What do you think about my case? Better to remove the prostate now or wait?

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Comments

  • swl1956
    swl1956 Member Posts: 131 Member
    #22

    Been thinking about the term "Active Surveillance" Even after having a treatment of any type, RP, RT, Focal, we're all sort of still in Active Surveillance camp. Albeit, Focal is a bit harder to track being you still have an active prostate which may require future biopsies. Even if some are lucky to have the "one and done" they really wouldn't know that till they die of something else. Many on this site have had recurrences after initial treatments of all types and many have had good outcomes which we hear of less. Friend of mine at 52 with a 3+3 tumor had RP and now at 67 still worries prior to his yearly PSA. 15 years ago AS still wasn't a real popular option. Many urologists now recommend it, some even stating 3+3 isn't really any worry because it does not spread. My friend may or may not had any progression had he not endured the surgery. Who knows! Took me six months to decide while having an intermediate unfavorable staging what to do. I'm still not sure I made the best decision, but having made a decision sure helped reducing my stress level (at least for a while). There's lots of ambiguity in this Pca arena. Lots of opinions too. It still comes down to making a decision that you are the most comfortable with. Problem is; They all kinda suck!

  • henry1972
    henry1972 Member Posts: 14 *
    #23
    https://csn.cancer.org/discussion/comment/1715815#Comment_1715815

    Hello yes It seems that pure gleason 3+3 does not spread outside the prostate and does not metastasize, but we are not 100% sure that this is the case in the biopsy. Therefore unfortunately we have to make decisions based on a test that does not show 100% reality. In my case, 5 samples were taken from the visible lesion, of which 3 are positive. The MRI report mentions that the lesion reaches the prostatic margin. How dangerous is the extraprostar extension of gleason 6?

  • jc5549
    jc5549 Member Posts: 58 Member
    #24
    https://csn.cancer.org/discussion/comment/1715809#Comment_1715809

    We understand very well. Nothing feels "normal," after being diagnosed. Your PSA suggests that you can continue to watch your velocity trend as you get a feel for what you want to do. I felt really young at being diagnosed at 58, 52 is even tougher. I feel 3+3 does allow you time to sit back and really decide what you want to do.

    I took a year to consider always knowing I (possibly you as well) were going to have to pull the trigger and do something at some point with the tumor volume. I was slightly different with 3+4 with cribriform changes on repeat biopsy, the aggressive features of repeat bx made me pull the trigger for surgery.

    Good luck and please ask us questions, the guys on this link have a lot of great input that has got me through the past 4 months of post surgery milestones with a sense of knowing what to expect.

    jc

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #25

    Just to add to the anxiety aspect of all of this, a biopsy samples only a very tiny portion of the prostate…

  • swl1956
    swl1956 Member Posts: 131 Member
    #26
    https://csn.cancer.org/discussion/comment/1715816#Comment_1715816

    I had a second targeted biopsy at Cancer Center of Excellence which confirmed the first I had done locally. Also had a PSMA PET scan just to be sure no metastasis. But even with those two tests it's still not a 100% guarantee. My index lesion was 4+3 90% involvement. At some point we just make a decision on the best info we have at the time. Whole gland treatment is certainly more likely to get more of the unseen bandits, but at a cost. In my simple mind, I figured as long as I could retreat later if we didn't get it all, it's worth a shot. But that's just me. At 67 I was not liking the potential QOL issues associated with RP or RT. If I was in my late 70s or 80s I believe Radiation makes the most sense. Stay calm and take your time. You will likely vacillate for a while. Even those with high gleason scores have some time to decide.

  • henry1972
    henry1972 Member Posts: 14 *
    #27
    https://csn.cancer.org/discussion/comment/1715824#Comment_1715824

    well… from what I see in your particular case there was little to think about. A 4+3 requires radical treatment yes or yes. Not doubts.

    My case is a little different because I understand that a 3+3 does not require emergencies, but my diagnosis was last November and 6 months have passed and I have decided for now AS but I am very very very afraid of making a mistake and that the tumor is gleason 6 come out of the prostate. My big disadvantage is that I am only 52 years old.

    My big problem is that I cannot make a risk/benefit balance by analyzing every detail.

