Correct Therapy for High Risk PCa (Gleason 9)

I am diagnosed with a HighRisk PCa (GL 4 + 5 = 9, PSA 12,5, Staging Ta2 - Ta3 after Biopsy, CT and BoneCT) before 6 weeks. I am still fighting with me regarding the therapy decission as German Uros prefer the Operation first and followed by a IMRT if necessary and the Radiooncologists prefer Initial IMRT + ADT for 24 months as curative therapies.

I would be very thankful for the opinion of People in this Forum as I have to make a quick therapy decission.

35 Replies

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  • Hi I think you be better off with ADT first to stop the cancer from multiplying and spreading? Then when yr psa is stabile opt for operation to remove your prostate? And see how you get on? Wish you well on your journey Nuray

  • Reading what you wrote, it sounds like your CT and bone scans were negative. That is great news! However, a Gleason score of 9 is high risk. There is a very strong chance that the cancer has spread past the prostate even if the scans were negative. You should follow up with secondary treatment.

    I was T3N1Mx, Gleason 8, Ductal where it had spread to my pelvic lymph nodes. For me I went for surgery followed up with two years of Lupron hormonal therapy (nine months into treatment), and 38 rounds of radiation.

  • Start with ADT. An MRI should tell extend the cancer is that needs to be treated. If you can have surgery which will save your urethra & colon. Go for surgery. If not you should consider radiation. Dr. Should give you problems that can occur with either one

  • I am a GL-9, diagnosed 3 years ago. Began ADT (Lupron and Casodex) right away. This bought me the time to decide which next treatment to have. After 8 months I had to make the decision to go with surgery because I was symptomatic and on catheters. Rad Oncs would not treat me with catheter in place. Surgery was as successful as it could bekafk considering. Made it 11 months post surgery and then did 39 days of IMRT last year with another year of ADT. Now off all treatments and hoping to get a good run at remission.

    Do not lose hope, this is manageable. Hardest part is the decision making.

    Pkafka

  • My case is very similar to yours..except I wasn't a candidate for surgery..However I did Full round of R. T with catheter and tubes outta kidneys.For me only palliative care to improve quality of life .It worked! The hardest part is making The decisions...

  • Hi Elemanj. As you can see from these replies we've all taken different routes to try to achieve optimum results. Sadly, there is no absolute one right way. If you have confidence in your doctor(s) take their advice, if not get another opinion. As there is no one right way it's likely the way you choose is as good as any of the ways we've chosen. Good luck on your journey.

  • Yes! Follow your common senses and you will make your own way through this test.

  • Hi all,

    Thanks to all who submitted replies. Hope to receive more. Good luck to you guys too.

  • I've made all my decisions from studying the disease very extensively in books and in PubMed. Every book and published report I read contributed some information useful to my decision, until one day I found the last piece of MY puzzle and acted in confidence. The confidence I had and still have in those decisions, which often differed from what was prescribed but usually got the blessings of those prescribers, will leave me dying on some distant day with the knowledge that did my best rather than just sticking out my veins and abdomen and saying, "Here I am, fix me" like so many patients do.

  • Be your own doc, and follow sound advice!

  • I was 49 with PSA of 12 when diagnosed with Gleason 9 T3b PCA. Nodes and Distant Metastasis negative. I chose RP. Easy procedure no lasting serious side effects other than an occasional dribble with cough or sneeze. But 2.5 yrs later my PSA rose higher than 0.1 the detectable level. I chose to follow up with Salvage Radiation to prostate bed. No serious side effects other than fatigue last couple weeks during the 39 daily radiation treatments. 6 months after salvage radiation PSA is undetectable which is where it needs to be. No ADT during any course of treatment. The decision has to be yours just wanted to share my story to help with your decision. Good luck and sorry to hear you joined our "Band of Brothers"

  • Band of bros...Like Marc Twain said "Any club that would have " Me" as a member, I refuse to join..but this wasn't a choice, rather we are forced to cope..

  • Kick the bastard. Don't play around. This coming from a 13 year Stage 4 survivor. I was a Gleason 7(4+3) and PSA f 32.4 with two mets to my spine. Today my PSA is undetectable. I had seeds, IMRT and a six month chemo trial. The first thing that I did was a 3 month injection of Lupron/Eligard and continued that for six years. Seven years later, I only use Androgen to bring back testosterone and it ranges from 400-500.

    With a Gleason 9, I, and this is me only, would either have the surgery or have seeds implanted, then have external radiation, then start an agreesuve chemo program all within the first 6-9 months.

