I was diagnosed in 2008 with psa of 53.4, Gleason 3+4, biopsy of 12 out of 12 cores up to 90%, possible extra capsular extension to the prostate. I underwent radiation therapy and four years of androgen deprivation therapy. My psa was reduced to ‘undetectable', for the last nine years. PSA now rising indicating a biochemical recurrence:
11 August 2017 - psa 1.65
25 August 2017 - psa 2.20
22 Sept 2017 - psa 2.35
16 Jan 2018 - psa 4.94
Does anyone have experience or advice on guidelines for restarting hormone therapy after biochemical recurrence? Success stories? New combinations of therapies?
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MC5565
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Hi, my name is Lynn, caregiver, my husband did well for nine years, PSA 483. Put on casodex and Lupron needles every three months, PSA stayed low for nine years. This past year cancer came back with a vengeance. Tumor blocked kidney tubes to the bladder, kidney failure, nerostophy tubes six months, twelve chemo treatments, six weeks radiation, now just this past week in hospital to have. Suspicious lymph node removed, should get biopsy results this Friday. Nervous!! 😪
Prayers are going out to you big sister! I am giving you a hug! The waiting game is hard, but know that everyone here is on your side. After all, “people like us we have to stick together”! You and Sam are not alone!🙏🙏🙏
Thanks for the hug, and well wishes .I needed that!! Not feeling so well myself today, maybe it's all the stress and didn't get much sleep in the hospital stay. Anxious for the appointment with the oncologist this coming Friday to hear the biopsy report??
How are you feeling dr. Who,? I pray for you too!!
I don't know what I'm doing wrong but I did get a few more new followers that popped up on my email and I can't open the post?? I don't not want to,answer them???
It was good to hear from you as always!!! Hugs back to you!! Lynn
I am doing better than my firstj diagnoses. (Initially they said I had less than five years due to the type of cancer I have and the fact that it spread. Now they said I have an 80% chance of making it for a decade.). That said, the side effects are hard. But, of course, the best side effect is that I am still here. So everything being considered, I am doing great!
Please take care of yourself! You will not do Sam any good if you wear yourself out. I firmly believe that it is harder on the caregivers than on the ones with cancer.
I can not help you with the email thing. But remember you always have the right to not respond to any eMail.
You know this by know, but I love to say it, people like us we have to stick together! We all (and I) have your back!
Great news!!! So happy to hear that!!! If they gave you that kind chance for another ten years, then by the ten year mark , you will have another 100 years with all the new treatments they will have in the next ten years!!!
Take care, know that Sam and myself pray for you toI!! I tell him about all the new friends I have met on this site, and yes we are family that stick together!! Hugs!! Lynn. I'll try and have some Lynn time.?
Thank you for the kind words, It's hard to watch someone you love to have had to go through so much and still is. Sam is strong though and never complained not once. He had a construction company for years, he's now retired at 74 young and was first Dianosed at age 65. I pray everyday for all of my new friends on this site. So many wonderful people here and they know what we are all going through.
Sorry about the recent rise. Have you added Zytiga + Prednisone to your ADT therapy? My PSA has been rising and my oncologist recently added this to my treatment. PSA has responded well and is dropping again - I’ll find out next week if its back to undetectable.
Chemo is another treatment alternative. I had 6-rounds a couple of years ago. It helps significantly, too.
I’m sure others will have ideas for you to consider. Hope this helps. Best of luck with your journey! We are all pulling for you!
James, I'm glad that the zytiga is helping. I'm praying that you continue to do well. I'm approaching my one year anniversary of diagnosis and initial treatment in March. So far so good and I pray that the lupron will continue to do me good.
Sorry that it is coming back. It you go back on hormonal therapy please ask about taking Zytiga with Lupron. They have found “game changing “ positive results for this combination with those just diagnosed with metastatic cancer. It is what I am on. I see no reason that it should not also show the same benefits for you.
Again, sorry that it is coming back. Please know we are all pulling for you. After all, “people like us we have to stick together “!
Good chance after 4 years ADT all hormone sensitive PCa cells killed. A BCR comprised of castrate resistant cells means ADT either won't work or won't work for long.
