How Did You First Become Aware of Pro... - Advanced Prostate...

Advanced Prostate Cancer

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How Did You First Become Aware of Prostate Cancer Bone Mets?

gleason9guy profile image
gleason9guy

For those of you who have been diagnosed with prostate cancer metastasizing to the bones, I'm wondering how you first became aware of the situation. What became evident to you first that ended up being linked to having bone mets?

91 Replies

I had terrible pain in both Femurs, it was my first indication that something was wrong, PET scan showed it got right into the Marrow in the Femurs and it had spread to most of the bones (Hips, Spine, Ribs, Arms and Skull).

gleason9guy profile image
gleason9guy in reply to Zetabow

Many thanks for sharing!

A moderately high PSA of 5.2 led to CT/Bone scans which showed possible mets (2 ribs/iliac) led to prostate biopsy, G8, 11 of 12 sectors positive. Later consult with experts at MDA, and biopsy of iliac confirmed. Never had any symptoms from PCa, only the meds I take for it.

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gleason9guy in reply to 6357axbz

Thank you!

Hatecancer1 profile image
Hatecancer1 in reply to 6357axbz

I thought my husband wrote this! Same PSA and no symptoms . 3.3 years Stage 4 Mets to bones . Wishing you the best .

I had lower back pain and thought it was from a sports injury. I went to my PCP who xrayed my lower back and noticed a bulging disc and ordered PT for me. He also digitally checked my prostate and didn’t find anything. Also, bloodwork didn’t show an issue with PSA. I went through PT and it helped but in the long run my back pain got worse. A couple of years later I went to another PCP and he ordered an MRI and bloodwork that confirmed PC and bone mets. So I think my original back pain may have been from the sports injury but then as time went by the PC became the source of pain. So tricky!

Very interesting. Thank you!

I had a high PSA (82.2) which led to a biopsy that show prostate cancer which led to a CT scan and a Bone Scan and found the bone mets. After the fact my primary care Dr and I realized the pain we had been talking about in my one arm is a bone mets.

gleason9guy profile image
gleason9guy in reply to JD-guy

Thanks!

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Never did and still don't. My original PSA was 850 with three mets. Currently I still have a met on my L5 vertebrate that has two pars fractures. Have never felt a thing.

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gleason9guy in reply to Hidden

Wow. Thank you for the reply! I hope you continue to do well.

I had pain in my pelvic region which did not change with body position changes and was gnawing in nature and surely seemed to be non-mechanical.Could not get relief with ice, heat, lying down

Thanks for the info!

I had what I thought at the time was just muscle pain like a groin pull on my left side. It came and went. Before Dx I even went to physical therapy for it. The bone scan showed the met. It went away after I had simultaneously continued PT and ADT. Don’t really know which caused the pain to disappear. Actually not sure if the pain was due to the met. My MO was skeptical that my PCa was the source of the pain base on the location of the met.

Many thanks!

No initial awareness of any pain or met symptoms. Like others, had a high PSA (20.0) which led to DRE and biopsy showing prostate cancer (3+4). The high PSA alone is what led to CT scan and Bone Scan, which found the bone mets (2 or 3 in spine).

gleason9guy profile image
gleason9guy in reply to noahware

Thanks!

I had a recurring pain in my left hip that responded to treatment by neuromuscular massage therapy. It would feel good for a couple of days and then come back. Therapist recommended getting a hip x-ray. I did and it was suspicious for mets from PCa. Follow up PSA came back at 368. Biopsy showed 12 out of 12 mostly 4+4, with 2 areas 4+5. Bone scan and CT showed mets throughout pelvic region and head of femurs. Strangely enough no lymph node involvement, it went straight to the bone.

I wish you well on your journey, my friend!

I had a bad pain in my right groin area in August 19 which I put down to running and tennis. Physiotherapy did not resolve. In December 19 I had a DVT in my left leg and in the same month was diagnosed with inguinal disruption in my right groin. GP had checked if I had a hernia. In May 20 I had another DVT. This time they checked my PSA, boom 1,311. Bone scans sadly confirmed 8 to 10 mets and in lymph nodes. Too many mets for radiation. On anticoagulant for life now along with SOC.

gleason9guy profile image
gleason9guy in reply to lcfcpolo

Thanks for the reply. I wish you well!

Mentioned numb finger to neurologist who ordered MRI. Radiologist said I have a cervical spine tumor, which is probably a prostate cancer metastasis (but probably not the cause of my no-big-deal numb finger), and I should make an appointment with an oncologist.

I was having annoying pain in a couple of my ribs. Nothing terrible but enough to keep me awake most of the night together with hot flashes and needing to pee every couple of hours :) I tried tramadol and it helped for about three days. Now on oxycodon so I can sleep.

