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Advanced Prostate Cancer
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Someone posted a ? How long with stage 4

A question. All of you who are responding to stage 4 prostate cancer..... are you saying that you were diagnosed with prostate cancer, had it treated and then found out that your cancer was OUTSIDE THE PROSTATE and now you are living with stage 4 prostate cancer, some of you as long as 17 years? Is this correct? I’m confused. My husband was treated with radiation for prostate cancer and found out 1 Year later it was outside the prostate. This is when it’s considered stage 4. No cure. Some of you have responded that you are living with stage 4 prostate cancer for 8, 10, 17 years. I’d this correct???? Or are you telling us that those years include from first diagnosis which is not stage 4. Help to clarify please. Thank you!

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Diagnosed 2011 same year RP revealed cancer had spread outside the prostate Had radiation,hormone therapy ,currently on my 4th treatment of LU-177. Look good feel good. Don’t believe everything you hear.Dennis

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Thank you and may god continue to bless you with many more good years

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Great news, long may your good status continue

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I am nine years (and ailing) with stage 4. I’m measuring from first bone scan showing mets. Twelve years since diagnosis.

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Thank you for your response. I’m sorry you are ailing. I hope you have a better year ahead 🙏

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We are all ailing .. still kicking though. That’s what it boils down to .

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Truthful Yost .. ailing is aptly put. We find joy beyond the ailing . Peace

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All the best. You made it this far, keep doing whatever makes you feel good.

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Have you made diet changes? I’ve been doing a lot of reading but can’t find advice on what drinks might be good. I’m trying to find good but sugarless drinks for my partner, is caffeine free coffee with honey a good alterto sweetners? We’re using soya milk.

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I have not made serious dietary changes, but you should find plenty of discussion here with folks who have and have ideas to share.

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At nine years plus now. Psa was 3000 then. Now it is 2000. Feeling good and increased time at gym. No pain in nine years. Go figure.

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That is unbelievable. Happy for you. This gives me hope. Bthsnk you

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Amazing Dr!

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WOW, I wanna be that, but 0.001 psa . Good for you. 👍

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Wow that is incredible !

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I did ask that question, but then realized that it's very unlikely that someone with over 15 years could have had all of those with stage 4. There are some that go 10+ years, but a much smaller number. Dan59 was one. He passed away recently and was at stage 4 for 12 years.

I was diagnosed at stage 4 so all my 2 1/2 years so far are at stage 4. Hoping to have a lot more.

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Thank you for the info. This damn disease is so random. I do like reading that multiple years are possible. 🙏🙏

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Mine was not detected nor treated early in any way. Already very metastatic & painful Stage IV at original diagnosis, 5 1/2 years ago, with starting PSA 5,006. Went straight to systemic treatments. Initial ADT took away the pain and brought PSA down to 1.0. Other treatments details are in my Profile. Now on Lupron + Xtandi. Latest PSA 3.2. I feel lucky and grateful, overall.

Charles

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Wow such good results for someone not detected early on. Thank you for the info. 🙏🙏

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I was diagnosed G-9 11 years ago. + margin. SRT + HT. Undetectable for 2 years, then popped a 0.2 ... Back on ADT, undetectable for 2 more years, scans clear. Then 0.03... Zytiga added to ADT, 2 more years below .03 .. Scan showed first bone met somewhere during this period..Zytiga failed, PSA began a rapid rise, multiple bone mets appeared, ribs and skull. Turned down for Provenge, I was too far advanced..moved to chemo, Dosetaxel, side-effects rough so switched to Cabazitazel, worked good, PSA cut in half from 250 to 150..Gave me another year..Now, today, PSA 1000, waiting to get into the "Vision" Trial" or failing that, R-223. Failing that, back on Chemo...I'm going to try BAT somewhere along the way..My prognosis was changed to "Terminal Prostate Cancer" when that first bone met showed up on a bone scan five or six years ago..But personally, I think that diagnosis could have been applied when my surgical pathology came back G-9 with a + margin...That would be 11 years ago..I'm feeling the weight of my situation now...

