New to forum, looking for advice

redbelly7
redbelly7 Member Posts: 34
in Prostate Cancer #1

I am 53, had a TURP last year, discovered Geason 6 cancer, so watch and wait.  8 months later, biopsy showed Gleason 9, so prostatectomy w/ pre PET Scan.  Dr told me 10 days after surgery that I will need to go through radiation, due to cancer being in margin walls and in seminal vesicles.  Dr removed 34 lymph nodes and all came back negative for the cancer.  Operation was on May 30, 2017.  Had PSA about 2 weeks ago and it was 0.04.  So I have started Lupron and oncologist suggested Zytiga along w/ the Lupron, but trying to get approved for financial help, since insurance will not cover it.  And it looks like radiation will begin mid to late August.

No 1. The pre PET scan was to show the Dr where the cancer was, so he could take out those lymph nodes.  If PET scan worked, why wouldn't he have taken out the seminal vesicles? and why did he take out so many lymph nodes that were negative?  I am guessing he felt the lymph nodes had cancer since it was in marginal walls.

No 2. Given my situation, how does the Lupron, Zytiga (if I can get approved for it) and radiation sound?  If I can't get on Zytiga, what next?

Thanks,

 

 

Comments

  • GeorgeG
    GeorgeG Member Posts: 152
    #2
    Welcome to the forum and the

    Welcome to the forum and the club. There are many here that can help guide your decision process. Try to stay positive and keep getting educated. Imaging the prostate has been a challenge and we are only recently getting capability such as PET scans with newer contrasting agents but this area is not fully developed yet. In light of that and because of your Gleason score, they removed your lymph nodes. I had evidence of advanced disease on the newest MRI even though no lymph nodes were highlighted, and they removed roughly the same number as your surgeon did. Even though both our situations are serious, we should both be grateful that we did not have lymph node involvement. Seminal vescicle involvement puts us both in a higher risk catagory that does not have as much study data and there are many different opinions on how to proceed, so you may want to seek more opinions from high end institution(s). That said, congratulations on your undetectable post operative PSA. I did not do as well as you in this category. There is hope for us though and new developments every year.

    Before we can start, pleaes clarify - did the surgeon remove your seminal vescicles?

    What was the final gleason score on the post surgery pathology report. Did they confirm Gleason 9?

    What was your pre-surgery PSA?

    George

     

  • redbelly7
    redbelly7 Member Posts: 34
    edited July 2017 #3
    GeorgeG said:

    Welcome to the forum and the

    Welcome to the forum and the club. There are many here that can help guide your decision process. Try to stay positive and keep getting educated. Imaging the prostate has been a challenge and we are only recently getting capability such as PET scans with newer contrasting agents but this area is not fully developed yet. In light of that and because of your Gleason score, they removed your lymph nodes. I had evidence of advanced disease on the newest MRI even though no lymph nodes were highlighted, and they removed roughly the same number as your surgeon did. Even though both our situations are serious, we should both be grateful that we did not have lymph node involvement. Seminal vescicle involvement puts us both in a higher risk catagory that does not have as much study data and there are many different opinions on how to proceed, so you may want to seek more opinions from high end institution(s). That said, congratulations on your undetectable post operative PSA. I did not do as well as you in this category. There is hope for us though and new developments every year.

    Before we can start, pleaes clarify - did the surgeon remove your seminal vescicles?

    What was the final gleason score on the post surgery pathology report. Did they confirm Gleason 9?

    What was your pre-surgery PSA?

    George

     

    He didn't remove the seminal

    He didn't remove the seminal vesicles.  I wish that he had...  I'm pretty sure the Gleason score was a 9 for the majority.  I forgot what the pre-surgery PSA was, but it was under 3, I believe.  It had jumped up some from the time of the TURP, so the reason for the biopsy.  I'm beginning to feel a little better about my chances.  I am a person of faith and I am optimistic.  I do plan to beat this and this is the reason for trying to educate myself further by joining groups like this.THANKS!!!

