Just wondering what others' PSA was at time of diagnosis. Please share the PSA level that triggered your referral/biopsy and your PSA level at time metastasis was discovered, if you don't mind.
My hubby's:
2/13 2.7
7/14 3.3
9/15 5.3
11/16 13.4 (biopsy)
2/17 17 (bone and node mets found on scans)
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golfwifemom
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My PSA was at 7 when I was sent to uroligist, it went to 9 a few weeks later. I was told that I did have a PSA in 2013 and it was 3.5, I wish I was told then , I might have done some research and maybe try to bring it down but, didn't know.
My psa 33 in Jan 2016 .Gleeson 8.treatment Orchiectomy, chemotherapy docetaxel completed in june2016 . Honvan tablets twice a day prescribed to continue .psa in October 2017 0.05.
Regular CBC every 3 month .WBC count is high now,it shows 15000 getting worried
Please do not put that much faith in PSA levels. There are a lot of men here with cancer but where their PSA at time of cancer detection was less than 4.0. Mine was measured at 4.7 in December 2015. Two weeks later (and after two digital exams) it was slightly over 11. It turned out to be advanced Ductal Prostate Cancer which is very rare and often does not always produce PSA.
My husband should have been diagnosed with a PSA of 4.something -- because he was using an oral hair growth supplement (spacing the name - it's common but by prescription) that falsifies PSA results and the suggestion is to double it.
When diagnosed 9 months later, his psa was 20 (really around 40). Age 52.
As someone noted, PSA is a really individual thing. A friend works at a cancer center and has seen it in the 1000s, but my husband (and others here) never got very high. It's important to establish your own baselines and scope. What's significant (unfortunately) is the metastasis. That changes everything and the PSA is one marker of many -- including the regular scans (bone, CT, MRI) to track what's happening.
My husband's PSA was low but his cancer was *raging* for the first 6-9 months. We threw everything at it (Taxotere (early-CHAARTED protocol), Casodex, Lupron, Xgeva, RA223, Provenge/Immunotherapy, and a spot weld on the spine just for good measure! After about 18 months or so, it finally calmed down -- cumulative effect is our theory. He then was on Xtandi (after reaching castration resistant in about 9 months) for two years and did great on it. Starting to fail now but slowly. His PSA just crossed the 2.0 mark again, but it seems that scans are much more telling. PSA is an indicator (hey, it's going up, look inside) not really a definitive thing once you're into it at this level.
Sorry to hear you are dealing with this. The first months are crazy, scary, mystifying. I hadn't found this site yet but wish I had. This is a great support system and can provide at least some ideas about what to ask.
Best practical recommendation. Go to appointments together whenever possible and keep a regular notebook that records everything. We go in with a set of questions each time to keep focused and I scribble while my husband talks to the doc, and at the end, I note anything we missed (that we came in with) and ask questions that I have. It's a really great record, and it's definitely come in handy to figure out "when did we do that" kind of stuff.
Also -- take care of you too. An occasional massage. A walk. Whatever makes you feel good. This can also be brutal on the caregiver, who sometimes thinks her or his issues are so secondary. They're not.
Good advice! We go to all appointments together except for blood draws. I usually come bearing a long list of questions or letter—as you can see from today’s post. 🤭. Mrs. S
Great advice for all caregivers and their men here. I do all the research, and take my trusty binder full of notes and research to every appointment. My cousin is an oncology nurse and she's good at reminding me to make time for me. We do need that.
I had a PSA around 6.4 (don't remember the decimal part). I had gone for a panel of blood tests for an annual physical exam at my HMO. The list of tests I was scheduled to get did not include a PSA test. However when I went up to the counter at the lab, one of the lab assistants (a woman wearing a typical Muslim dress and head scarf) saw the printed list of tests I was to get and I saw her check the PSA box. I asked her why did you check that (only doctors were supposed to determine what tests a patient gets) and she said, "At your age you should have your PSA tested." This was in 2003 and I was 57. Sure enough, the PSA was high enough that a biopsy was scheduled. It turned out I was T2b with Gleason 4+3 and extra prostatic extensions. It was still local and susceptible to definitive treatment - which appears to have been successful.
