Active surveillance prostate cancer.

jtiger
jtiger Member Posts: 10

I have prostate cancer. I am under active surveillance. I am deeply concern about it possibly spreading. I see both an Oncologist and Urologist every 3 months to check my PSA level. However, they do not seem too concern about doing anything. I do not know what to do? Please advise. I am deeply concern. How long should I be on active surveillance? I am just, once again, concerned about it spreading and have alot of anxiety depression.

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    edited March 2020 #2
    More info needed

    Hi Jbunny,

    Can you give us some info about your Pca like what you biopsy showed, psa number, gleason score, ect.?  The only way to determine if hou have Pca is by a biopsy performed by your Urologist. Have you had any CAT,MRI, PET scans to determine where inside your Prostate your cancer is located? I would suspect that every three month doctor visit could include a digital test, maybe a biopsy,more blood work to measure PSA?  A lot of talented experienced cancer survivors here to answer your questions as long as we have a little more info.

    Dave 3+4

  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #3
    My last gleason score was a 6

    My last gleason score was a 6. My last PSA level was a 4.8.

  • Flyer83948
    Flyer83948 Member Posts: 34
    edited April 2020 #4
    jtiger said:

    My last gleason score was a 6

    My last gleason score was a 6. My last PSA level was a 4.8.

    Gleason

    Those were about my stats, too. My Gleason was 6 and my PSA level was just below 5. But how about your age? That's an important number, too.

  • Clevelandguy
    Clevelandguy Member Posts: 750 Member
    Scans?

    Hi,

    Did you have any type of scans to show where the cancer is located inside your Prostate, deep inside, close the the edge, by your bladder,ect?

    Dave 3+4

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

    I am enrolled in an Active Surveillance protocol.....this is my 12th year. It's looks like I will continue  simply being monitored for the rest of my life...... I have not had any radical treatment that can have side effects. Below is a thread that I started.

    I really know a lot about Active Surveillance, the different protocols, feeling, etc. I am willing to answer any and all questions that you might have.

    Way back when I was first diagnosed, I had all those negative feeling as you do, but now I simply go on with my life.

    https://csn.cancer.org/node/320410

     

  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #7

    More info needed

    Hi Jbunny,

    Can you give us some info about your Pca like what you biopsy showed, psa number, gleason score, ect.?  The only way to determine if hou have Pca is by a biopsy performed by your Urologist. Have you had any CAT,MRI, PET scans to determine where inside your Prostate your cancer is located? I would suspect that every three month doctor visit could include a digital test, maybe a biopsy,more blood work to measure PSA?  A lot of talented experienced cancer survivors here to answer your questions as long as we have a little more info.

    Dave 3+4

    My gleason level is a 6. My

    My gleason level is a 6. My last PSA Level was a 4.8. I never had any type of test showing where inside my prostate the cancer is. The last biopsy I had was 6 months ago. They found cancer on only one of the 13 clippings. They said it was a non- aggressive cancer, and that is when they told me I had a gleason score of 6. However, I never had a biopsy  done since, or any types of MRI'S, or imaging test. That is why I am concern. Last time with the oncologist he did what I think was a digital test (this is where he sticks his finger up your rectum?), and he told me he found nothing unusual. Both the Urologist and Oncologist said they did not want to do any unnecessary treatments because of the possible side effects. I just hope they know what they are doing? I have had bad back pain, and this scares me because I know that could be a sign of it spreading. However I have severe back problems, and they said that is where the pain is coming from. Please advise. Thank you.

  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #8

    Gleason

    Those were about my stats, too. My Gleason was 6 and my PSA level was just below 5. But how about your age? That's an important number, too.

    I am 60 years old.
     

    I am 60 years old.

     

  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #9

    .

    I am enrolled in an Active Surveillance protocol.....this is my 12th year. It's looks like I will continue  simply being monitored for the rest of my life...... I have not had any radical treatment that can have side effects. Below is a thread that I started.

    I really know a lot about Active Surveillance, the different protocols, feeling, etc. I am willing to answer any and all questions that you might have.

