Recently diagnosed and new to the forum as well

weasel56
weasel56 Member Posts: 9

Greetings,

This seems like a good place to start.  March 1 I went to see my new doctor for a physical and update my PSA number. It had been 3 yrs since I had seen a doctor.  Historically my psa has been low for my age however during my DRA the doctor felt a nodule on my prostate.  That psa was 3.7 with blood detected in my urine. I was referred to a urologist/surgeon for a DRA and a more detail psa test that would indicate what percentage was free and bound.  The next psa was 3.07 and the percentage of free was 19.9%.  The doctor recommended a biopsy, CT scan, and a cystoscopy.  The ct scan was good, the pics of the bladder were good (seeing the inside of my bladder in living color was cool) I was horribly scared of the biopsy and dreaded the day.  All this was done in one clinic visit.  For a guy who has his wife field dress his deer I thought for sure I would be passed out before I got my shoes off.  The doc numbed the area with lidocaine came back about 10min later, I tried to negotiate an 8 core instead of 12 core but to no avail.  To my surprise the pain was no more than a light prick, all 12 shots. I couldn’t believe it! I had blood draws that hurt more.  Of course later that day I started bleeding hard and wound up in ER and spend the next 2 days in the hospital as a precaution.  My wife and I went back to see the doc regarding the biopsy results. My Gleason score was 7 with cancer found in 4 of the 14 cores.  The doc says I have a slow growing cancer and as best as they can tell it is confined to the prostate. (the horse is still in the barn) He went through the various options and said I should consider what I would like to do for treatment.  He conveyed no sense of urgency but told me I shouldn’t wait any longer that 6 months either. He recommends a prostatectomy.  So here I am at 60 yr old planning on being a cancer survivor looking to see what others are going through.  As a first step I want to connect with those who have already begun this journey hoping to learn and be well informed on what lies ahead and what decission to make.

Thanks.

 

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Comments

  • Clevelandguy
    Clevelandguy Member Posts: 980 Member
    Time to start

    Hi,

    With a score of 7 you should know if it's a 3+4 or a 4+3, it does make a difference.  The fiirst number is the majority of cells in the bioposy taken, the second number is the minority of cells.  They are graded from 1-5 usually in the 3-5 range.  3 being less agressive, 5 being agressive.  Surgery is a quick get it out zero psa from the getgo where radiation is a slow progression over many months to zero psa.  I chose surgery but other folks on the board chose radiation. I sleep vey well at night with undetectable psa readerings over the last couple of years.  It up to you to decide once you way all the factors. Each treatment regiment has its own side effects which need to be considered.  Which ever treatment you decide on(radiation or surgery) get the best doctors at the best facilities you can find.  The latest technology along with a experienced oncologist & urologist(need to talk to both) will go a long way to getting you rid of the cancer.  Most the time if the cancer is within the prostate then either surgery or radiation will work, if outside the prostate then radiation/drugs might be a better solution.  The up front diagnostic work is invaluable in determining the agressiveness and location of the cancer so you have a clear direction for your treament.

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    The best diagnosis leads to better outcomes

    Weasel

    Welcome to the board. The data you share above (4 positive cores out of 12, Gleason score 7, positive DRE and PSA=4.07 ng/ml) indicates your case being in risk of existing extra capsular extensions. Gleason rate 4 is an aggressive type and if that is the majority of cells (as instructed by Cleveland above) found by the pathologist then you need to consider options in combined therapies.

    I wonder what is described in the biopsy report. Is there any reference regarding the nodules felt by the urologist?
    What is the location of the positive cores?
    Did they identify existing calculi?

    Can you share details regarding the sphincter area as seen in the cystoscopy; was there any justification for the blood found in urine?

    Did you get a clinical stage from the urologist?

    The negative CT is typical in a patient with a PSA less than 10.0. In your shoes I would request a better image study (3t-MRI or PET) before engaging in a decision. You should also get second opinions from independent doctors in each modality.

    Treatments involve risks and side effects so that you need to educate on the matter. I recommend you to prepare a list of questions and get your wife to accompany you in the meetings with the doctors. Here are links that will help you to understand the situation;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews[tt_news 5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    I would recommend you to file all the data collected so far and take notes from the consultations.

    Best wishes and luck.

