New diagnosis - any advice appreciated

bcl1234
bcl1234 Member Posts: 3
in Prostate Cancer #1

Hello all,

 

I'mve recently received my diagnosis of PCa and I'm in the middle of learning, weighing options, talking to docs, etc.   I'm very glad to have found this board to read and learn, and tap for informed advice!

My particulars:

Age - 48

No family history of PCa

8+years montioring of slighlty elevated, but steady PSA at ~3.5

MRI (3T / pelvic apron) in January 2017 prior to starting testosterone replacement therapy (due to lazy pituitary gland).  Negative for any lesions, hyperplasia, etc.

4K blood test at same time indicated 95% chance of not having agressive cancer (can't remember exact score).

After few months on testosterone, my PSA went to 4.2 and doctor performed biopsy in December 2017.

Biopsy was positive for PCa.  Gleason of 3+3.  5 of 12 cores had some involvment (2%, 1%, 90%, 60%, 30%).  Staged at T1c.  No perineural invasion noted.

Discussion with urologist provided following:  I'm young to have this cancer;  it's non-aggressive, but there's too much of it and too long of future lifespan for active surveillance; all treatment methods are options for me.  I'm fortunate to have the scores I do and to have caught it early.

 

I've met with urologist/surgeons and radialogical oncologist.  My take away is that (for me) both treatments (RP and IMBT) have very similar and very high chance of "cure".  I've kind of eliminated other treatments (HIFU, etc.) as etiher too expensive, too new, too vague of cure definition, etc.  Not looking at brachytherapy as I have young kids and don't want chance of exposing them to radiation. 

RP seems more invasive than IMBT with worse side-effects:  longer recovery, short to intermediate term incontinence.  The IMBT course of treatment is (of course) much longer, but sounds kind of easy to put with, even with the side-effects.  I spoke to my RO about Cyberknife and he said it was promising, but he thought it too new to recommend.   Also the side-effects sound similar to IMBT.

The doctors have said that it's as much psychological as anything.  Some patients want the cancer gone and don't want to deal with declining PSAs - and go surgery.  Some don't want the surgery and complications and live with some doubt about the progression of the prostate demise.

I'm more in the group that can deal with the dwindling cancer.  My only speical consideration is that the doctors wouldn't want me to go back on testsoterone for some number of years (5!) whereas I could resume in 2 years with RP.  In fact, I'm kind of calm about it, after the initial shock, given the relatively good outcomes the doctors have provided.  I hope that bears out...

 

Thanks for staying with me through this longer than expected post!  So why am I telling you all this?   I'm hoping to that you folks can tell me if my thinking is straight, or if there are factors I'm not considering.  I've tried to read through a lot of blog posts here, but it's hard to get a feel on how RP vs. IMBT is viewed.  How often people opt for one over the other and why?

Any advice, comments, etc. are most appreicated.

 

Regards,

Bryan

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,208 Member
    #2
    Some points to consider

    Hi Bryan,

    Sounds like you are doing your homework and studying the various treament methods.  All the treament plans for Pca have side effects, some worse than others.  Surgery usually has the side effects(ED & Leakage) right after surgery and they get better over time.  The various radiation treaments usually have less side effects up front but can develop side effects latter on.  The radiation can over months & years cause problems with your bladder and colon.  You need to talk with your doctors & family to see which path you want to follow.  Cyberknife is not new and has been around for quite a while so don't let that stop you from investigating that treament.  From what i understand testosterone can feed the cancer cells so I personnally would not take it in the future.

    At 3+3 you have some time to really do your your homework and get comfortable with your type of treament. I did not want the cancer in my body any longer than necessary so I had surgery, but you seem to be leaning towards radiation and that's OK.  There is no right or wrong treament, just study the side effects and realized that there is no going back once you choose.  You have to be prepaired for the results good & bad.  Keep up the good work and be confident that your decision is the one for you and your life, not anyone else.  Good luck.......

    Dave 3+4

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #3
    Gleason 6 but high risk case

    Treatments in PCa depend much on the status of the disease. One needs to trust the classification provided by the attending urologist, who by himself is dependent on the veracity of the data provided by others (the pathologist and the nuclear physician). Many guys get second opinions on the biopsy cores and image exams, and try eliminating doubts that are not common or dubious.. Once the clinical status is resolved, we shall then be aware of each treatment risks and consequences. This is in fact what makes us to decide on something.

    From the data you share above, my curiosity goes to the percentage of cancer found in the cores. I see it as a voluminous PCa case that could be thought as micro colonies not forming a solid tumor. This are considered high risk patients even with a low Gleason score of 6. 

    Interestingly, this is identical to my case. I was diagnosed T1 when 50 yo, had a Gleason score 5 (2+3), six needles positive out of 6 and negative image exams. It was voluminous but the theory of micrometastases didn't exist in my times (2000). DRE was negative and my age played a roll in the urologist's final judgment. From second opinions I got additional cores directed to the nerve bundles and seminal vesicles that were negative and made me to think that the cancer was contained. One year later a different oncologist (MSKCC) told me about the micrometastases. I end up with a pT3apN0.

