Not What We Were Hoping For

Hello,

It’s been a year since my husband’s nerve sparing prostatectomy at Yale. His three month PSA’s have been <0.04, but all that changed today. His latest,which is one year out,is 0.06. I count that as at least a doubling time of less than three months, and I am terrified! He was stage 3b (Gleason 9) with adverse features such as perineural invasion and cribriform. We are meeting with his urology oncologist on Tuesday. He did have a three month neoadjuvant Lupron due to CoVid delaying his surgery. I would appreciate any input and any suggested questions for the doctor. Thanks for the help and advice. Too scared to sleep!

Hi Max, please do sleep. Sleepless nights have absolutely no effect on your husband’s PCa, but they have a profound effect on your health and ability to be strong in assisting him. Take excellent care of yourself, please.

To expand on Steve’s point, you likely need more data points to be confirmation of a recurrance and determine doubling time. The latest PSA is also probably too low to trigger any scans to look for the PCa that may have evaded the surgeon’s knife and the scans that were done a year ago.

The PCa dx was very high risk (PSA over 20, T3b, G 4 and 5 scores, percentage of positive cores 81%) and indicates, according to the Memorial Sloan Kettering Cancer Center nomograms, that surgery alone would have a very low probability of cure. I ran the numbers and probability of progression free at 5 years is only 2% and probability of organ confined disease is only 1%. Nomograms of course don’t tell you about his specific disease, but they use large numbers of actual results to provide probabilities to be useful in decision making. You can also run a post-radical surgery nomogram, but you need pathology data including margin and seminal vesicles findings that you didn’t report. You can run the nomograms at www.mskcc.org. John’s Hopkins also provide a service to run nomograms based on their experience. I am hopeful that the surgeon discussed the risk factors before surgery and encouraged assessing other treatment methods well suited for high risk PCa like radiotherapy and ADT to aid in the initial treatment decision.

Now, I would encourage you to be learning about salvage radiation (SRT) and ADT as potential next steps. Nothing more for the surgeon to do so time to move on to the radiation oncologist and potentially the medical oncologist. If the surgery has failed to be curative, you may have a pretty tight window to start SRT for it to be curative. And it will only be so if the PCa is in the radiation field. But you may be too early for any scans to be predictive, thus a bit of a Catch-22. Hence the value of nomograms and large number experience to help in the decision making process.

If the disease is systemic, then ADT and other forms of chemotherapy will be used for the long term management of the disease, which many men are successfull with for years and decades. So please wear the positive attitude hat and look for all the good methods that have been developed and used by many to control the disease. The current treatment geography is vastly different today than when I was diagnosed with high risk disease 13 years ago. Many studies I have seen indicate that SRT is often more effective the closer in time to the surgery, so you may be in a SRT sweet-spot now, a definite positive in my book.

Best wishes and please get some beauty rest!

Hi Steve,

The test was done by Quest Diagnostics but at a different location than we normally use due to scheduling issues. Do you think that would make a difference? We are seeing his doctor on Tuesday, and we will fight for a retest and also for monthly testing even if we have to self lay due to insurance.

Thank you Cyclone, I really needed some positivity and hopefulness this morning. I hope they will not make him wait too long before initiating further treatment. That is my biggest fear of all. I pray you always continue to do as well as you are now.

I think you can go ahead and schedule an appointment with a radiation oncologist and ask the Uro to send over the file. No need for the the uro to say its ok to see an RO. It would make sense to wait to a second test to show that there is a trend before starting RT. The posts by Cyclone and JNF contain much wisdom. Right now, I suggest that you and your husband read about radiation treatment and ADT to get ready for a meeting with and RO, since the more you already know the more productive and useful the meeting with the RO will be. Both of you must go and you should probably be the one taking notes. When I was going through this I found it helped me relax to read and research treatment options; I think it gave me a better sense of control in a chaotic time and may have helped me sleep better. Good luck!!!

Please get confirmation from the team as to the definition of recurrence as it is markedly different between surgery as initial treatment and radiation as the initial treatment. For radiation guys like my self, recurrence is PSA nadir (lowest level after treatment) plus 2.0. For surgery the accepted PSA for recurrence is 0.20. Many docs use a lower threshold than 0.20 for surgery. The reason for the significant difference is that radiation guys still have an intact prostate and should expect it to continue to express PSA normally. For a surgery guy with no prostate, the main expression of PSA is cancer.

Numerous studies indicate much greater SRT success at PSA levels much less than 0.50, according to the NIH. Dana-Farber Cancer Center on their website states it should be performed before PSA gets to 0.25. If you wait on a rise to 2.0 to say cancer is here and we have to treat, you have likely given up a lot of hope for SRT to be successful as it will be very likely the cancer is outside the radiation field by then. G4 and 5 cells can be extremely aggressive and spread quickly, but not be detectable by and current scanning technology.

