My husband got his PSA back today.....Let me go back to the beginning.
April 2021 RP -Gleason 9
PSA .26 June 2021
July 2021 lupron shot
September 2021 8 weeks of radiation
PSA has remained at 0.01 until august 25, 2022 at 0.08
October 3 2021 went to 0.16
Then today we got results for the October 28 draw and it jumped to 0.30
What can we expect next?? I'm worried and scared. I will take any advice or knowledge of what the next step is. To my understanding, we can't get Pet scan until it reaches 0.5. He is only 18 months out from his RP. Prayers are also always welcome.
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Granica4818
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still a lot of tools at your disposal. Guys on here have lived for many years with more challenging situations. Find the best MO that you can, even if you have to travel to a center of excellence.
Thank you everyone. It’s been such a whirlwind these past 18 months. He is panicking and feeling like the cancer is invading his body more and more everyday. Does a hormone shot stop the progression of the cancer? Will he be cancer free ever? We were told from the beginning he has very aggressive cancer. I just want to make sure we are doing everything we can to control this.
I know this is difficult and I’m sorry. I can totally relate.
My husband has gotten multiple pet scans with low psa…..please speak to a medical oncologist at a larger cancer center. We have never waited to reach psa 2.0. Just last week, he had a pet scan with a 0.36 psa and we found one node which we are taking care of. We’ve found spots on the pet scans with a psa as low as 0.1 ——-every cancer is different.
Try to take it one day at a time and do not listen too much to the “experts” here. Rather, assemble a good team of docs that will know your husband’s cancer. Some here speak with authority about what you should or shouldn’t do without knowing the specifics of your husband’s disease.
We are 5 years in and Mets started 2019, yet my husband has had no evidence of disease for 2 years until now. The docs are confident they can continue to control this with aggressive monitoring. Please note my husband was also off all treatment including hormones for over a year. His quality of life is great and he continues to work full time.
We are realistic as I’m in the medical field and 2 of our kids are doctors. We know this is a very challenging disease and we’ve consulted with centers all over the world (often just by phone to save on travel). John’s Hopkins, MD Anderson, Mayo, and Cleveland Clinic are our primary input docs. The universal takeaway is find a good team of professionals! There is hope!
Thank you so much. I am going to take your advice and go to a larger medical center. I think Cleveland Clinic will be the one. He has never had any scans. and his PSA has gone to 0.3 in eight weeks. So I think it is time we step it up. We go to the oncologist tomorrow .I will keep you posted.
Hi, My husband hasn't ever had any scans since this began. 3 months after the RP the PSA went back up THey gave him a lupron shot and one month later he had 10 weeks of radiation. A scan has never been done. His RP took 10 hours they said there was so much cancer and the tumor was all twisted around everything. I think maybe a scan should have been done before surgery. But we didn't know. I just want to make sure we catch it right away.
And I was under the impression that irradiating freshly operated patients, before letting some min healing time* is irresponsible, to say the least. Set aside that he had an extensive surgery (took 10 hours as we learned)!
(*) ROs that I have talked to set the min healing time to 6 months, _more_conservative_ ones will not irradiate before 9 months.
Thank You My husband did have a CT scan before his radiation treatment but after RP. Its been one year since any treatment and 18 months since diagnosed.
Wrong purpose CT. This CT was not for diagnostic reasons but for the planning of the linac (RT machine). I feel very sorry regarding the medical services you have received thus far. People already advising to seek treatment from a proper cancer institution is the best thing you can do IMO.
I had RP the 23rd of May and scheduled RT early January next, 7.5 months that is (which I finally canceled as my PSA was stable at 0.02 all this time). But, this has to do with the general mentality of the people. In the US BIG and FAST bear a "+" sign. Over here, not that much. Consider what you are making out of poor/old Bicalutamide. In many European countries Bicalutamide monotherapy is the first hormonal step. And it is unimaginably efficient. Check my Bicalutamide maneuvers thread to find out, if you already have not done it.
Go to your kitchen and measure the dimensions of your cooker and I will do the same and compare. I am not implying anything of that sort, I am openly advocating in favour of proportionality (check the word, it can be found even in the constitutions of countries).
My brother is going to a Cleveland Clinic branch for prostate cancer and seems to be doing very well. I went to the main Cleveland Clinic location for a different medical condition years ago when I was living around Cleveland and I was very impressed with their staff and facilities.
