Journey begins - age 51, PSA 72

Posted by deku @deku, Nov 4 11:09am

Hi, all. Perhaps I shouldn't be posting yet, but I am feeling very alone, and I don't want to burden family/friends/colleagues with my concerns. My journey is just beginning, and I honestly don't even know where I stand yet - my biopsy is a few hours from now, we have yet to confirm a PCa diagnosis or determine a score/grade/stage for whatever I have - but we have multiple reasons (aside from elevated PSA) to be concerned. I have been doing a lot of research and feel I have a decent idea of what it could be and what might be coming next, but in the meantime the waiting is excruciating and it could still be weeks or months from now before we know with certainty what I have and the extent of it. I know I am not unique or special in this experience; I am not seeking attention, sympathy, or reassurance (particularly for something we haven't even confirmed yet!), and I don't really have any questions right now. I think I just don't want to feel so alone, especially while I am keeping this a secret from everyone in my life for who knows how much longer.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I am sorry to hear that. When I was diagnosed at age 56 in 2021, it was because my cancer had already metastasised and compressed my spine to the point that I ended up paraplegic for almost a year (I can walk again now). So while you feel anything *but* lucky, there's at least a reasonable chance either that there's no cancer detected yet or that yours got caught before it left the prostate, which means that you can look forward to a "cure" rather than just lifelong "management," though getting there won't always be easy.

Even if that's not the case, though, and your cancer has escaped the prostate, please know that there are many new treatment options that have emerged over the past 5 years or so, so it's no longer a terminal diagnosis for many people. I've been going over 3 years in full remission thanks to new treatments, and there are people here in the forum who've passed their 10-year stage-4 cancer-versary and are still going strong. When I was first diagnosed, they told me I had 5–7 years left to live, and would probably progress to other treatments (like chemo) within 18–24 months. I didn't progress, and now they no longer give my life a time limit. I believe stage 4 prostate cancer is on the verge of becoming a chronic disease that can be managed to a natural old age, like HIV/AIDs, and this article agrees: https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/

So I'm very much hoping that you get the "good" news either that they don't find any cancer, or barring that, that it's still contained in your prostate and can be treated curatively with radiation or a prostatectomy followed by a few months of hormone therapy. It sucks being diagnosed in your 50s (I know), but the advantage is that you're still strong enough to deal with some pretty aggressive treatments. My oncology team promised to "throw the kitchen sink" at my prostate cancer, including surgery, (then) new medical treatments, and high, so-called "curative" doses of radiation. Even though I was flat on my back in a hospital bed, paralysed, at first, my body was strong enough to handle everything they gave me, and I credit that for the fact that I'm living a mostly-normal life again, full of joy, and once again planning for a retirement and old age that I thought for a time I wasn't going to have.

So again, I hope your case isn't anything like mine, but in the small chance that it is, don't lose hope! You'll get lots of good advice here in the forum, and one of the most important is to get to a multidisplinary cancer clinic rather than just your local urologist, because they'll be up to date on all the new treatments and best practices. In the U.S., that means going to a "Center of Excellence" like our kind hosts at Mayo; in Canada, where I live, it means going to a "Cancer Centre" affiliated with a university medical school.

Best wishes, and it's normal to feel scared and alone right now. I shared my situation with family and friends right from the start, and I think that eased my burden a lot, but your mileage may vary. If you'd like, DM me with your phone number, and I'll be happy to call and talk more. I promise it won't always feel this way, emotionally.

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Hi, @deku. Given your appeal for fellowship, I come to encourage you to give preference to the good prospects that will certainly come your way in the days ahead. Most important is to let optimism emerge from your research into cancer, because you haven't said that your medical team and the arts and sciences that they practice hold out high prospects for recovery and rehabilitation. I say that with insights gained in my own experience. Nearly a year ago, a CT-scan showed a severe narrowing of my large intestine (colon) right at the point where it turns down at the top left of my abdomen. A colonoscopy and biopsy revealed a circle of cancer was growing the colon shut. With bowel resection surgery, my doctors removed most of the colon after finding cancer cells also at its attachment to my small bowel (near my appendix). Today, nearly 11 months later, no further cancer has been found in repeated laboratory tests, and all of 20 lymph glands are clear. Rehabilitating my digestive system has progressed well, and now I'm focused on rebuilding muscles that had been starving before surgery. Now, at age 89, I remain in regular contact with my medical team, keep them informed of what's going on with me, and getting prepared to sing in the holiday concert of our community chorus and to bowl for the sixth time this Fall in our community bowling league. My life before me is going to continue to improve with help from my wife. Yours will too. And all of us are here as your friends to do what we can to help keep you company. Martin

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You should take a look at the Ancan.org website and sign up. They will need the results of your biopsy to really help, but once you have that they can give you help on what to decide but also they have a group for people under 60 that meet to discuss how they feel about diagnosis of prostate cancer at a young age. They have another group that meets twice a month to discuss emotional issues.

