Fight Prostate Cancer
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Looking for some friendly advice .. Newly diagnosed

Im Clayton ....

Age 49 ,,, very fit for age ...................No other medical issues . PSA testing over three years starting 17/11/14 2.7 , 2.8 3.4 , 3.5 , 3.7. 3.2, . 1 week before the Biopsy PSA 3.4 ( Biopsy done (16/11/17) MRI Pirads 111 ,,, Biopsy 14 samples ,, 4 positive 3 GL6 @ 3+3. 1 GL7 @ 7 3+4 <5% pattern 4 ...

Was only because of my own request of PSA testing's that it was pick up first three reading was told I'm fine ( from the same GP ) and put it to bed ?? Went to anther GP and then had two with him and started the process .I did return to the original doctor during the period and was told again to leave it ill be ok .....In fact just before the biopsy. I took all my PSA readings and MRI results to two other local doctors and was told they don't think I have anything to worry about .

At the moment im only in the public system , worried , unsure , scared and cant work out why this has happened to me ...Was offered AS and Robotic surgery ..

Any advice , tips, thoughts on results ,

Thank for reading my Story

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Hi Clayton,

I’m about to turn 49 myself so I am understand your concerns at our age. What you have is a very low grade cancer, probably best to stay on AS for now, with the understanding that you’ll have to deal with this at some point down the road. I was diagnosed with G8 (4+4) at age 45 so I didn’t have time to wait. With the possible side effects of surgery & radiation I chose to try FLA. Focal Laser Ablation. Very expensive but no side effects. My best advise to you is don’t trust any one particular Dr. You will have to do a lot of reading & come to your own conclusion on what is right for you. Have you looked into brachytherapy? This seems to be best alternative to surgery with fewer side effects. I know how scary this is when you’re first diagnosed. Knowledge is power & the more you have the better you’ll be able to deal with this. Your numbers still look pretty good, even the G7 with only 5% G4 involvement.

Anything I can help you with just let me know.

Wishing you the best,

Ray

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You have my sympathy. I can see why earlier doctors said not to worry. Partly because of your age and partly because of your "normal" PSA levels. It was good that you pressed for the biopsy as this proved the malignancy when otherwise there was no real indication for it.

But it now puts you in a dilemma, which again I sympathize with.

I'd say it would help you to find out as many facts as you can. Obviously there are pros and cons for seeking treatment or just AS.

Perhaps you should consider that Gleason 7 is NOT low risk, it's "intermediate". My biopsy score 6 years ago was 7, 3+4, but after surgery it was updated to 4+3, which I believe is as bad as an 8, high risk. Additionally, I believe cancers advance faster when you're younger rather than older.

The thing about AS, to my mind, is that the cancer could be advancing to a point where treatment options become more restricted.

Also, psychologically, with AS, I would imagine you would be living under a sword of Damocles, stressed out every time a test becomes due!

Perhaps then you should consider treatment earlier rather than later. The nightmare about treatment is the collateral damage it does. This has psychological consequences, not just physical. So I suggest you find out what options are available and their relative merits are.

When I was diagnosed, air didn't rely entirely on what the doctors said. I discovered the information they gave was incomplete and inaccurate.

I opted for surgery. 6 years on, I have no bowel problems, I am continent and no erectile dysfunction. This is largely due to my own researches and specific requests.

The only problem, I now have, is that because I had "nerve sparing" surgery, some prostate tissue was left behind. To date, it appears that the cells are healthy ones because although I have detectable PSA it hasn't reached 0,2, which would indicate a recurrence.

I was hoping my PSA,, would be zero, which it was for a year. Unfortunately, it reappeared again. I now have PSA tested every six months, a kind of AS, so I can tell you about that sword of Damocles, I would avoid it if you can!

Good Luck

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I have 3+4. I am 64 and have decided on active monitoring. My psa has gone from 9.2 to 11.1 then 10.4.

I realise I will probably have to have further treatment but want to delay for as long as I can.

I have my next reading in 3 weeks.

I am keeping myself fit and eating well hoping this will help

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Presumably the 3 + 4 is from the biopsy, it's only a sample. After surgery mine was upgraded to 4 + 3. Also taking into account that your PSA is over 10 threshold, I wouldn't delay treatment. I believe the sooner you have treatment the less chance of side effects and less likely for it to advance.

