55 and prostate cancer - Scared shitless - Prostate Cancer N...

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55 and prostate cancer - Scared shitless

ianvnqld6
ianvnqld6

Hi, at the beginning of last year my PSA jumped from 2.1 to 3.6 - with a family history (father, uncle and brother all sufferers of prostate cancer) my GP didn't want to take any risks. I was referred to the Mater Hospital, the specialist recommended a biopsy, this came back clear, still not happy that PSA was still at 3.6 they organised an MRI which showed a legion in my prostrate. they were not sure if they took samples of it on the biopsy they did a second biopsy. this came back with one third of one core in the legion as cancer Gleeson score 3+3. specialist advised active surveillance with 4 monthly PSA tests - this was set in motion in November last year. my first PSA test in the active surveillance (March this year) return a PSA of 5.5 (I had 4 PSA test last year and all of them return a reading of 3.6). The specialist has ordered another MRI and PSA test and then back to the clinic to explore my options based on the results. he mention that if there was a change in the legion on the MRI - my best option would probably be surgery. i am not trying to come to terms with it all and research my options.

38 Replies
Darryl
DarrylAdministrator

You might consider getting a blood test called, Opko 4K Score You can read about it here: 4kscore.com

ianvnqld6
ianvnqld6 in reply to Darryl

Thanks Darryl, i will look at it.

I agree with Daryl. It might give you some perspective on the timing you have to make a decision. Lots of choices out there that’s depend your life situation

ianvnqld6
ianvnqld6 in reply to rf3rf3

Thanks, i am looking into it - the more i can find out the better.

Burnett1948.ianvnqld6. I take it you are a Queenslander in Australia. The best surgeon/urologist who gets rid off all the prostate(leaves nil behind) saves your potency and keeps you continent is Dr John Yaxley of the Wesley Private Hospital Urology Section in Brisbane. Don't panic. I did and thats when you make wrong decisions.

Thanks Burnett1948. Yes i am a Queenslander in Brisbane. Thanks for the great information.

That PSA is too high and you're too young for safe watchful waiting so get the surgery as soon as possible. In Younger men cancer tends to grow faster. Mine was stage 2C or 3 at age 43 with a PSA about 3.8, Gleason 3+3. Very tight .01cm margins. Needed salvage radiation at 52 PSA .45. Now back under 0.02 and age 54.

Thanks for the heads up tetech. my doctor ordered the MRI as he didnt like the jump either. Some part of me hope that they do operate to get rid of it.

Hidden
Hidden

Hi Ianvngld6 I like Darryl's recommendation. I would also recommend you ask to have your biopsy analyzed with some genetic tests to determine how aggressive your cancer is. Here is an article which describes the various tests ncbi.nlm.nih.gov/pmc/articl... You may still be able to continue AS or start a hormone treatment rather than surgery right away. Take your time you don't have to rush into treatment. I just ordered the new book by Dr Mark Scholz, The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer. I was recommended recently for AS by the top PC surgeon in my state. I am 68 and had a TURP which complicates surgery. However, my surgeon said my gleason 7, 3+4 -15% in two cores and a 3+3 -5% PSA in one core with a 13.78 PSA wasn't much different than a 6. He said he would stick with AS until things changed which may be years. I am scheduled for 3T MRI, bone scan and waiting on results from two genetic tests and will do 3 month PSA testing. Also continuing my consults include a Proton consult. A good book on AS is Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and their Families by Mark Scholz and Ralph Blum. Most men can't handle AS as they get a lot of pressure for everyone to do something quick. Good Luck!

ianvnqld6
ianvnqld6 in reply to Hidden

Thanks awinnegar - i will go looking for that book. it sounds like it my help me with my decision in the future.

I found that writing my thoughts down in a journal or on this site helps. Sometimes it is hard to tell your family/friends what is going on in your head. Keep writing. Then later (weeks) read your notes . You will find changes in how you feel. Better.

Hey Steinmoher, i hadn't though of that. i will keep a journal from now on.

And take the journal with you and a friend or family member when you see your MO. It's well known that when we hear the word CANCER our brains shut down and we stop listening. If it helps to keep things in perspective my PSA at diagnosis was 200. All 12 biopsy cores cancer. Over 40 bone tumours. Now 5 years later PSA constant 0.03/4. No current bone tumours. Just fatigued now and then. Keep running!

Thank you - i will take my journal book and see if i can find someone to come with me, though i have already heard the word "Cancer", each step along the way throws something different/new in your path to deal with.

Thank you for your encouragement - you certainly were in a worse place than i seem to be at the moment. it helps to know that other guys, including you are surviving this and still able to get on with life.