Hi Mc5, i stopped lupron after 2 years and 6 months later my psa went from .47 to 4. Well started back on lupron and psa stayed .78 range for 5 years till now. Psa jumped from 3.7 to 9.8. I had a good run on ADT. im sure you will get a good while out of ADT. GOOD LUCK!
I'm in this situation with rather more definiteness. After a year on ADT (Lupron and Casodex), I discontinued it. Three successive quarterly PSA values <0.1 lulled me into a false sense of security. Six ,months after that, I had to face the fact that I still had aggressive cancer that was doubling every 60 days.
Yours seems to be doubling every 100 days.
I detested ADT and resisted its resumption as long as I could, but it was clear after a while that I had no better choice.
In the years since then, I've taken occasional "holidays" from hormone deprivation, but always with the same result: My PSA creeps up, doubling every 60 days, when I'm not hormone-suppressed.
Especially if you tolerated your first stint on ADT reasonably well, it would seem clear to me that it's looking like a good option for you now. It's served me well for eight years now. I've moved from Lupron to Zytiga, which is much kinder on my system. If/when Zytiga fails, I'll move on to Xtandi. After that, one of the drugs now in the pipeline will probably then b available.
Really very helpful Paul. Thanks so much for sharing your experience. Although I don’t look forward to restarting ADT I think it’s in my future. A bit curious about my oncologist’s ‘patience’ with the rising numbers. I would have thought a rise to 4.94 was a rather large red flag.
My eleven years of very close experience with the medical-industrial complex in America has taught me that doctor offices and physicians can be incredibly slipshod without giving overt indications that anything's amiss.
These days, most patients have to be proactive. Most doctors are overloaded and take a path of least resistance with patients who seem to be doing well on their maintenance regime.
Worse, lab results are reported in a way that's disconnected from the patient as an individual. Lab results for PSA will compare a man to "normal for the population at large" rather than "normal for a man without a prostate gland".
It becomes our responsibility to speak up about concerns and questions rather than to wait for the physician to catch them. The bottom line is that each of us is (and should be) more actively interested in our own health than the physican can possibly be — a doctor's tends to think in terms of populations more than the particular set of circumstances for particular individual.
Hello Paul C2,reading your post about casodex with lucrin injection,i found it intolerable but after psa now 10.3 or more? i agreed to go back to casodex only,what do you do? The helpful nurse sat me down & read out the side effects,loss of hair,weight gain,fluid retention & lathergy or that fealing of sleeping most the time.Get out & mow the lawn the uroligist said,thats ok for him to say that!! So i will see how it goes & i shouldnt say it but is it worth the battle of having to take this drano that robs us of life itself???
I hear you, and I have been an impassioned advocate of finding a balance between quality of life and length of life. Any physician who sees it as their duty to prolong life by any means will not be a physician whose services I retain.
That said, it's very unwise to take the list of potential side effects deeply to heart without a deep knowledge of how likely they are and how badly they affect you personally, not the cohort of 800 men who reported them in a clinical trial fifteen years ago.
During my first year on leuprorelin (Lupron/Lucrin/Eligard), I had what I would now call an intolerable reaction. My depression was so severe that my psychiatrist recommended electroshock treatment. But this is extremely atypical. (As it happened, my subsequent reactions to it were nowhere near as severe, but they were still significant hits on my quality of life.)
After discontinuing it the first time, I resumed it only with the greatest of reluctance when I realized I was looking down the barrel of a gun. (My oncologist at the time said that he would drop me as a patient if I continued to refuse ADT and allow my PSA to rise.) I found that exercise greatly mitigated the emotional and cognitive effects, and I grimly and doggedly went to the gym three times a week, despite my constant angry boredom with it.
After my second leuprolide holiday, during which my PSA doubled fortyfold, I was fortunate to have a new oncologist who believed me when I said it wasn't altogether a clear-cut choice between resuming Lupron, dying of cancer, or choosing to exit by a means of my choosing.
He pulled strings to get me on abiraterone(Zytiga) instead of Lupron, and I remain on Zytiga still.