Just had a bone scan and it confirms a lesion in each of the ribs right where the pain was.

I understand that and can relate to it completely. Thanks!

I was ‘dad running’ in inappropriate shoes and felt pain at the top of my left femur afterwards. It slowly got more painful over a 3 month period but some days it was worse than others. Finally rang GP, receptionist asked if it was urgent, said I didn’t know but I had waited 3 months. GP referred me for blood test for PC and the rest is in my bio. Just over 1 year on Firmagon & Xtandi only pain I really get is left femur (think that’s in the site of my operation / nail and I do walk lots) and joint and back pain which is worst at night. Suspect these are SEs and not met symptoms but I don’t really know. Nothing too bad though. Good luck my friend wishing you a long and happy life.

Cheers

Darren

gleason9guy profile image
gleason9guy in reply to PSA680

Good luck!

Terrible night sweats and coughing in my case.

After SRT psa was 0,033 after 2 years later psa started to go up, it reached 0.364 than my RO said get ga68psma -pt, this January I got it and seen 1 bone metas at 4 lateral of costa. Immediately 3 days SBRT than first lupron started. Really I did not feel nothing, no pain. Still I am very suprised that I have bone met with that small psa.

That's interesting. Thanks for the reply!

It took 11 years for psa 7 in 2005 for symptoms to become evident. Then Cat scan showed PCa.

I hope you continue to do well. Good luck!

I've learned we are so different even to what causes us pain.In late Dec 2017 I started to develop severe coughing that lasted for about 6 wks into early Feb 2018.

Starting in Jan I developed severe pain that jumped around my ribs and then every few days it seemed to focus on a very different area.

Knee, shoulder, hip, chest, other knee, other shoulder, left ribs, pelvis, lower back, neck, etc.

For 6mos I went to PCD and talked about EXTREME debilitating pain. Lost 55lbs from 215 in Jan and Feb.

No help.

Sent me to UO and he ordered x-ray, CT, bone scan, full labs finally with PSA etc.

PSA at 1296, ALP at 462, and other high markers along with severe pain and major weight loss.

DX stage4 aPCa with mets throughout skeleton and some lymph nodes. Given 6mos at most.

I didn't believe the PSA number and retested a week later. Sure enough it was wrong. 1303 seven days later or a point a day rise.

Started my only SOC choice casodex then Lupron.

Eventually pain reduced, during 2018 added CBD which helped further.

Journey continues.

My PCP doc failed to diagnose my pain and weight loss. Outcome may have been same even if SOC started earlier since it seems evident pain was growing mets.

2Dee

Muffin2019 profile image
Muffin2019 in reply to 2dee

You are still here, so much for time left, just proves we cannot predict how long we have. Glad you are still with us, keep up the fight and never give in.

gleason9guy profile image
gleason9guy in reply to 2dee

I wish you well. Hang in there. We're all fighters here!

I had my biennial military medical and told the doctor I was having some issues with urination. The DRE found my prostate was enlarged. As I was 55, he thought I should have a PSA test done as a baseline for the future. It came back at 103.0. Diagnosed Gleason 9, mets to lymph nodes, pelvis, spine, and ribs. It was a shock as I had no family history of cancer. Fortunately I still don't have any bone pain.

gleason9guy profile image
gleason9guy in reply to MarkBC

That's good to here. I hope you remain pain free!

Pain, much worse at higher altitudes.

gleason9guy profile image
gleason9guy in reply to dmt1121

Interesting!

spencoid2 profile image
spencoid2 in reply to dmt1121

is that a fact? i live at 3500, is that high enough to increase bone pain? mine is under control with oxy and lots of CBD which i don't know if it works but i am getting myself used to the little bit of THC in it and now can do it during the day as well as at might.

some times you do things without having any idea why? so now i have about 5 pounds of cannabis resin i made a few years ago. i need to make more of the 20 to 1 CBD stuff as i am almost out. i think i have three pounds of left and can probably buy more easily since i live in the Emerald Triangle in CA.

dmt1121 profile image
dmt1121 in reply to spencoid2

I think the altitude has an incremental relationship to the pain. I read about this after a ski trip (didn't ski but loved the views) I went from it was painful (about a level 3) to I couldn't walk 20 ft without excruciating pain. So, I can vouch, based on my own clinical trial that altitude makes a BIG difference!

Right after biopsy in August 2018, the urologist had a bone scan done, which showed three mets. Later I had CT scans, MRIs and PET scans that confirmed. So in my case, it was soon after diagnosis.

gleason9guy profile image
gleason9guy in reply to dhccpa

Thanks!

