I have posted at "the Inspired" looking for answers to my puzzles. Some have responded with helpful insight. I am sill wondering why my PSA does not drop to near zero after radical prostatocmy. My original PSA was 28 and MRI found something suspicious. The surgeon I saw booked a date for removal operation without doing biopsy. I trusted him so i did but after 10 weeks, my PSA was still around 7 (another clinic showed 9). No spread to outside the gland except one lymph node was found canceous of the biopsy of the removed prostate. One doctor told me if cancer sneaked outside to lymph node, my PSA will never drop to zero after the RP. I checked with other patents, their PSA all droped to zero except me. Can someone help me understand. I know it cannot help me fight my cancer but I like to find out why.
I am pretty depressed and started thinking my demise. I wonder how many more years do I have with stage 3 prostate cancer. I started Diphereline shot (ADT) and Casodex pill two weeks ago. I don't have radiation as my leakage is bad and I am 80 Any advise? Thank
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Formosan
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I asked my doctor about psma and he said since I have had a rp , it is senseless. He meant it should be done before surgery.Is psma pet different from PET? I can get pet done if it is a different.
I don’t understand why a urologist didn’t immediately refer you to an oncologist to begin with. I also don’t understand why he doesn’t want you to do a PSMA PET. Those aside, My PSA was undetectable shortly after my RP. And then started slowly going up. I did not have salvage radiation and disagree with TA on this but that’s his standard response. Anyway, A PSMA PET detected a met in the pelvic area and I then had EBRT. The EBRT killed that met. I was not on any ADT at anytime after my RP since the only thing ADT does is suppress the cancer and make it hard to find. Another disagreement with TA. PSA still continued to slowly rise. Still no ADT and 3rd PSMA PET later 3 more mets were found. The month before chemo in August 21, I started Lupron and have been on it, and only it, since. Chemo Sept 21-Jan 22. Thankfully I’ve been non detectable after chemo. Your cancer is yours and not necessarily the norm. Get your own treatment plan and hang in there. There is always hope.
TA, do you have a reference for the 3 years of ADT? I have received whole pelvic radiation post prostatectomy and am currently undergoing 2 years ADT with 2 years of Abiraterone per my medical team's plan. I would like to have something to show them in discussing a 3-year ADT plan. Thanks.
Hi, Tall_Allen: my urologist has not refered me to see an oncologist. I will ask for it. My understanding why radation has not been prescribed is due to my urine leakage. I should have a full bladder when receiving radation to make sure my bladder and colon are not damaged. If I go ahead with a flat bladder, the radiation will surely hurt it. That is what I heard. I started Diphereline (Harmonal shot) on April 17 ( a monthly injection). I don't know if it will make immediate effect on my PSA or not. I will do another PSA test on May 5. I wonder if more time needed for the Diphereline to work. I also take Casodex once daily.
I worry a lot about my condition. The surgeon who did the operation said my condition is known as biochemical failure. I wonder what has happened? infected lymph node(s)? bone met ? but my bone scan looks fine. I am really worried of my situation.
most big cancer centers don’t need a referral. You can call the one you want. It may help to have a referral from a doctor but I called and made my own at MD Anderson. No problem. Good luck
I'm sorry I missed your post. I only see what lands in my inbox, so if it isn't a reply to me, I don't see it. I just happened to see my name in your post as I was replying to another post, so it caught my eye.
You are right that keeping a comfortably full bladder during radiation can be challenging. For that reason, 7 months of ADT (diphereline) may give your incontinence time to heal.
Are PSMA PET scans available where you are? If so, you will need to do it before you have more than a month of diphereline.
Will harmonal therapy check the spread of lymph node metatasis? I know ADT cannot cure the prostate cancer but can it slow its spread? I am 80 years old thinking perhaps if I can survive 3 more years, that will my blessing.
I saw my doctor last Thursday and he told me to do a PSA test and testostoren level. I will ask him to refer me to see an oncolgist. I think I should do radiation as a salvage. Well, I feel depressed
Hello, my cancer is different than yours, so I will not go into that side of it. What I would like to say is that I was depressed also until I went to an Medical oncologist (MO) and he laid out a plan. My Urologist did fine with finding my cancer, but he is not an oncologist (cancer Dr) and did not have a plan for me, so I went looking for an MO. T_A's advise is very good. IMHO, I would go looking for an MO not ask the urologist. Just my experience, I am not in the medical field of any kind. We all need to do what we think is best. Hope things go well for you.
If I were you I wouldn’t be getting a referral for anything from that urologist, for he certainly has not been doing you any favors so far. I would lose him and find a medical oncologist on my own, one who specializes in prostate cancer.
I agree with the advice above. Leave that urologist. Connect with a medical oncologist. Get a PSMA PET scan to find out where the remaining cancer is. If it is only in pelvic lymph nodes then get salvage radiation treatment to try and cure it. Don’t worry about the bladder leakage, that can be managed. Be hopeful! Are you in Taiwan (AKA Formosa)?