  • GeorgeG
    GeorgeG Member Posts: 152
    #4
    Were there confirmed positive

    Were there confirmed positive margins in the surgery sample?

    If you don't already have it you should get a copy of the surgeons report and pathology report.

    George

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #5
    redbelly7 said:

    He didn't remove the seminal

    He didn't remove the seminal vesicles.  I wish that he had...  I'm pretty sure the Gleason score was a 9 for the majority.  I forgot what the pre-surgery PSA was, but it was under 3, I believe.  It had jumped up some from the time of the TURP, so the reason for the biopsy.  I'm beginning to feel a little better about my chances.  I am a person of faith and I am optimistic.  I do plan to beat this and this is the reason for trying to educate myself further by joining groups like this.THANKS!!!

    S.V.

    redbelly,

    It is extremely odd that the surgeon did not remove the seminal vesicles.  Removal of the s.v. is almost universal today with either form of R.P. (robotic or non-robotic), regardless of whether scanning has indicated they are diseased or not.  There is almost never any reason to not remove them.  The surgeon must have encountered some sort of complication, and I would demand an explanation.   As I said, leaving them in, especially if they contained known disease, is nigh-unbelievable.  It is very possible that your whole current blight is due to leaving in the vesciles.   We are not medical professionals writing here, but this seems a very plausible read, given what you have shared thus far.   You are certain they were not removed ?

    In any case of Gleason 9 PCa, a surgeon is going to remove a lot of sentintinal nodes, the nodes surrounding the gland on all sides. This was to be expected, regardless of what any scans showed pre-op.

    The option for becoming cancer-free now is fractionated radiation.  Hormonal therapy (HT) can be used with this, but hormonal therapy by itself is NEVER CURATIVE; only Radiation and/or surgery is curative of prostate cancer.  If the Zytiga is denied, then use the HT and radiation without the Zytiga (there will be no real choice at that point anyway).

    Zytiga was initially FDA approved for use following the failure of chemotherapy, but it is beginning to get common use in the last year or two early-on, before chemo is even begun.  That is probably the insurance catch (I am not positive regarding this).  The oncologist doing a little begging might get the denial reversed.  Chemo is almost always the treatment of last, final resort: A buy for time after all else has failed.  But HT can hold back the disease for a decade or more in many, many cases.  My point is only that currently chemo should not even be a consideration in your treatments.

    I would find out why the s.v. was not removed, and get radiation begun as soon a s possible.  Do not expect scanning to pinpoint the location(s) of the cancer, since scanning technologies today often cannot see PCa; there are many false negatives: no disease spotted where it is in fact active. This is called micrometastasis: cancer too small to be detected via scanning, of any current form.

    max

  • redbelly7
    redbelly7 Member Posts: 34
    #6
    Thanks Max, I have a follow

    Thanks Max, I have a follow up visit this Friday, the 21st.  I will confirm about seminal vesicles.  If Zytiga is denied, should I go w/ casedol (not sure of spelling).?

    Thanks George, I do have a copy, but have to dig them out.  Still plannning on whipping this thing and 10 years sounds pretty good right now, 20 would be better.

  • GeorgeG
    GeorgeG Member Posts: 152
    #7
    On the assumption that

    On the assumption that Gleason 9 was confirmed along with positive margins in your RP pathology same then many doctors would recommend adjuvant radiation meaning radiation just in case even though you had an undetectable PSA post op. Although the addition of hormone therapy (adjuvant if starting with radiation, neo adjuvant if starting before) is now fairly standard for primary radiation, it is not as universally accepted post RP. I am doing neo adjuvant hormone therapy along with salvage radiation because my PSA never became undetectable after RP and the latest studies seem to support HT in my case. In the case of adjuvant RT most of what I have seen leans toward no HT with ART. I have no idea how leaving the SV intact impacts all of this. I also have no insight on the choice of additional pharmaceuticals beyond HT at this stage. A few of the other guys know more than me like Max.

