Having been on Prostap (ADT) now for almost 3 months (I get my second shot next week), I had another blood test today. Testosterone was down from 9.8 in July to 0.88 today. Frustratingly, my PSA from today's test won't be revealed until Nov 7th but my bone mets feel more pronounced now than 3 months ago. I wouldn't call it pain, but certainly, they twinge and seem worse.
Is it normal/expected that bone mets could feel worse even though T (and hopefully PSA) have reduced somewhat? Is it the tumour shrinking or some other likely explanation?
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Benkaymel
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Why do you have to wait a month for PSA results.. I have Patient Portal with all my labs anywhere I get them... Results often back to me in 2 hrs. They are your labs and you have the right to see them...
I don't know but this is the UK NHS 🙄. I also have the Patient Portal and some of the results from yesterday's blood test came through within hours including T, EPI, Creatine, Potassium, etc. but for others such as PSA, Calcium, ALP, etc. it says, "Organisation will show value on 07 November 2022".
When I had my first PSA test, it was available the next day so I'll be calling them today to find out why the delay.
Most of the results are good or at least, OK, but the RBC (Red Blood Cell Count?) has dropped below range to 4.2 (range is 4.5 to 5.5). I assume this is connected to bone marrow problems due to the bone mets? Would iron or B12 supplements help?
Sept 2022: Therefore, I'll start on the SOC treatment of Xtandi shortly and then radiotherapy to the prostate and large bone mets for local control.
Did you or are you also taking xtandi and have the radiotherapy coming up soon?
It is a bit of crock to wait till Nov. 7th for results of PSA. I think the results will be good though and seems as long as medical team has put you on Xtandi and has radiotherapy planned at this early stage of treatment your on the right track. For Xtandi and Prostap to stop keeping the PC at bay this early in your treatment would be unusual.
Can you press the Dr./hospital for your PSA results sooner?
I had my second consultation with the CO last Friday and since I now know I don't qualify for the Amplitude CT, he's starting me on Xtandi - I'm waiting for the hospital pharmacy to contact me to collect it (the NHS is not the fastest moving organisation!)
Radiotherapy is not planned in yet - he says that the Xtandi should shrink the tumours so will wait and see before considering RT.
I'll call the Dr today about getting the PSA result.
I have the same problem about 4 week censorship of PSA results and have challenged this but with no success. It was only introduced in January this year. Its a bit ironic that this happens through the Patient Knows Best system.
All I do is ask my GP for my result and receive them the next day.
Thanks, yes, I too use Patient Knows Best but obviously we don't! Have you been given a reason for the 4-week censorship? I'll ask my GP surgery for the result.
I have pointed out to the relevant authorities that the policy of deferred results is against the principles of Patient Knows Best and that is not applied consistently as other major indicators eg EGFR and Potassium score are not censored. However, the answers I received were not very enlightening
What I guess happened was that the hospital received a lot of urgent, anxious contacts from some patients who found their results very worrying and decided without consulting patients, as far as I know, to restrict access until the professionals could deal with the information. I gather that the system may cover tumour markers generally. It was recently applied to a kidney ultrasound test that I had.
Not being suspicious or cynical, I wonder whether there is entrenched opposition by some medics to the idea of letting patients have unfiltered results and this may be a factor in the decision.
If you think it is appropriate a complaint might not change anything by itself but if enough patients complain maybe something might be done.
Pure BS. How can you be informed for meeting if you can't get result. Some times results are scary and they want to discus in person. I went over PSMA scan results with my MO today from last Tuesdays scan. Report was bad enough, but actual scan was much worse. Wide spread avid osseous metastatic disease. No Kidding. It showed ribs, pelvic bone, both femurs, sacrum and T1 vert. Looks like BAT not working for me.. several new mets. Hope all of your scans/results are much better. Life Is Good, new mets not so much.
Had my first PSMA scan about a month ago. It looked like I never had any treatment these past 3 years. Same skull to shins mets and lymph nodes as at diagnosis plus new ones. Very sensitive scan. I would like to have a standard scan to compare to past standard scans.
Suggested that to my MO and he said with PSA skyrocketing and new mets showing they were unneeded. We are trying to get OK for Darolutamide next. He is hoping I can get 3-4 months out of it, then Abi and back to Enzo when It fails... By then I may be at top of Pluvicto waiting list and hope for a good run with it... Anyhow. I look to have another year if the treatments work for their median time span. Then if nothing new I can start my trip to check out. Wish me luck. So far Life Is Good and I am still enjoying it ( not so much the pain--please pass the Ibuprofen and cyclobenzaprine.)
Treatments working for median time span is my name. No luck being an exception so far. Going back on Dox chemo next week last time was 3 years ago. Chemo lasted a year and Zytiga lasted a year.
Anyway I am not too far behind you. I do hope you get some good results coming up. And yes ibuprofen by the truckload here even though amazingly I don't have much pain.
I'm on my way to my pain dr later today. If I can get relief from my old injuries and the pain they give me, maybe the new pains will be more manageable... Today is a bad pain day/ Both hips, both knees, C5/T1 joint has slipped a little but my chiropractor won't touch it acct. new met on T1. I'm back to the ibuprofen/cyclobenzaprine combo and acetaminophen at 4 hrs. It really does help.
Hope your pain has reduced Shooter and the meds are helping. I had a bad night last night - searing pain in my groin wouldn't ease even after taking paracetamol and trying every different position of lying. Eventually, I tried strapping the thigh tightly and that helped enough to let me get some sleep. Then I had to get up for another pee! ☹️
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