A couple of years later I went to the lab for another test and asked about the black woman in the Muslim dress. I wanted to thank her, but no one in the lab remembered any such person. I felt like the Lone Ranger had ridden into town, saved my life, and ridden out again without anyone knowing who it was.
16.9 psa. 9 or 10 Gleason. Cancer outside the gland and up the neck of the bladder. Tailbone was filled with cancer. Stage IV. Radical surgery, 7 weeks radiation, Lupron, Casodex, Zometa infusions monthly for 1 year. Diagnosed in Oct. 2004. Still here and doing well. Still on Lupron every 6 months. No recurrence.
My Uro doc let me walk in 2013 with a PSA of 5.1 with urinary symptoms. A year later with a different Uro doc it had jumped to 17.2, Biopsy showed GL-9 , ultra sound showed ece. Luckily no mets (yet). Stupid me for not getting the jump on things and gaining a year.
This is my fear when I "consult" with radiation oncos... they all SWEAR I'll be healed... but, it is possible that micro-metastases are established, and will take off post-radiation. When I express my concern, they TRY to reassure me that the bone scan will reveal any mets... this is less than honest, and the drawbacks of radiation make me doubt it can cure me -
My hausband had several bone test scans, ct scan, F-18 scan, that showed nothing. While this was good news we knew cancer was somewhere due to rising PSA
Until a Axumin pet/scan finally showed the 2 lymph nodes. I totally understand your fear. Pray for the best.
BTW - In 2002 I had an RP - no seminal vesicle involvement, no lymph node involvement, negative margins. My PSA was below 0.04 for 12 years - no, 13, when it slowly rose to .06, .08, .12, .15, .18... it has floated between .12 and .18 for the few years... my surgeon from May says, it's benign - the urologist here in Boise I HAD said it was probably mets... so, do something? No - just PSA's and DRE's... I only joined this board a while back, and - while it is good info, and great support - many of the stories I read scare me, and involved criminal negligence, it seems.
My husband had positive margins but the Oncologist decided to keep an eye on the psa. Since his psa was undetectable for almost 3 years we didn't feel the need to do anything else. I will always be wondering if it would've made a difference if he did radiation right after we found out he had positive margins. Insted I feel that we gave the cancer time to spread. The radio oncologist didn't seem to be in a rush to put him on hormone treatment.
Now that he's taking Zytiga and Firmagon, he has hot flashes. I pray that's all the side effects he will get, however he just stared treatment. My husband is 58 and has been dealing with this for 7 years. Overall he has been doing "normal" exercises every day, hasn't miss UNR football games, travel etc.
UNR? Nevada-Reno? Our long-time nemesis? Boise is crummy, very crummy now - not much hope for the season for us. Glad he's doing that.
So, with positive margins, my understanding is, salvage radiation is almost given. I know taking hormone treatment before/during radiation is now standard, sine the hormone treatment "weakens" the cancer cells, making them susceptible to dying via radiation. But, everything in medicine is based on an algorithm, and some have the right one, some don't...
Sorry to hear this unfortunate tale. I hope he keeps doing well.
spinosa, sir whoever uses that word is exagerating. We know there’s no cure for APC .that does not discount the effectiveness of Rt..Idid it , in my first round with APC..Am I cured of APC , hell no, I’ll jump upon whatever whenever it raises its ugly head again .Hope you can find a Doc that you can trust..
A physician's assistant, who knew nothing about Agent Orange exposure during the Vietnam War ignored my husband's climb from 0 to 2 and when it climbed to 27. she diagnosed him with prostatitis...and offered an antibiotic. six weeks later, when his PSA climbed higher, to 55, she offered him another antibiotic. at the end of the second round of antibiotic treatment, his PSA had risen to 78...at which time they sent him to a urologist who recommended his biopsy....12 years ago, in july 2005. his bone scan showed a big hot spot in his ribs. he was age 55.