RP last July, psa has since remained at 0.03, Severe shoulder pain since last October, MRI In Jan showed wear & tear only. Physio & acupuncture have not eased pain. Waiting on apt for further investigations. Hoping it’s not Mets.

doc1947g profile image
doc1947g in reply to dublin1717

Hi, Vickie.I am very sat about these pains, but as you you I have been living with Severed & Chronic Lumbalgy.

🙉🙊🙈

That's pretty close to where I'm at in this process. I'm certainly aware of my pain levels (and tolerance) and just waiting to see how many things get ruled out before they proceed further.

Pain in my hips and lower back.

Thanks!

Hurt my lower back bending over to put socks on. Xray showed nothing then saw a chiropractor for a year before seeing GP for other reasons. DRE and PSA made him send me to urologist. Only found it in bone scan.

GOOD LUCK!

I had excruciating pain in my right upper thigh. I would be up for days on end. My Doctor sent me for MRI and bone scans which showed multiple bone mets, then biopsies that showed stage 4 and mets in almost all areas I received my first Lupron Shorts and the pain subsided in a few days it still bothers me being it's one of the larger liesons but now tolerable. My treatments now are Zytiga, Eligard injection every six months, Xgeva for bone mets, Provenge two years ago. I was taken off of Xgeva due to jaw bone problems from it that required multiple oral surgeries. Best of luck.

gleason9guy profile image
gleason9guy in reply to leo2634

Thank you. You as well!

I was having terrible pain in my ribs and pelvis area. Urologist thought it was kidney stones but that didn’t work , DO didn’t know so sent me to pain center. Went to a old DO for the pain ,he did a full blood panel for me and found very high Alkaline levels 😢. Scans with contrast found Mets all over. Forgot !! Swollen lymph node in my groin that they thought was a strain 😡😡😡😡

My blood scans are pretty good right now, despite the pain. But that's pretty much what they are doing...just watching the blood panels.

A nagging back pain while driving on a business trip, something about it didn’t seem right. Plus I just didn’t feel right. Add to that an elevated PSA that I was aware of, but previous two-12 core biopsies were negative. The pain lead me to get a 3rd biopsy and whamo! Stage 4 PCa.

Ed

gleason9guy profile image
gleason9guy in reply to EdBar

Wow! It's like being sucker punched.

Mine started out as lower back pain that I thought was a result of my military career. I went to the chiropractor and thought things were ok. I ended up having a CT for something else and found the Mets in multiple locations.

gleason9guy profile image
gleason9guy in reply to BigTex3

I hope you continue to do well. Good luck!

Bone scan....subsequent mri to verify...to qualify for titan trial....3mets to4/5 lumbar ,pubic ramus....would have rather qualified fore pole position f1 at the ring.....b.w

Thanks!

Lower back pain sent me to the doctor. CT scan showed a compression fracture of my L4 vertebra, and lesser damage at S1.

I'm assuming that the fraction just happened, and you hadn't suffered a fall or similar injury.

Yeah, no falls or anything like that. Just a backache that kept getting worse. I figured I had strained something. The friends and family I mentioned it to all said, "Your mattress must be old and worn out, get a new one." Stretching didn't help. Heating pad didn't help. Ibuprofen worked for a while, but when it got to where I was taking ibuprofen every four hours around the clock, I finally made an appointment to see a doctor.

I had some back pain for a month or so before diagnosis, but I thought it was just, well, back pain. Biopsy of prostate (already scheduled and unrelated to back pain) showed PCa, and a bone scan was then done. Urologist was shocked that the scan indicated bone mets, as my PSA was not particularly high at 5.4 and had been stable for some time. A bone biopsy confirmed the metastatic diagnosis.

It seems like this disease is quite insidious.

After biopsy a cat and bone scan were done this the results were the indicator.

Thanks!

MRI, Bone Scan and CT, had zero symptoms, but PSA was elevated.

Hang in there and good luck!

started this journey in fall of 2017, after urinary issues, my GP did a DRE, thought it was an infection. PSA in January of 156.5, saw urologist for biopsy, came back Gleason score of 9, CT scan showed only 3 Mets, 1 on rib and 2 on spine. Went to oncologist, did lupron with chemo 6 rounds with psa at .6. Psa rose very slowly , scan showed Mets healed. PSA in December of 2020 was 15.5, scan showed some increase in activity in L5, started arbitrone and as of April 2021 PSA was .7, hopeing over the next few months it drops to undetectable and stays there for a few years. Never had any bone pain and still do not, work part time, walk 8 to 12 miles a week, I think it is not bad for turning 70 this year. I have many years ahead of me in my opinion, just keep up the fight, eat a balanced diet with less red meat and pray alot. Also on xgeva once a month for a year then every 3 months, supposed to help prevent future Mets I think that is what he indicated.

