I am 53. Had RP in October (2020). Pathology was G9 pT3bN1M0 with ECE, SVI and positive margin. Had 39 IMRT salvage radiation sessions. Just had my 3rd three month Lupron injection and take the 4 horse pills daily. Right now my PSA and testosterone are negligible as well. Looking forward to the ADT to be done —and when the time comes I too will hold my breath and pray for a long remission or CURE.
NOW...fast forward to today (September 2024). I have been PSA negligable for three years until March 2024 when the beast reared its head and result at MSK lab showed that PSA was now .05 (not the usual less than .05). Then in the June three month later test it stayed the same (.05). Now, here I am today --and from June until now (3 months) I have quickly jumped to .08. At this point I know I am not "cured" as I always hoped would be the case (and as Tall Allen always gave me hope for).
My general question to you is "what's next?" I detested being on ADT and would rather have 5 surgeries and 10 more rounds of radiaiton than to deal with those side effects again. Plus I'm "only" 56 now and was hoping to have a long road ahead of me-- grandkids, retirement, etc. But I am starting to doubt that with this recent quick jump and knowing I have Gleason 9. The "doubling time" concept and stats have me very worried.
Is there a way forward without ADT? Unfortunatley I know the answer but don't want to lose hope...and if not, will I ever have an ADT vacation or are those days behind me?
I really appreicate the knowlege I have gained from this site over the years and recognize that even with my circumstances there are others on here for whom this disease has been much worse to than it has been to me-- and I have thought about that often over the last few years when I considered myself "lucky."
John
Written by
Harrisonhoyle
To view profiles and participate in discussions please or .
Harrison, your are not alone. I didn't get past my first PSA test after my RP back in July 2019. I did 28 months of ADT + zytiga. After a year of rising PSA, i restarted Eligard, then switched to mono xtandi and just 2 weeks ago added Orgovyx back in. Keep the faith.
I know its probably not a big difference but my PSA did go from a .05 in June to .08 today (3 months)-- My understanding from RO was that if I get up to .5 (since I'm post RP and post salvage radiation) I may have to start "treatment" again. My surgeon was a little more agressive and said if it gets to .2 we should start "treatment" options.
1 year ago, the large group that my MO is with stopped reporting PSA numbers below 0.10. When I asked why, he explained that movements between .03 to .05 or .08 wouldn't change the course of treatments that I was getting - so why report it and cause stress and concern among their patients. Even if PSA got above 0.10, they would still wait until it got higher. At that time, they would be able to order a PSMA Pet scan to find out what was happening and then determine the appropriate course or action.
I like it, I would rather live my life in ignorance if there is nothing I can do to change it for a while.
You have been served all the BS about "cure" and being aggressive, etc. to be submitted to irradiation that here is considered as a walk in the park. I doubt that you would had taken the sRT gamble if you knew that a 5 year remission (dubbed "cure") has only 20% - 30% tops incidence for a GS 9. Now your main concern should be the late toxicities of irradiation, aka radiation colitis, cystitis, urinary problems etc. Coming back to your original query, I would advise you to have a look at what I have been doing with my GS 9 pT3b during the last 3 years month by month. Search for the thread: "An engineer's Bicalutamide maneuvers".
Don’t believe everything you’re told. We are G8/9. Seven years since dx and 5 years since 39 EBRT. We believe the cancer has “stalled” due to giving up as many carcinogens as possible. We make our own luck. Never give up.. never give in. See the World before you leave it. Etc.etc. etc.💜
My situation and the timing are very similar to yours, but I did not do radiation or any other treatment after my RP in June 2021. My PSA just reached 0.1 in August 2024, and it’s my move. Until recently, I never heard before that localized G9 only has a 20% to 30% success rate of cure with radiation. So, I am considering trying the Bicalutamide protocol that Justfor_ has had success with first. The usual side effects of this are far less than other treatments.
The source of the quoted numbers comes from a presentation by an Australian RO. I am away from home and can't give you the link to the YouTube video. Also, if you try Bicalutamide start first with Avodart. Bicalutamide by inhibiting T consumption by AR hungry cells rises total T to 50% or more. This has as a consequence that DHT and estrogens increase proportionally. Avodart, sort of, equalises the DHT rise. Finally, Tamoxifen blocks the formation of gynaecomastia that will result due to the increased estrogen. Good luck and keep us posted.
Those words my urologist said back in January 2014 when reviewing the biopsy results with my wife and I, "Kevin, that's a pretty aggressive cancer...!
He was not wrong,the clinical data then and since says it is.
But, we are now at the 10+ year point, I'm 68-1/2, done a lot of living. Both daughters have graduated from high school and colleges, twice when counting advanced degrees. I've taken a lot of vacations, celebrated anniversaries, birthdays, holidays....
In those 10+ years, only three have actively been on treatment. While on treatment, the only constraints have been when doing radiation, no travelling and the 4th round of taxotere hit hard in terms of the fatigue. Other than that, lived my life. While on ADT I've done the Bataan Memorial March with my sister in White Sands, NM, the Garmin Unbound 50, a gravel bike ride in the Flint Hills of Kansas near Emporia with my daughter and sister, went skiing with friends in Colorado...Most days I would go to the gym, ride my bike, play basketball or pickleball, walk, yard work, wife and I would go to concerts..
I have been aggressive in my approach, the only time not was when doing SRT when I argued for the addition of six months ADT and to extend the radiation to the PLNs, my radiologist and urologist said there was not long term data to support it, I acquiesced, I was right, they were wrong.