    Although I am not a doctor, I am a product of and strongly support aggressive treatment. Too many people and doctors play around with this crap trying to "do no harm" and let the cancer continue to grow. The end result is like the bulk of people with advanced prostate cancer are just biding their time on Earth. I am 70-years old today without any sign of cancer.

    Kill the bastard while your body is strong and the tumor burden is low. Wait and you are screwed. I best you all the best.

    Gourd Dancer

  • Hi

    I am stage IV as well. I am one year into ADT and need to decide whether to continue or go intermittent. What are your thoughts.

    Can you tell me why you use androgen? I am 55 and find your story incredibly inspiring. Thank you. John

  • Hi John. Thank you. First, I used the Androgen to try and recover testosterone. Initially to try a jump start after a year and it did not come back. My body essentially forgot how to make it after six years on ADT.

    I asked my Medical Oncologist when I started wont' I just be feeding the cancer. He looked at me and smiled. If it dies, then we go back on Lupron. But, quite frankly, I don't think that it will. Nothing to lose and everything to gain attitude on my part.

    I never tried intermittent ADT. I started this journey just two years older than you. Quite frankly, akthoughed offered by my two Radiation Oncologist to merely take Lupron shots quarterly until they stopped working. Standard treatment.

    I only had one question for them. "If you were me, what would you do?" Both thought for a ministries and said that they would find the best Medical Oncologist that specialized only in Prostate Cancer; not s cancer generalist. A lung or breast cancer person won't do you any good. Look for someone who is cutting edge in the field. A researcher. One did not know any. The other said that he sat on a joint The Texas Medical Center Prostate Cancer Committee with one. Said he did not know if he could get me in, but would try.

    By the time I got home the Medical Oncologist office called and we set an appointment the next day and I spent 2 1/2 hours with him and enrolled in him trial. The rest is history.

    Keep kicking the bastard

    Mike

  • I also had an excellent P. C. Specialist.He made great decisions that made a huge difference to my benefit.Keep kicking it in the a--!

  • Inspiration to us all..You are on point exactly.I agree that if you have aggressive P. C. You MUST counter mand it aggressively..Biding our time here,but realistically every one on earth is.Everybody has something that's going to take them out sooner or later.Heart disease-diabetes-,this is. Life..So I agree fight for life and (like you) we hope for success..

  • Is HIFU a treatment option where you live? I was dx gleason 8 with negative CT and bone scans. 6 month eligard shot in preparation for radiation (I was told I wasn't a candidate for surgery after TURP ten years prior) but then I changed my mind and went with HIFU. The eligard was good for HIFU -- it shrank the prostate which is a helpful thing. The TURP was also helpful for HIFU. So far so good in terms of quality of life complications.

  • Yes, I live outside of Houston every valid treatment is available from freezing to seeds to rods to surgery. Keep kicking the bastard

    GD

  • I had a 4+5, very aggressive--that in 3 weeks it went from a 7 to a 9. Some Pca cells, you have 2 types, the 4 and the 5--if very aggressive have an ability to resist radiation, and it takes a long time to get them and usually we do not get them all. If we did we would have cures.

    I am not a Doctor---But in your very same situation, with outside consultation beyond the Urologist and the Radiation Oncologist--it was clear get the mother-f----- out asap. There is thinking about why the surgery. It is hoped that the aggressive refractive Pca cells are close by to the main body of the Tumor. If we get them out by surgery, or most of them, and then have radiation--or ADT/Radiation--I believe you will get a more durable remission---for how long, only God would know. That is my Opinion. I failed Surgery, could not have Radiation as I had a PSA over 7 after, was not a candidate for chemo--and went on a quadruple ADT Blockade, now a Quintuple Blockade---and happy to report over 16 months past the failed Surgery--but we think we got a lot of the bad guys, because my PSA dropped quickly, and I am still undetectable after a year of ADT.

    After the Surgery once the Pathologists got a look at what was taken out, including a seminal vesicle, that was full of cancer--but no bone or node invasion---the Urologist said thank God we Did the Surgery--as he said he thought I would be in Hospice in 6 months. Well I am still here and contributing. If having to do it again--I would have not wasted an extra 3 weeks trying to decide--as during this time as 7, became a 9. As I said my opinion.

    Nalakrats

  • Great opinion, and totally accurate.Yes,thank god for your promptness!

  • Just cant believe that a GL 7 goes to a GL 9 in three weeks. This means you had Biopsie with GL 7 before surgery and GL 9 after surgery?