A P.A also ignored my symptoms until I ended up in hospital kidney failure .It was Friday.I was telling her I don’t think I m going to make it to a biopsy in 3more weeks after being under care for a month already. Pain in my kidnies ...She said”what you are feeling is not urological” “ go see your GP on Monday , this is not our doing” Got test , drove an hour home.Another hour I received a call telling me I’m in kidney failure , go to the hospital. Good thing I got that call .Emerged , thank god , A week later with tubes , Foley ,dx,#4 Gleason 4+ 4 non op. Malpractice on my mind, the dr , saved my life with tubes showed us her cell phone stating that it’s not in their uro requirements to check kidnies..; ie they were ready to lawyer up , we did no wrong. My uro part of AZ Urological institute didn’t even visit me in ICU although his office is attached to the hospital. Later the PA told me we have nowchanged our policy to get a PSA faster in a case like me that my prostate was giagantic and virtually exploded pc tumors throughout my pelvis...
When I turned 50 my GP at the time checked and came back 3.4 stated in the normal range thought nothing of it, six years later had anew Doc check ,it was 4.5 . Had a BX done scored it as a G6 through my own stupidity I waited two years before having another BX. PSA had climbed to 14 , this time it was upped to a G8 4+4 only two cores of 12 . Had RP done expensive ece + SV no nodes. 36 round of igart and two years zoladex . I am five years out ,so far so good last PSA was <0.01 hang in good things things can happen.
I joined the Stampede trial 4 weeks after diagnosis, which was 6 years ago, so I’ve been taking this for 5 years and 11 months, and doing rather well, if I say so myself.
As the Stampede trial is randomised, I was really lucky. There are only 1900 men in the UK on this arm of the trial. As my Oncologist recently told me “ You bought a lottery ticket and won first prize!”
As soon as it’s out of patent in a couple of years time, I suspect it will become the gold standard for advanced PCa treatment.
That said, it doesn’t suit everyone, it stresses your liver, although I’ve had no problems apart from severe muscle wastage.
I’m stable, my Mets have shrunk, or at least are no longer an issue. I’m pain free, but, and it’s a big but, I’ve got severe muscle wastage and consequently disabled. It’s much better than being dead though🙂
That is way too young! Terribly sorry about the pain. You have our prayerful support and, I know, the positive thoughts of this community. As least you don’t have 1500 as my guy did. Leswell’s wife since 1962
My psa was 5.7 in May 2016, 5.3 in June 2016 but digital check showed hardening of prostate, then biopsy at end of June 2016 was 9 on Gleason and 4 bone mets with bone scan soon after. So then Eligard started on July 14th 2016, each 6 months ( have now had 3 injections) followed by radiation and then chemo with docetaxel. Psa now 0.01 and testosterone where it should be. 2 bone mets can not be seen now and the other 2 reduced in size. So psa was not very high originally for me but it jumped from 1.8 when I had a TURP in June 2015, so the jump is an important indicator.
Pre diagnosis I had a mixed bag of bladder, bowel and prostate symptoms for 10 days. Went to Doc, had DRE (about 3x oversize) and bloods. 10 days later first result 167 PSA, 2 nil bladder nor bowel probs. Various scans then biopsy, all 12 cores substantial adenocarcinoma. 2 weeks later 200 PSA and start ADT. Too far gone to treat 40 bone Mets so immediate metastatic diagnosis.
My PSA went from 4 to 6 and they started an annual biopsy(s). The 2nd year they found cancer, and I had my prostrate removed. They then followed up with 26 treatments of external radiation 6 months later to kill any cancer remaining in the bed.
From 2000 to 2004, my annual PSA test had been steadily declining from around 4 to 2.4. In 2005, it was 15. My doc thought it might be an fluke and had me come in for another draw. That one came in at 22.5 only a month later. Biopsy and diagnosis followed--Gleason 9 aggressive with seminal vesicle involvement.
