Hello just diagnosed and very frightened

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Steve1961
Steve1961 CSN Member Posts: 692 Member
in Prostate Cancer #1

I was just diagnosed Thursday by my urologist . PSA 7.8 ..had 5.5 for many years with 3 biopsy’s and were all good. This last one not sooo good.2 out of 12 showed some cancer .thsts all I know until I see the specialist next Thursday.thoughmy urologist did give me encouragement saying we caught it very early whatever that means...don’t know what to ask the specialist on Thursday I guess my biggest fear is if it has spread or not ..any input would be muchhhhhhh apppreciated ..thanks in advance ..how I am 56 years old 

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Comments

  • hopeful and optimistic
    hopeful and optimistic CSN Member Posts: 2,346 Member
    #2
    .

    Dear Steve,

    I am sorry for your diagnosis. We are here for you. 

    For the first few months after diagnosis, all of us go through shock and all those negative feeling.

    Please feel free to ask questions as you will. 

    All prostate cancers are not alike. There is a difference. Some are benign while others aggressive, so you need to determine what is going on by obtaining information and obtaining the proper diagnostic tests, beyond the biopsy.

    At or before the meeting with the urologist, obtain a copy of the pathology of your biopsy so you can review, have available for other specialists, and discuss here with suggestings for the next step in do things coordinately for the best outcome. We can help.

    To date, what is the history of your PSA's. Any other tests such as a FREE PSA, What prompted you to first start having biopsies? What did the digital rectal exam(finger wave in anus) reveal?  Have you had any image tests, for example a T3 MRI that might show if there is extracapsular extension, that is if the cancer has escaped the prostate....this is an important test to evaluate an active treatment(s), if any or to simply monitor your disease with treatment in the future if required.

    The biopsy presents a Gleason score, which lets you know the aggressiveness of the cancer, If you are not knowledgeable do a quick google of Gleason score so you will know what the urologist is talking about.

    Ask the urologist to let you know the size of your prostate.

     

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #3
    hopeful and optimistic said:

    .

    Dear Steve,

    I am sorry for your diagnosis. We are here for you. 

    For the first few months after diagnosis, all of us go through shock and all those negative feeling.

    Please feel free to ask questions as you will. 

    All prostate cancers are not alike. There is a difference. Some are benign while others aggressive, so you need to determine what is going on by obtaining information and obtaining the proper diagnostic tests, beyond the biopsy.

    At or before the meeting with the urologist, obtain a copy of the pathology of your biopsy so you can review, have available for other specialists, and discuss here with suggestings for the next step in do things coordinately for the best outcome. We can help.

    To date, what is the history of your PSA's. Any other tests such as a FREE PSA, What prompted you to first start having biopsies? What did the digital rectal exam(finger wave in anus) reveal?  Have you had any image tests, for example a T3 MRI that might show if there is extracapsular extension, that is if the cancer has escaped the prostate....this is an important test to evaluate an active treatment(s), if any or to simply monitor your disease with treatment in the future if required.

    The biopsy presents a Gleason score, which lets you know the aggressiveness of the cancer, If you are not knowledgeable do a quick google of Gleason score so you will know what the urologist is talking about.

    Ask the urologist to let you know the size of your prostate.

     

    Thanks so much for the info..

    Thanks so much for the info...the finger in the butt he said it was slightly enlarged but nothing out of the ordinary he said. What prompted me to go I have been getting checked every year  for the past  5 or 6 years PSA levels that is  because my dad had prostrate cancer but did not die from it. So like I said before  I have had 2 biopsies over the last 5 or 6 years that came back negative .so my urologist just assumed I may have just naturally elevated PSA it was alway between 5:5 and 6 ..this time it went to 8 and this biopsy showed 2 cancer specimens our of the 12 he took. What upsets me is that is all he said besides that we caught it early and he suggested radiation and believes i can recover from this. He the referred me to an oncologist whom I see Thursday, but in the mean time I worried  sick. I think he caould have at least told me if it was benign or malignant .....at the time I was kinds in shock and failed to ask him that...thanks for all the support 

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #4
    Oh I think my urologist

    Oh I think my urologist should have told me the Gleason score now I’m thinking he didn’t because it was bad and he would let the specialist deal with it ...I am very upset...about all this...myGP seems to think he is great but I dint know now 

  • hopeful and optimistic
    hopeful and optimistic CSN Member Posts: 2,346 Member
    edited December 2017 #5
    .