As for bicalutamide(Casodex): It's much more easily tolerated, but there are some indications that it may hasten the resistance of the cancer to a large class of drugs. (Prostate cancer often eventually mutates to the point where it makes its own fuel, DHT. Casodex can accelerate that process. Many oncologists think that PCa with very rogue Gleason-5 cells, possibly even Gleason-4, should be subject to an upper limit on the total number of months of Casodex use.)
Thank you Paul C2, beign new to this i have never understood why casodex first up but now i do,it is just where they start & i have been complaining about the Lucrin,lupron injection. Electric shock treatment? That is depression at its worse & you have encouraged me to go to the gym now so thank you again & i will mention Zytiga next visit to oncoligist & uroligist.Quality of life is what it is all about!!
I had BCR much earlier and had scans to locate the PCa then had focal radiation the first time to all pelvic lymph nodes and the second time to femur. I also went back on ADT3 . So far it’s worked.
Hi, I'm not so good on the computer etc, so forgive me, given an iPad as a gift and trying to teach myself. I'm 73 years old and not do good with all this technology. When you say you had radiation to the lymph nodes in the pelvic area were any cancerous, my husband just had a suspicious lymph node removed this past Friday and we did not get the report back as of yet?? Just wondering if my husband will maybe get some targeted radiation??
When my psa increased to 1.2 after stopping ADT when I had SRT, I got an MRI which found two suspicious iliac lymph nodes. Since we couldn’t be sure that there were microscopic mets in the other nodes I had all pelvic lymph nodes radiated with a total of 75 grays over 50 sessions by Dr Dattoli in Sarasota. When I had my first treatment, RP , I had ten lymph nodes dissected and all were benign.
After lymph nodes were treated I stayed on ADT3 for 13 months. Then Psa rose to 2.3 and I had an axumin scan which found one small met in femur which I treated with SBRT and went back on ADT3 and also xgeva.
The point is that I used both ADT and radiation to treat mets because my mets were few (oligometastatic) and treatable focally.
If scans had found mets all over the place I could not have treated them with radiation. Just systemic treatment.
Hi Bob, I'm not to educated with all this even after nine years, my husband is completely confused, Atleast I know a little more than him.maybe he's better off, in the beginning he still wanted to know how the cancer got from his prostrate to hos arm and formed a tumor in his arm that almost broke the bone before he finally went to the dr. With that being said, Sam now just had a 1.3cm LN removed. We have to wait ten days for test results . Bob I did get understand were any of your lymph nodes cancerous. Sam's oncologist mentioned that depending on the biopsy results that Sam may have targeted radiation?
He does have two other two other lymph nodes, one is 1.2cm and the other is 1cm. The surgeon took out the larger lymph node
To clarify , I had ten lymph nodes removed during radical prostatectomy and none were cancerous. Then I had salvage radiation to the prostate bed when Psa went to .3. After I stopped ADT Psa went to 1.3 and I had a full MRI scan with contrast which located two “suspicious “ iliac lymph nodes. That means they were likely cancerous. Recognizing that there are many pelvic lymph nodes and PCa could easily travel thru the lymphodic system we decided to radiate all of them . Your husband could do the same if he’s never had radiation there before. But there are much better scans via CT pet available which can ascertain the extent of his recurrence in order to better target his treatment. As far as PCa traveling to his arm, that’s unusual as it normally travels to adjacent areas of the pelvis first. But PCa travels through the blood stream and lymphotic system so it can end up anywhere.
Thanks Bob for taking the time to explain. Even though it has been nine years.for Sam, started at age 65 he is now74. Many bumps in the road. We are not very well versed as I mentioned. Sam has a metal late in his left arm,from his shoulder to his elbo. The tumor was in the bone. Went nine years after the operation that saved his arm. He was on casodex, and a hormone needle every three months. Cancer came back this past year with a vengeance, tumor grew up from his prostrate that blocked his kidney tubes, bags etc after chemo radiation etc, they just found these lymph nodes. Surgeon took put the largest of the three1.3cm they left a1cm and a 1.2 cm?? I guess they are pla n g n radiating the other two?? Have to,wait for the biopsy report to staged the cancer??
Best wishes to you Bob and thanks again for getting back to me.