    Way back when I was first diagnosed, I had all those negative feeling as you do, but now I simply go on with my life.

    https://csn.cancer.org/node/320410

     

    Please read information I

    Please read information I gave above.

  • jtiger
    jtiger Member Posts: 10

    .

    I am enrolled in an Active Surveillance protocol.....this is my 12th year. It's looks like I will continue  simply being monitored for the rest of my life...... I have not had any radical treatment that can have side effects. Below is a thread that I started.

    I really know a lot about Active Surveillance, the different protocols, feeling, etc. I am willing to answer any and all questions that you might have.

    Way back when I was first diagnosed, I had all those negative feeling as you do, but now I simply go on with my life.

    https://csn.cancer.org/node/320410

     

    I gave information to

    I gave information to Cleveland guy.

     

  • Flyer83948
    Flyer83948 Member Posts: 34
    edited April 2020 #11
    jtiger said:

    My gleason level is a 6. My

    My gleason level is a 6. My last PSA Level was a 4.8. I never had any type of test showing where inside my prostate the cancer is. The last biopsy I had was 6 months ago. They found cancer on only one of the 13 clippings. They said it was a non- aggressive cancer, and that is when they told me I had a gleason score of 6. However, I never had a biopsy  done since, or any types of MRI'S, or imaging test. That is why I am concern. Last time with the oncologist he did what I think was a digital test (this is where he sticks his finger up your rectum?), and he told me he found nothing unusual. Both the Urologist and Oncologist said they did not want to do any unnecessary treatments because of the possible side effects. I just hope they know what they are doing? I have had bad back pain, and this scares me because I know that could be a sign of it spreading. However I have severe back problems, and they said that is where the pain is coming from. Please advise. Thank you.

    Gleason

       I had a *mostly* similar condition to yours. I'm 59 and had a Gleason 6 with a PSA around 4.8, too. However, my biopsy came back with 6 out of 14 cores showing positive for Gleason 6 type prostate cancer. Now that's quite a bit over the recommended 2 to 3 positive cores recommended for Active Surveillance but nonetheless I wanted to avoid having surgery or radiation so I was looking into the Active Surveillance option for a long time. After an MRI which was consistent with the extensive amount of Gleason 6  found in my prostate by biopsy, I finally relented and decided to go with surgery.

       You, however, say that you have only 1 core out of 13 which came back positive. I believe that that's within the recommended amount for seriously considering Active Surveillance. Frankly, I wouldn't be sweating the situation much if I were you. You've got prostate cancer with a "small c", not a "big C". You do know that most all men are destined to have some prostate cancer if they live long enough but most all die of other causes because prostate cancer tends to grow very slowly in comparison to other cancers, don't you? Studies have shown that about 50% of men in their 50's have some cancerous prostate cells, and that over 70% of men in their 70's have some cancerous prostate cancer cells [Reference: See "Prostate Cancer: What's your risk?" by Harvard Health] but, again, most of these men die of other causes. Speaking as someone who has been in a similar situation as yours but had many more positive biopsy cores, IMHO it seems that you are a good candidate for Active Surveillance BUT you need to read up fully on the subject and educate yourself so that you are comfortable with the fact that you have a slow-growing prostate cancer (just as many men in their 50's and up do even though they may not know it) that will most likely not be the cause of your death and that you are choosing a rational course of action in selecting the Active Surveillance path. If after educating yourself you find that you still can't be comfortable with an Active Surveillance strategy, then you may have to select some treatment for your condition.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited April 2020 #12
    .

    First, take a deep breath!

    Approximately 70 percent of those with who have low risk disease will not need treatment; approximately 30 will. That said, among those 30 percent who are closely followed in an active surveillance plan as you are will still be able to be treated, in the same manor as they would have first choosen without any negative consequences.    

    The back pain that you complain about is unrelated to prostate cancer.