    VGama 

  • weasel56
    weasel56 Member Posts: 9
    more data

    My geason score was 3+4 Stage B2   (=T2C)
    tissue A - prostate right base biopsy -negative for carcinoma
    tissue B- prostate right mid biopsy - prostatic acinar adenocarcinoma gleason score 3+3=6 involving 15% of one of 2 cores with a small focus on perineural invasion.
    tissue C- prostate right apex biopsy- prostatic acinar adenocarcinoma gleason score 3+4=7 involving 2 of 2 cores at 50% each; pattern 4 occupies <5% of one core.
    tissue D- prostate left base biopsy- acute and chronic inflamation negative for carcinoma.
    tissue E- prostate left mid biopsy- chronic inflamation negative for carcinoma.
    tissue F- prostate left apex biopsy- prostatic acinar adenocarcinoma gleason score 3+3=6 involving 10% of 1 of 2 cores.

    I dont recall if he was able to get a core sample of the nodual and there is nothing in the report.  There was no mention as to why or where the blood in my urine came from and I forgot to ask.  BTW 10 plus yrs ago I had a urine test and was told the same thing but nothing was done.  That is one of my follow up questions.  As far as the sphincter area is concerned I can only report what I saw. When the doc turned the camera around to view the entry point into the blader I noticed it was a redish area circular around the cable I commented on that and he said it was inflamation from the camera cable. I have no document report on the cystoscopy or the CT.

    Thanks VGama and Dave for asking more questions and pointing out some things to look into.  I will ask about 3t MRI and PET.  I will be also be asking my IM doctor for a referal to see an oncologist.

     

     

  • Grinder
    Grinder Member Posts: 487 Member
    weasel56 said:

    more data

    My geason score was 3+4 Stage B2   (=T2C)
    tissue A - prostate right base biopsy -negative for carcinoma
    tissue B- prostate right mid biopsy - prostatic acinar adenocarcinoma gleason score 3+3=6 involving 15% of one of 2 cores with a small focus on perineural invasion.
    tissue C- prostate right apex biopsy- prostatic acinar adenocarcinoma gleason score 3+4=7 involving 2 of 2 cores at 50% each; pattern 4 occupies <5% of one core.
    tissue D- prostate left base biopsy- acute and chronic inflamation negative for carcinoma.
    tissue E- prostate left mid biopsy- chronic inflamation negative for carcinoma.
    tissue F- prostate left apex biopsy- prostatic acinar adenocarcinoma gleason score 3+3=6 involving 10% of 1 of 2 cores.

    I dont recall if he was able to get a core sample of the nodual and there is nothing in the report.  There was no mention as to why or where the blood in my urine came from and I forgot to ask.  BTW 10 plus yrs ago I had a urine test and was told the same thing but nothing was done.  That is one of my follow up questions.  As far as the sphincter area is concerned I can only report what I saw. When the doc turned the camera around to view the entry point into the blader I noticed it was a redish area circular around the cable I commented on that and he said it was inflamation from the camera cable. I have no document report on the cystoscopy or the CT.

    Thanks VGama and Dave for asking more questions and pointing out some things to look into.  I will ask about 3t MRI and PET.  I will be also be asking my IM doctor for a referal to see an oncologist.

     

     

    Addendum

    Hey... Just wanted to add something. If you have had any issues with severe BPH or prostatitis, or you have a family history of BPH, prostatectomy will remedy that as well as the PC. If not, prostatectomy is riskier, and other treatments may be preferential. It all comes down to the expertise of your surgeon in using the Davinci robotics. I had posted a surgeon scorecard, but noticed they haven't updated it since 2015, so it won't be of much use after call. But if you do go the prostatectomy route, make sure the surgeon is experienced, qualified, and a low record of complications. Incontinence for a few months and ED for a year or so in most circumstances, but as some of the guys will tell you, it doesn't always work out that way. 

      Oh, and BTW, prostatectomy WILL shorten the length of your business. By as much as two inches. When they remove the prostate they also take the one to two inches of the urethra embedded in the prostate as well.

      YES! Recently, a nurse wrote on a report that I was UNCIRCUMCISED!! Yes, true story! So there are certainly drawbacks to removal, but in my case it was worth it because of prostatitis and BPH. If those are not a threat for you, then some of the other guys in this forum strongly recommend other procedures/treatments. But for me it was a lifesaver and the consequences have been minimal because I had a great surgeon, and I prayed a lot. The surgery itself is a piece of cake. 

