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Posted 7/14/2020 5:38 PM (GMT 0)
Hi All,

I'm here for my dad who is 71 years young. He recently had a biopsy that came back positive with 7 cores positive [3 on the right side that were 6's (3+3's), and then 3 on the left side that were 7's (3+4) and then 1 on the top of the prostate that was a 9 (4+5)].

His latest PSA was a 6.3 (during the biopsy). The doctors can not feel a nodule during a DRE. His MRI came back negative for any signs of cancer near or on the prostate which was really odd, but good in regards to spread (I guess?). Unfortunately, his left lymph node was inflamed slightly.

I was really pushing him towards MaxRT (HDR brachytherapy + IMRT + ADT) due to his Gleason 9, but that may be out of the picture now due to the lymph node involvement and we may have to settle for longer term ADT + IMRT. We're going to get a biopsy done on the lymph node to rule out or confirm the cancer.

We also met a surgeon today who said he could do the RP while removing the lymph nodes, and then if the pathology comes back and when his continence returns (~3 months), we can do radiation via IMRT. He said he can not guarantee he won't have ED, but my dad doesn't care about that at his age. However, for the urinary continence rates, he said surgery + radiation usually result in about 10% urinary incontinence rates. I thought that number was quite low. He also said something that surprised me, 25% chance of cure with surgery alone and 65% change with surgery + radiation.

I'm not sure if anyone has any advice for my dad's case as I am truly confused by it all. Any words of encouragement or advice would be helpful. He's looking to me to be his advocate.

Thanks in advance.

Post Edited (NiRo) : 7/14/2020 11:42:04 AM (GMT-6)

Posted 7/14/2020 5:53 PM (GMT 0)
Your idea of ADT plus RT would be my preference. I'm not sure that looking for a "cure" is the right mindset, though it could happen. Knocking back the cancer and then managing it seems practical, given your Dad's age.

I wouldn't trust the numbers the surgeon is throwing out there.

Good luck!
Posted 7/14/2020 6:29 PM (GMT 0)
NiRo - Not the best diagnosis but treatable. I think I would shy away from surgery since you know that additional treatment will be probably be required due to the lymph node observation and the fact that there appears to be enough cancer of higher grade to make it improbable that one treatment will get everything (thus the doctor saying 25% vs. 65% chance of successful remission with surgery alone, i.e. "cure".

IMRT can target the lymph nodes as well so there is no reason to discount the Triple Play option as a good option. Surgery is not the easiest procedure to recover from and is not usually recommended for those over 70 depending on their general health, etc. Incontinence is a risk with all prostate treatment procedures but surgery probably has the most risk of it and requires the most accomplished surgeons to minimize that risk.

I would definitely have your Dad meet with the radiation oncology people and get their ideas on treatment schemes. IMRT including lymph nodes + ADT is the obvious recommendation but the higher risk cases seem to do better with the Triple Play options. There are various combinations of SBRT, HDRbrachy, LDRbrachy, IMRT, and ADT so he should meet with RO's that cover the various schemes.

Good luck with your Dad.
Posted 7/14/2020 8:17 PM (GMT 0)
Thank you for the replies so far! My dad is in remarkably good health - no diabetes, cholesterol, etc. He takes no prescription medications as of today. Outside of a hernia back in 1990, that was surgically repaired, he's had no health issues until now.

In regards to the triple play (MaxRT), this is my first choice hands down. It has a good chance of cure plus it's hitting the prostate cancer hard and early.

That being said, the RO basically said if there is lymph node involvement (even though they will zap the lymph nodes regardless during IMRT), he would not recommend the brachy therapy and just would be on a longer term ADT + IMRT. I guess it's a risk/benefit thing at that point.

Because of this (and we still have to get the lymph node biopsy done), I am wondering if something like MaxRP (surgery + IMRT + hormone therapy) is worth the risks (gleason 9, age, etc). It's a real struggle. I want him around for another 10-15 years and picking the right treatment now is probably going to make that outcome more reachable.
Posted 7/14/2020 9:31 PM (GMT 0)
Good to hear your Dad is great condition other than this issue. It makes everything easier in the treatment phase if one is in decent shape when you start.

This is leading to the next observation, your Dad getting a second opinion on the biopsy pathology. He should want to be sure that the classifications are correct before making final decisions. Many of us have used Johns Hopkins, Dr. Epstein's group, for the last word on the pathology. It is common for there to be some disagreement in PCa pathology classification so worth checking out. Never know if the G9 gets lowered or some of the others get increased which can affect his decision making process.

Your Dad may want to check out some other RO's that have different expertise than the RO he has seen. There are experts in all areas so he can try to seek out some other opinions to consider.

