51 yr old Gleason 9 with PSA 5.9 anyone with similar results?

[tony194]

Hi this is my first post but diagnosed a few weeks back with 5.9 PSA and after biopsy confirmed Gleason 9 (4+5). Bone scan is clear and have just had MRI with all results due on the 02nd of March after MDT have met to discuss treatment options. Just looking for similar results so I can try and gauge prognosis and potential treatment plan as the options appear daunting Note: I will be treated in Newcastle Upon Tyne at the Freeman Hospital - Prof Soomro

[Dawnruss]

Hi my husband was diagnosed last march. Gleason 9, psa 66 then 90 a few months later. One pelvic lymph node involved, bone scan clear. He was 49at the time. We are south east London, so his treatment has been at guys hospital. He was put on ADT ( hormone deprivation) bicaltumide, straight away, which bought down his psa down, then zoladex as a 3 monthly injection. The bicaltumide was stopped after a while. Surgery was dismissed as an option because the PCa had breached the prostate. He had 6 cycles of chemotherapy, once every 3 weeks, docetaxel, which was completed at the beginning of Oct 16. He tolerated it very well, with minimal side effects and was able to carry on working. Then, 37 radiotherapy sessions from 9 th Jan 17 to prostate and pelvic lymph nodes. Next Tuesday will be the last session. He was told to expect extreme fatigue by the end, but has been amazingly good. Some bowel disturbance which is to be expected, and urine flow, but all things you can get help for. I wish you well with whatever treatment you decide on. You don't say if in your case the PCa is confined within the prostate?

[tony194]

Thanks for the info really appreciated - I haven't had full prognosis yet as only just had MRI. Consultation on the 02nd of March which should indicate if PCa has marched beyond the prostrate. The waiting is torture.

[Hidden in reply to tony194]

You won't go thru some of the stuff that I've endured,but I have and now currently am going thru things that you unfortunately might have to experience.Welcome to the club! It's no joke . It's all hell for a man and his spouse. .My wife married me after we cried like babies for 2weeks hearing that brutal diagnosis..I had no one to ask about things..Ican tell you what to expect and whatever you need to know.I know more now than I ever wanted to know about this subject.On the positive note, I'm in the1/3 that goes into this type of remission.The more proactive you are,the better the results.If you can keep your peace of mind you'll be ahead of the game.My problems are rage from fear Fromm -0 testosterone in my system.most men can't function without it..So it is an emotional, -hormonal battle, unless you find spiritual peace..Easy to say..I'm searching. Easier for me on the phone

[tony194 in reply to Hidden]

Thanks again Scott inspirational in a way which keeps me focussed. In between breaking down every two days I am trying to research. I will keep in touch and thanks again !

[Hidden in reply to tony194]

No matter the prognosis,because of our early arrival to the PC party=very early age for this disease, I think that is to our advantage in our ability to whip the treatments and the side effects from treatments..They told me in my case that if I was 10yrs older that they would not attempt the palliative urological + the cancer treatments..once you pass the fear of the unknown and find your status ,follow you heart in what is right for "You". Nobody believes in all the stuff that I have done , except for my wife..

[Hidden in reply to Hidden]

I believe that you can turn things around and that you will succeed with you choices.

[Hidden in reply to tony194]

How's it all going?

[rguerrero997 in reply to Hidden]

Hey Lulu. I need someone willing to talk. I have lots of questions right now. Im going to my doctor today to get the results of my PSA and have a rectal exam. Then i have an appointment with a urologist (new patient) on Thursday

[Hidden in reply to rguerrero997]

I m sorry but I haven't been at this cite until right non. Truthfully you are the first time that I responded to a medical blog,and it was because I saw your message.im not so hip on tech or messaging I'm kinda old school .Id rather talk face toface or on the phone.call me anytime if you choose .818-689-6190

[Hidden in reply to rguerrero997]

Anytime,any questions!Keep in touch brother!!

[Hidden in reply to rguerrero997]

What's up with you sir?

[Hidden in reply to rguerrero997]

Hey brother! It’s been a year .. what’s up with you ? Que Ondas.. cumpa??

[Nuray in reply to tony194]

Hi tony,when I had my prostate removed in May 2015 the junior consultant said my operation was a success and I should feel better now? 4 weeks after my operation had my biopsy results? Same junior consultant said my prostate cancer had broken through?now two months short of two years my cancer come back?so back to square one fella?where is the cancer now?Im thinking? You got to read and look at all yr treatment opsions mate Nuray,hope things plan out for you fella

[Dawnruss in reply to tony194]

Hi Tony how did your consultation go?

[tony194 in reply to Dawnruss]

hi I've posted results on this conversation link and as you can see still confused.

[Hidden in reply to tony194]

call me anytime .imm better on phone than computer.but I'll respond here if you prefer..Much luck!!

[Hidden in reply to Hidden]

Scott=Lulú our puppy=818-689-6190.up to you Thanks & Good luck!!

[telboy15]

PSA of 5.9 is not too high. Gleason of 9 is high though. Back in August 2015 I had a random PSA check (my wife decided that I should have one even though I had no symptoms, aches or concerns at all). The PSA result was 5 which is at the top end of 'normal' for a man in his 70's. I was 74 at the time. MRI was clear and the biopsy showed a Gleason of 8 with no leakage from the prostate. The Urologist decided to do CT and bone scans to complete the job! All scans were clear.

The Urologist said that I appeared well and fit enough for surgery so he offered me a full prostatectomy via Da Vinci keyhole surgery, which I accepted rather that the very lengthy radiology treatment. I had the surgery in Nov 2015 at Kent & Canterbury Hospital in Canterbury. Absolutely no pain at all during the surgery or afterwards. I went home the next day, wore a bag for just 8 days and pads for around 6 weeks. All PSA counts since then are un-recordable at 0.1.