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Is it really contained?

    Weasel

    The percentage of Gleason grade 4 is minimum and the cancer was located at the apex (closer to the rectum) which is where most cancers are found. This is also the area with the bumps felt by the doctor. The base (close to the sphincter) had inflammation which fits what you saw in the cystoscopy. Most probably this is what caused the blood in the urine. This also could justify a portion of the elevated PSA (not only cancer).

    This information is great as it indicates that the sphincter area is clean,so it could be left undisturbed to avoid any case of incontinence. It also grades your case to a lower intermediate risk. However, the finding that "small focus on perineural invasion" exists makes your case suspicious for existing extra prostatic extensions. This is one of the escaping routes used by the cancer. The bumps could also be judged as existing positive margins (???). The stage T2c is only acceptable due to the negative CT scan, which by itself has limits in detecting cancer. This is the info still missing for a better guess on the clinical stage.

    Surgery is suggested to treat contained cases, as this provides cure 100%. But in localised cases not contained surgery would not be sufficient. Radiation (in its many forms) would be preferable for a localized case. Radiation can also assure the same results in terms of cure as much as surgery, in contained cases. The choice is yours.

    In regards to the above I would recommend you in getting the best image study for certifying the area surrounding the gland (in particular at the mid and apex zones. This info will give you peace of mind when chosing your treatment.

    Mean while you could treat the inflammation and check again your PSA. You also could get a full health check up to prepare your self for the major treatment. I recommend checking the lipids, Heart health, Bone densitometry (PCa likes weaker bone), colonoscopy (ulcerative colitis in the area could prohibit radiation), testosterone (important marker in PCa treatments).

    Best,

    VG

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited April 2017 #7
    Choices to consider, again . . .

    Well, this sticky of mine is really getting a workout recently.  Here it is again.  Hope you find it of use, Weasel56.  If you have any questions about my treatment of choice -- Cyberknife (a form of stereotactic body radiation therapy) -- please don't hesitate to ask. 

     




    The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

    Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

    The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

    Choices You Need To Consider:

     . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

    1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

     2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

     3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

     4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

     4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

     I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

     So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

     Good luck!




  • weasel56
    weasel56 Member Posts: 9
    small headway

    Grinder, vg, and Swing-

    Thanks for the feedback and other questions to get answered. First off I ask my primary care giver for a referral to see a radiation oncologist.  He told me he could set up a consult with radiation oncology.  So I will start there. To answer grinder I'm not aware of any family history of BPH or prostitus.  I have not heard those terms and I had to look them up.  I have no difficulty in urinating or emptying by bladder.  I will say that my tail off takes a little longer than when I was younger and if I get up in the night I have to be a little more patient. I dont have to work at it or force it, no discomfort either.  My surgeon uses the open procedure and has been at it for over 20 yrs.  I have yet to speak to any of his patients and I do not know his track record. However, I do want a excellent surgeon if I go that route, and I will pray as well.  Does anyone know why the sphincter has to get cut out with the prostate and not separated?  Why is the prostate not peeled off the urethra and left alone, I speak as an engineer.  Isnt there a synthetic urethra that can bridge the gap? I have hernia mesh in me and that works great.

    VG- I was wonder why the inflammation and what could be done if anything.  The perineural invasion was not mentioned or it went over my head but that is not good because it infers that the cancer can leave the prostate at will and could very well be outside the capsule.  The surgeon said it may or not be contained and said even during surgery there is no guarantee that the cancer would be completely removed.  I will ask about the possibility of extra prostatic extensions and positive margins.

    Swing- I read your post on another thread. You are an advocate for CK for sure, cant say I blame you.  I have 2 questions

    1. Once you get the 3 markers in your prostate can you ever get an MRI?

    2. I have been told that if you go the radiation route then surgery is off the table.

    Thanks for all the feedback

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    What's the benefit in thinking two radicals from the biginning

    Weasel

    The Path report you wrote above states existing "... prostatic acinar adenocarcinoma gleason score 3+3=6 involving 15% of one of 2 cores with a small focus on perineural invasion". This is a very critical finding and what could disqualify surgery as the best option. More info is required and such may be provided by an appropriated image exam.