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Amazing story. God bless you. Thank you for your response! 🙏

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You go boy

🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽

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You’ve been in a real storm ... strong to endure . My hat off to you ..

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are you able to get into LU 177 treatment? Have seen videos with dramatic success where extensive bone met is present...

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Hello cloc,

I think the lifespan of a stage 4 patient depends on how well the patient responds to the treatments. The best measure of that that I'm aware of is PSA. If a particular treatment (Lupron, Zytiga, Xtandi, docetaxel, Lu-177, whatever) causes the PSA to drop a lot, and especially if it drops down to a very low value ("undetectable" is the very best value but anything below 1.0 counts as pretty low) that usually means that survival during and after that treatment will be long.

20 years ago there were very few treatments. Today there are a bunch and a good new one comes out every year or two. Not everyone responds to new treatments, but each new one offers yet another chance for life extension to some patients and the more new ones there are, the more chances a patient gets to hit a winner that helps him. Even when a patient tries a number of treatments and never has a good PSA response, it's still possible that a new one will come out to which he does respond well. A good example of that is the Lu-177 PSMA treatments. That treatment has nothing to do with androgens and people who didn't do well with any of the hormone type treatments might still do very well with Lu-177. The same is true for docetaxel. Some men who get very little from hormone treatments respond well to docetaxel or other chemotherapies.

Medical science hasn't yet developed a cure for old age, but more and more of us are getting to live into old age, and I'm optimistic that more and more men in this group will manage to do that.

Meanwhile, we must never allow ourselves to worry so much about dying that we forget to enjoy life. After all, enjoying more life is the reason why we keep trying to prevent death. So be of good heart.

Best of luck to you both, and to all others with cancer.

Alan

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Bravo AlenMeyer! 👏

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Thank you Alan. Thank you for your wisdom. I need to stay in faith bc I swear it is a crapshoot My husband has never been at ‘undetectable’ I do know that each of you here are individuals and respond differently to different meds. I hope we find what works for my husband. God bless. Enjoy everyday!

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🙏

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👍👍👍👍👍

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Great post!

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Very well stated.

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Alan..you have a gift for writing

Thanks for your phioso

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He does!!

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83 here. No pains yet

Lost 4.6 stone

I’ll go to VT when it gets unbearable

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Nope hit the lottery. Healthy straight to stage 4 in 2.5 weeks. 5 memorable years and many more to go. I love Birthdays. Good luck to you.

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Thank you and good for you!!!!! I hope you celebrate lots of birthdays. 😀

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My dx was #4 on 3-15... I’ve had over fours years living with stage #4 after treatments ..yes some have lived for decades ..no cure ,but life just the same . I appreciate these fours years after kidney failure in the first round For me everyday not in brutal pain is a win . Buckle up for the ride ...

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Thank you LuLu I’m buckled up. I’ve learned here that it’s not easy. 🙏

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I’m not ready to jump in the box yet. We must fight hard to live with APC . But to die from it all we have to do is give up.. It’ll do the rest ..some families have been doing battle with #4 for over 20 years. I cling to life with appreciation... Choose life , heal yourself anyway that you feel fit . God bless

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Go lulu 700

You need to stay around !!!

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As long as I’m allowed to be here, I will be. I choose life knowing that none of us are really in control of such matters.

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2 years for me since first diagnosed. I am on a clinical trial at MD Anderson and go there every other week for treatment from Colorado.

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Thank you for sharing this with me. Hang in there. Praying🙏

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Stay on top of it ! Good job!

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My husband was diagnosed in the fall of 2004. Cancer was everywhere outside the prostate: up the neck of the bladder, outside the margins, etc. It was at surgery when he was stage 4 and Gleason 9 or 10. It wasn't good. Surgery was Dec. 2004, first Lupron shot was Feb. 2005, radiation, 7 weeks began in March. Besides Lupron shots, he was on Casodex for 3 years, had a year of Zometa infusions. PSA remains undetectable and it's now 2019. He's now 70 and leads a fairly normal life, still rides his motorcycle and has all kinds of projects that keep him busy. It's not a death sentence, obviously. Les, my husband, eats lousy but does get plenty of rest plus we live in Hawaii so he's happy all the time!