Normal PSA is up to about 4.-something. You are still under. You are an example of how the PSA test can cause undue anxiety ("scared shitless") even though you not far from norms. (Which is why urology societies are debating its overuse to this day). Clearly your doctor is doing due diligence, and perhaps is a little overly aggressive. I doubt that surgery is indicated with a Gleason 3+3--that is considered non-aggressive. I agree with keeping active surveillance, PSA every 6 months (not every month!). Calm down. If you're a Brit, have a spot of tea. Or a good stiff drink.

jazz2cool
jazz2cool in reply to Jeff85705

I have the same Gleason score, 3 cores on the right side, one 50%, T2, 59 years old. Was leaning toward monitoring since I could conceivably live 20-30 years and hate the idea of incontinence. And ED is not attractive either but it would not affect me daily like incontinence would. BUT, a Prolaris genetic test reveals my cancer is a more aggressive type. I don’t think I will be able to monitor long, so I am back to considering definitive treatment. When you wait you risk not being a good candidate for treatment due to ancillary health issues, and I wouldn’t want to lose an opportunity to be cancer free if treatment is required in my near future anyway. No firm decisions yet. I like the journal idea. I would write three chapters on the surgeon who asked me if I had many more questions because he had other patients to see. I have found this forum to be a godsend. It felt like a lonely decision before. It won’t be easy but you and I will both be ok. Stick with us and let us know about your journey, how you are feeling, your treatment and outcomes. It will help you and us. For what it is worth, I initially told my urologist that I would rather let the cancer get me than live with a diaper for 20 years. I now realize there are sphincters and other options as well and after the initial shock and this group support, some hope has returned. Not unrealistic expectations, but hope.

Jeff85705
Jeff85705 in reply to jazz2cool

Incontinence is NOT necessarily permanent or requiring a "diaper" or pad. I had some stress incontinence after surgery, but I am 98% continent now. Occasional drip when I sneeze occasionally. My incontinence lasted about 2 months and was always treatable with a pad and not inconvenient to change. ED following surgery is immediate and complete, at least with me. The appearance of my penis changed, becoming smaller in looks, and my libido shrank, too. I had nerve-sparing RALP, and with that, I have gradually had erections return (3/4 to 7/8!) with the help of 60-80mg of generic viagra (you can get it cheap). It took me over a year to get any kind of erectile response whatsoever, so it can take long for the traumatized nerves to return to function. Still, I feel much better psychologically knowing that the prostate is gone, rather than going through radiation with its own side effects BESIDES ED and incontinence (rectal issues especially I think), and the prostate still there.

jazz2cool
jazz2cool in reply to Jeff85705

Thank you for the reply. That sounds like better news. My wife tells me that she has been incontinent when she sneezes for years. I can live with that if I have to. I can live with recovery time and I can live with minor accommodations (I guess I can live with most anything if I have to but I am referring to quality). But I have an uncle with no control whatsoever. It is so bad that he has to get out of the full adult pads or diapers (whatever is the appropriate term), and into a catheter for a few weeks occassionally just to allow the skin breakdown to heal. In the southern part of the US, wearing an impermeable moisture barrier in 98% humidity and 98 degrees heat for 5 months is a problem.

Jeff85705
Jeff85705 in reply to jazz2cool

Everybody is different and has different experiences. What surprised me most after surgery was the immediate and total ED. It has improved, but can take a year or more to return to pre-op potency--and only a 50/50 chance of that. For me that was the bigger negative effect, more so than the incontinence which stopped in a couple of months. I guess wearing pads didn't bother me because I live in the Arizona desert, where humidity is typically under 10% much of the year. Still, considering you are married, the ED will be the bigger issue in my opinion, especially if you are sexually active.

jazz2cool
jazz2cool in reply to Jeff85705

I don't minimize the ED impact for sure. But there are not any current treatment options that I am aware of that really give you a better chance on that score. If monitoring is not an option, ED is in your future at least for some time it sounds like, but incontinence doesn't have to be what my uncle is going through.

I try to use a little humor and wonder if I can pretend to be offended when someone says "Man up" or "put on your big boy pants". Who knows, maybe I will be offended. :) Gallows humor. It works for me.

Hi Jeff85705 - i was 3.6 on all my PSA tests last year (the last one in November), the test this year in march this year was 5.5. i know the norm is around 4 (my doctor said that too). but the family history is what is getting him worried. my brother was 54 when his prostate was taken out the size of a lemon and full of cancer (7 years ago). my father had prostate cancer, his brother had prostate cancer and died from it. i am trying not to get worried but things are stacking up against me. i was happy with active survellance, but i think there is more happeninig now.