Hang in there. Thanks for the reply!

When Lupron failed, I had an MRI found a couple of mets and started on Zytiga. That was 10 months ago. Now Zytiga has failed. Thinking of doing another MRI before next step. But no pain.

I hope you continue to be pain free!

pcfred profile image
pcfred in reply to Frigataflyer

I'm on Xofiga for my multiple bone mets (3 of 6 treatments). Seem to be working good.

Wow! What this thread shows is that Every Case Really Is Different. I had no symptoms when diagnosed Stage 4, PSA 450. Mets throughout my spine, so not a candidate for radiation. 18 months later, been through chemo and now on ADT, still no symptoms and doing daily swims, yoga, or weights in hopes of keeping it that way and maintain bone strength.

Back to what may be underlying your original question--if you didn't have pain as a warning symptom, don't sit around waiting for something to happen, and no matter what, ignore the generalized mortality charts. Live your life. As screenwriter William Goldman (Butch Cassidy & the Sundance Kid; The Princess Bride, and a bunch more) put it in his book Adventures In The Screen Trade, "Nobody Knows Anything."

Just My Opinion; I Could Be Wrong...🙂

gleason9guy profile image
gleason9guy in reply to Coastal3

Always move forward with nothing less than positivity!

I have a chance MRI on my lumbar spine for a ruptured disc and the MRI revealed a bone met to the L5 vertebrae.

gleason9guy profile image
gleason9guy in reply to tallguy2

Good thing you got the MRI!

I was pounding alieve liked tick taks for pain that I thought was just from being fat until it got severe. That's when I found out I had stage 4 prostate cancer. Pain has gone up and down since then but never so severe that I couldn't stand for any lengthy period of time.

That's exactly what I don't need. Extra weight...and gravity. A deadly combination.

Has anyone tried Xofiga injections? It has helped stop the pain of bone mets for me.

gleason9guy profile image
gleason9guy in reply to pcfred

I'll look into it.

FinalBossMatt profile image
FinalBossMatt in reply to pcfred

My doc has put me on it. It supposed to increase the porousness (if that's a word) or bones. I've never really felt different but I understand how it works.

Thanks!

True story: Fractured my neck on a roller coaster ride with my daughter.. C2. I did have a nagging neck ache for a few weeks prior.

gleason9guy profile image
gleason9guy in reply to SeosamhM

Hopefully you had a good attorney on retainer.

SeosamhM profile image
SeosamhM in reply to gleason9guy

I would’ve sued myself for idiocy! :) The neck pain prior to a roller coaster ride should’ve cued me in to NOT engage in middle-age tomfoolery. I thought I had bad whiplash and even continued the trip with my daughter by using a soft neck collar (20 years an EMT and I cleared myself...even convinced my former paramedic wife, thank you very much). Besides the obvious pain, my only neuro deficit was a LOT of peeing.

I got home and coincidentally had my annual physical...luckily. My PCP didn’t buy my tough guy routine, I regained sanity, and one x-ray, one digital prostate exam, and one PSA test later I was off for a biopsy and my new forever hobby of oncology. Turns out my C2 tumor ate away enough of the vertebral body that there was not a path for a through and through fracture - again, lucky. So I live and walk still...all thanks to the Excalibur roller coaster in Saco, Maine!

Had a stiff neck for a while. Couldn't rotate my head left easily to check for traffic when out on my motorcycle. Thought my helmet was too heavy and got a lighter helmet. Didn't help. Around that time my low PSA doubled to around 9. Bone scan revealed mets at the top of the spine/base of my skull. First I tried Zytiga, which did not work for me. Then 10 treatments of docetaxel which did. Sold the motorcycle. With great regret.

PC 5 times since 2011, last 3 metastatic since 2018, no. 4 in tailbone successfully treated with radiation. Current no. 5 in general area of hips and lower back. On Lupron since 2018, XTandy for last year. Throughout, no pain, no symptoms. I only know the cancer’s back when the psa creeps up again, and it doesn’t have to be by much. I’m now having blood work every 6 weeks, and another PET scan next week. I’m 76, Gleason 9.

I am also a Gleason 9 guy. My single bone met (now treated with SBRT) was diagnosed by a FDG PET-CT after a PSMA PET-CT showed know mets inspite increasing PSA, 2 years after RPE and RT.

I thought my herniated disk had increased in pain. But upon testing it was met on femur. - immediate orchiectomy, psa dropped to non detectable, zero mets 3&1/2 years.

Awesome!

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