from  7 to 9.  Psa scorevdid not show any cancer, but when my husband started urinating blood a biopsy showed pprostrate cancer in the bladder. My husband is 67 and Dr (2) said do Hormone therapy.  They throw out numbers of survival like 5-10 years.  They do not recommend bladder removal  as per se quality of life issues.  My husband would welcome 10 more years but we are so wooried it could be 5 or less.  It is hard to give up hope.  Wishing you and your husband better news hang in there .

  • Lrroscoe
    Lrroscoe Member Posts: 2
    Gleason 9

    We just got biopsy results on Friday. I saw your post and would like to know what you did and what is the update. Any suggestions. I am fearful too!

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited April 2017 #31
    Lrroscoe said:

    Gleason 9

    We just got biopsy results on Friday. I saw your post and would like to know what you did and what is the update. Any suggestions. I am fearful too!

    Who are you talking to?

    FYI, you've added on to a stale thread which ended in 3 years ago in 2014.  The OP and several other participants in the thread have not been back on the forum since then.

    Noticed that you started a new thread of your own which will be the best place to deal with the problems specific to your husband's current situation.