     

    george

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #8
    GeorgeG said:

    On the assumption that

    On the assumption that Gleason 9 was confirmed along with positive margins in your RP pathology same then many doctors would recommend adjuvant radiation meaning radiation just in case even though you had an undetectable PSA post op. Although the addition of hormone therapy (adjuvant if starting with radiation, neo adjuvant if starting before) is now fairly standard for primary radiation, it is not as universally accepted post RP. I am doing neo adjuvant hormone therapy along with salvage radiation because my PSA never became undetectable after RP and the latest studies seem to support HT in my case. In the case of adjuvant RT most of what I have seen leans toward no HT with ART. I have no idea how leaving the SV intact impacts all of this. I also have no insight on the choice of additional pharmaceuticals beyond HT at this stage. A few of the other guys know more than me like Max.

     

    george

     

    Hi George

    Good speaking to you George.

    The relevance of the surgeon having left in the seminal vesicles is that they are where the surgeon said his cancer was present (other than the gland itself).  It is insane, knowingly leaving in active tumors, if indeed that is what happened.

    In almost all prostectomies, the seminal vesicles are removed with the gland, just for a more thorough removal of potential sites for PCa. The glands serve no purpose after prostectomy, so there is no advantage to leaving them in. The most common areas for metastasis after escape from the gland are the vesicles or the lymph nodes, probably followed by escape along the nerves running through the gland (what is known as "preineural involvement"), so removing them is just common sense.

    Redbelly:  I do not know a lot about HT, but many guys here are expert in it, and could better advise you.  I do agree with the one comment above that RT is what you need, and adding HT at all is questionable but pretty common. HT has lots of ugly side-effects, although most go away when HT ends.  Be sure that you are seeing a medical oncologist; most urologists are NOT medical oncologists. They are able to perscribe the same drugs, but most urologists do not have Board Certification in medical oncology.

    max

     

  • GeorgeG
    GeorgeG Member Posts: 152
    edited July 2017 #9
    Hi Max

    Hi Max

    I must  been thinking of one of the other top guys like VG when I was thinking about later stage drugs but nice to here from you anyways as you are also a valuable contributor. I am pretty up to speed on HT where I am and this OP is right now but he appears to be on a more aggressive drug approach than has been typical for his situation. But maybe there are some studies that I have not seen yet in this area. BTW, the studies show that around 85% of men return to normal testosterone function after they stop HT even though in some cases testosterone does not go all the way back to baseline.

    george

     

  • RobLee
    RobLee Member Posts: 269 Member
    edited July 2017 #10
    George, Max, SVI, HT

    George - I too am on HT as my PSA was never fully undetectale post-op, nadir at "<.02" and my RO is an advocate of concurrent HT with A/SRT. Due to several delays my RT (at this point I believe it is refered to as "early SRT") for my SVI is already six months behind, hoping to begin next month once my AUS is activated.

    Max - Assuming the SV's were indeed left intact the only reason I can possibly conceive of would be that perhaps they were infected and the surgeon felt it was better to zap them with RT rather than risk cutting them open. Something about mucosal or vascular SVI... I've never been able to find much definitive info on the various SV pathologies.

  • GeorgeG
    GeorgeG Member Posts: 152
    #11
    Salvage is by definition

    Salvage is by definition better than the alternative so were on the right track. Given the current state of medicine this is our last chance at cure so let's both land on the right side of this adventure.

    george

     

  • MK1965
    MK1965 Member Posts: 233 Member
    #12
    Similar story

    redbelly,

    your story is very similar to mine but you have a more aggressive form of prostate Ca. 

    I had a Turp on June 1, 2016 and was incidentally diagnosed with prostate Ca Gleason 6.

    Had TRAUS biopsy on August 11 which confirmed cancer but higher Gleson 7 (4+3) with 1 of 12 cores positive - 10%. I had RARP on November 2, 2016. Surgeon removed prostate, seminal vesicles an 8 limph nodes.

    Luckily, my Gleson was downgraded to 3+4, multifocal lesions in both lobes, negative margins, organ contained So no need for additional treatment pT2c.