  • There are some Pathologies, that are so aggressive--they move at an incredible speed. Small Cell Carcinoma of the Prostate is one. The one I had was rarer. Ductal Cribriform, that was extremely undifferentiated. I went from 6 months after a clean OK digital, to ejaculation discomfort. In those 6 months,something happened, went back to Urologist--Found a nice hard lump, on right side by Digital. Took PSA 20.2---six months prior it was a little over normal, when doing annual exam. So my PSA quadrupled in 6 months going into stage 3 category, with the Gleason. My Urologist had seen 2 cases like mine in 25 years. I looked it up, spoke to the Head of Urology at Emory University, Hospital, finding that 0.4 % of men world wide having prostate cancer had what I have. When we later inserted the rarity of my gene mutations after surgery, I was in the less than 0.1-0.2% of men in the world having what I had.

    So going from 7-9 in Gleason might be considered normal from Biopsy, to Surgical Pathology examination. But my Doctor doubts it. His input was, that he had 8 good cores on the cancerous side of the prostate. And all came back at 100%---so he was right in the tumor, with the cores samples.

    When the pathology came back G-9. He called Duke, JH, UNC, and his Drug contacts who make Zytiga, and Extandi . I had an PCRI advocate call UCLA, and he re-spoke to Emory. All came back with no know path to treat---we got a lot of Good Lucks. My post op PSA of 7.4 with no Node, or Bone metastasis, means it had already escaped into the blood, in a six month period.

    So we discussed the 7-9 move, and no one could say for sure, that I was so not typical, and so rare, One Doc. suggested I might not make it to long. He had Hospice in is eyes.

    So I found a Korean Paper---as Asians get what I have more often than Americans, and even though they did not have a large sample--I believe it was 67 men from all over Asia---all died before 18 months of DX. All were G-8 to G-10

    So the point I am making is that there are so many multiple combinations that the Pca Disease is represented by many Dozens of Variables, or Diseases---and not all fit into a box, that says it is normal to go from a 7 to a 9 between Biopsy and Surgery--because the Pathologist had the whole organ. Many things cannot be categorized, when you are dealing with so many variables. How does one go from a perfect Digital, to a Large Tumor in 6 months--My Doc. does not miss--and the PSA's line up--going from normal to over 20 in 6 months.

    Nalakrats

  • Nalakrats,

    Were your GS-7 and GS-9 readings ever confirmed by a second opinion? I had three opinions on the exact same biopsy slides. One said 3+3, one 3+4, and one 4+3. The 3+3 was from Quest Labs, the low bidder pathologist for my HMO, 3+4 from a local hospital, 4+3 from the U.S. National Cancer Institute, where I decided to get my treatment in a clinical trial.

    If one of the readings was wrong it's conceivable that the jump was not from 7-9 but from 8-9 or 7-8 or, if both were off, from 8-8.

    I'm not saying this is likely, but it is apparently quite common for different pathologists to come back with different evaluations.

    Alan

  • Alan, at this point in my situation---the Ductal Cribriform unto itself was evidentiary

  • Alan, sorry I hit the send button--doing again--The Ductal Cribriform Pathology by itself was evident that whether the Ductal was 4 or 5 it needed out. Thus before the surgery, I did enough research in 3 weeks, and my wife having assisted in over 200 RP's in the Operating room--the decision was clear--especially when the Radiation Oncologist was of the opinion that all pathologies where going to be addressed with equal results, with Radiation. This is not what he said, but I could read between the lines, and further moved me to getting the sucker out, along with anything else--which turned out to be one seminal vesicle.

    So there was no hemming or hawing over Gleason's---it was the Pathology, that was the mover.

    Nalakrats

  • Thank you for your note. I also have Ductal cancer. Yes it sucks when you go in every year for digital and PSA tests, all negative until the last one - advanced Ductal cancer. Biggest problem I have is and remains the fact the it is so rare that most of my medical team have never heard of it, let along know how to treat it.

  • My team knows about about it--and that there is no world wide treatment protocols. Still no targeted treatment except to treat the Gene mutations, identified.

    New data at John Hopkins, recently they did a paper--they studied I believe it was 167 men they found. I think you might find it on the Net. no big deal, but they created more data, that maybe beneficial later. Might find it on a search engine---I would try Ductal Prostate Cancer and John Hopkins.

    Nalakrats

  • Thank you.

  • 46 years old. Gleason 9, PSA 286 diagnosed February 2016. Scans showed bulky disease in several nodes and bone scans showed negative. Hormone therapy given immediately and 6 rounds of docetaxel following in June. Prostatectomy in December with 42 nodes removed and only 1 testing positive the rest were scar tissue from where chemo and ADT did its work. Current PSA < 0.01

    I agree with Gourd Dancer and hit it hard while you can with aggressive treatment. To many hospitals are still in the era of once escaped local therapy is useless. That was 10 years ago and unfortunately because few or no trials have been done on aggressive treatment most doctors do not support it. They say quality of life is diminished but what good is the quality if your not around to enjoy it.