Gleason 4/4 with positive margins. RALP (Robotic Assisted Laproscopic Prostatectomy) in 2008, followed by IMRT (Radiation) and 1 year on Lupron . Cancer recurred 3 years later in 2011. No visible mets to date.
I went on Androgen Deprivaton Therapy - ADT4 (Lupron (3.75 mg/mo), Casodex, Avodart, Dostinex) in 2011. PSA < .006
Switched from Casodex to Nilutamide 2 years later when PSA started elevating. PSA 1.87
PSA dropped back <.006 within 4 months. Testosterone was 0.
I continued that regimen but added Metformin in 2015..
Provenge in 2014. I had an apherisis catheter (port) for the 3 Provenge procedures.
Stopped Lupron Oct 2016, but continue all other medications in my regimen.
I had my prostate removed in Jan 2012. My first post surgery PSA was 0.19 which is above the target of <0.1. My Urologist / Oncologist (he is both) put me on Lupron. I dropped to <0.01. He suggest a vacation and we talked. He convinced me to try it.
I had a second Medical Onc. He had been treating me for chronic anemia. I went in to get a checkup for that. He asked what was new, I told him I had prostate cancer and had had the prostate removed robotically. He looked at my pathology report, and started shaking his head, then said "I really hate to see pathology reports like this." That really shook me up. But at least I had 2 sets of eyes on my case.
About 4 or 6 months into the vacation, I had a PSA of 2.3 or so. I wasn't happy but could live with that. Then the next test showed 10.8 or something and the Med Onc went nuts when he saw it. He ordered scans, called Uro Onc (I think they argued a bit). The scans showed 4 lymph nodes (they were also on the original scans I had) that were indicative of metastases. I had an appointment a week or so later with my Uro Onc who put me on Telstar which I am still on. And my PSA is still <0.1 My new team has also put me on Xtandi. More side effects, put ok so far.
So, Watch your doubling time. I would call 100 days pretty aggressive. I would seriously question my Onc about it. Waiting longer might allow more mets. I would also request a good set of bone and soft tissue scans (PET and CT.) IMHO they should put you back on ADT. If they can figure out where the mets are, salvage radiation might be called for. Treatments have change a LOT from when I started down the road. But basically it is still "hit it hard, hit it often."
I wish you luck with whatever you and your team decide. Educate yourself the best you can. And remember, just like boats on the Mississippi have a pilot to help navigate the river, the Captain is still in charge. Your team of Drs are the pilots, and YOU are the Captain. You make the final decisions.
PSA 4 after surgery in 2006 PSA gradually rose to 22 when Zolodex injection dropped PSA to 0.8. Eighteen months later PSA on the rise again and at 44 back on Zolodex which dropped PSA to 2.4 in 9 months. Then PSA started to rise again. So 10 years after prostatectectomy at age 69 my pca was regarded as castrate resistant. Scans revealed too many bone mets for stereotactic radiation. But this could be an option to ask about. So continued with Zolodex plus cosadex for 5 months, with some impact on PSA ie down to 4 after being up to 10 but on the rise again. Andronadon replaced cosadex. Two pills a day at first. Side effects we loss of taste and interest in alcohol and anxiety increased with insomnia and depression. PSA down to 4 but then rose. Stopped pills continued with Zolodex plus mood enhancing pill. Anxiety etc went but PSA up to 50. ( no symptoms) but scans revealed more mets although those in lymph nodes no longer apparent.
At 70 started Chemo. Taxatere infusion every 3 weeks. After 5 infusions PSA down to 20 then plateaued. 2 more infusion followed. Chemo stopped for 2 months an in November last year with PSA up to 53 commenced XTANDI. No side effects yet PSA down to 13 after 4 month. And hair is back and every says I am looking great. And I feel fantastic.
My name is Bill robotic surgery 2007. My psa has been in check for 11 years. now on the rise 1.81. I had this scan done it is called Axumin pet scan . It is a serum that they put in you and it ONLY picks up any prostrate cancer that was let behind. My scan showed a small lesion on my pelvic bone that lit up with the test. i am now having a pelvic area MRI to see if anything has spread. The doctors feel that radiation to this lesion will bring down the psa and eradicate the cancer.
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