Nervous Introduction

Hellostone
Hellostone Member Posts: 22
edited January 2020 in Prostate Cancer #1

Hello, I am a fairly frightened 53-year-old.  Generally healthy and no family history, but I had a routine physical with my GP this fall (after no doc appointments for several years...); he ordered standard blood work that included a PSA test--which returned a result of 12.3.  Referral to a urologist (for whom the wait for an appointment was almost 2 months) who ordered a confirmatory PSA test -- the result of which was 13.3.  To my knowledge, those are the only PSA tests I've ever had.

After the second PSA test, the urologist scheduled an MRI prior to biopsy, and the mpMRI was done last Friday.  I have a follow-up meeting with the urologiest later this week -- but I'm naturally reading the report that I accessed online.  

 The online report indicates one Pirads 4 lesion in the left posteromedial and posterolateral mid gland peripheral zone.  Sizewise, it says the lesion is 9x9x10mm, and in a 23cc prostate, that sounds sizable to me.  For T2 signal, it says Focal moderately T2 hypointense.  For DWI, it says Markedly ADC dark, DWI hyperintense.  For Focal early enhancement, it says Present.  Otherwise, to my eye, the report doesn't seem to indicate any issues with adjacent structures; for extraprostatic extension, it says Not seen.  No other lesions noted.

 So obviously I'll be enjoying a biopsy soon.  But meantime, with those PSA numbers and that Pirads 4 MRI report, is there anything you guys would recommend I start thinking about in terms of questions, expectations, etc?  Should I be mentally preparing for a more aggressive diagnosis?  I'm already reading through the Walsh Surving Prostate Cancer book and Scholz's Key to Prostate Cancer (where I'm wondering what stage of blue I'll be).  Until recently, I knew next to nothing about PCa, other than the fact that Arnold Palmer had it.  

ETA:  For instance, are there any other books/resources you'd recommend?

 

Thanks

 

«13

Comments

  • IndyJoe
    IndyJoe Member Posts: 15
    Hello and welcome aboard. Great groups of guys here.

    Hi there,

    I want to say hello and wish you well going forward.  There are so many great guys on this forum that give just excellent advice.  I'm sure you will be finding this out soon enough.  My advice is definitely focus on reading / researching info from highly credible sources and avoid the not so credible ones.  One source that I have found that I go back to a lot is the Prostrate Cancer Patient Guide put out by pcf.org (link below).  It's a great source of info with a lot of good detailed content.  Hang in there my friend.  Like you, I was in the exact same boat in Oct and fast forward to today, and I am post treatment (radical prostatectomy) and doing well with a very good outlook....this after clocking a PSA of 32.  I was told I would start to feel much better after getting my team of docs in place and learning more about my specific staging along with the treatment plan.  They were right.  I am very thankful for the guys out here that I would occasionally consult with.  They are the best.   

    https://www.pcf.org/guide/prostate-cancer-patient-guide/

    Take Care.....Joe - Indy

  • Hellostone
    Hellostone Member Posts: 22
    Thanks IndyJoe. Really

    Thanks IndyJoe. Really appreciate your post and gladdened to hear it's going well for you!

  • Tech70
    Tech70 Member Posts: 70 Member
    Stay Calm

    First of all, until you receive your biopsy results, there really is no informaton to base any decisions on.  In the interim, as suggested above, read all you can about prostate cancer and treatments.

    As far as your prostate size, 23 CC is pretty darn small.  Mine is over 80 cc with accompanying BPH issues.

    Don't fret over the biopsy.  If the urologist is skilled, it should be nearly pain free.  I have had 3 and none caused any discomfort.  I found my 2 hour MRI to be much more stressful.

    Good luck going forward.

  • Josephg
    Josephg Member Posts: 317 Member
    Welcome

    Welcome to the Forum that nobody wants to join.  That being said, you are in a GREAT place.  Folks here freely share their personal PCa experiences, as well as give layperson suggestions, based upon their own research and personal experiences.  None of us are doctors or related medical professionals, so we cannot, and will not, give medical advice or medical recommendations in any certified or authoritative manner.