Still, that was my defining moment, never again, we would share in decision making and I held the 51% majority. That served me well in my decision to do triple therapy when the Director of Urology at a NCCN center near me said he would treat me with ADT monotherapy and dismissed the triplet therapy approach, completely ignoring data coming out of CTs. His was the attitude of we treat with this, when that fails, we do this, then finally that and well, then you die, The concept of combining treatments and bringing them forward in the disease to overwhelm the heterogeneity of the cells which make up our PCa was enigma to him.
That triplet therapy brought 4-1/2 years off treatment.
While I have been aggressive, I also have balanced that with having decision criteria for when do to do treatment, with what, for how long and when to come off and actively monitor.
My urologist switched from a standard PSA to USPSA and the initial labs did not go well. But, as you can see from my clinical history, there was quite the ups and down in my PSA until 2022 when it began its continuous rise resulting in the decision criteria being met to image then informed by that, decide on treatment.
Interesting, when deciding on that treatment my radiologist and I were ok with SBRT and six months Orgovyx. My oncologist's initial position was 24 months Orgovyx with Xtandi. He was not wrong, but, neither was I. We settled on SBRT plus 12 months Orgovyx, no Xtandi unless PSA did not drop to undetectable within first 90 days, then decide at 12 months whether to continue on Orgovyx or not...
At the nine month consult he asked me to consider doing 18 months...My radiologist said at the tumor review boards the oncologists were all over the map on the length of ADT and why. She supported my decision to come off at 12 months.
Was I right, I don't know. Initial labs at 90 days say yes, we'll see in October. If I was, well, back on treatment and the oncologist and I will have the same discussion, this time I may do the 24 months ADT+ARI.
So, I agree with others, reacting to each and every USPSA test may be overreaching. Rather, have decision criteria, discussion with your medical team. Mine are three or or consecutive increases spaced three months apart, PSA between .5-1 which provides a reasonable probability of the imaging locating the recurrence and then decide - what treatment, how long, clinical data for stopping and resuming off treatment and active monitoring.
Keep in mind that at the PSA levels I experienced in the recent rise, I would be "undetectable" under the standard single decimal tests. Yet, the USPSA did allow us to confirm activity and image, strike early.
So, yes, your recent labs may indicate activity, question is, do you need to do anything, yet? That is the conundrum we all face in a treatment decision, too late, too soon....? As others have asked, would waiting change the outcome in either your treatment decision or the trajectory of your PCa. Likely not and you may then enjoy the time off treatment until the clinical data says "it's time,,,!" You likely will face a decision on treatment in the future, those with advanced PCA, especially GS9, GG5, invariably do, That treatment likely is ADT +ARI, may include SBRT. There are ongoing CTs such as the PATCH - thelancet.com/journals/lanc.... which may provide other options, same with the EMBARK - nejm.org/doi/full/10.1056/N... where only ARI may be a choice.
I am not your medical team, but, were it me, with the clinical data you present, I would just be scheduling my next labs and consults for three months away and then live my life.
I believe the success rate of Gleason 9 over 5 years is a lot better than 20-30%.
I'm G9 and received RT. My oncologist used a system called Predict Prostate. Taking my age of 72, at 10 years after treatment, overall survival is 60%. If deaths from prostate cancer were excluded, 75% would survive 10 years (i.e. to age 83).
Predict Prostate is quite an old system. It is based on real life data taken between 2000 and 2010. RT has improved hugely since then.
In ASTRO 2022: Optimal duration of ADT with Definitive Radiotherapy for Prostate Cancer:
there is the remarkable statement "In the NCCN high risk group patients, the rates of 10-year DM [Distant Mets}were only 1.1% with 18 months of ADT" . NCCN high risk includes myself at Gleason 9.
I feel very fortunate that I selected RT over the RP which was first offered. I see so many people who have had recurrence after RP, I really believe that RT + ADT should be the SOC with RP only in exceptional cases.
Quoted 20% to 30% is for 5 years remission after RP, BCR and sRT. You challenge the numbers by manipulating statistical data from overall survival and PCa specific death rates after primary RT!!!.This isn't apples and oranges, it is oranges and fruit salads.
G9 plus a disease recurrence after three years doesn't necessarily mean you are destined for continuous or even ongoing intermittent ADT. I'm not, however, suggesting that ADT has no treatment role for you. You might get lucky and find ADT is only needed for a relatively short time.
To me, what's more relevant than G9 in your disease history is that so far the cancer is apparently limited in extent to pT3b. That makes the chance for a "functional cure" notably better than for stage pT4.
My situation is similar to yours in many ways, but every cancer and every patient is different, so keep that in mind. I was diagnosed in 2008; radical RP in 2009 (G9, pT3b); post-surgery my PSA remained high at 1.08 ng/dL. I proceeded with ADT + IMRT to the prostate bed and local lymph nodes, which kept PSA undetectable for 2.5 years, after which I experienced PSADT of approx 3 months (aggressive cancer behavior). But use of a non-NCCN drug (Leukine) luckily worked in my situation. This amounts to a crude form of immunotherapy that turns out to be helpful for a portion of PCa patients with low disease burden (relatively low PSAs). Today my PSA is undetectable and my testosterone is quite high. See my profile for details.
I'm not so much recommending that you try Leukine--I just believe that if you work with medical oncologists that think outside of the box you have a better chance of discovering an optimally effective treatment. That's what I've seen for myself and for a number of other PCa patients.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Need to make some decisions about an ADT holiday or adding a secondary agent. Please advise!
Curious what you think?
1 month Post-Doublet Therapy (Firmagon & Nubeqa) PSA down from 335 to 32 and Testosterone down to 13