Thanks anyway for your advice.

Hidden
Hidden in reply to ianvnqld6

Hi ianvngld6 I think with that many family members it could be hereditary. Here is a free screening test from Prolaris one of the companies that insurance should cover for your test hereditarycancerquiz.com/pr... or prolaris.com/prolaris-for-p...

ianvnqld6
ianvnqld6 in reply to Hidden

Thanks awinnegar. i will at both.

jazz2cool
jazz2cool in reply to Hidden

I found I have a more aggressive cancer through a Prolaris score even though I would normally be a good candidate for monitoring. If I had found I was even lower risk, I would solidify my decision to monitor. I don’t like the result but it is better to know. I have a 2.5% mortality risk in 10 years if I do nothing. I have less than 1% risk with treatment. On the one hand I am more than 2.5 times likely to die from it if I do nothing, but it is still only 2.5%. I am working on being around until my 5 yo granddaughter finishes MED school and an internship and gives me great grandchildren.

I did proton beam therapy and then HIFU with the re-occurrence. Doubling time is key, I went from 3.9 post Proton and stayed there for 5 years, then 4.2, 5.2 and a jump to 9.2. Just before HIFU my PSA was 12.7. I just did HIFU a month ago with no urinary issues, unknown on ED yet. These tests were approximately 6 months apart.

Prior to Proton it was 6.9 on diagnosis, then 10 months later 10.0. For me, surgery was the least favorable option at age 49. No real side effects with Proton or HIFU. If you do surgery, get the best doctor. Don't rush, and enjoy each day.

ianvnqld6
ianvnqld6 in reply to LVRob129

LVRob129, thanks for sharing your experiences. it really helps me to understand what i am going through. i appreciate your honesty and i hope everything works out for you.

LVRob129
LVRob129 in reply to ianvnqld6

Thanks. I feel great. You will too!

ianvnqld6
ianvnqld6 in reply to LVRob129

Thanks for the encouragement. i really dont have anyone to lean on at the moment which makes it harder.

LVRob129
LVRob129 in reply to ianvnqld6

I was in the same boat. Just divorced for 6 months when I got the news. Booked a trip to Thailand so I could enjoy what might be my last hurrah. Went back the next 3 years after the Proton. Life isn't over, its just a little different.

ianvnqld6
ianvnqld6 in reply to LVRob129

Thanks for the encouragement - i guess for most guys that is the scary thing. it is good to hear that things can still e relatively normal.

WSOPeddie
WSOPeddie in reply to LVRob129

I had HIFU surgery at age 66 and the results so far (1.5 years later) are very good. Undetectable and no quality of life issues. Stopped ADT a year ago.

Thank you. it is good to know.

My biggest concern is that nothing is being done for Prostate Cancer (PC). PC may overtake breast cancer (BC) in 2018, yet BC gets 10 times the funding including government grants and donations. Most PC scientists have changed to BC because it's where the money is. We need help if there is going to be hope. This disease will kill a man physically, emotionally and psychologically.

Good luck. I had surgery 3 years ago and I am cancer-free. If you have any questions, please ask. I had no chemo or radiation.

Hidden
Hidden

I think they said "lesion" and not "legion." You have an array of options and ironically maybe too many sources of information. Your cancer is not my cancer or anyone else's cancer and your risks at 55 with a family history are not mine at 75 with no history. I agree with the others that the more information you have the better your decisions. I like the book by Scholz The Key to Prostate Cancer for its accuracy and how it leads you through a decision pathway based on science. Please, Please take your time, fight the fear and do not rush into a treatment decision without full consideration of options. Understandable that you are scared shitless, but it is not a crisis that needs solving right now. Good luck.

Had tests done at 51 for OAB... PSA of 47.

I was almost dead. Found out on my bday. Just completed a removal of the whole prostate. They say I dont have it spread to any other organs or outside prostate at this point but only time will tell.

My Gleason's were 7+ across the board.

i feel like your only hearing one side to your treatment .....so young to risk all the se`s associated with removal.....yes ...I had the traditional 45 fractions of radiation IGRT....and after 3 years now , close to normal...hard erections....no leakage...no rectal problems....T levels in the 600`s.....Im 71 ....going strong .....all Im asking is to talk to radiologists and hear the whole story on both sides.....go slowly ..you have time .....Peace and love ....David

I would strongly recommend the robotic surgery, especially since your cancerous lesion is most likely totally contained within your prostate (mine had spread). If you wait, and the cancer grows, you will most likely want to have the surgery anyway. Having it done sooner will give you peace of mind sooner. Good luck to you.

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