    As Tech70 stated, there is really nothing that you can do related to future treatment planning at this time, until you receive the results of your upcoming biopsy.  The good news is that your completed MRI will help direct the physician to sample the specific areas of the prostate in question, as identified by the MRI.  That should help reduce the possibility of false negatives, and provide a more accurate and complete assessment of your prostate's current state.  Only a biopsy can identify and comfirm the presence of PCa, so at this point, while there may be circumstancial evidence suggesting the presence od PCa, you do not have it for sure, until the biopsy results are in.

    A report, including a Gleason score scaling, will be assembled, once the results of the biopsy are analyzed.  You will want to request a complete report of your biopsy, and if you are willing to share it on this Forum, members will chime in with their thoughts and perspectives, and I believe that you will find this quite valuable to you.  Also, make sure that you will be able to access the specimen slides, as you may want to have those slides sent to a world renowned medical institution, such as Johns Hopkins, for a second opinion (~$200).

    In the meantime, do your research on PCa, what it is, and its potential treatment options and outcomes, and based upon your research, begin to assemble a preliminary list of questions that you will want to review and discuss with your physician, when you visit them to discuss the results of the biopsy.  It is understood, that you will subsequently have many more targeted questions, particularly in terms of treatment options and outcomes, once you have been advised of the biopsy results.

    In the meantime, and I know that this is MUCH easier said than done, try to remain calm and collected, and don't let fear and/or your emotions of the unknown, negatively impact your life and relationships any more that humanly possible.

    PCa is potentially beatable, and even if the outcome after treatments does not result in a cure, you can still enjoy many, many years of quality life.

    I wish you the best of outcomes on your PCa journey, and do not hesitate to ask questions on this Forum.  This is your first post, so please use this same post for future questions, so that your story is located in one place on this Forum.

  • Hellostone
    Hellostone Member Posts: 22
    Joseph, many thanks for your

    Joseph, many thanks for your thoughtful reply; I really (really) appreciate it.  I am trying to keep a calm, restful frame of mind, but today hasn't been a model of that -- at least, since I caculated my PSA/prostate density this afternoon and realized it was over 50%.  I'm hoping that's just another indicator that PCa is likely to be found on biopsy, and that it's doesn't also indicate a greater likelihood that the PCa will be more aggressive -- which of course means that that is exactly what my mind keeps thinking... 

    IndyJoe, thanks again.  That pcf guide is a great resource.

    Tech70, thanks.  Trying not to fret, but fretting is what I (currently) do best!  

  • lighterwood67
    lighterwood67 Member Posts: 324 Member
    Next Steps

    Keep reading.  The definitive test for PC is a biopsy.  Imaging and an elevated PSA do not always equal PC.  However, they do raise suspicion and should be addressed.  For now, good luck on your journey.

  • lighterwood67
    lighterwood67 Member Posts: 324 Member
    Next Steps

    Keep reading.  The definitive test for PC is a biopsy.  Imaging and an elevated PSA do not always equal PC.  However, they do raise suspicion and should be addressed.  For now, good luck on your journey.

  • Hellostone
    Hellostone Member Posts: 22
    edited January 2020 #9

    Next Steps

    Keep reading.  The definitive test for PC is a biopsy.  Imaging and an elevated PSA do not always equal PC.  However, they do raise suspicion and should be addressed.  For now, good luck on your journey.

    Thanks LW!

    Thanks LW!

  • Gforce
    Gforce Member Posts: 21 Member
    edited January 2020 #10
    Keep the faith

    Like you I am a young 53 year old in good shape. I got my first PSA every and it was 17. I went and got a biopsy. Yep, positive for prostate cancer both sides. 12 out of 12 samples positive. Most 6 on Gleason but 1 was a 3+4 so they tagged me as a 7. I went crazy reading everything about prostate cancer and treatement. I got a bone scan (negative), Tesela MRI (cancer containted). Then had to decide on treatment path. I have chosen Proton Therapy vs surgery. If I went the surgery route I was going to lose sexual function for sure so I went Proton. I just had my markers placed and Space Orr gel inserted this week. Start treatment end of this month. 

    If you maintain a healthy weight, eat right, and the cancer is contained, you will live a long life. It scares the hell out of you which is understandable. Just another problem to deal with and you will get through it. 