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This is another amazing story. You are blessed and I did not know one could have so many good years ahead. God bless 🙏🙏

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God bless Les.

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So happy to hear of a long-term survivor that isn't vegan :-)

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He's not into food. . . . . any food. It's something I don't understand! But, his blood work is all in the normal range, go figure. As long as he feels good. . . . . . .

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My husband was diagnosed 12 months ago with stage 4

Boney metasteses And lymphnode involvement

Trying all we can

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Us too. It seems that if the dr can find what works for the patient....that’s the homerun!

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Hi my hubby was diagnosed with stage 4 aggressive in 2015 November he lost the fight this January 2019 once it gets hold it won't let go but every man is different we are all fighting prostate cancer but every prostate cancer is its own Demon once sett off in its host I miss my (boo) so much good luck xxx

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I’m so very sorry. Sad news Prayers. 🙏

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Sad. Trust you enjoyed good times with him and have memories to match.

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I'm sorry for your loss. My husband too was diagnosed in August and operated on in November 2015 and has had lots of hiccups along the way. Has just started Lupron and now is anxiously awaiting next PSA. I think you're right everyone is different. We try not to think too far ahead as we know that things don't always go the way you'd like. Think we've been able to be realistic as his specialist isn't too positive. For some I know that would be a problem but for us we find it keeps our feet firmly planted in reality. I do hope you have lots of happy memories to ease the loss.

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Miss him sooo much it moves so fast once it gets a grab u just can't stop it its a fucking horrible disease xx

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I hear you. When I anticipate the sad stuff to come I am in such a funk. I hold on to that sad feelings pass too. Prayers for YOU!

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Agreed! 😩

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Yes it can be like a steam roller for some. My PA's husband ,once mets in bones appeared went downhill in no time. If you ever get a chance to read 'An Ordinary Day' by Leigh Sales (an Australian journalist) it explores how everyday people manage terrible tragedies like you've experienced. Make sure you look after yourself

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Rest In Peace to hubby. He suffers no more . My hope is that my wife will live a long happy healthy life after I check out ... We don’t want our wife’s to go down with us.. Carry the torch forward for us fine fellows. Peace

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It's hard to carry on without your soul mate believe you me it hurts so much and thankfully Steve was not in pain until the last few days x

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I am sorry for the hurt . That is love . It was Fortunate that he didn’t have pain ...until the end ...but no more . Your love carried him to heaven . . Love is eternal . Thank you for posting . It’s very positive for us both . ❤️

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Diagnosed July2014 psa 180 stage 4 mets to pelvis. Treated with Lupron only steady drop of psa to 6. Got my fingers crossed. Changed to veggie diet.

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Good for you. My husband eats what he wants and not interested in changing it now. His words not mine. Best of luck to you 🙏

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Keep on Lupron. Do you take anything else, like Zytiga/prednisone? I switched to a vegan diet several years ago and it is wonderful. My OC suggested it

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Veggies rule!

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Kewl .... lots of people think I’m a vegetable, I must rule ...... far out. 🤪

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Good thing that we are mature enough not to care much what other’s think about us . I am what I am . Like Popeye,I eat my spinach ... Take the high kaliber road ....the road less travelled . We are what we eat ... Take care friend .. 🎢

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I’m way more preoccupied with meat ( the elephant in the room ) myself. Besides I’m not sure what a rutabaga is anyway. That elephants favorite snack seems ( in my case ) to be rutabaga yayahaha. Fortunately this rutabaga is a big one, gonna take that elephant a while to eat it ...... more really is better. 😎 yayahaha yayahaha. Now I want a glass of tomato juice. Thanks buddy.

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I am fifteen years and doing well. I had brachytherapy, followed by a salvage RP, only to find that the cancer was elsewhere. One minor met in my spine, others in my lungs. Currently on Zytiga.