Formosan.How long after your removal did you get your 1st PSA test? Is your level slowing declining or remaining flat or rising?
I was 59 when I had my prostate removed. I too was stage 3 with a 8.3 level prior to surgery. Not good for one of my age. My surgeon had me tested at 3 month post-surgery. Results were 0.02. And I've been testing every 3 months since. I'm now 2yrs 2mo post surgery with same results of 0.02 level at every 3 month check. Most all consider that undetectable. There are charts based on age what is considered undetectable based on age. Ask your Urologist where you fall in the charts.
TA is right. Your urologist should have ordered a scan before the surgery. Especially because the psa was high. I would switch asap to a good oncologist
Mine never dropped below zero with a lot of the same scenario as you. Once in the lymph nodes, unless it was only in the lymph node they removed it will never get to zero. Just follow the hormone program and it will hopefully progress very slowly.
Okay - I was diagnosed with cancer in July 2018 through a biopsy. Gleason 6 (3+3) & 7 (3+4) & 9 (4+5) - so Gleason is 9 - small perineural invasion found on 1 core. Our of 12 cores - 8 showed cancer. Full body bone scan in Aug 2018. Elected for RP and that was done in February 2019. Full diagnosis - Stage 3a with 15 lymph nodes removed as well as seminal vesicles - only 1 node showed signs of cancer (right pelvic). Estimated 30% of prostate involved - Gleason breakdown: 60% 4, 30% 5, rest variable. Margins uninvolved by carcinoma. PSA prior to biopsy in June 2018: 5.889 - April 2019 post RP: undetectable - in Feb 2020 showed slight rise: .086 - May 2020: .154 - Nov 2020: .316 - Nov 2021: 1.144. PSMA PET scheduled for early Jan 2022, one small spot in same area of lymph node that was removed and positive at RP - Started ADT in April, PSA: 1.124 - Radiation Therapy in May & June 2022. 1 week after end of Radiation, PSA: .043 - 2 weeks later, PSA: .024 - 2 weeks again, PSA: .017 - 10 days later, PSA: .012 - Sept 2022, PSA: undetectable - as of now continued undetectable. Abiraterone plan is 2 years, been 1 year + Lupron 3 years, then a reassessment. One note - I initially started with Orgovyx (Relugolix) and it was ineffective after almost 5 weeks - switched to Firmagon for 1 month to get levels in check prior to radiation and now Lupron (6 month shots).
Due to a grandmother (paternal) who died of ovarian cancer and uncle (paternal) who died with prostate cancer (although at 90) I also had full genetic testing - fully clean of genetic mutation. If you have mutation and connection found it can change treatment guidelines and protocol.
Always ask questions - you definitely need an Oncologist (preferably with Prostate knowledge) - a Radiologist who has experience with Prostate cancer treatment - the Urologist should be in there, but not always directly involved. Mine worked in consult together and keep my Primary in the loop. I have a heart valve condition (since birth) so my Cardiologist is also in the loop. I am also in contact through my local medical center with Roswell Park Cancer Center and have consulted with doctors at NYU Langone.
Having a medical degree helps my conversation, but you have the ability to get the information and understand why, if, when, and how.
Information is key - listening is a priority - questions are essential. You can be predestined but you don't have to be predetermined.
Thank you for all the answering and sharings that help me so much. I am not in US as Mateo guessed, I am in Taiwan where there is a good health care system but medically not as advanced as in USA. I had my first PSA checked three weeks after my surgery and it indcated at 9. 12 weeks later it was 6.8. ( my original was 28 before surgery). It has come down slowly but not as expected to drop to zero as medical experts indicate, normally speaking.
I don't know how soon the hormonal shot will take effect. I will have my PSA checked this Friday again ( my Differeline shot , ADT, was given on April 17 wth Casodex pill once daily). I will book a medical oncologist to see what can be done next, thank you to your advise. IMRT may not be avaialble here. Since I am 80 already ( but still teaching and active though cutting back a lot). I have to weigh the pros and cons if going for basic radiation to the site of prostate that may cause damage to rectum and bladder....as my remained life-time may be numbered.
I was unfornate to have a surgeon who did not explain to me all the side effects and booked me right away when I saw him for a RP as I trusted him. The suregry was done by Davincii arms and paid from my own pocket, quite expensive. I saw another urologist now who is more conservative in treament. My Gleason scare is 5+5 ( I now wonder if that should be checked again if correct), my tumor is small (size 2x1.5cm) and no met except the capsular invasion is present through which perhaps cancerours cells sneaked out(one positive out of ten that were removed at the suregry). I had a size 6x5x6.1 cm prostate, weigh 136 gm, pretty big, like the size of a tennis ball. Perhaps I was not a good candidate for radiation. Maybe I would put on active surveilance because of my age to begin with by a good urologist . I opted for surgery,well, I cannot revert the choice .what is done is done but wondering if I made a good one.