  • Hellostone
    Hellostone Member Posts: 22
    Gforce said:

    Keep the faith

    Like you I am a young 53 year old in good shape. I got my first PSA every and it was 17. I went and got a biopsy. Yep, positive for prostate cancer both sides. 12 out of 12 samples positive. Most 6 on Gleason but 1 was a 3+4 so they tagged me as a 7. I went crazy reading everything about prostate cancer and treatement. I got a bone scan (negative), Tesela MRI (cancer containted). Then had to decide on treatment path. I have chosen Proton Therapy vs surgery. If I went the surgery route I was going to lose sexual function for sure so I went Proton. I just had my markers placed and Space Orr gel inserted this week. Start treatment end of this month. 

    If you maintain a healthy weight, eat right, and the cancer is contained, you will live a long life. It scares the hell out of you which is understandable. Just another problem to deal with and you will get through it. 

    Thanks Gforce -- and a biopsy question

    Gforce, I really appreciate your post, given how similar our age & PSA numbers are!  That's great that you mostly scored at G6 even if the conclusion was G7 for that one bad core.  Here's hoping that the PT goes well for you!!  And thank you again for your calming words!

    For myself, I met with my uro this morning and was told that a MRI-guided fusion biospy would not be possible for 3 months or so due to lack of hospital room availability, both locally and regionally.  (I would've thought that Boston would have plenty of capacity for this given the many great hospitals around here...)  But the uro said that he could do the biopsy in his office next week, without the software mapping of the MRI slides, but with his knowledge of where the suspect lesion is.  He assured me that he would not "miss" the lesion spotted by the MRI, since my prostate is small and the lesion is good sized (1 cm square); he said it would have been less of a sure thing if the lesion was smaller and my prostate bigger., but mine would be more of a slam dunk (those were not his words but it was clearly his implication).  He indicated he thought I could wait 3 months for fully guided biopsy if I wanted to, but I had no interest in that long a delay, so we booked his biopsy next week.  

    I'm wondering if that choice and rationale sounds sensible to you all?  Or if the software-guided fusion biopsy is worth waiting for??

  • PhotoCraig
    PhotoCraig Member Posts: 2
    edited January 2020 #12
    Join the club

    Welcome... not that you wanted to join but welcome.  A lot of good advice and suggestions here and in the other posts  ACS site has great information as does the Prostate Cancer Foundation.  In your hopefully extensive research you will also come across sites such as the Urology Association which are written for doctors but which still are useful reading.  The good news is there is a ton of information out there and you have lots of time to get smart.  The bad news is you are not a doctor and compiling it is hard.  Lots of information.  Lots of informed opinions online.  I think what is most important is to find a physician you trust and who you can work with.  I live near a univesity medical center which has a ranked urology program.  The department chair does all the prostate and bladder cancer cases himself.  And he is probably the best doctor I have been treated by over the years.  If you don't have that level of support consider finding it.  I would also suggest that if you can, find a couple of friends, collegues, new friends,who have gone through prostate cancer... they are out there.  Everything will be a new experience and it helps to have someone to bounce questions off of so you don't worry.  This feels a little differently than I expected.  How do I best deal wtih this.   

    Good luck.  It sucks.  but it won't be the end of the world or of life as you know it and to a certain extent it hopefully restores some of ones faint in the goodness of friends and the skill of the medical profession. 

  • VascodaGama
    VascodaGama Member Posts: 3,511 Member
    TRUS guided biopsy

    Stone,

    Your doctor is suggesting the traditional TRUS (Transrectal Ultrasound) guided prostate biopsy, probably with a template of 12 needles, which usually is enough to identify the status of the prostate. The MRI guided fusion biopsy is usually performed when the traditional one failed to locate something in spite of a continuous increasing PSA. I believe that your doctor will consider the data from the mpMRI when directing the needles.

    You may be worried for the reported Pirads 4 lesion but this is just a red-flag risen by the radiologist reading the image results, with no valid conclusion for cancer. The gland size of 23cc is also considered normal (mine was 27) and that does not constitute a reason for possible error. The baddy in your case is the reconfirmed high PSA 13.3 ng/ml (mine was 22.4) which is above the gray zone and that may not be judged for BPH because of the normal size of the prostate.
    In any case, should the biopsy be positive, you shouldn't rush. Cancer doesn't spread overnight providing time to patients to educate and decide what to do next.