    Simply contact your urologist office to obtain a copy of the pathology.....by looking at the Gleason score, the amount of involvement, that is the amount of cancer in each core that is posiive and any other pertinent information in the pathology report, you will have a better idea of where you currently stand, and what needs to be done as far as other diagnostic tests that will shed more light.

    Please do not assume that the urologist kept a secret from you because he did not want to deal with it....these guys do this ten times a day.....simply contact the urologist office asap so you can eliminate worry time about not knowing what the pathology showed.

    Prostate cancer is very slow growing, so you have time to research and make the best decision as far as trreatment , one that you are comfortable with and can live with. 

    Remember you are CEO of your medical ondition and treatment. you need to be informed........these doctors are hired hands who work for you.

     

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #6
    Thank you sooo much I will do

    Thank you sooo much I will do that Monday at least I will know now wzy or another ...this forum isa Gods sent .i will let you know thanks again 

  • Tech70
    Tech70 Member Posts: 70 Member
    edited December 2017 #7
    Don't panic

    A lot depends on the Gleason score of your positive biopsys and the percentage of the the sample that contained cancer.  If the Gleason is 6 and only two of the cores contain cancer, you could be a candidate for active surveillance.  At this point, research on your part is critical.  The NCCN has an excellent online, downloadable guide for prostate cancer patients.  Google it and download it.

    I'm currently following an active surveillance protocol because in addiiton to avoiding the potential side effects of agressive treatment, the available technologies for addressing the disease are advancing rapidly.

     

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #8
    wow You are the best ..

    wow You are the best ...trying hard not to panic lol it’s tough ...thanks again I will keep u informed because I am going to one of the success stories on this sight I am not giving in to this no way no how......

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #9
    By the way apparently the

    By the way apparently the specialist I am seeing only does prostrate cancer 16 years experience 

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    edited December 2017 #10
    Please do not overreact

    The best thing that you can do is not to yield to the mentality of "I have cancer, cut it out tomorrow". 

    Prostate cancer is slow growing, and almost never requires immediate decisions. I was diagnosed in 2009, and my specialists at Johns Hopkins believe that monitoring, rather that any treatment, is my best course. They should know, as they pioneered active surveillance in the USA.

    Get your biopsy pathology report, and share the data here (and elsewhere where knowledgable people can advise). Also, if you have a case that may require treatment, please speak with BOTH a urologist and a radiation oncologist. Both can eradicate cancer, but with different side effects. Do not allow one to speak for the other.

    Good luck.

     

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #11
    Thanks I have been to the

    Thanks I have been to the urologist ..he is the one who now is referring me to the radiation oncologist who I see on Thursday.i am going to get a copy of the report on Monday to see for myself ....hope the findings r lowwwww....just sooo scared it has spread already...haberdashery had pressure and weird little stabbing pains arpinf my sinus and tail bond but I havre to admit it think that’s only been since the biopsy ...will keep the faith .thanks again for the help 

  • 1005tanner
    1005tanner Member Posts: 29
    #12
    Get a second opinion with

    Get a second opinion with your pathology slides and look at your options. If you do surgery first you still can have radiation next if needed.

    Or active survelleance is a option if gleason score is below 6. And your anxiety can handle it. Good luck my brother. Your age has alot to do with it also as some are slow growing and not as aggressive.

  • Old Salt
    Old Salt CSN Member Posts: 1,653 Member
    #13
    1005tanner said:

    Get a second opinion with

    Get a second opinion with your pathology slides and look at your options. If you do surgery first you still can have radiation next if needed.

    Or active survelleance is a option if gleason score is below 6. And your anxiety can handle it. Good luck my brother. Your age has alot to do with it also as some are slow growing and not as aggressive.

    Active surveillance

    1. Gleason scores below 6 are not considered cancerous and are not reported.

    2. Active surveillance (AS) protocols vary by institution. The number of tumors within the prostate and their location play an important role in determining whether a person migt be a good candidate for AS. This forum has several contributors who are more knowledgeable than me about this approach.