    In your shoes I would try to checking the veracity of the clinical stage. If ascertained, then radiation may be a better shot.

    Best wishes and luck in your journey.

    Welcome to the forum.

    VGama

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #4
    .

    Gleason 6 does not metatasize, however when there is a great amount as in your case a gleason 4 can be hidden so you would not be a candidate for active surveillance. 

    As a young man your decision at this time is very important since you will have to live a long time with possible side effects.

    The side effects from surgery can be greater than any other active treatment

    Many men at this site have been treated with SBRT of which cyberknife if one of the machines that deliver. Treatment is done in only four or five sessions within two weeks depending on the choice of the radiation oncologist.  The side effects are minimal with a cure rate comparable to surgery or IMRT. Here is a nine year study for your review.

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

    Bracky can be done with temporary seeds, so you will be able to have contact with your children. In fact temporary seeds are preferable to permanent seeds. Many docs only do permanent seeds since there is less work involved. Brachy needs to be done on men who have small prostates; not large.

    Family members are more likely to develop prostate and breast cancers, so let your brothers, sisters, aunts, uncles and even cousins know so that can be monitored.

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    #5
    Looks like you are doing the right things.

    1.  Address the cancer; 2.  Weigh the side effects of treatment.  Welcome to this site.  I have read and used the information in researching that 300 lb Gorilla in my prostate..  I am 67; Gleason 4+3=7.  I will have a RP on March 20, 2018.  Good luck to you.  " You got to fly that plane sometime."

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    edited March 2018 #6
    IMBT = IMRT?

    No one wants to be faced with any kind of cancer of course, but we all agree that you are educating yourself about possible ways to fight back. Excellent!

    I am glad you are rejecting HIFU; a therapy which IMHO isn't ready for prime time and certainly not suitable for a prostate with at least five cancerous loci. 

    With respect to SBRT/Cyberknife, the method has nine year data; a comment also made by Hopeful.

    I also agree that you should look into High Dose brachytherapy, but please be aware that not many urologists are experienced. One contributor (SubDenis) to this forum has reported extensively on this method and ultimately choose it.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #7
    Assessment

    Bryan,

    I agree with all of the above. Most noteworthy is that your involvement is high volume, as vasco noted.

    In atypical cases like yours, it is wise to be aware that Staging and Gleason, when they are wrong, are almost always wrong in underestimating the disease. Overestimation is virtually never heard of here.  Also, very young patients with PCa for some unknown reason tend to end up with more aggressive fights.  I had a cousin die with this in his early 50s, after a dignosis at 45.  The average age at diagnosis for PCa in the US is currently 67 years of age.

    I am NOT suggesting that you are in imminent danger, but be aware of all of the facts going in. Myself, I would not delay in beginning active treatment after my consultations with the various doctors was over.  

    As some noted, SBRT, or trade name 'Cyberknife', might be a great choice with your particulars and age.  Cyberknife does what IMRT/IGRT does, but with fewer treatments. Or IGRT, either one.

    Keep us advised,

    max

  • graycloud
    graycloud Member Posts: 42 Member
    #8
    Treatment options

    My husband was diagnosed in October 2017 after 3 years of rising PSA.  Age  55.  All paths led us to Memorial Sloan Kettering - Dr. Behfar Edhaie 646-422-4406.  .  We started out being approved for their ablation study. But his pathology tested out higher at MSK, Johns Hopkins and Mayo.   He had surgery end of January at MSK with Dr. Edhaie.   Doing pretty good 5weeks post surgery.  If you can get ablation treatment, go for it.  Also, Netherlands has an outstanding ablation program, but it's not covered under insurance.  All out of pocket.   jurgen.futterer@radboudumc.nl.  Mayo also has an ablation study program:  Dr. David Woodrum, Mayo - Rochester, MN  507-284-2511. 

     

     

  • Grinder
    Grinder Member Posts: 487 Member
    #9
    ??? laser ablation?

    graycloud...

    Just wondering... was ablation used to target cancerous tissues in the prostate? Is your husband expecting to have a fully funtioning prostate afterward?... or did it take out the whole prostate? 

    I just had Lasik done on my eye, and with such precise targeting I was wondering how they could deliver it to the prostate and why not. During my Lasik surgery, they cut a top flap, laid it over, then shaved/shaped the cornea, then laid the flap back over. The cornea heals in only a few hours, whereas it took days when they shaped the cornea without cutting the flap.

    So... in the case of the prostate did they insert  an optical fiber cable directly into the prostate to generate the laser? Is that how they get the heat into the prostate to cook the cells? I was wondering about that since Lasik can be done directly on to the cornea so their is no need for "insertion" of the laser source.

    I have to admit, I was not offered ablation as an alternative so it may not be available in this area... but then again, I needed to get the entire prostate out, so it would not have mattered.

    Ablation may be a treatment of choice though, for some cases where the patient requires the use of his prostate still, and the cancerous cells are easily targeted.