    So far you haven't been diagnosed with prostate cancer. However, if interested on the subject you may choose a book from this link;

    https://csn.cancer.org/node/311252

    Best wishes,

    VG

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Intro

    Hellostone,

    Your PSA vector suggests that your biopsy will have some positive cores, but at this point, that is only a statistical liklihood.   My brother in the last year has followed a path very similiar to what you describe:  His first-ever PSA a year ago was 10.5, and a year later, just over 11.  His uro did an MRI guided 12-core biopsy, and every core was negative.  Not even any PIN cells.  And, his gland is normal in grams -- not enlarged.  His doc said that he was "shocked," as was I.   So, one never knows.  

    You actually know very little at this point. It is after the biopsy that determinative data will be in hand: the Gleason score, and the volumne of involvement, as well as a few other findings, like whether perineural involvment was seen, etc.   Only after the biopsy will meaningful choices begin.

    I suggest an excellent book for nubies:  Dr Peter Scardino's Prostate Book.   He is former Director of Surgery at Sloan Kettering CC in NYC, and is still a surgeon there today, regarded as one of the best in the world.   He presents ALL diagnoses, how to interpret them, and treatment choices.  He is NOT biased toward surgery, and discusses the pros and cons of all modalities: surgery, Active Survellance, and all forms of Radiation Therapy.   He then discusses all strategies for relapsed disease as well (Hormonal Therapy, Chemo).  The book is a regular stock item at Barnes and Noble and Amazon.

    max

  • guitarhillbilly
    guitarhillbilly Member Posts: 1
    edited January 2020 #15

    Thanks IndyJoe. Really

    Thanks IndyJoe. Really appreciate your post and gladdened to hear it's going well for you!

    What is the normal prostate

    What is the normal prostate density?

    "The normal prostate volume is 15 to 30 cc. Men with prostate volume larger than 30 cc are more likely to be diagnosed with BPH or prostate cancer. ""Prostate Volume and Density" is also a practical medical calculator to calculate prostate density. Prostate density is prostate specific antigen (PSA) divided by prostate volume."


    "A high PSA density means that a relatively small volume of prostate tissue is making a lot of PSA, while a low PSA density means that a large volume of prostate tissue is making relatively little PSA."

    My UR zeroed in on my Prostate density after receiving my MRI results. He recommended a biopsy at that time but I waited another 11 months before having the biopsy. My UR was spot on in his assessment of my Prostate density. The Lab results were T2a and Gleason = 8.
    My prostate was 22 cc at the time of the MRI.

    Please note that the Density Number is also very important in the diagnosis of PC. In my case it was 6.9 / 22 = .313

    My PSA velocity is why all the testing was generated in the first place.

    Until my UR explained this to me I had not seen or heard about this measurement. Most talk is around Total PSA Numbers and PSA Velocity. 

     

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3289697/pdf/cuaj-1-46.pdf

  • Gforce
    Gforce Member Posts: 21 Member
    edited January 2020 #16

    Thanks Gforce -- and a biopsy question

    Gforce, I really appreciate your post, given how similar our age & PSA numbers are!  That's great that you mostly scored at G6 even if the conclusion was G7 for that one bad core.  Here's hoping that the PT goes well for you!!  And thank you again for your calming words!

    For myself, I met with my uro this morning and was told that a MRI-guided fusion biospy would not be possible for 3 months or so due to lack of hospital room availability, both locally and regionally.  (I would've thought that Boston would have plenty of capacity for this given the many great hospitals around here...)  But the uro said that he could do the biopsy in his office next week, without the software mapping of the MRI slides, but with his knowledge of where the suspect lesion is.  He assured me that he would not "miss" the lesion spotted by the MRI, since my prostate is small and the lesion is good sized (1 cm square); he said it would have been less of a sure thing if the lesion was smaller and my prostate bigger., but mine would be more of a slam dunk (those were not his words but it was clearly his implication).  He indicated he thought I could wait 3 months for fully guided biopsy if I wanted to, but I had no interest in that long a delay, so we booked his biopsy next week.  

    I'm wondering if that choice and rationale sounds sensible to you all?  Or if the software-guided fusion biopsy is worth waiting for??