    I would like to stay in touch with you to compare our recoveries to see if recovery of our elementary functions was impaired by TURP, if you don't mind.

     

    My 8 months post op PSA just a week ago was <0.1.

    BTW, at time of diagnosis and surgery,  I was 51.

    Good luck with your recovery.

    MK

     

  • redbelly7
    redbelly7 Member Posts: 34
    edited July 2017 #13
    MK1965

    Mk, yes, let's stay in touch.  I wish that I had a biopsy a lot sooner after the TURP.  I'm not sure how to private message or anything yet, but if you send me one, let me know here and I will find it.

    Max, George and Roblee, thanks for all the info.  I will be finding out about the SV on Friday.  I had a lady at Emory do the TURP and a specialist at Emory do the RALP.  So I'm guessing it is possible that the TURP may have caused an issure w/ SV, but hopefully they took them out and being aggressive to start radiation.

    Thanks again, I feel much better about my situation after talking w/ you fellows!

     

  • MK1965
    MK1965 Member Posts: 233 Member
    edited July 2017 #14
    redbelly7 said:

    MK1965

    Mk, yes, let's stay in touch.  I wish that I had a biopsy a lot sooner after the TURP.  I'm not sure how to private message or anything yet, but if you send me one, let me know here and I will find it.

    Max, George and Roblee, thanks for all the info.  I will be finding out about the SV on Friday.  I had a lady at Emory do the TURP and a specialist at Emory do the RALP.  So I'm guessing it is possible that the TURP may have caused an issure w/ SV, but hopefully they took them out and being aggressive to start radiation.

    Thanks again, I feel much better about my situation after talking w/ you fellows!

     

    Private message

    redbelly,

    I sent you private message and explained you can do it to.

    MK

  • redbelly7
    redbelly7 Member Posts: 34
    #15
    GeorgeG said:

    Welcome to the forum and the

    Welcome to the forum and the club. There are many here that can help guide your decision process. Try to stay positive and keep getting educated. Imaging the prostate has been a challenge and we are only recently getting capability such as PET scans with newer contrasting agents but this area is not fully developed yet. In light of that and because of your Gleason score, they removed your lymph nodes. I had evidence of advanced disease on the newest MRI even though no lymph nodes were highlighted, and they removed roughly the same number as your surgeon did. Even though both our situations are serious, we should both be grateful that we did not have lymph node involvement. Seminal vescicle involvement puts us both in a higher risk catagory that does not have as much study data and there are many different opinions on how to proceed, so you may want to seek more opinions from high end institution(s). That said, congratulations on your undetectable post operative PSA. I did not do as well as you in this category. There is hope for us though and new developments every year.

    Before we can start, pleaes clarify - did the surgeon remove your seminal vescicles?

    What was the final gleason score on the post surgery pathology report. Did they confirm Gleason 9?

    What was your pre-surgery PSA?

    George

     

    Gleason score

    I looked up the path report and Gleason score was 4 plus 5 equaling the 9. involving 60% of the prostat bilaterally. Grade 4 involves 70% of the carcinoma. Extraprostatic extension is present at the right base. Seminal vesicle invasion is present, bilaterally. perineural and lymphovascular invasion are present. Surgical margin at the right base is positive, all other margins are negative. High grade prostatic intraepithelial neoplasia.

    Posterior bladder neck margin, excision, benign fibrous tissue, negative for carcinoma.

    I'm thinking now that he did remove the seminal vesicles since they were tested.  Under Tumor Extent, is says, "Extraprostatic Extension: Present, Focal, specific right base" and under Seminal Vesicle Invasion (invasion of muscular wall required), Present, Bilateral.  Under Margins, Maring(s) involved by invasive carcinoma.

    6 week follow up is on Friday.  What other questions should I ask surgeon, (I may only see the surgeon's PA)?

    Thanks,

  • Grinder
    Grinder Member Posts: 487 Member
    #16
    Curious

    This is all out of my wheelhouse, but maybe urologists should schedule biopsies before TURP procedures as a precaution???

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