I had surgery followed by radiation and it takes a while to fully recover from all this messing around with your abdomen so I would not be a big fan of MaxRP if a Triple Play combination could solve the problem. Tough choices for your Dad.
Posted 7/14/2020 10:00 PM (GMT 0)
Hi Mumbo,

How far apart was your RP from the RT? Can you talk about the recovery and what it entailed and how long it took?

Thanks!

Post Edited (NiRo) : 7/14/2020 4:54:08 PM (GMT-6)

Posted 7/14/2020 10:31 PM (GMT 0)
Hi, a G9 triple play guy here who has been treated quite successfully. Since it's worked so well for me, I tend to be an advocate for that treatment. Since finishing ADT in 2014 I have a low PSA and no significant SEs.

That said, I think you're right to be considering surgery with the lymph node issue. But I think you'd want confirmation first re the biopsy. FWIW, a G9 guy here had a positive lymph node that was leaning toward the Triple Play that had surgery instead (and SRT, ADT and even chemo) so they could remove the lymph node and he is doing quite well the last I heard. Working against the surgery angle is your dad's age. If you do end up on the Triple Play, you'd want to make sure the IMRT targets the lymph nodes, which it typically does for G9 guys.

Good luck...I can tell you're doing a great job of researching for your dad!
Posted 7/15/2020 2:56 AM (GMT 0)
NiRo - My surgery was in November and ART was April - June so 5 months later for approx 2 mos. My 3 month and 6 month PSA’s post-op were < 0.10 so I was doing ok on that part.

I felt like death warmed over for about 3 days after surgery. I was home within 24 hours of surgery and had bad gas pains for a few days along with some bladder and bowel spasms. After that, the catheter was the enemy and I never felt right until that was removed at 10 days. Once I was free, I could start the recovery which was slow getting all systems back up and running. I made it through the holidays somehow then started working out again after after New Years Day or 2 months post-op. I was concerned about hernias so I took it easy on stressing the abdomen for a while but was in pretty good condition at 4 months although there were new aches and odd feelings as I went along that is part of the “new normal” as your body sorts out the effects from the surgery.

ART just upset the recovery a bit by causing a rash, creating some urgency that I thought I was over, caused some serious tiredness near the end, and endless treatments for 2 months. Every morning was a routine for a 9:00am appointment then repeat. It gets old pretty quick. I am a year past ART now and don’t think I have any serious lasting side effects but who knows as radiation can cause issues over the longer term vs. surgery where you are as bad as you are going to get the next day. If something is bothering me now, I don’t know what to blame it on and just move on.

Hope this helps a bit.
Posted 7/15/2020 8:39 AM (GMT 0)
Good research from your side. 7 positive cores is a lot, but only one is high risk. Are you considering to send the samples to be check again to JH or any renowned place, mainly to confirm this G9?. Knowing if the node is invaded or not is crucial, slightly oversized nodes are frequent and they may be due to many facts. about the treatment, unfortunately both ways involve months of care or recovering. Both are reasonable but, if the node is negative, it is not so clear to me that he will need radiation if the surgery route is followed. He will have a path report determining the precise grade and extension. And, if it is finally contained inside the prostate, the most reasonable option would be to wait at least for the first psa tests to know if adjuvant radiation is needed. Good luck.
Posted 7/15/2020 11:52 AM (GMT 0)
G9 here too. Lupron for 18 months and radiation at the same time. Manageable side effects but no fun. T has come back to 150 after only 4 months off of Lupron. Important to me with young fiance'! Plus T makes you feel good all over, men need it. Your dad is too old for surgery (over 70) so they tell me. I am still at PSA 0 for now. Don't wait, get something done now. Best of luck!
Posted 7/15/2020 12:12 PM (GMT 0)
As best I've been able to estimate, perhaps only 20-25% of apparently confined G9 who elect surgery come through it as pT2 R0 N0. That path staging means (a) no positive lymph nodes among those removed, (b) no tumor growth through the prostate capsule (EPE), (c) no seminal vesicle invasion, (d) no bladder neck invasion, (e) no lymphovascular invasion (tumor cells found in the fine blood/lymph vessles within the prostate), and (f) no positive surgical margins (either unavoidable ones or ones caused by surgeon error).

IF you have that good fortune AND you do not have persistent PSA after your RP, you can avoid adjuvant therapy (and salvage therapy as long as your PSA continues to behave). With even ONE of these post-op findings with G9-10 disease, the standard of care is to advise adjuvant treatment after a healing period.

You said the G9 core was "on top of the prostate." The base of the prostate is actually on top and is where the neurovascular bundles that control erection are and is also near the seminal vesicles. Given that, and the number/distribution of the cores, my guess is that a perfect path outcome is statistically less likely.