    You have time

    Prostate cancer is so slow growing that you can feel pretty confident in waiting to make decisions. One study found that there was no difference in outcomes after waiting 6 months to make a decision on a treatment plan. My biopsy was done in the Dr. office. I was nervous regarding the pain as I had never been poked in that area before. After numbing the prostate, it was no big deal. Even afterwards just a little sore that day, but next day all was fine. I was diagnossed in July 2019 and wanted to wait till after all holidays to start treatment. My Dr. suggested Lupron as a preventative measure until treatment. I started Lupron in October 2019. The only real side effect for me are the hot flashes. The Lupron lowered my PSA to 2.7 as the cancer cells die for lack of testostorone. I am looking forward to being on the other side come March this year. I have a great summer ahead of me on the water with friends. Life is good! Tough times come and go but tough people stay around for ever. 

  • L1917
    L1917 Member Posts: 4
    robotic prostatectomy in dc

    new to the network.  Gleason 7 (4+3) any suggestions for surgeons who specialize in robotic prostatectomy in washington dc area? 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    DC

    L1917

    DaVinci surgery is today very common, undoubtedly the norm for R.P.s.  The best hospital in the DC area is Johns Hopkins, actually one of the best in the world.    You should have a pretty easy time finding an excellent surgeon in the area.

    max

  • Hellostone
    Hellostone Member Posts: 22

    Intro

    Hellostone,

    Your PSA vector suggests that your biopsy will have some positive cores, but at this point, that is only a statistical liklihood.   My brother in the last year has followed a path very similiar to what you describe:  His first-ever PSA a year ago was 10.5, and a year later, just over 11.  His uro did an MRI guided 12-core biopsy, and every core was negative.  Not even any PIN cells.  And, his gland is normal in grams -- not enlarged.  His doc said that he was "shocked," as was I.   So, one never knows.  

    You actually know very little at this point. It is after the biopsy that determinative data will be in hand: the Gleason score, and the volumne of involvement, as well as a few other findings, like whether perineural involvment was seen, etc.   Only after the biopsy will meaningful choices begin.

    I suggest an excellent book for nubies:  Dr Peter Scardino's Prostate Book.   He is former Director of Surgery at Sloan Kettering CC in NYC, and is still a surgeon there today, regarded as one of the best in the world.   He presents ALL diagnoses, how to interpret them, and treatment choices.  He is NOT biased toward surgery, and discusses the pros and cons of all modalities: surgery, Active Survellance, and all forms of Radiation Therapy.   He then discusses all strategies for relapsed disease as well (Hormonal Therapy, Chemo).  The book is a regular stock item at Barnes and Noble and Amazon.

    max

    Thank you

    Belated thanks Max & VG et al.  We'll see what tomorrow's biopsy yields me.  Have confirmed it'll be a standard 12-sample TRUS biopsy, with additional cores taken in the Pirads 4 area spotted on mpMRI.

    Meanwhile, I'm reading/collecting books -- so far, Walsh's Surviving Prostate Book, Scholz's Key to Prostate Cancer, Scardino's Prostate Book, McHugh's Decision, and Strum's Primer.  I was listening to Korda's Man to Man during my commute, but decided the narrative of his surgery (open surgery by Dr Walsh in the mid-90s, I think) and its aftereffects wasn't helping my current frame of mind....

    Thank you 

  • Hellostone
    Hellostone Member Posts: 22
    Biopsy Results

    Just a quick follow up after getting my biopsy results this morning. The hypothetical is now real:  PCa diagnosis with one soft G7 (3+4) and five bad G7s (4+3). Several cores show 80-90% involvement, and presence of perineural invasion. Cat scan scheduled a few weeks from now. 

    Damn, not the G6s I was hoping for, but I have No doubt who's going to win this battle.  

    I guess my research now needs to get more focused.  

     

     

  • Gforce
    Gforce Member Posts: 21 Member
    edited January 2020 #21
    Proton Therapy

    Hey my man, I have now completed 2 of my 40 Proton treatments. The treatments are as billed: simple, painless, and I suspect effective. My initial diagnosis was all my cancer was contained. However, being on Lupron priior to my treatments, my PSA should have remained in the 2s or lower. My PSA as of yesterday was 5.5, and testostorone was up to 117 which should be under 50. My doctor now suspects my cancer grade is higher than 3+4 on my biopsey. I will be seeing a medical oncologist next week for other tests as they are concerned with lymp node invasion. No indication on my tesula MRI of any lymp involvement but now will wait and see. Good news is that the Proton beam can treat my lymp nodes if needed. Scary stuff but you are just along for the ride. No control. I had 2 cores 80%. You are going to beat this cancer and live a long life.