Before RP, I think bone scans are routine only if a high-enough PSA is observed. (Can't remember the number, but my PSA was 20 at dx, so triggered the order for scans since mets are probable at 20+.)
Now just imagine if PSMA-PET was routine PRIOR to RP regardless of PSA level. Huge numbers of men who hear "we can cure this!" would instead hear "the horse has left the barn." But $$$ rules.
Actually, that may be right... either a high Gleason or a high PSA can equal "high risk."
I got curious and found this study:
"Patients in the Surveillance, Epidemiology, and End Results (SEER)-Medicare database diagnosed with prostate cancer from 2004 to 2007 were included. In all, 31% and 48% of patients with apparent low- and intermediate-risk prostate cancer underwent a bone scan. Overall, <1% of low- and intermediate-risk patients were found to have metastatic disease. For patients with apparent high-risk disease, only 62% received a bone scan, of whom 14% were found to have metastasis."
Conclusion? Scans were over-used for the lower-risk guys, and under-used for the higher-risk guys. Wonder how much that has changed in the past 15 years.
Has your Oncologist ever ordered a PSMA?I am a Gleason 9 also. Prostatectomy back in May. And my PSA went from 0.026 o 0.04. And I’m going to start Salvage Radiation in a couple weeks. But my RO wanted the PSMA done prior to my simulation. So I was fortunate to get one.
No nothing detected, even in the Prostate bed. So I’m hopeful that my salvage radiation will do the trick. Positive thinking anyway. Though I understand being high risk the Potential is always there. Also starting Lupron this week. And radiation starting in 3 weeks. My journey started around August 2021. PSA 11.5 Gleason 9
Do you know that there is a number of recent studies claiming that ADT is not needed during an early sRT like your case (latest 0.04 PSA)? And yes, a negative PSMA raises your chances for a successful sRT.
I asked my RO that question, why do adt if no cancer detected. His answer was that being high risk G 9 the combination of both was my best defense. He suggested just 4 months of ADT. I did a 4 week lupron injection 2 months before my prostatectomy. Because I had to wait so long to get surgery. My surgeon was highly sought after, but I was willing to wait for him. Yes 0.04
Pre RP (early 2019) I had asked a surgeon the same thing, i.e. ADT before surgery. There was not a time element in my case, but I had read that ADT shrinks the prostate facilitating the procedure. The answer was: "We don't use it as it obfuscates things, prostate size is not an issue at all". As I understand it now he probably meant that the pathology gets skewed.
Plenty of commentary above... I'll add some thoughts.
My experience with my MO has been that once advanced disease is present, that we don't chase PSA any more. It is a doorbell that rings, but doesn't really *show" us anything in regard to what may be the cause of the PSA activity.
Scan, scan, scan... I'm sure there should be a few scans in your future, an MRI, CT, Bone (density) and PSMA Pet scan... Each having its own value. Bottom line is trying to find and detect what might be causing the PSA, especially so after RP and SRT. No PSA history posted prior to your primary treatment, but G9 is another world with Gleason 5 tissue identified... But as noted above, isn't a cause for alarm as PCa today, even with advanced disease, can be treated as a chronic condition more than an acute one. But everyone is different, my cancer isn't your cancer!
Getting to a Major Cancer Center and one rated in Excellence is going to be a good thing to do. Cleveland Clinic is highly rated and a good choice in my opinion. It is there you'll get better access to Oncologist focusing on just PCa, better detection/testing/diagnosis, team approach treatment, access to trials should that be necessary, etc. Try to reserve decisions until all the data is in, otherwise you'll go nuts. Wait for all the cards to be laid on the table before you decide what hand your dealing with... I wouldn't make assumptions as to long course, short course (ADT) or venturing into some heavy duty treatment like a Triplet Therapy until you know what's going on. An accurate diagnosis is what you want, and as accurate as you can obtain.
PSMA scans can be given prior to 0.5ng, is just the threshold by which it's efficacy exceeds others. But all scans have limitations, and the PSMA scans can still only see lesions above 4mm, so there's that too. I believe PSA Doubling Time and Velocity in a recurrence setting is what will establish the urgency for a scan. Not always, but I think this factors in with much weight.
Anyways, get to CC and try to "see" what's going on!
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