Hello, sorry for all the questions. My 59 year old husband was recently diagnosed and we have so much information coming at us, fast and furious. Yesterday he was offered an opportunity to participate in the GUN trial.
So far the information we have about his cancer: CT scan inadvertently found the tumour at the end of November; PSA 5.9; prostate MRI - no signs of mets; biopsy Gleason 9, intraductal in one sample, perinueral in another, bulging of the capsule, no sign the cancer has left the prostate yet. No symptoms directly related to prostate yet. Lower back pain in the last two months - not sure if it’s connected. Bone scan scheduled Tuesday. PSMA scan will be scheduled within the next week.
Reading the trial details they provided is overwhelming. It’s so hard to know what to do. My husband had decided he wanted surgery and then they presented this trial, which requires delaying surgery by six months to participate in the drug therapy before surgery. That would mean he would be a year out from the initial detection on the CT scan by the time they do the surgery.
If anyone has anyone has any familiarity with this study or the drugs within the study and their ability to delay spread before surgery or prevent recurrence, I would love to hear.
In some ways it’s nice to have options. In other ways it makes it so much harder to know what the right thing to do is!
I appreciate all the help everyone has provided so far. Thanks so much!
Brachy boost therapy= whole pelvic external beam radiation+ brachytherapy boost to the prostate+ 1 year of adt - has the best track record in curing his very high risk prostate cancer.
While the trial sounds interesting, you have to decide if you are willing to take the risk of using an unproven therapy.
The "just cut it out" response is common (I felt that way at first), it is seldom a curative approach. Plus the side effects of getting salvage radiation after a prostatectomy (which he will undoubtedly need) are much worse than getting the radiation done correctly in the first place. At UBC in Vancouver, he should talk to Mira Keyes.
I wanted to thank you for this post. I had seen a few other people mention brachytherapy boost online, but it was this post that prompted me to investigate further. We are meeting with Dr Keyes in a couple of weeks to discuss this option.
There was one here that had six months of ADT before prostatectomy. If he reads your post may provide feedback although an isolated case doesn't make the rule. BUT, (capitalized for emphasis) your first and outmost guidance shall be the most experienced surgeon and routine use of frozen sections. I live in Greece and flew to Hamburg/Germany for this.
I had 6 months of therapy in 2020-2021, a RP in 2021, and no other treatment since. My PSA is checked every 3 months. So far undetectable. At the time, I was 59 years, Gleason 9, no mets, post-operative pathology was clean in lymph nodes.
"... this trial, which requires delaying surgery by six months to participate in the drug therapy before surgery" The systemic therapy will stop the cancer from growing, so it is safe to delay surgery. They plan to make genetic tests and then decide on a personalized systemic therapy based on the results of the genetic tests. The trial is called GUNS (Genomic Umbrella Neoadjuvant Study)
Systemic therapy before surgery can be very effective. I know a patient who got ADT plus Apalutamide before surgery because the bone scan indicated a lesion in the scull. This turned out to be a false finding later, but the patient took the Apalutamide until surgery. After surgery the pathologist could not find any tumor any more. Apalutamide worked very well.
Thank you for responding. Are there studies that show the effectiveness of the systemic therapy (Apalutamide and ADT) used prior to genetic testing, in holding off the cancer? The other concern is, there are no guarantees that the personalized system therapy after genetic testing will be effective in holding off the cancer or reducing recurrence. At least that’s what I understand from reading about the trial.
Upon diagnosis, I was panicked, l and had the just cut it out reaction. Ultimately, I went on a trial (6 month ADT combination trial at NIH) and then had it cut out. I think it was the correct decision in my situation. Cancer remains undetectable as of my blood work last week. Please see my bio.
Apalutamide and ADT are usually used without prior genetic testing and will stop the tumor from growing. ADT alone will do so for about three or more years. This has been proven for decades.