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Thank you for your response. Great news for you ! God bless 🙏

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Do you take anything else with Z? Prednisone? Hormone injection?

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5 mg pred every morning. I have been through the gamut of Androcur, Zoladex, Lupron, DES. All of them eventually failed. So I am now on Zytiga.

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What I've read is that there are subtypes to this cancer, and they're working hard to better articulate them. One doctor believes there are 16 separate subtypes. How the cancer feeds and evolves determines how it responds. About 30% of cancers diagnosed at stage 4 seem to respond well to one or more treatment. The rest go down the path we know so well: some months of castration response, limited response to other treatments, 2-4 years.

Gleason 9, Stage 4...we spout these things because humans like labels and control, but they don't mean the same for every person. My husband is in the fun group of people diagnosed with a widely-spread cancer. Will he be in Big Group 1? Or Happier Group 2? Will the radioligand treatments make a difference? Should be be on Erleada out of pocket? Did we make the right choice with chemo up front?

We're two months in and his PSA is coming down on ADT. That's all I know (and likely can know) at this point. We are both planning our future and making a will.

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Thank you for your thoughts. I believe what you believe. We just do not know until we know. Sucks!

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I was Stage 4 at diagnosis in June, 2015. Oligometastatic with one tumor on right inferior pubic ramus (confirmed by bone biopsy pathology to be metastatic prostate cancer).

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Thank you. Best of luck to you. 🙏

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Yes, I was diagnosed stage 4. Lymph nodes on the side of the prostate were positive. That was 27 years ago.

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SIMPLY AMAZING!!!!!!

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Diagnosed PSA 571, multiple metasteses to skull, shoulder, two ribs, pelvis and both femurs, plus multiple small ones. That was 7.5 years ago and PSA immeasurable since 12 weeks after joining STAMPEDE trial 3 weeks after diagnosis. I'm on ADT, Zoladex, Zytiga (Abiraterone) and Prednisone.

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one of the lucky ones God Blesses you Amen

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I was initially dx Stage 4, with mets to spine, pelvis, ribs, sternum and several nodes back in March of 2014. I hit it very hard early, currently PSA is undetectable and scans show no active disease. Talking it a day at a time and realize that it could change at any time, never taking my current status for granted.

Currently at 5+ years and hoping for a long run. God works miracles and I’ve been blessed with some great docs. And on we go...

Ed

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when you say you 'hit it hard' what does that mean? did you decide to go with chemo?

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Lupron, Casodex, Avodart right out of the gate, then Radiation (IMRT) to prostate and several nodes, followed by chemo per CHAARTED, Metformin, then switched to Xtandi over Casodex while still hormone sensitive back in 2015, Leukine, Xgeva + Celebrex, all part of Snuffy Myers protocol where you throw the kitchen sink at it .

Currently still on Lupron, half dose Xtandi, Avodart and Metformin. Also Mediterranean diet, daily exercise and most importantly, lots of prayers.

Ed

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🙏

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I was diagnosed with stage 4 PC just over 7 years ago on my 54th Birthday. I had a Gleason score of 9 and a rising PSA in the mid 40s with several mets. One in my pelvis (acebellum), 2 in my vertebrae, one was found in my lymph nodes when I had my prostate removed along with 34 lymph nodes. They also thought i might have had 2 more in my ribs but were unable to corroborate and I think they no longer believe there were mets in my ribs. Treatment (degerolix) later followed with Lupron didn’t begin for a month while I met with 3 top guns in NYC.

My doc at MSKCC recommended removing my prostate even though there was no scientific studies supporting such surgery. The other 2 top docs I saw thought he was crazy. I had one series of radiation on my pelvis 5 years ago. Early on, I was treated with Lupron. Later on, they added Zytiga (with Prednisone). For almost 6 years those medicines were given to me on an intermittent basis. The last treatment was without the Zytiga. The first time I went off the meds I remained off them for about 20 months. I have been treated by a new doc for over a year now. She has me taking Lupron only and also has me taking it continuously. Thankfully, my PSA has always dropped to undetectable when treated with the Lupron and was at that level the last time I was checked. I will be checked again at end of June. Clearly, I have responded well to treatment. Obviously, we are all individuals and none of us have exactly the same condition and none of us react exactly the same way.