You will be able to talk with other people who have prostate cancer and that are around your age. Depending on what the tests find they can help recommend what to do. They also have a group for advanced prostate cancer that meets weekly, and another group for people that are low/intermediate that meets every other week and both give recommendations on treatments.

Because you have such a high PSA, you should be getting a PSMA Pet test if your biopsy shows you have a Gleason score above six. That will show if the cancer is spread anywhere else in your body. Hopefully your medical team also recommends this.

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Sorry that you will get to know folks here, but glad you found the site! Good luck with the biopsy and continue the path of education as that will always be essential and will provide some confidence in your outbound messaging to family, friends, co-workers.

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You'll probably get lots of replies, but since I'm 6 weeks post-op, here's my 2 cents worth...

Not alone at all. You've absolutely come to the right place.
I remember every step of this & the biopsy wasn't too bad. No pain- just uncomfortable. You'll be alright.
The worst part was waiting for the results.

PSA blood tests & MRI scans (if you had one) can only be a cause for "concern". They don't really know what's going on until they can get actual samples from the prostate. That's the biopsy.
You'll meet with the urologist for the results (I had to wait a very stressful 6 weeks).
But it'll probably be quicker in your country.

If cancer is diagnosed, you'll be asked to consider a number of options.
One is to wait & have regular tests to see if things change.
Another is to have radiation treatment.
Another is to have surgery to remove the prostate.
You don't have to decide then & there.

But there are lots of knowledgeable guys here who have been through this, so come back here with any & all concerns while you wait for the results and after the results come through.
Good luck.

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@peterj116

You'll probably get lots of replies, but since I'm 6 weeks post-op, here's my 2 cents worth...

Not alone at all. You've absolutely come to the right place.
I remember every step of this & the biopsy wasn't too bad. No pain- just uncomfortable. You'll be alright.
The worst part was waiting for the results.

PSA blood tests & MRI scans (if you had one) can only be a cause for "concern". They don't really know what's going on until they can get actual samples from the prostate. That's the biopsy.
You'll meet with the urologist for the results (I had to wait a very stressful 6 weeks).
But it'll probably be quicker in your country.

If cancer is diagnosed, you'll be asked to consider a number of options.
One is to wait & have regular tests to see if things change.
Another is to have radiation treatment.
Another is to have surgery to remove the prostate.
You don't have to decide then & there.

But there are lots of knowledgeable guys here who have been through this, so come back here with any & all concerns while you wait for the results and after the results come through.
Good luck.

Jump to this post

There are at least three other different types of treatment that don’t involve radiation. HIFU, Cryotherapy, TULSA-PRO

Lots of options to consider besides radiation/surgery if the biopsy shows prostate cancer.

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This forum is great, so you def have support here. My PSA 6 months ago was 6 and I had a biopsy come back Bening for PC and I was put on 2 years of monitoring. At my check up my PSA is now 12 and I got put on Supplements to reduce the inflammation. In Jan I retest and if my PSA is still High I will retest etc. and then go from there. Good luck on the biopsy.

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Keep talking to people. Early on I put too much emphasis on the physical and neglected my mental health and, as some people here will remember, it wasn't great. All kinds of thoughts are probably going through your mind right now. It's easy for people to say "don't get ahead of yourself" but much harder to do this in practice.

If it turns out you don't have prostate cancer you can breathe a sigh of relief. If it turns out that you do, you can reach out to people here but I would also recommend looking for an IRL or Zoom-based support group and a psychotherapist if that's not too expensive and is something available to you.

If you have a spouse or partner, bring them to all your medical appointments early on (other than things like routine blood tests) since you won't remember everything that is said and some of it will be a blur. If you don't, bring a trusted friend.

Hopefully, you've already had an MRI so your biopsy will be sampling areas of concern rather than a "blind" biopsy. You will likely be sore for a day but recover fairly quickly. And if nobody warned you, you're going to have blood in your urine and semen and this is totally normal. Mine cleared fairly quickly. The doctor said up to two weeks but for me it was just a couple days. I hope it goes well for you!

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Sorry and Glad that you are here. So many helpful people on this site. For me personally, my wife has been through this since the beginning, I can't do this without her. I understand you might not want to burden family but in times like this, I think is best, not easy to go through this by yourself, even if results aren't in yet. Even with family to talk to, this site has done so very much to help me. Also, my psa was 932 at the beginning, now sits around .03. I wish the best for you. Best to all.

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Welcome. deku. We like to do it all here suggestions, attention, sympathy, encouragement and companionship, and cheer. It is a kind of lonely, sometimes quite difficult experience. There are many men on this site with the deep wisdom of experience. I hope you'll find it a good place to rest.

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