    Regarding the inflammation; this is something that in some cases is difficult to treat. I do not know the reason but many guys here have reported asymptomatic chronic inflammation (UTI) that never gone away. There are even theories that PCa may start from a earlier chronic Bacterial Cystitis. I would discuss the matter with your urologist but would insist in having a one month protocol of anti bacteria/inflammatory medication before the main treatment.

    Your description about the surgeon comment intrigues me. He is not sure of your clinical stage and say that "... it may or not be contained". This is exactly what we discussed above. The clinical stage T2c is not rightful. He should have said that it could be a T3a case. For my surprise he also comments that ".... during surgery there is no guarantee that the cancer would be completely removed", instigating that surgery may become a failure and that you may latter require addition salvage therapy. In short words he says that your case is localized, and probably contained.
    Surely this influences the treatment. I am against the idea in having two radicals (RP plus RT) if one treatment seem to be enough from the start. I cannot understand why someone would choose surgery just for the sake of having radiation later. What's the benefit?

    Regarding the sphincter issue; There are two sides, one at the bladder and another (an extension) at the urethra. The one cut off at surgery is the urethra side. Incontinence can therefore be avoided if the sphincter at the bladder is left intact. Open surgeons are good in dissecting the gland (with their hands) at this area. Many Robot surgeons prefer to cut less giving a thicker margin untouched. This is seen as one of the reasons for frequent recurrence cases in DaVinci operations, in guys found with PCa at the base.

    A portion of the urethra is always dissected which lengths vary by case (longer when voluminous cases). One inch is common (the size of the gland) so that after surgery one must manually pull the penis (masturbate) frequently to avoid barring. Some guys have reported that when seat on the toilet they pee out under the lid as the penis now is pointed frontwards.

    Best,

    VG

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited April 2017 #10
    weasel56 said:

    small headway

    Grinder, vg, and Swing-

    Thanks for the feedback and other questions to get answered. First off I ask my primary care giver for a referral to see a radiation oncologist.  He told me he could set up a consult with radiation oncology.  So I will start there. To answer grinder I'm not aware of any family history of BPH or prostitus.  I have not heard those terms and I had to look them up.  I have no difficulty in urinating or emptying by bladder.  I will say that my tail off takes a little longer than when I was younger and if I get up in the night I have to be a little more patient. I dont have to work at it or force it, no discomfort either.  My surgeon uses the open procedure and has been at it for over 20 yrs.  I have yet to speak to any of his patients and I do not know his track record. However, I do want a excellent surgeon if I go that route, and I will pray as well.  Does anyone know why the sphincter has to get cut out with the prostate and not separated?  Why is the prostate not peeled off the urethra and left alone, I speak as an engineer.  Isnt there a synthetic urethra that can bridge the gap? I have hernia mesh in me and that works great.

    VG- I was wonder why the inflammation and what could be done if anything.  The perineural invasion was not mentioned or it went over my head but that is not good because it infers that the cancer can leave the prostate at will and could very well be outside the capsule.  The surgeon said it may or not be contained and said even during surgery there is no guarantee that the cancer would be completely removed.  I will ask about the possibility of extra prostatic extensions and positive margins.

    Swing- I read your post on another thread. You are an advocate for CK for sure, cant say I blame you.  I have 2 questions

    1. Once you get the 3 markers in your prostate can you ever get an MRI?

    2. I have been told that if you go the radiation route then surgery is off the table.

    Thanks for all the feedback

    Answers . . .

    1.  Yes, you can still get an MRI.  It's actually necessary to get an MRI to properly align the markers for treatment w/CK.

    2.  Yes, I've heard that but it's irrelevant.  While post-radiation surgery is "possible," why would you want to do it?  You can just get a follow-up radiation treatment instead.  Haven't heard of any reasons not to do so. 

    An MRI/MRSI 3T spectrographic scan probably would be done to locate the recurrent cancer and, if you are using CK, it can very precisely targeted.  IMRT is also an option but it's less precise and they'd probably just want to hit the entire prostate again.

    When I raised this possibility w/my RO when we were worried that I had experienced a recurrence, he actually suggested brachytherapy as the followup method and when I suggest just doing CK again, he acted as though he never thought of that before. 