Obviously, I'm a proponent of routine PSA testing, unlike the current medical consensus. If my jump in PSA hadn't been detected at my annual physical, it would probably have been too late for effective treatment once symptoms appeared.
My hubby's was 363.8 in March. Spread to bones. 6 chemo treatments. Dropped to 10.9 after 5 weeks then started going back up. Was 19.43 on 8/2. Started Xtandi 8/25. Last week was back up to 31.7 and yesterday Oncologist told us there was basically nothing more he could do except keep on the Xtandi, get his Procrit shot weekly, Xgevia shot monthly and Zoladex shot quarterly. 🙁
I was diagnosed 20 years ago at age 56 at a time when PSA tests were not routinely recommended if you were getting a rectal exam. My first one was done when the rectal was positive, 11.5 and my Gleason was 6.
Started having back pain and leg pain January 2016. Got PSA in Feb 2016, was 358. Uro called and wanted me to have another test as he did not believe such a high number - retake 3 weeks later and it is 655. Biopsy 4/11/2016, GL 9 and 10, with escape evident. CT and Bone scan ordered. Casodex immediately, bone scan showed extensive mets to spine and nodes...6 rounds chemo from 7/18/2016 to 10/31/2016 saw nadir at 1.59. Now back up to 330..on Zytiga and pred + Zometa (13 weeks) and Lupron (13 weeks).
PSA was 2.7. My primary care physician refused to include a PSA test in my lab work; he did discover a tumor when he performed the DRE. I got referred to a urologist who wanted to know what my PSA level was. My PSA was well within the normal range so the DRE was crucial in discovering my condition.
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Curious as to Velocity? 2.7 is not within a safe zone, if you had been averaging 1.0.
GD
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Previous year it was 2.9. For undiagnosed men I've heard PSA value of 4 as an alert threshold. I don't think it's ever been down near 1 in more than ten years.
My first PSA was 12.1 at 49 years old during a routine physical exam. G9, +SVI, +ECE, N0x, M0x. RP in 10/13 PSA was undetectable for 6 mos after RP then slowly rose for 2.5 years. 6/16 psa was 0.18 recieved SRT. PSA .021 on 7/17. PSA .026 on 10/17. Looks like it is slowly on the rise...never too certain with these ultrasensitive tests. We will see as time goes on.
Also -had radical prostatectomy Dec 2014, June PSA rising did Lupron & Casodex, August began daily radiation for 30 days. PSA rising, cancer spread to seminal vesicles. Continued with firmagon & Xgeva monthly. More scans, determined Cancer (counts good) in liver & metastasis. Began tatoxtere Nov 2016, after 3 months PSA jumped high, raced to UCSF, same results--go back to chemo. PSA finally going down, finished 10 rounds of texotere Sept 29, 2017. Now white blood counts down, began /Figrastin injections. Doing pet & bone scans this week. Lots of pain, all over lately. Very fatigued.
* correction-did chemo for 3 months, PSA skyrocketed, pain in groin so bad did 30 days of radiation-then back to chemo. Also did genetic testing-nothing found.
My PSA was 4.5 at diagnosis in 2005. I have to thank my very through internist for urging me to get a biopsy--just in case. Well, I did have a Gleason 4+3 and 2tb. Treatment was brachy and spot radiation. All well until 2014 when PSA began to rise to 2.2. Treated with cryo but PSA up again in 2016. I let it rise but had scans and MRI. Started ADT/Zytiga when PSA was 19--a jump from 6 in six months. Had two mets on the pelvis. My new motto: I am living with cancer now, not waiting to die from it. As Dr. Who noted, we all seem to have different responses, different genes and different reactions to treatments. Be strong! Stay long!
5/2016 - PSA 698, tumor on spine at T9 causing spinal cord compression - paralyzed from waist down (paralysis happened overnight after several weeks of tingling in legs).
eligard (failed), casodex (failed), taxetere, zytiga (failed) nadir 0.29, current psa 46 and doubling monthly
Mine was 35 in Fall of 2013 at age 55. Prostate removal 12/15. I had not gone for my yearly physical in several years and discovered bone mets after removal.