    The active surveillance protocols that doctors follow are not exactily the same, but for the most part similar. At Johns Hopkins for example, the criteria for them to accept a man in an active surveillance program, are two cores or less out of 12 with a 3+3=6 with less than 50 percent involvement in each of the cores that are positive. A PSA under 10 with normal or slight bump in prostate, Ratio PSA/Prostate size less than 0.15. In fact Johns Hopkins is more strigent than most institutions.  You have one of thirteen. You did not indicate the involvement of the core that was positive. (By the way it is a good idea to have a copy at your disposal of all medical records for your referral.)

    Here is information that you probably are unaware of: there is a difference between biopsies. There are targeted biopsies availalbe to those with better insurance that are better....that is first a man obtains a T3 MRI. This MRI can indicate extracapsular extension, and determine suspecious lesions in the prostate. This information is targeted by a three dimension biopsy machine that is more likely to find cancer, and you can place more confidence in. Additionally if necessary the doctor can go back to the exact spot where cancer was found in a repeat biopsy if necessary.

    From what you mentioned you probably had a random biopsy, with a two dimensional untrasound machine, which most men get. This is good, but not as good as a three dimensional machine.

    Two manufactureres of the three dimensional biopsy machine are artemis and uronav.

  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #13

    .

    I am enrolled in an Active Surveillance protocol.....this is my 12th year. It's looks like I will continue  simply being monitored for the rest of my life...... I have not had any radical treatment that can have side effects. Below is a thread that I started.

    I really know a lot about Active Surveillance, the different protocols, feeling, etc. I am willing to answer any and all questions that you might have.

    Way back when I was first diagnosed, I had all those negative feeling as you do, but now I simply go on with my life.

    https://csn.cancer.org/node/320410

     

    I see you have said you have

    I see you have said you have been on active surveillance for 12 years. I to, are on active surveillance.  I have been on it for 2 years. I am concerned about it possibly spreading, and I fear all types of treatment, and of course death. I have a Major depression type disorder. I am on Social Security Disability for this. Typically, I do not worry about the cancer so much. It is only during these depression times, like now, that I worry about it more and seemingly become obsessed with it. Right now I have severe anxiety and depression. I really do not have anyone to talk to. Both my Oncologist and Urologist tell me not to worry. They tell me I should just trust them. However, I also have severe back pains. I worry this can becoming from a spread. They tell me the back pain is just coming from my back related problems (herniated and bulging disc, arthritis, and a misalignment in the spine). I cannot understand why they will not do some type of exam to reassure me I am okay? I do not know if just a monitoring of my PSA level every 3 months is enough? Please advise. I am very concern.

     

  • Tech70
    Tech70 Member Posts: 70 Member
    edited April 2020 #14
    I'm on Active Surveillance

    Have been for app. 3 years.  I have had 3 biospys each having 2 positive cores with less than 5% of the core affected.  Gleason scores on all were 3+3 except the second biopsy had one core rated 3+4.  Since it was a new pathology lab, we sent the sample to Johns Hopkings and they rated it 3+3. My PSA has never exceeded 4.0. I also had a 3T MRI which showed no lesion of concern.  Some Pca's consist of microfoci which will not show up on MRI.  One thing that gave me peace of mind in following AS was having the positive biopsy samples sent for Oncotype DX testing, genomic testing that rates the risk of serious pathology going forward.  They provide a score, the lower the better, showing that risk.  My score was quite low so I'm pretty calm about staying with AS.  I note your age is 60; Medicare will pay for genomic testing but some insurance won't.  You might want to check before sending the sample off, as the cost of the test is around $3,000.  However the company does have some provisions for people whose insurance doesn't cover it.

  • Flyer83948
    Flyer83948 Member Posts: 34
    edited April 2020 #15
    jtiger said:

    I see you have said you have

    I see you have said you have been on active surveillance for 12 years. I to, are on active surveillance.  I have been on it for 2 years. I am concerned about it possibly spreading, and I fear all types of treatment, and of course death. I have a Major depression type disorder. I am on Social Security Disability for this. Typically, I do not worry about the cancer so much. It is only during these depression times, like now, that I worry about it more and seemingly become obsessed with it. Right now I have severe anxiety and depression. I really do not have anyone to talk to. Both my Oncologist and Urologist tell me not to worry. They tell me I should just trust them. However, I also have severe back pains. I worry this can becoming from a spread. They tell me the back pain is just coming from my back related problems (herniated and bulging disc, arthritis, and a misalignment in the spine). I cannot understand why they will not do some type of exam to reassure me I am okay? I do not know if just a monitoring of my PSA level every 3 months is enough? Please advise. I am very concern.