I am glad that I opted for surgery which is the accepted 'gold standard' treatment although other treatments can also be effective. The downside of surgery is total erectile did-function, BUT that is an acceptable price to pay for a man of my age. You are younger so other thoughts have to influence your decision.

We are all different and prostate cancer treatment is improving all the time. I would simply advise you to listen to the Urologist and accept his advice. I wish you well.

Terry

[telboy15 in reply to telboy15]

Tony,

Further to my reply above, I do hope that the Pca has not spread from the prostate although a clear bone scan is good news. Normally the MRI is done before any bone scan, I believe. Again, I hope all news is good news.

Terry

[HughVG]

The really good news is that the bone scan is clear. This means it has not metastasised and is curable. What comes next will depend on the rest of your results, robotic da Vinci surgery is a good option if it is available.

[ceejayblue]

Its good to hear some positive stories here, my OH has PC and his last PSA was 6.4. He has a very small cancer in his prostate and its being dealt with via active surveillance. He had the first biopsy which found a small cancer and then the template biopsy which found it was slightly more than originally thought but not enough to change the treatment. He is also under Guys hospital in London and they are very good. Our only problem has been that after his template biopsy it has caused erectile disfunction but that's all and can be dealt with. My OH is 66 this year and was diagnosed about 3 years ago. He had an enlarged prostate 10 years before the cancer was diagnosed which was dealt with by an operation at the QE hospital in Woolwich. He is having an MRI in April to check up on things but so far they are happy with how things are going.

I wish all of you with PC luck and know that treatment is so much better now than it used to be and the options are set out clearly by the doctors so patients have all the information they need to make an informed decision.

[sammysusie]

My only difference to you was my psa was 29. Gkeeson 4+5. Had bicultamide then zoladex injection (only had the one as side effects were terrible) continued with the bicultamide hormone pills until I'd finished 37 sessions of radiotherapy. Stopped them then (against medical advice!). Ok since then (2012), but had it removed in December 2015 due to bladder cancer. I was told couldn't have had prostate removed on 2012 as Gleason was over 7. I had no problems with the radiotherapy, and worked right through it. Hope this helps - good luck

[Scruffybut1 in reply to sammysusie]

May I ask if your bladder cancer came first? And are/were you diabetic? I still have my prostate but 10 cycles of chemo followed by - still current -Abiraterone 1000mg daily has brought me to ,0.060. Original PSA 167 rose to 200 in 3 weeks pre treatment with Zoladex 3 years ago. Am with Charing Cross Hospital. David

[sammysusie in reply to Scruffybut1]

Prostate cancer first diagnosed Feb 2012. RT Sep - Oct 2012. Bladder cancer Oct 2015 - CIS - had mitomycilin 5 sessions. Following October TURB showed 5 tumours so had Bladder, prostate etc removed Dec 2015. They left a small part of prostate that had "welded" to bowel which had "positive margins" psa was 0.1, now up to 0.3 - but advised ok as long as doesn't go up to 4.0 so just blood tests 6 monthly.

Sammy

[Hidden]

I can relate!! Started 2yrs ago for me. No signs currently..I'm happy to discuss any questions at anytime.Our age factor alone( I'm 55) bonds us closely by statistics & many other commonalities

[Hidden]

Hello ,my name is Scott.Im 2 yrs down the road from where you are at right now.Ihad stage 4 metastatic-inoperable .unfortunately I went all bad , kidney failure, tubes, stint,a good year and a half of hell for both my wife and I. Told I had 24 months + maybe 19 more with chemo.Nothing else I could do my .My Urologist said..Basically your gone do whatever you want.No dietary advice. Now, No visible signs of Pc.. PSA is minus. Wife and I went holistic. Almost forgot...I also started Tak 700 from day one and taking it currently. # 1 belief = no processed sugar.Im on nutrients under care of naturalpathic onocalagist. We attribute my current status to everything in combo..Try everything you can. Good luck, & hang in there baby!!!!!!!

[tony194]

Scott your a star mate and appreciate you responding. I will keep you posted as in limbo now until the 02nd. Both me and the wife are basket cases at present.

[Hidden in reply to tony194]

We can relate..Limbo..limbo...limbo...At times I fight to keep my sanity from what has been extreme hormonal swings and a challenged immune system.Its a pleasure to speak to someone that can relate..Godbless!!

[Sten]

Hi Tony, I am Swedish, 82, diagnose (biopsy) 2011 Gleason 4-5, last PSA (in January) was 6.3. My case seems similar to yours, except that I am considerably older. I feel that even considered your high Gleason score your case can be treated successfully. If you can, it is probably a good idea to read up on PCa. There are websites intended for patients where PCa and many other diseases are discussed, For me, bicalutamide (or Casodex, the same but much more expensive) seemed to work wonders. Best of luck, the treatment for this disease seems to develop very fast. Sten

[Darryl]

Hi Tony. Be sure to join the advanced prostate cancer group here on Healthunlocked

[RonL]

I'm 68, first diagnosed 4 years ago when I presented with a PSA of 67. Biopsy confirmed PC with a Gleason score of 9 (4-5). Scans determined the cancer had spread to nearby lymph nodes but no bone mets. I was put on Lupron and an eight week course of radiation. My PSA was less than 0.1 and I remained on Lupron for two years. After a year off Lupron my PSA spiked to 20. I was put back on Lupron which brought my PSA down to 2.0. Eight months later my PSA went up to 9 indicating my cancer had become castrate resistant. A bone scan indicated metastasis. I'm still on Lupron and will shortly be going on Zytiga, Prednisone and Xgeva. That's my story so far, good luck with your treatment.