  • swl1956
    swl1956 Member Posts: 131 Member
    #28

    Yes 4+3 is recommended to treat without doubt. Not so, with 3+4. Dependent on staging some 3+4s are Actively Surveilled. Low to medium risk patients are the typical sweet spot for Focal therapies but some with much higher risk have been successfully treated. I'm thankful my cancer was contained within the gland. (Hopefully!) You'll drive yourself crazy trying to analyze every detail. I tried that for a while and gave up. Too much ambiguity. I'm not suggesting to shoot from the hip, but even the brightest doctors in the world have differing opinions on this stuff. Not to mention the multi billion dollar industries which have much influence in keeping the status quo going. I had one radiologist tell me I was my own worst enemy by reading about Pca on the net. I'm not a gifted guy, but I know a horses **** when I see one. Lols! I'm a huge fan of second opinions. If you haven't already take time to find the best doctors and institutions and no matter which treatment you choose you'll have a good shot at killing or at least keeping under control the beast.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #29

    I’ve been on AS since 3/09. No radical treatment with potential side effects. Simply monitoring.
    Every major organization recommends AS for patients who qualify. The potential side effects of treatments are more critical for younger men, where sexual activity is more important, and a life time of impotence and incontinence.
    Suggest that you receive a second opinion on the pathology from a world class pathologist since your treatment is based on this. There is a difference among the competency of pathologists. John’s Hopkins pathology department is recognized as world class.
    Extensive studies indicate that Gleason 6 will not leave the prostate, however when there is extensive gleason 6 that is found in the prostate, a greater likelihood that aggressive cancer may exist (Gleason 7 or greater).
    Also suggest that you ask your doc to order a gene test to see if genes that may prohibit AS may exist. There are a few basic ones. Decipher test is a good one. Speak to your doc.
    Prostate cancer is very slow growing. No rush, simply do things in a coordinated way.

  • henry1972
    henry1972 Member Posts: 14 *
    #30
    https://csn.cancer.org/discussion/comment/1715838#Comment_1715838

    Hello @hopeful and optimistic, I greatly appreciate your advice.

    I am Spanish and live in Spain, therefore it is very difficult for my biopsy samples to be reviewed at John Hopkins.

    how big is your tumor? location? Positive cores with how much percentage of affectation?

    Regarding my family history, I have a maternal uncle affected by prostate cancer at the age of 70 and my paternal grandmother died of breast cancer. But today the vast majority of the general population has a first or second degree relative affected by cancer.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #31

    Each situation on AS is somewhat unique. I am older than you, 81, so monitoring for me is less strict. I have a small amount of 4. It was first found about 10 years ago. (Men with small amounts of 4 are still eligible for AS).
    By the way there was a trial in England called the Protect trial where men were divided AS, surgery and Radiation, a fifteen year period. It showed that AS worked as well as the treatments. At the time of the trial, mri and other AS monitoring were not available. Now AS programs are better. ( on the internet check out the protect trial).
    Generally it’s a close relative, father, brother, etc. (there is also a correlation between prostate and breast).
    These tests to measure genes are universal. It is important to know about YOU, some tests are decipher, oncotype dx, prolaris. Speak with your doc.
    With reference to second opinion on the slides for your biopsy. I don’t know about the best pathologists in Europe( Vasco who is from Portugal may be able to help). Since the slides are sent to a pathologist, if you cannot find a world class pathologist in Europe , you probably can still send the slides to a USA pathologist. (Johns Hopkins charges $400 for a second opinion. Contact them to determine how this can be done.

  • henry1972
    henry1972 Member Posts: 14 *
    #32
    https://csn.cancer.org/discussion/comment/1715843#Comment_1715843

    Indeed you are 30 years older than me. One of the doctors told me that being diagnosed with PCa today is neither good nor bad news, because if we live long enough, almost all of us will develop it. What I didn't expect is that I could suffer from it at 50 years old. I also read a study in which a pathologist said that a gleason 6 tumor needed around 40 years to reach a size of 1 cm... so I wonder... at the age of 10 did I already have a mutation in some of my prostate cells?

    It is very true that AS already had very good results without the application of MRI, therefore now it must be better.

    I'm going to read the PROTECT study carefully to see if I can find peace of mind.

    a hug

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #33

    peace of mind

    All of us who are diagnosed go through shock and all those negative feelings. This usually last for a few months or so.
    Some strategies; educate, attend support groups, surround yourself with positive people- for example if you attend religious services the clergy person needs to be positive, if not change institutions for a positive clergy person(even if you have to change religions lol )

    You will be fine

    I

  • Steve1961
    Steve1961 Member Posts: 625 Member
    #34

    do it now that’s my opinion I went through the same thing. Did radiation waited this at this that now ended up having salvage surgery. I wish I would’ve done it in the first place. It’s cancer. It does not belong in you it’s trying to kill you The surgery is not as bad as it’s made out to be even with salvage surgery it wasn’t as bad I’d get it done and get it over with and don’t look back

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