     

  • bcl1234
    bcl1234 Member Posts: 3
    edited March 2018 #10
    VascodaGama said:

    Gleason 6 but high risk case

    Treatments in PCa depend much on the status of the disease. One needs to trust the classification provided by the attending urologist, who by himself is dependent on the veracity of the data provided by others (the pathologist and the nuclear physician). Many guys get second opinions on the biopsy cores and image exams, and try eliminating doubts that are not common or dubious.. Once the clinical status is resolved, we shall then be aware of each treatment risks and consequences. This is in fact what makes us to decide on something.

    From the data you share above, my curiosity goes to the percentage of cancer found in the cores. I see it as a voluminous PCa case that could be thought as micro colonies not forming a solid tumor. This are considered high risk patients even with a low Gleason score of 6. 

    Interestingly, this is identical to my case. I was diagnosed T1 when 50 yo, had a Gleason score 5 (2+3), six needles positive out of 6 and negative image exams. It was voluminous but the theory of micrometastases didn't exist in my times (2000). DRE was negative and my age played a roll in the urologist's final judgment. From second opinions I got additional cores directed to the nerve bundles and seminal vesicles that were negative and made me to think that the cancer was contained. One year later a different oncologist (MSKCC) told me about the micrometastases. I end up with a pT3apN0.

    In your shoes I would try to checking the veracity of the clinical stage. If ascertained, then radiation may be a better shot.

    Best wishes and luck in your journey.

    Welcome to the forum.

    VGama

    high risk gleason 6

    Hi VGama,

    Thanks for your sharing your information.  I hadn't read about Gleason 6 being a high risk cancer.  My doctor described it to me as low risk, but too much volume for active surveillance. He said the cancer was mixed with healthy cells like "salt and pepper" within the gland and that was typical for PCA like mine.   He led me to believe that if it were fewer cores, like 2, then I could do AS.  He staged it at T1c.  Not that it matters for me.

    I had considered getting a second opinion from Johns Hopkins on the pathology, but ultimately decided not to.  This is because I've decided to have treatment regardless and the treatments for gland-contained tumors don't seem to deviate from prostatectomy or radiation (primarily) with other options coming after the procedure.   Maybe I should?

    I'm strongly leaning toward radiation as the treatment, primarily to avoid surgery, rather than for it's slightly more extensive treatment plane.  But that is a benefit too, I guess.

    Did you have metastasis of the cancer?  What treatment did you go with?  You wrote you had a 2 + 3 Gleason.  I didn't think that scores below 2 were reported.  But then with a secondary of 3, maybe they are.  If you had the prostte removed, I'm very curious what the pathology of the gland showed.

    Thanks again,

    -BCL

  • bcl1234
    bcl1234 Member Posts: 3
    #11
    Old Salt said:

    IMBT = IMRT?

    No one wants to be faced with any kind of cancer of course, but we all agree that you are educating yourself about possible ways to fight back. Excellent!

    I am glad you are rejecting HIFU; a therapy which IMHO isn't ready for prime time and certainly not suitable for a prostate with at least five cancerous loci. 

    With respect to SBRT/Cyberknife, the method has nine year data; a comment also made by Hopeful.

    I also agree that you should look into High Dose brachytherapy, but please be aware that not many urologists are experienced. One contributor (SubDenis) to this forum has reported extensively on this method and ultimately choose it.

     

    Correction - IMRT

    Hi Old Salt,

    Tahnks for your reply.  I wanted to correct an error in my earlier post.  I meant to write IMRT but mistyped.  Still getting up to speed on the acronyms.  To clarify in my own heard, I'm looking at external beam treatment in the form of Intensity Modulated Radiation Treatment (IMRT).  I'm not looking at bracytherapy right now, but reading up on SubDenis' contribution here.  Thanks for the info.

    -Bryan

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #12
    Newer classification of Gleason rates since 2005

    BCL,

    Back in 2000, all rates of Gleason classification were accounted for. The newer urological standards (since 2005) has dropped such detailed classification and groups all rates lower than 3 into 3, which makes the lower score into 6 (3+3). My rates were confirmed at a second pathologist with the biopsy cores and later, after surgery, at MSKCC and JH from the gland specimens. The pathological stage after surgery indicated a voluminous cancer 60% involvement with extracapsular extensions and positive margins. All 11 dissected lymph nodes were negative as well as the seminal vesicles (pT3apN0).

    The PSA never reached remission post surgery but even without the gland it increased very slowly. In 2006 it reached 3.80 ng/ml and my oncologist Mario Eisenberger at JH recommended doing radiation. I was all this time on WW trying to locate the hidden cancer with annual MRI exams but never got a picture of the bandit. After IMRT I recurred again and in 2010 started IADT (intermittent hormonal therapy).

    No one's case is equal to another but it can be similar. My case was considered as micrometastases which are difficult to detect.

    http://www.jurology.com/article/S0022-5347(09)02704-9/fulltext

    Best of lucks in your case.

    VG  

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