I have been fortunate in my response to treatment and hope your loved one responds well too.

All the best!

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Yes you certainly have been. Thank you for your response. Continued blessings 🙏

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My other docs thought my radiologist was crazy too when he wanted to radiate my prostate (he felt radiation less risky than surgery). Later when I started seeing Snuffy Myers he said that killing the “mother ship” was one of the best things I did early on.

Ed

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I am glad to hear it. Let's face it- there are many unknowns presently in the treatment of this disease. When I told people how I was being treated and am presently being treated, I tell them it's more of an art than a science. Our doctors have to give advice based upon the information they have and unfortunately the information available at this point in time is not complete. The good news is the medical field is working hard on this disease and is gaining info about treatments on a frequent basis. I believe 2 important reports came out today that I will be asking my doc about when I see her in 3 weeks. If I read the article correctly, I think I should be on enzalutamide in addition to my Lupron.

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Started with stageIV almost 7 years ago

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Thank you. Prayers for continued good health 🙏

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Cloc,

I questioned this on another thread, but to reiterate:

My husband had RP in 2011 as his G-score at time was 4+3=7.

He was not staged to my recollection

His PSA was never undetectable after surgery so I guess he is stage 4.

He is going on 9 years with treatment and doing well, still working.

His PSA is SLOWLY climbing with Lupron, however our Oncol. is happy with the results, as the last 3 months his PSA is receding.

I hope this helps.

Good luck,

BOOGEE

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Yes thank you so much 🙏

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Thank you for asking this question, which was also on my mind. At dx in late 2014 my husband was T2b, Gleason 9 with low psa of 3.38. (Our excellent urologist thought he was probably T3 since there was blockage at bladder neck.) As you can see from his signature below, his Lupron treatment kept him undectable for about three years until a year ago when he had rapid doubling time, became Stage 4, and had 3-4 visible bone mets on CT scan. So he's nearly a year at Stage 4 and now on Lupron/Zytiga/Prednisone.

Husband 70 yrs (74 now) pacemaker; Agent Orange 9/14: blood in urine; DRE suspicious 11/14: biopsy G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved

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Lupron taken for 33 mos (currently on Lupron again after a year hiatus.)

6/15: 9 wks IMRT

9/15= .14

1/16= .093

4/16= .079

11/16=.05 (nadir)

2/17-5/17=.05

1/17= .08

2/18= .20

4/18= 0.98

6/18= 3-4 bone mets seen on CT scan

7/18= 3.29 (ALP 78)

8/18= 9.0 Lupron re-started with a month of Casodex

11/27/18 = 7.0

2/9/19 Zytiga/Prednisone started with ongoing Lupron

2/28/19 = 4.02 (ALP 85)

4/11/19 = 1.80 (ALP 68)

5/28/19 (last week) = 1.53 (ALP 65) but need to call onc about liver enzymes, which showed up as out of range 67 AST + 95 ALT. Bilirubin okay for 3 mos on Zytiga

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thank you for responding. Looks like he is responding well. That’s a blessing for sure 🙏

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Hi There,

Diagnosed 2009, removal of prostate, prostate was "clean in the margins" meaning no cancer at edges of prostate.

Then 2010 started RP, since PSA was climbing, 13 weeks, or 65 sessions.

2 years not a peep, then it's back in 2012. I would guess that at this point I was considered incurable, although only minimal growth of a few lymph nodes, which has since subsided.

And that's where I am now, cycled through Lupron alone until 2016, then Lupron + Zytiga and Prednazone until December 2018.

Now going 10 months with just Lupron. Watching PSA slowly rise. (I do mean slowly as compared to previously)

It's an evil disease, and the treatments can make you feel like a guinea pig for the Pharmaceutical companies and your Oncologist.