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Hi Tim yes the 3+ 4 was from the biopsy and my last PSA 1 week before the biopsy was 3.4 not 10 .,, the PET scan read low level / low grade and no evidence of spread

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Sounds better! The fact that your PSA came DOWN, probably means that it was partly raised because of something else. The only thing that makes PSA lower is removal of the cause of it being higher. I had chronic prostatitis for years and that raises PSA. It was only after antibiotics failed to lower my PSA that I had a biopsy.

If it goes over 10 and STAYS there, I wouldn't think it wise to delay treatment any longer.

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Hi Timz nice to hear from you,,, My PSA was never above ten ,,,, The lowest was 2.8 in 2014 and the highest was 3.7 in early 2017 .1 week before the biopsy ( late )October 2017 3.4 .

I have an meeting with my urologists this month to have more infomation .However Im leaning towards Surgery as at the moment I feel more comfortable with the out come and long term .. Well I think so anyway :) .... Thanks for ur input mate .

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I turned 50 in May, 2017. Had a biopsy in July and was diagnosed with Pca. DRE was normal but had urinary symptoms (nocturnia/slow to start)! for a couple of years thus the reason for PSA test. Psa initially was 2.2 but began to climb. By July, 2017 it was 3.9. It was always under the 4.0 threshold so urologist kept sending me on my way. My GP however continued testing psa as he was concerned that number was too high for a man my age even though threshold is 4.0. So thankful that my GP was diligent. Biopsy revealed 2 cores of 12 with Pca. One core was 3+3 and one core was 3+4. Saw 3 urologist and consulted with one oncologist. All said surgery to remove prostate as it was still contained. Had surgery 9/2017. Unfortunately had a 2 mm positive margin at gleason 6 area. However first Psa came back four weeks after surgery at 0.00! Next psa is in the few days. Hope to remain in zero club! I traveled 250 miles for the surgery as to go to a doctor that had thousands of surgery under his belt versus local doctors who only had hundreds. Nerves were spared. Catheter was removed after about ten days. No issues with continence. Still working on ED issues but all hope has not been lost in that area. Good luck in your decision. Because i too was so young i felt removal of the prostate was the only option for me.

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I think you made a good choice (Lisa). PCA will NOT go away on its own! Good to hear your latest PSA was zero, good in view of the positive margin. My post surgery report said that they couldn't guarantee that all cancer cells had been removed since they were so close to the margin, so I was left wondering. Luckily PSA was zero after 3 months and after 6 and 9 months. As you have had the nerve sparing op, like me, there is an increased risk of some cells being left in. Sure enough, at 12 months my PSA was 0.02!!!! That scared me, However for to years after, as my consultant put it, my PSA jogged along the bottom, varying between 0.02 ans 0.03.

THEN it started creeping higher, but now at six years post op it's never gone above 0.1 (and that was a bit of a flook). I am reassured that it's not a recurrence unless it reaches 0.2.physical.

As regards the ED, it takes time to recover and I found it's as much psychological as physical. I found taking Daily low dose Cialis of great benefit, not only physically but also gave me confidence. In addition earlier it;s good to use a vacuum pump. It helps alleviate the damage to veins and spongy tissue brought about by lack of regular erections. (Normally men have erections every day, e.g. when dreaming, when waking up in the morning, with ED, you don't). I also saw a pyschosexual counsellor. I'd say it took me about 2 years to recover satisfactory erectile function which I felt confidence in. Confident enough to get married again 18 months ago. At six years post op I don't need any assistance!

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Hello Clayton. You have a favorable intermediate risk prostate cancer. You may wish to ask your doctor to run a genomic "Polaris" test. This will give an idea of the risk of dying from the cancer in 10 years and the risk of spread in 10 years. Then you may wish to decide to watch it, or proceed with the robotic surgery.

Mohamed

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To every one that has made a comment and shared or offered there experience it has been fantastic as u all know it can be a lonely and worrying time for all of us . I hope we all come out as healthy as we went in ...Thanks again

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Hi Clayton

I eventually had my prostate removed by robotic surgery. I was 67 at the time. I wish I had known about proton beam therapy before embarking on surgery and tried that first, however my cancer was an aggressive one and I took the advice of a top surgeon in this field to not waste any time, as it was still contained inside my prostate and had not spread to other parts of my body. My psa was 8 and went up to 12.

It is now 1 year and 1 month after my surgery and I have been told it will take 18 months for a more or less full recovery. I am ok, my PSA is 0.0003 not even traceable on a blood test I took 2 days ago and I feel ok and as I did feel in general before surgery, except for the after effects.