A trial cannot guarantee that the tested treatment will be effective. However, there have been similar trials which were effective. pubmed.ncbi.nlm.nih.gov/335...
hi. I participated in a similar trial at NIH in DC. 5 years ago diagnosed with Gleason 9 but only a small amount (around 5% of the prostate). My trial was 6 months of “intensive” ADT followed by surgery. After surgery, the biopsy of the prostate showed no evidence of disease. The treatment had completely killed the cancer in the prostate (and hopefully any escaped cells). Now 4 years after surgery, no recurrence, no incontinence, some erectile dysfunction. Life is back to normal, though you have to keep checking psa to guard against recurrence.
here is my view. Gleason 9 is serious business. Even if the scans dont show anything, there is a good chance of a few rogue cancer cells getting out of the prostate. For this reason, tall Allen is correct that it’s better to do radiation than just a prostatectomy. Between those two choices, I would have done a brachy boost like he recommends. But I went with the NIH trial because it would provide systemic help to kill any escaped cancer cells AND take care of the motherload.
The trial itself looks reasonable (maybe even better than mine as it tailors the pre-treatment to the genome of the cancer). If the psma scan doesn’t reveal anything and your husband is keen on surgery and you have confidence in the surgeon and your husband is in reasonably good shape (it’s major surgery) then I think this trial is worth considering. It does come with risk, and not everyone in my trial did as well as me. So if you do it and there is recurrence you should be prepared for follow-up radiation. But with Gleason 9 I personally would not recommend just doing a prostatectomy without the extra systemic help offered by the trial. (By the way, I would not worry about the delay. Your doctor is right that the ADT will keep it from growing).
Yup. I had what they call a complete response. They biopsied the removed prostate twice as well as removed lymph nodes just to make sure but no cancer was found. But Didn’t happen with ADT alone. It was with “intensive” ADT (eg ADT+enza+abi). I think the idea is you take all the strong second generation medicines and you use it right at the beginning before the cancer has taken firm hold.
I don't believe it is a matter of choosing the "right" treatment. As TA said, we have published results showing the track record for brachy boost. On the other hand, this seems like a well-designed study. Have you done all you can re research to find something about the use of Erleada/Apalutamide + ADT ?? My very brief searched turned up this summary.........
I do wonder if your hubby's "bulging of the capsule", which I assume is tumor - related, presents a problem for the surgeon?
I don't know, but were I you, I'd probably want the chance to ask the investigators more questions about the trial and how the "bulging of the prostate" might or might not be a problem with surgery? Definitely agrre you should talk to one or more good ROs/brachytherapists...that tumor bulge might also be a serious concern for the RT approach. All this from me as a rank amateur.
it would be great if you could find, or one of the providers could show you, results from a good study on the use of ADT + Apalutamide prior to surgery for high risk cases susch as your hubby's !! Ask the Docs...top guys will probably be helpful when you ask that question. You efinitely needd to discuss the probabilities of salvation radiation and whole pelvic radiation being needed after initial surgery for cases such as your husbands.
Nothing is guaranteed no matter what path your hubby chooses...IMHO , all you can do is gather as much data as possible.....weigh the opinions of at least 2, or more, top Docs.....then proceed and don't look back should results not be as hoped for...lifetime cure with no further PCa treatments!!! This is a big challenge for high risk patients...thus"high risk".
Ask tons of questions...maybe use a recording device at in-person consults. There are no dumb questions...only inadequate answers!!!!!!!!!!!!!!!!!!
BEST to try and submit your questions/meeting agenda before future consults!!! I have only managed to do that once....and a much more satisfactory consult resulted ! it is possible that younger Docs are better at being responsive and respectful of your questions..just speculation on my part.
Finally, don't get too much in front of where you are now.....apparently PSMA PET scans result in something like a 30% chance of changing the treatment advice !!!! So, a deep breath until those results are in. With 4+5, more suspense, unfortunately. I just went thru the wait for such results..fortunately good, but I generally expect the worse, while hoping for the best?
Wishing for good future for your hubby> I'm sure many here would love your updates as you move forward.....you never know when another man will directly benefit from something you post!!!!
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