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    edited December 2017 #14
    Wow thanks alot brothers

    Wow thanks alot brothers.calling today to have the report sent to my GP and I will go see him to go over it..I trust him sooo much been with him 20 years...I am soo frightened that it had spread..I am still having some discomfort in my rectum from the biopsy which is only supposed to last a week or so and now has been 9 days...of course I am thinking the discomfort is the cancer spreading..trying soo hard to not think like that but it’s tough...will all oncologists do a bone scan to see if it’s spread or not ....sorry  for the ranting thanks again 

  • hopeful and optimistic
    hopeful and optimistic CSN Member Posts: 2,346 Member
    edited December 2017 #15
    bone scan

    The American Urological Association recommends a bone scan  for those with a Gleason 8 and above; not for those with Gleason under 8 unless there is a very large quantity.

     Recommend that you have a T3 MRI 

    This is an MRI scan 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. There are certain major hospitals that have MRI machines with a 3.0 Tesla magnet. 

    In my layman’s opinion it is advisable to have such a test before any treatment. If the cancer is outside the prostate you may wish to reconsider a treatment decision.

    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.

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #16
    Thank u very much

    Thank u very much

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #17
    have report looks very hopeful

    core 3 gleason 3+4 tumor size 7mm 80%length of biopsy

    core6 gleason 3+4 tumor size9.5 mm 90 % lenght of biopsy

    core 8 gleason 3+3 tumor size 2 mm 20 % length of biopsy

    urologist recommends radition but my GP whom i have been with for 25 years suggestd removal..get it out and over with  he thinks is the most sure way..granted he is just a GP but he is very knowledgable...i think i will meet with both a radiologist and rbotic surgeon just not sure what questions to ask.......many thanks for all your help and guidence ...i will follow up all the y way with my journey...my doc did say take my time and find the right Dr..he says i should find one that has done the surgury at least 500 times...i am fortunate to have excellent facilities around me...i am in the san francisco bay area....UCSF  as well as Stanford......i am sure i will find  agreat surgeon ...or radiation oncologist

     

  • Tech70
    Tech70 Member Posts: 70 Member
    #18
    Suggest more testing

    I would strongly suggest an MRI to determine if the tumor is contained in the prostate and possibly Oncotype DX genomic testing of the biopsy sample to determine how aggressive the cancer is.  Medicare covers Ocotype testing, but you're too young for that, so check with your insurance company first.   I think because of your age, most doctors will suggest some sort of active treatment. 

  • hopeful and optimistic
    hopeful and optimistic CSN Member Posts: 2,346 Member
    #19
    .

    Well to be honest, your GP is not an expert about prostate cancer....in fact after you do your research, I expect that you will know a lot more about this beast than s/he does.

    As mentioned above a T3 MRI is critical to determine if there is extracapsular extension and how extensive, that is if the cancer has escaped the capsule and will determine treatment.

    I doubt if having a genomic test will affect your treatment decision.

    Surgery is a localized treatment, removing the prostate only with great chance of side effects, while radiation treatment can adjusted the perimeter of radiation to be outside the prostate. In your case of intermediate disease, there is a good possiblity of the cancer being outside the prostate, so the perimeter of the radiaiton will need to be expanded with best chance of eliminating all of the cancer, (within the prostate and immediately outside the prostate).

    Swingshift is one of our forum posters who lives in the San Francisco area who was treated at UCSF with a form of SBRT called Cyperknife and is best qualified to provide information about facilities in the area for you.

    SBRT is given in five sessions or by some doctors four sessions with minimal side effects. Several at this forum have successful undergone this treatment and can give input.

    Here is a nine year study about the success of SBRT and the results of treatments. You will note that there is a 89 percent chance of success for intermediate cancer.

    https://prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt/

     

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #20
    Hmmm ok

    wow I thought I caught this thing early no wonder my dog gone urologist didnt say much....curious how do u determine early intermediate and advanced...I guess intermediate is still better than advanced ..also how do u tell if it’s slow or aggressive .i always heard if u have cancer this is the one to get because it’s so slow moving ...sorry just curious and scared...also seeing an oncologist Thursday that specializes in   radiation therapy and only men with prostrate cancer he treats for 17 years now.....hope he is good man will I have questions for him....I will  try not to panic I know we just have to make sure of everythinggggggg....I hope there is a chance it has not spread .....man I kick myself for accidentally skipping getting checked one year ...dog gone it 

  • Steve1961
    Steve1961 CSN Member Posts: 692 Member
    #21
    Ohh btw swing shift hasn’t

    Ohh btw swing shift hasn’t posted since 2010 but thanks

     

     

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