Point is, YES I'm 10 years in, no mets, and incurable, and I guess stage 4

Good luck, much love and blessings to you!

Bees

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Thank you for your response. That’s a damn good response! Good for you! 🙏

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I pray you journey will be better than mine!

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Live is but a dream when your in paradise which I am. I'm only 5 years stage four and have had chemo and currently on only Lupron. I'm 70 and can still kick the hell out of most people in my area. To me, stage 4 means the beginning of a long, long journey. Buckle up and have fun. So I can't get an erection anymore. My wife of 45 years says, " thank god, I thought the onslaught would never end".

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To cloc:

To answer your question, the cloc-K starts ticking from the moment of the initial prostate cancer diagnosis. That's what I think, and I rarely ever think.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/03/2019 5:55 PM DST

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I think you are right. I think therefore I am , or I was I think. Time out for me.

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You got me all confused, now I don't know what to think...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/04/2019 11:34 AM DST

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Cornfused? ".........probably.

Go ask Alice, I think she’ll know. She stopped by here yesterday, smoked half an ounce of my best flowers , grabbed a handful of medicine cabinet candy and split. No ......... not took off, I mean there are two of her now. Yikes.

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You're confused now, those two were your Mexican sweethearts, Maria and Juana...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/04/2019 6:03 PM DST

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Sin Luger a Duda amigo. Hasta luego caimanito yayahahaha

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Adios Amigo....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/04/2019 10:11 PM DST

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Visit support groups, find at ustoo.org for examples of Stage 4 who are active many years later

I'm Dx stage 4, inoperable, incurable, mets all over bones, PSA 1300+ climbing a point a day. first MO said all he had was a shot that mostly did little and anyway I was too old (75) should go home for good.

That was a year ago.

I have stage 4 people in my advanced PCa who have been active since 5 - 15yrs ago. That's good to know and we share experiences that help our treatment choices. That it is fairly common to outlast average predictions.

Research and keep trying everything.

2Dee

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I have been stage 4 for 13 years and still very much alive. Also, depending on where the metastases are located, their size and the number it might be possible to treat his cancer so that it goes into a long term remission which could translate to being the equivalent to a cure.

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Thanks joel. Going to take a look at the website. 🙏🙏

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As Jimi Hendrix once said, "I'm the one that has to die when it's time for me to die, so let me live my life, the way I want to. ... .

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Dx'd August 2014, PSA 212, Gleason 9, with about 20 lymph node mets. Not a candidate for surgery but am now as it just in the prostate. Will have it removed in 2 months. Feeling good most days which I know I am very fortunate to say. Threw the kitchen sink at it after I was told to get my affairs in order and got very lucky it has worked to keep me stable for almost 2 years now. Didn't really think I'd make it this long but I am an old dad at 59(kids r 13 and 11) so am trying anything and everything for them. I had given up entirely but got things turned around at least for now. PSA under 3 with testosterone of 750 now. This is a dreadful disease. Even though I am doing well I am pretty fried mentally at times.

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Good luck to you! Keep fighting The kids make it all worth it. 🙏🙏🙏🙏. We are grandparents and want to be around for them

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Stay in the fight. It does get tough sometimes. Miracles happen. Prayers for you 🙏🙏

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You'll be around to be a Grand-Fuzzman77 to both the 13 and 11 year olds' kids.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/04/2019 10:51 PM DST

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I had been having regular screening PSA tests in my late 40s with the last one in September 2017 coming in at 2.0. Had small amount of blood in urine/semen in 2018 that seemed to clear up on it's own. Thought it was a UTI because my PSA was low and PCa is slow to develop, right? Wrong! October 2018 PSA was 200+ with mets everywhere. On a bone scan my entire skeleton was lit up from shoulder to hips, with a few even brighter spots on ribs and SI joint, consistent with where the pain was.

Did I mention the cystoscopy that revealed a bonus cancer in my bladder unrelated to the prostate?

Doing very well 7 months in, bone scan a month ago showed huge improvement, PSA now undetectable, pain seems to be fading. It's been a roller coaster.

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