     

    Not sure why he reacted that way.  I don't think there's any reason why it can't be done; just that it's probably not been done yet. 

     

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    edited April 2017 #11
    Hi Weasel,  I am new to this

    Hi Weasel,  I am new to this board, but have particpated in several other prostate cancer forums for several years.

    While I have a low stage case, and remain untreated (in a strict AS program), I am very aware of the discussions and feedback regarding the various treatment options.

    That said, I support everything that Swingshiftworker has stated above. The recent results from SBRT/Cyberknife are much better than surgery, especially for long term side effects.

    That would be my choice, if I were you.  Good Luck.

  • weasel56
    weasel56 Member Posts: 9
    learning and moving forward

    Hey all,

    Last week I met with a radiation oncologist for about an hour. He also took the time to talk to the pathologist regarding my biopsy prior to our meeting.  He talked about the types of radiation treatments and the potential side effects.  He did say that surgery after radiation is possible but much more difficult and went into some detail as to why. When I asked him what he would do if he were me he said he would have the surgery.  That was a shock.  The oncology dept hasnt developed into offering brachytherapy or SBRT and the like.  He suggested that if I wanted to pursue the cyberknife, SBRT, or the more advanced treatments that I should go to a university hospital or a major city hospital that has a track record with the latest treatments.  However, while I was in the waiting room I saw a posting on the door for a prostate cancer support group that meets every month and the next meeting was the very next day.  I was welcome to join the meeting and I'm glad I went.  The group was about 10 in number.  They all had a story to tell and were able to share their journey.  The kindest gentleman was one who had gone through the most.  He had pc when he was 50 and he is now 75.  The youngest gentleman had his robotic surgery 3 yrs ago and counting. They all know the surgeons in urology and spoke highly of them.  Those in the group supported surgery as a preffered treatment. I dont think any of them have had salvage radiation, but two have been on hormone therapy. 

    I had heard that there was a gentleman where I work that had pc treatment.  When I spoke with him he said he had been diagnosed with pc two yrs after his brother.  Both he and his brother used the same surgeon but he had his done robotically where his brother had his done open.  I asked him about his psa and gleason score and he couldnt remember.  His surgery was over 5 yrs ago and he doesnt have any incontinent problems unless he get to laughing too hard, wears no pad, zero psa, no post treatment.  Still has sex with his wife though it is not the same.  He said he had a good surgeon and healed quick.  So I have a meeting on May 1 with this surgeon who's specialty is DaVinci robotic surgery.  In the mean time I plan on talking with others in my area who have had prostate cancer and what treatment they have undergone.

    weasel 

  • JJMWFF1955
    JJMWFF1955 Member Posts: 20 Member
    edited April 2017 #13

    The best diagnosis leads to better outcomes

    Weasel

    Welcome to the board. The data you share above (4 positive cores out of 12, Gleason score 7, positive DRE and PSA=4.07 ng/ml) indicates your case being in risk of existing extra capsular extensions. Gleason rate 4 is an aggressive type and if that is the majority of cells (as instructed by Cleveland above) found by the pathologist then you need to consider options in combined therapies.

    I wonder what is described in the biopsy report. Is there any reference regarding the nodules felt by the urologist?
    What is the location of the positive cores?
    Did they identify existing calculi?

    Can you share details regarding the sphincter area as seen in the cystoscopy; was there any justification for the blood found in urine?

    Did you get a clinical stage from the urologist?

    The negative CT is typical in a patient with a PSA less than 10.0. In your shoes I would request a better image study (3t-MRI or PET) before engaging in a decision. You should also get second opinions from independent doctors in each modality.

    Treatments involve risks and side effects so that you need to educate on the matter. I recommend you to prepare a list of questions and get your wife to accompany you in the meetings with the doctors. Here are links that will help you to understand the situation;

    http://www.ccjm.org/index.php?id=105745&amp;tx_ttnews[tt_news 5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    I would recommend you to file all the data collected so far and take notes from the consultations.

    Best wishes and luck.

    VGama 

    Diagnosis

    My diagnosis was 4+4   7 of 8    The Uroligist never gave me the clinical stage.   My PSA was 9  but since I was on finasteride according to the Urologist it is doubled.  So I guess it was 18.   They did a ct and a bone. I did not request a 3t-MRI or PET because the Urologist never explained to me that there were better images studies.  In the case of Lung cancer victimes they do MRI ever three months but for some reason on prostate cancer they only do a PSI test until the results indicate that image test is necessary.