PSA 40, Gleason 9, metastatic to lymph glands around kidneys at diagnosis in 2009
Been thru ADT variations, Provenge, Xtandi, Zytiga, clinical trial and Docetaxel. Xtandi did the best. After 10 cycles of chemo PSA went from 21.39 to 16.12 with new side effects - rashes on feet and groin and chemo brain fog.
My first PSA result was 7.5. I was actually having a routine blòod test for coeliac disease and my GP added a PSA test because I was 52. Had no symptons of PCa and despite prostatectomy, IMRT, and ADT I still have never had symtons. Just a PSA that was doubling every month.
Please don't let a high PSA discourage you. My PSA was 901 after the biopsy and I was diagnosed with tubular prostate cancer. After a first line treatment of Lucrin and a second line treatment of Artemether (Coartem), the black spot on the pelvis is gone. I now receive external beam radiation and have good hopes that the cancer will be gone or at least in remission. After 18 months the PSA was 0.23.
PSA was about 15 when biopsy found cancer in 2008. Had radiation. Stable for 2 years. Then PSA creeping back up so went on LUPRON, CASODEX, XTANDI, ZYTIGA. Mets to lymph nodes in early 2017. Met to bone in August 2017 with PSA at 60. Now doing PROVENGE over 5 week period, with PSA at 120. Probably chemo next...if that don't work, LUTETIUM 177 is in clinical trials. And if that don't work, I will soon know if flying saucers were real...Ron in CT
I was 68 yrs. young when diagnosed with PC. PSA level was 5.5. Two of the 12 sample cores came back positive, and my Gleason Score was 6. My Urologist(s) went over the pathology report and explained the location and how this would affect me. I initially told them I want this cancer taken out and said I wanted the robotic surgery. After a second opinion, I came back to my urologists and said I would follow their advice/recommendation of active surveillance/controlled monitoring. I then did additional reading and decided to change my eating habits and start taking additional supplements. Since my last exam, my psa has dropped down to 4,2, and my urologist says whatever your doing, keep doing it. I have spoken to a few men who have been on this active surveillance for 9 years or more....and are living a normal active life like me....Mentally and physically I feel great-everything seems fine and my sex life has never been better.......
I was 68 yrs. young when diagnosed with PC. PSA level was 5.5. Two of the 12 sample cores came back positive, and my Gleason Score was 6. My Urologist(s) went over the pathology report and explained the location and how this would affect me. I initially told them I want this cancer taken out and said I wanted the robotic surgery. After a second opinion, I came back to my urologists and said I would follow their advice/recommendation of active surveillance/controlled monitoring. I then did additional reading and decided to change my eating habits and start taking additional supplements. Since my last exam, my PSA has dropped down to 4.2, and my urologist says whatever your doing, keep doing it. I have spoken to or have been in touch with a few men who have been on this active surveillance for 9 years or more....and are living a normal active life like me....Mentally and physically I feel great-everything seems fine and my sex life has never been better.......
I'm 55. Went to doc for weak urine stream. PSA came back at 35. DRE revealed enlarged prostate, but no lumps of bumps. Biopsy scheduled on1/11/17. Does this high number indicate an aggressive cancer and how likely is it to have spread?
PSA 20.44 in July 2017, GS 4+3, CT scan and MRI negative for mets, laparoscopic prostatectomy 10/31/17, confirmed 4+3, EPE+, LN-, SV-, first post-surgery psa 0.10, either mets or residual benign or still falling, retest scheduled 1/26/18.
My psa was 325 they automaticly assume it has spread if it is that high even though it can’t be seen with cat scan, bone scan. I have been taking lupron for four years psa .2
My brothers went for physical due to shoulder pain and PSA came back 2800. Ended up stage 4 Mets to all bones except his legs and Gleason score 4+4 he is 61 yo. Thanks to this forum we are educating ourselves. He starts chemo next week, had lupron and started on experimental drug.
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