A second opinion on the biopsy slides is always a good idea before making a final decision about treatment.

Djin
Posted 7/15/2020 1:17 PM (GMT 0)
I have a 73 year old neighbor that is stage 4 and they knew he was stage 4 with with imaging at diagnosis. Surgery, 6 months ADT and IMRT was his treatment. Currently his PSA is 0.08 1 year post RT with T recovery and no ongoing treatment.

De-bulking the primary tumor is controversial. Here is a link that says, “ This first randomized clinical trial of debulking with external beam radiation found that there was no overall survival benefit.”

https://prostatecancerinfolink.net/2018/10/01/no-survival-benefit-to-debulking-the-prostate-with-radiation-in-first-randomized-clinical-trial/

Here is a link that says, “There is now mounting data that shows that the removing the gland (thus the primary tumors) does slow down the prostate cancer’s progression and more importantly it can extend your survival.”

https://www.urologyofva.net/articles/category/prostate-cancer/3145129/is-there-an-advantage-to-debulking-prostate-cancer-tumors

If you are in good health and have a good surgery team, you will do fine with surgery at age 70. If you can find a R-less surgeon (single incision) you will have a rapid recovery.

Post Edited (Duck2) : 7/15/2020 7:30:13 AM (GMT-6)

Posted 7/15/2020 1:28 PM (GMT 0)
NiRo, your a dad is a fortunate man to have you as an advocate. The only thing I can add is agreeing with an earlier comment that a review of your Dad’s biopsy slides with Epstein would $250 well spent. I would not recommend surgery even if the cancer is already in the lymph gland. Your a Dad’s PSA is not too far out of line for his age and that’s a positive. In any event I’m a believer in finding the best team to treat your Dad and would be seeking the advice of one of the Centers of Excellence like Mayo, Johns Hopkins, Cleveland Clinic, MSKC, MD Anderson, Dana Farber, etc.
Posted 7/15/2020 6:11 PM (GMT 0)
Thank you everyone for the kind words and great advice!

Based on my dad's feedback, I am pretty certain we are going to go down the radiation route.

I somehow need to convince the RO that even if my dad's lymph node is positive, we should strive for cure and do the HDR brachy therapy afterwards. Maybe I am over treating, but I haven't seen any studies that deal with MaxRT that talk about lymph node involvement (maybe I missed them).

Does anyone know if I can call Johns Hopkins and request them to review the biopsies? That would be great if I can initiate it on the JH's side.

We live in NJ so we will be getting some second opinions from MSKCC. First consults were from RWJUH-NB.
Posted 7/15/2020 7:05 PM (GMT 0)
Just ask the doc who did the biopsy to have the slides sent to Dr. J. Epstein at JH for review.

If the node in question turns out to be benign, you can discuss with your docs what benefit there would be in sending some prostate tissue biopsied for genomic testing (OncotypeDx or Decipher, for example). It turns out that the genetic propensity of one's cancer to metastasize (low, average, or high risk) cuts across all Gleason scores (for example my G9 came back with a low Decipher score).

Knowing this risk could influence decisions regarding the timing or duration of ADT and/or the pelvic volume to irradiate (prostate bed vs. whole pelvis). A larger RT field "catches" more nodes, but has a greater risk of complications.

Djin
Posted 7/16/2020 2:31 AM (GMT 0)
JH Link: http://pathology.jhu.edu/department/services/secondopinion.cfm

Start with your urologist and see if they can arrange per the link. The key is finding out who has your pathology slides which could be the urologist’s pathologist or someone else they use. Most pathologists are familiar with second opinion requests so they should know the drill.
Posted 7/16/2020 3:14 AM (GMT 0)
Gleason 9 is deadly...Hit it as hard as you can with everything that's available to you...In many places, finding a good brachy RO can be difficult...If they can't do it, they won't recommend it..
Posted 7/20/2020 5:44 PM (GMT 0)
Hello NiRo,

Sorry to hear about your father's diagnosis but glad that you found the forum and are doing the research on how to go about treatment. I was diagnosed in 2016 with G9 and a positive lymph node. I did have the lymph node biopsied/confirmed prior to looking at treatments. I see you say that biopsy was in the works for your father, but I don't see the result here (maybe I missed it). Regardless, for what it is worth, I ended up throwing everything at it. Some doctors mentioned being cautious of possible "overtreatment" but I was only 50 at the time, and in mind mind, it made sense to hit it with everything available. Four years after the diagnosis, I am doing well, back to normal life, undetectable PSA, with treatment having finished almost two years ago. Unfortunately, the more doctors you meet with, the more differing advice you'll get so in the end, you and your dad will be forced to consider all the info, make a choice you feel comfortable with, go for it, and never look back. I did surgery to remove my prostate and positive lymph node, whole pelvis radiation, and chemotherapy. I also used Lupron for a little over two years (started just before surgery) and took Zytiga for six months. I'll never know if I could have been in the same place I am now without throwing everything at it and treatment was certainly a tough road at times but I don't regret any of it ever.