     

    Active Surveillance

    Sounds like you have some other physical and mental issues aside from your prostate issues. I would take the advice of your oncologist and urologist if I were you and focus on dealing with your other problems.

  • ASAdvocate
    ASAdvocate Member Posts: 176 Member
    New AS Study Confirms Safety

    A new study of Active Surveillance for Grade Group 1 men with 5, 10, and 15 year results. The results should settle any doubts about the safety of AS.










    Written by Leonard S. Marks MD










    PRACTICEUPDATE.COM

     











  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #17
    Thank you everybody for all

    Thank you everybody for all help and advice. Unfortunately, while under active surveillance, I have had not as much testing or information for this prostate cancer. I called my Urologist today with my concerns of possible spreading, but he had a somewhat laid back attitude. He told me not to worry I have only a 4.8 PSA level, and a gleason score of a 6. He further told me it is stage 1, and it is a non- aggressive cancer, located within the prostate. I do not know how he got all of this information?In 2 years, under Active Surveillance, I have had only 2 ultrasound guided biopsies, and a PSA level check every 3 months. He does not even give me a digital exam. I only got that on my last visit to my Oncologist 4 weeks ago. The Oncologist, at that time, said it appeared okay. I have yet to have any imaging test. This is why I am concern about possible spreading? Everybody tells me not to worry, especially my one brother, they say, " I will probably die of something else before the prostate cancer should kill me". It is very frustrating. I have no support.  I am looking into the Decipher Bio test. This rates the severity of the cancer. It will show a low rating or a high one. Hopefully, this will give me some inner peace. I am not asking for a spread, but I am concern it might. Just a PSA level check every 3 months does not show, I feel, if it is indeed spreading. Waiting for a sudden rise in my PSA level, before he does any imaging testing like he wants to, may be too late? The cancer is contained inside the prostate, so he saids. I do not know if this indeed shows from just a ultrasound biopsy? Please advise, whoever can. I am very upset. I have a Major depression disorder as it is, which I am on Social Security Disability for, this certainly does not help.

     

  • jtiger
    jtiger Member Posts: 10
    Is anyone here to comment, or

    Is anyone here to comment, or to make suggestions about my case?

  • jtiger
    jtiger Member Posts: 10
    edited April 2020 #19

    Scans?

    Hi,

    Did you have any type of scans to show where the cancer is located inside your Prostate, deep inside, close the the edge, by your bladder,ect?

    Dave 3+4

    No my doctors have not done

    No my doctors have not done any type of scans that is why I am concerned. I just do not understand how they can determine that the prostate cancer is not spreading by doing just a PSA level check every 3 months? My last ultra sound guided biopsy was done approximately 6 months ago. I have yet to have any imaging test, and I have been under AS for 2 years now. Please advise.

  • ASAdvocate
    ASAdvocate Member Posts: 176 Member
    edited April 2020 #20
    jtiger said:

    Is anyone here to comment, or

    Is anyone here to comment, or to make suggestions about my case?

    If you have not had an MRI,

    If you have not had an MRI, you need one. A formal AS program will include a 3Tesla mp-MRI within the first year. Insurance will pay for it. Insist on getting an order for that, of, find a new doctor.

  • Georges Calvez
    Georges Calvez Member Posts: 545 Member
    Prostate biopsy

    Hi there,

    Ask for a copy of your prostate biopsy, that should show you where the sample that had the cancer in came from and the precentage of cancerous cells in the sample.
    If the percentage is low it is likely that the tumour is very small and it will not be visible on an MRI, if the percentage is quite high then you could try an MRI.

    Best wishes,

    Georges