    I would also suggest to do surgery before radiation if surgery is offered. Salvage surgery is difficult to perform due to scaring from radiation therapy and its good to keep the radiation card for down the road incase another treatment is needed.

    Good luck with your decision,

    Ron

  • Man you went through hell and you are still positive.Probably a key to success.

  • I suggest you read the NCCN Prostate Cancer patient guidelines; that latest is V3-2016, and provides accurate information on risk groups, staging and suggested treatment. There is no One Size Fits All- many variables such as age, health, previous issues, etc. all need to be considered. I was lucky, am 75, T2c, Gleason 7 ( 4+3) in 7 of 12 cores, Gleason 6 in 5 cores, PSA 9, contained in prostate. I am on 6 months Eligard (ADT) + Bracy + EBRT. ADT side effects are hot flashes, occasional dizzyness. Brachy was Mar 8, went well, I was back running and full gym routine in 6 days. My EBRT starts in May. So far NO side effects from Brachy- they used Pd103 seeds which has a shorter 1/2 life than Iodine, but a more powerful punch.

    NCCN is found at: nccn.org/patients/guideline...

  • My treatment was similar to yours. Gleason 4+3, PSA 10.7, ADT, two sessions of HDR brachytherapy, 25 sessions of EBRT in between the two HDR procedures. That was all completed in 2004 and I've needed no treatment since then, though I did have some scary PSA "bounces".

    I was in a trial of this treatment and, last I heard, 13 of 14 men in the trial had similar outcomes. So I'm hopeful that your prognosis is good!

    Best of luck.

    Alan

  • Operation 1st seems the best..but I'm no expert..I m I'm Tak-700 since my on set 2yrs back.You must be newly diagnosed and not started other treatments yet, to be a candidate. I have No visible-signs currently..I've tried many things and I suggest you to be aggressive on you recovery.It is possible.Although things seem hopeless at first.Acceptance and attitude are everything,,then begin the battle and pray pray pray for good things....keep in touch when you can here..Let us know how you are doing because someone always has the knowledge to answer any thing that you can ask?? Good luck!

  • Elemanj,

    I think you've gotten useful advice from others. Here are a couple of extra thoughts.

    If your treatment does not begin very soon, maybe they can give you ADT now to stop the growth of the cancer while you're waiting. The only question I have about that is whether it is compatible with surgery. It used to be that surgeons did not think that ADT was useful in advance of surgery, and that it may make the surgery more difficult. I recommend that you call the surgeon's office and ask him.

    Radiation has the advantage that it can target not only the prostate, but the area around the prostate, right in the first treatment. With surgery, they must wait for the surgery wounds to heal before radiating. If any cancer has spread outside the prostate, which is not uncommon with Gleason 9, it could continue to grow during the healing period. The effectiveness of radiation is very dose dependent. Higher doses produce more negative side effects but more cancer killing power. There have been studies that dispute that, but I don't believe them. I have seen multiple studies that seem to confirm it. Brachytherapy (HDR or LDR - High or Low Dose Rate) are also good ways to deliver high doses directly into the prostate without damaging surrounding tissue. For a Gleason 9, they would be supplemented by IMRT/EBRT to hit the surrounding tissue.

    Surgery has advantages also. It could turn out that radiation around the prostate is unneeded and, if so, you needn't be exposed to it. Also, if you are not cured, salvage radiation can be applied, not only to the surrounding tissue but to the prostate bed itself in case any cancerous tissue remains there, not killed by the first treatment. Salvage treatment (with surgery or radiation) after radiation is generally considered to be difficult, side effect prone, and not very effective.

    Here's a quote from the U.S. National Library of Medicine - Medscape documents (http://emedicine.medscape.com/article/454283-overview#a4)

    "Retrospective comparisons, using PSA-based outcomes, suggest no significant difference between them. The results for patients with T1/T2 disease treated with conventional EBRT are similar to results achieved after radical prostatectomy. The 2 treatments offer comparable rates of disease control, and 10-year survival rates are similar (> 60%) in studies by both Bagshaw [11] and Perez [12] ."

    This claim is hotly disputed by many surgeons and some radiation oncologists, who claim that their treatments are better than those of the other guys. I just don't know what the real truth is or whether anyone knows. I am convinced however that good surgeons get better results than average surgeons, and good radiation oncologists get better results than average ones. You definitely want to be treated by the best people you can get.

    Personally, I would prefer either surgery or radiation to HIFU or cryosurgery. It's my perhaps not well informed opinion, that the efficacy of those is less well established, especially with high risk disease.

    I hope that's helpful.

    Best of luck.

    Alan

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