As to access to the radiation oncologist, the definition of a team would already include a radiation oncologist that has the same access to the patient’s info as any other member. You should be able to get in very quickly. The team has known for more than a year that he is high risk and has a high probability of recurrence so they should be ready for this. If not, let me know and you can come to Atlanta and see my radiation oncologist. His clinic can always get someone in within 10 days.

Maxwell, there's not much I can add to the great responses you have already received. I'd only mention, that I cannot imagine that the Uro would not be willing to refer you to RO, at your request, even if it is not what he believes is the right path right now. If necessary, I would stomp up and down and scream.

If I read your posts correctly, the Uro Inc is the surgeon? If thats correct, then his work is done, and you need to move on.
Best advice you've gotten on this thread, is the hardest to follow.....don't freak out. Keep it under control. Even G9 PCa doesn't spread overnight. Yes, time is important, but there's plenty of time to get hold of the reigns and manage this situation for a very long time, even decades, as was already mentioned.

Did your husband's post-RP pathology report confirm the Gleason 9 seen in his biopsy? Was the final score 4+5 or 5+4? I'm not understanding why standard-of-care adjuvant therapy wasn't discussed at the time of his post-RP report.

After my G10 (5+5) biopsy, when my uro/surgeon and I discussed the surgical option, he made it clear that radiation or radiation+ADT would be needed afterward as part of my primary treatment if the cancer turned out not to be prostate-confined. (Fortunately, it wasn't needed.) Your husband had G9, seminal vesicle invasion (pT3b), and cribriform tissue architecture: was the advisability of adjuvant therapy not discussed when he got his surgery report?

I suggest updating your signature: biopsy findings are essential in the diagnosis phase, but after surgery they can go on the back burner. His post-RP path findings then take the spotlight in a signature, i.e., Gleason score and all adverse findings in addition to his seminal vesicle invasion and (fortunately) negative node involvement. These findings are crucial in post-op therapy decisions.

I have the feeling I'm missing something and don't have the complete picture.

All the best,

Djin

Hi Djin,

They could not score my husband’s final pathology due to neoadjuvant ADT prior to surgery to keep things in place and shrink the prostate. The ADT changed the tissue architecture, so the cells could not be scored. We inquired about adjuvant radiation and ADT but his doctor wanted to monitor psa and said that new studies show it does not have a benefit over early salvage or salvage and wanted him to heal. I have no reason to feel that the doctor’s won’t help us going forward, but I feel like we are being dismissed. The appts have just been a quick in and out. I did send a message ahead of Tuesday’s meeting asking for a repeat psa, then monthly PSA’s and an early consult with a Radiation Oncologist.

Quote F-8= with his numbers the doctor said surgery was the "sweet spot"? and now he considers 2.0 BCR? wow. fire that bum.

The "sweet spot" refers to the timing of the surgery relative to the presurgery ADT.

Post Edited (Stampede) : 9/10/2023 11:25:27 AM (GMT-8)

Remember that we are not doctors. I seem to remember your husband's situation regarding the neo-adjuvant ADT, but I would add fact this to your signature. I would think that in your husbands case, the G9 biopsy grading would remain operative, especially if it has been confirmed by a second opinion.

AFAIK, the results of the three recent studies that were specifically designed to look at the adjuvant vs. early salvage question have shifted thinking toward early salvage for intermediate-risk patients but that the jury was still out for high- and very-high- risk men, because there weren't sufficient numbers of us in the studies.

In any case, when adjuvant therapy is considered but not adopted in favor of monitoring PSA trend, then I would think all it takes to trigger salvage is confirmation that the PSA is rising and that the "official" 0.2 mark is disregarded. We have seen may Forum members with adverse findings opt for very early salvage at a PSA of 0.1, and I've seen webinars with radiation oncologists advocate for even lower trigger values for some cases. These, however, were men with, say, Gleason 8 with one or two adverse findings, sometimes including a positive lymph node, but not G9-10 disease, especially not when coupled with additional adverse findings. Most of the G9 cases I remember were men who were offered, but declined, adjuvant therapy.

Djin

Maxwellcatmom said...
Hi Djin,

I feel absolutely ill that we were not offered the adjuvant radiation. The idea was dismissed by the doctor as soon as I brought it up. If we do not get anywhere at our Tuesday appt, then we will contact MSK immediately.

Other than cost, I can't see the downside of a consultation with another prostate-cancer center of excellence for another opinion. If recommendations agree, you have some peace of mind. If they differ, you can choose the more aggressive or more conservative, but probably making a better-informed decision.

Post Edited (DjinTonic) : 9/10/2023 11:14:26 AM (GMT-8)

Thanks for that JNF. We are very familiar with Atlanta ans Notthside ourselves after living in Suwannee (Gwinnett County) for three years back in 1994 - 1997.