It has been a long, hard journey though. In the first few months after surgery I had on a condom catheter as I could not control the incontinence aspect, then in 6 months approx I graduated to pads and used about 3 a day, now presently I no longer need them and have no incontinence problems, except if I lift anything heavy or cough hard, then a few drops happen to come out, so although I don't really need them, I do still use them and 1 lasts a week or more if I wanted to keep in for that long, but for hygiene reasons, I do change them on a regular basis as and when I feel it needs to be changed, but think it better to always have them in place, they are light, absorbent, triangular shaped, small and comfortable, so no problem. I might add that they are freely supplied to me by the health system in the country I am living in Italy.

As for sex, I can still reach the same sensation of orgasm, but of course without any sperm ejaculation. In a perverse way, the sensation feels stronger and better than before the op. Strange I know, but true.

Erections are not good though and I have to use injections to get fully hard enough for penetration, this takes approximately 5 minutes after injection, these are not painful at all and erection lasts up to an hour, they are inconvenient though, I have to say, but I do have a fabulous wife, who fully appreciates and understands and is just happy I am still with her alive and well.

I did pay for a course treatment of Linear Shockwave Therapy (LSWT) to see if it would restore erections, but alas in my case it didn't work, however there are men it does work on. It is expensive treatment though, but I wanted to know if it would work for me, or forever have had regrets at not trying it.

I adopted an alcaline diet before my operation and this did slow the cancer down, maybe even have killed part of it off, but I didn't want to chance it and wait to see if it did kill it over time. I guess everyone has to make that important decision on their own, no one else can decide that for you. In my case it was logical to go through with an operation or risk death somewhere down the line in a few years, so a simple if not hard choice for me, in my case scenario. It all depends on whether a cancer is slow growing or aggressive; is contained inside the prostate still, or, has metastasized i.e. Spread to other parts, in which case, surgery is impractical and a waste of time then.

Hope this helps you a little. Good luck with all you are going through. I wish you all the very best in the future.

Best regards

Jamie

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Thank you for sharing ur story and ur experience is valuable as everyone's real life situation helps me understand this more . My urologists had offered me surgery and or radiation I have had a PET scan it it came back with the cancer still contained in the prostate . The report also said low volume / low grade this was a relief .i go back to the RBH on the 29th of this month for my treatment plan .

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Welcome. Beleave it or not, there is good news in your biopsy. A G =3+4 means that while you have to address your cancer, it is NOT advanced. You need to treat it now and not let it get any more advanced. Most important it also means that with treatment you can be totally cured!

The first step is to get information. Listed below are a couple of good starting points. The first one is from the Prostate Cancer Foundation. You can find them at

PCF.org

The second one is from the American Cancer Society. They can be found at

cancer.org/cancer/prostate-...

As far as treatments go, I think you are passed active survalence. The two main options are surgery or radiation, internal or external. Not as common but legitimate opinions are cryotherapy or ultrasound.

Based on your age I can understand if you go with radiation over surgery. Please remember that if you go with radiation and later on the cancer comes back you can not have surgery. Radiation scars your insides making surgery high risk. The key is no matter what treatment(s) you pick you get someone who has done thousands of these procedures. In addition to an urologist now is a good time to find a radiologist and even a medical oncologist.

Please know that my comments come from a fellow warrior, not a MD. (My degree is in chemistry.). My comments do come from the heart. Please know you are now part of our family. There are a lot of men here that were diagnosed with cancer while in their 40’s (I was 58). Hopefully they can share their experiences with you. However, no matter what the age we are all in this dogether.

People like us we have to stick together!

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I agree with you on ur comments ... I have an appointment with my urologist on the 29th of this month . I am leaning towards surgery as this seems to be the best way for total and most likely a permanent cure . But the side effects to scare the shit out of me . I also have radiation option but that can create more problems if it comes back ' I'm not sure about the percentages of reoccurrence with that option . Thank you for taking the time to send a message and your thoughts :)

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Check out proton beam therapy, it is new and it kills the cancer cells totally whilst at the same time does not harm the good ordinary cells. As I mentioned in my post to you Clayton, I found this info about this therapy out too late or I would have definitely gone for it before having surgery.

Type into google "Proton beam therapy for prostate cancer" and read all the links about what it does. I hope that it is available in your country wherever you are.

Best regards

Jamie

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