I had a similar experience with RP but was treated with docetaxel and Lupron following the surgery. In my case after chemo was done and stopping Lupron after six months, led to my PSA increasing and then being able to get an Axumin scan (most advanced imaging at that time back in 2017) which showed that I had a bone lesion on my left femur and a small tumor near my bladder. Since the, I had SBRT for the lesion on my leg and I am on Abiraterone, Eligard (same as Lupron) and Prolia (for osteoporosis).
MY PSA has remained less than .05ng/ml (undetectable). My disease remains hormone sensitive. I would check with your oncologist about whether salvage radiation makes sense in your case. Systemic disease requires systemic treatments, odf which abiraterone is one option. AS Tall Allen said, you need to have a medical oncologist who understands how prostate cancer progresses and remains current about cutting edge treatments before deciding what to do next.
To update my current situation and also ask for further advise please.
My ADT started with Diphereline 3.75 mg ( Triptoreline acetate) injectiont on April 17 plus Casodex tablet once a day. My PSA on May 3 drops to 1.356 from 9.223 on April 4. The Testosterone in now 0.68.
My postrate was removed on on Jan 31, 14 weeks ago. I wonder will PSA contine to drop ? I haven't had radiation which I am not sure if doctor will give me becasue of my leakage unable to retain a full bladder that may damage my rectum and bladder if going ahead with it.. Some suggest that I should ask for IMRT which I will ask if available in Taiwan where I live. Doctor did not tell me when I will receive my second injection of ADT which I believe to be monthly.
PSA at 1.356 is still high meaning cancerous cells are there somewhere in my body. One of the lymph nodes that was removed was cancerous. Does that mean cancerous cell goes to the blood stream and will cause more met? I need any help I can get. Thanks
At this point in time your PSA is high because you started ADT at a PSA count extremely high for a man that had just undertaken RP. Under this light, your response to ADT has been as expected and your PSA will get lower in the future. Related to Casodex, I run the numbers for you: I have assumed that you have been taking it during the past 17 days at a dosage of 50mg/day. This alone, must have lowered your PSA to 20% your initial value (9.223). You have been doing better than this, i.e. 1.356/9.223= 14.7% due to the synergy with Triptoreline. Casodex hasn't assumed its final blood concentration, it will take it another 3-4 weeks for it. During this time your PSA will decline further by 0.3 to 0.5 units, out of Casodex alone and probably more synergizing with Triptoreline. So, don't stop taking it, but ask your doctor to provide some protection against gynaekomastia. It is either local breast irradiation or 10 mg of Tamoxifen daily. Finally, find a doctor that will prescribe for you a PSMA PET/CT. The one you currently have claiming that it is "senseless" should be fired ASAP.
Justfor_ , your posting gave me a better understanding of my condition. Yes, as Tall Allen and many other suggested, I should do a PSMA and I have checked around and found out a cancer hopsital in Taipei can do that. I will have to make an appointment with a MO ( my health plan does not cover the cost though). A friend gave me a box of enzalutamide that he has left from his treatment ( he stopd taking it now) but I don't dare to try it. My doctor said it is a second generation ADT to be prescribed when the triptoreline ( I don't know if it is the same as Lupron or other?) fails to yield its effect. Asian people do not suffer PC as much and it is hard for me to find advise here. So Thanks to all who responded to me. I am grateful.
There is evidence that at the begining of taking Enzalutamide the PSMA expression of the cancerous cells is enhanced leading to an improved sensitivity of the PSMA pet scan. This of course precludes that the person isn't already in another long term ADT. The beneficial time window is quoted from 2 weeks to 1.5 month. You have been taking Bicalutamide that may have a similar reaction, but this window is close to expiring. So, schedule the PET scan the sooner you can get to and until this day switch from Bicalutamide to the Enzalutamide you have been offered. After the scan you can revert back to Bicalutamide.
Almost a month elapsed since I posted on this very informative and supportive group-net. To update my condition to those who responded to my question, i am pleased to tell you that my PSA done yesterday was 0.05. I don't really know what does it mean, at least I know it has come down quite a bit from my original reading after the RP at 9.
I got my first injection of Differeline P.R.3.75 ( Triptoreline) plus Casedex (by mouth one tablet daily) on April 17 and the PSA droped to 1.356 on May 3. I got my second injection on on May 15 and PSA dropped to 0.05 on May 30. ( this was done by another a medical oncologist in Taipei where I went to seeking second opinion. The sides effects are obvious espeically hot flash, joint pain and some fatigue.
As suggested by some responders that I should consult a medical oncologist and also cardiologist. I did both. the oncologist told me it serves no purpose now to do PSMA at this point as I sarted ADT already. he siad it should be done before my surgery. My surgeon booked me right away for RP without any further examionation on Jan 31. PSMA is not eaily available here and very exorbitant in Taiwan where I live. Many medical services in USA are not avaialbale here. I am however glad to notice the effect of ADT on my so far. I wonder how long can I stay on this stage and what should I take heed and any food to avoid?Your advise are appreciated.
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