  • Swingshiftworker
    Swingshiftworker Member Posts: 1,017 Member
    edited April 2017 #14
    weasel56 said:

    learning and moving forward

    Hey all,

    Last week I met with a radiation oncologist for about an hour. He also took the time to talk to the pathologist regarding my biopsy prior to our meeting.  He talked about the types of radiation treatments and the potential side effects.  He did say that surgery after radiation is possible but much more difficult and went into some detail as to why. When I asked him what he would do if he were me he said he would have the surgery.  That was a shock.  The oncology dept hasnt developed into offering brachytherapy or SBRT and the like.  He suggested that if I wanted to pursue the cyberknife, SBRT, or the more advanced treatments that I should go to a university hospital or a major city hospital that has a track record with the latest treatments.  However, while I was in the waiting room I saw a posting on the door for a prostate cancer support group that meets every month and the next meeting was the very next day.  I was welcome to join the meeting and I'm glad I went.  The group was about 10 in number.  They all had a story to tell and were able to share their journey.  The kindest gentleman was one who had gone through the most.  He had pc when he was 50 and he is now 75.  The youngest gentleman had his robotic surgery 3 yrs ago and counting. They all know the surgeons in urology and spoke highly of them.  Those in the group supported surgery as a preffered treatment. I dont think any of them have had salvage radiation, but two have been on hormone therapy. 

    I had heard that there was a gentleman where I work that had pc treatment.  When I spoke with him he said he had been diagnosed with pc two yrs after his brother.  Both he and his brother used the same surgeon but he had his done robotically where his brother had his done open.  I asked him about his psa and gleason score and he couldnt remember.  His surgery was over 5 yrs ago and he doesnt have any incontinent problems unless he get to laughing too hard, wears no pad, zero psa, no post treatment.  Still has sex with his wife though it is not the same.  He said he had a good surgeon and healed quick.  So I have a meeting on May 1 with this surgeon who's specialty is DaVinci robotic surgery.  In the mean time I plan on talking with others in my area who have had prostate cancer and what treatment they have undergone.

    weasel 

    Your life, your choice . . .

    Choose well.  Good luck!

  • bassoneman
    bassoneman Member Posts: 58
    Weasel good luck..  I was in

    Weasel good luck..  I was in your position back in February of this year..  I found out My gleason score on Valentines day 3+4 50% of two cores 30% 3 20%4.. other two cores were 3+3's   .  The choice process is I think the hardest part. But my choice sort of got made for me..  I have heart issues 7 stents..  And found out a month prior to the Biopsy I also have Afib.. Plus carotid issues. So surgery of any kind including brac.   was taken off the table due to the possibilty of  having a heart attack or a stroke during surgery. ( a funny side note: When I was speaking to a few of my close friends about not being able to get the surgery due to it could kill me or cause a stroke they strongly suggested I get a second opinion, Well the opinion that somthing could kill me is all the opinion I need.. HAHA ) I wasn't offered CK. I didn't know to ask about it..  I just had my 24th IMRT today..  They are going to up the dose for the next 15 treatment starting tommorow..  My side effect come from the Biopsy. Lot of pain that started with the biopsy.  Hopefully they can figure that out.. The pain can get unbearable.  The side effect so far from the radiation is urgency.. When I got to go I got to go..      I am very positive that the PC  will be taken care of.  I can't do Hormone treatment either.. Damn heart is a dictator..

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Similar case but different outcome

    I think you doing it well in gathering information on treatments. However you should know that rarely we find two equal prostate cancer cases. We may be similar but it may be futile to expect having the same outcome. Treatments are decided based on the diagnosis of that particular patient.

    I hope you find what better suits you and feel comfort. Trusting our doctor is a great step forwards towards success.

    Best,

    VG

  • weasel56
    weasel56 Member Posts: 9
    post-prostate

    I had my prostate surgery Tuesday and was released yesterday.  I had the robotic surgury, the doc tells me that it went very well and things looked real good.  I will be waiting a few days for test results.  It may sound strange (my family thought so) but I asked the surgeon for a digital picture of the prostate brfore it went to lab, afterall we have been together for 61 yrs. and I wanted to see it. The cath is an irritant so I will be glad when that comes out next Thursday but it is tolerable.  I've got staples in 5 different places and the stomach sorness has me moving gingerly.  The surgury recovery is one thing, the real question of what will be the extent of my recovery and what life style will I have to adjust to is in the future. I'll deal with it as it comes. 

    Wes

  • Old Salt
    Old Salt Member Posts: 1,284 Member
    edited August 2017 #18
    Excellent mental approach

    Hope that your recovery will be uneventful. I didn't go the surgery route (too old for that), but have read over and over that walking is good. But don't overdo it. After all, a prostatectomy is major surgery.

  • Ilexxx
    Ilexxx Member Posts: 1
    Newly Dianosed

         My husband just got the call today no one wants. 'You have cancer".  His Gleason score was 8.  PSA OF 6.4.  IT WENT UP .2 POINTS IN A MONTH.  The doctor said one side was not aggressive cancer but the other side was.   He has a bone scan in a few days.  I am scared.  Very scared.  He has had pain in his shoulder and I assume it is not cancer related but it worries me.  He has frequency, urgency and blood in his urine.  I came here because I need support.  Thank you in advance.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    weasel56 said:

    post-prostate

    I had my prostate surgery Tuesday and was released yesterday.  I had the robotic surgury, the doc tells me that it went very well and things looked real good.  I will be waiting a few days for test results.  It may sound strange (my family thought so) but I asked the surgeon for a digital picture of the prostate brfore it went to lab, afterall we have been together for 61 yrs. and I wanted to see it. The cath is an irritant so I will be glad when that comes out next Thursday but it is tolerable.  I've got staples in 5 different places and the stomach sorness has me moving gingerly.  The surgury recovery is one thing, the real question of what will be the extent of my recovery and what life style will I have to adjust to is in the future. I'll deal with it as it comes. 

    Wes

    great

    Glad all went well, weasel.  While a complete pathology report might have to wait a few days, some checks are ordinarily done while "on the table," so that the surgeon can confirm that he can close. This somewhat indicates that there most likely will be no serious surprises in the full report.

    I am surprised that you have staples, since my small incisions were only taped.

    Moving around will as you say take a few days. Cath removal is painless and only takes a few seconds.  You might get urinary control fast if you're lucky, but do not expect sensation in the pelvic region forsome time, ordinarily at LEAST a month.  I was out of diapers in two days, which is better than average, but had to wear pads or liners for some time thereafter.

    All of the best surgeons recommend getting on Cialias soon after prostectomy, to encourage blood flow in the penile vascular tissue. Not doing so can allow atrophy to begin. Cialias at this point will NOT cause erections -- it is just to stimulate blood flow for now.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Ilexxx said:

    Newly Dianosed

         My husband just got the call today no one wants. 'You have cancer".  His Gleason score was 8.  PSA OF 6.4.  IT WENT UP .2 POINTS IN A MONTH.  The doctor said one side was not aggressive cancer but the other side was.   He has a bone scan in a few days.  I am scared.  Very scared.  He has had pain in his shoulder and I assume it is not cancer related but it worries me.  He has frequency, urgency and blood in his urine.  I came here because I need support.  Thank you in advance.  

    Sorry

    Sorry regarding the bad news IIexxx.

    It is very unlikely the shoulder pain is PCa related; people assume every ache and pain is their disease initially.

    MOST new PCa (Prostate Cancer) cases are very treatable, and a majority are curable.  Oncologists do not use the word 'cure' as much as in earlier decades, but 'cure' here means put into permanent remission, such that there is no detectable evidence of disease ("N.E.D."). The more you learn the more you will realize that there is no cause for panic.  Prostate Cancer is virtually never an "immediate killer", the way lung or pancretic or some others sometimes are.  Relax and get prepped for the upcoming scans.  AVOID THE INTERNET, except for academic, university sites: Places like MD Anderson Cancer Clinic, Sloan-Kettering, Johns Hopkins University Medical School, The Cleveland Clinc, Stanford University, University of San Francisco, Emory University (Atlanta), or Duke.

    I recommend you start your own Thread (topic) for him. Just go back to the Prostate list of topics, and there is an option to "Add New Forum Topic."   Super easy.

    max