If you have any questions, I'm happy to talk any time. My email address is in my profile. Keep us posted on how it goes for your dad.

Bill
Posted 7/21/2020 3:00 AM (GMT 0)
Just a quick update, really unreal to me....the enlarged lymph node was actually bowel/intestine. I couldn't believe a radiologist could make such a mistake. The only reason we even found out was we got a second opinion at MSKCC and that includes a re-read of the MRIs as well which I just found out about this evening. The radiologist at MSKCC also spoke with the original radiologist and he is going to amend the original report. In the meantime, my dad underwent a ct scan of the abdomen to check for lymph node spread this morning (unknowingly) and we already got a call back saying it was all clear and negative.

At this point, I am going to push the RO to see if we really even need the biopsy. Furthermore, based on the board's advice, I have already asked to have his pathology reports sent to JH. MSKCC also wants to review them, but I am holding off as I trust that JH is the absolute affirmative answer here.

At this point, and I still want to confirm the MRI snafu with the original RO as it all feels a little surreal right now, we're still leaning towards MaxRT (ADT, IMRT, HDR via Brachy). My dad is against surgery as he doesn't want to have to deal with doing radiation after and incur "two times the side effects" if there was a biochemical re-occurrence.

If the biopsy results change based on JH's findings, it's probably a whole different perspective potentially. I don't even want to have to think about it after just going through the MRI ordeal.

Thanks again for all of the advice, keep it coming - it's really helpful. I'll keep updating this thread as well with what we decide.
Posted 7/21/2020 12:39 PM (GMT 0)
NiRo
GS 9 guy here from NJ also. I went the triple play route with MSK. I had brachy done in Manhattan and my radiation done in Middletown NJ. They also have a facility in Basking Ridge. Depending on where you live in NJ, you may be able to have the radiation part of his treatment done closer to home. Dealing with Manhattan even for one day is enough.
Posted 7/21/2020 12:52 PM (GMT 0)

Dogdays said...
NiRo
GS 9 guy here from NJ also. I went the triple play route with MSK. I had brachy done in Manhattan and my radiation done in Middletown NJ. They also have a facility in Basking Ridge. Depending on where you live in NJ, you may be able to have the radiation part of his treatment done closer to home. Dealing with Manhattan even for one day is enough.

Hi Dogdays,

Can you let me know who your RO was in Middletown? We are meeting with Dr. Khan out of Middletown on Monday virtually. We live closer to Basking Ridge though, so I wasn't sure we'd end up using him. This was one of my exact concerns in regards to trecking to NYC due to not having experts in NJ (lets say that do HDR Brachytherapy) that are for some of these treatments.

Post Edited (NiRo) : 7/21/2020 7:36:50 AM (GMT-6)

Posted 7/21/2020 2:56 PM (GMT 0)
Glad to hear that there's significantly less chance (maybe no chance?) of lymph node involvement, which should substantially make your dad's case easier to treat. Wondering...has your dad started ADT yet? Seems like you have your scans behind you now and are unlikely to biopsy the lymph node.
Posted 7/21/2020 3:10 PM (GMT 0)
NiRo, Second opinions are so valuable. I’m glad to see you following the path you’re on. The ‘best’ can make a big difference. Keep posting since it helps everyone on this forum.
Posted 7/21/2020 3:22 PM (GMT 0)
Good news about the lymph node. When there is no suggestion that high-grade cancer is not prostate-confined, ADT is not usually started if a RP is the primary-treatment choice. If, as in my case, the cancer is confirmed as prostate-confined and there is no persistent PSA after surgery, neither ADT nor RT is standard of care as long as the PSA remains undetectable.

Clearly, if G9 is not prostate-confined, you want to hit hard with adjuvant (after RP) or possibly neoajuvant (prior to RP) therapy, but otherwise you can avoid overtreatment.

Djin
Posted 7/21/2020 8:00 PM (GMT 0)

NiRo said...

Dogdays said...
NiRo
GS 9 guy here from NJ also. I went the triple play route with MSK. I had brachy done in Manhattan and my radiation done in Middletown NJ. They also have a facility in Basking Ridge. Depending on where you live in NJ, you may be able to have the radiation part of his treatment done closer to home. Dealing with Manhattan even for one day is enough.

Hi Dogdays,

Can you let me know who your RO was in Middletown? We are meeting with Dr. Khan out of Middletown on Monday virtually. We live closer to Basking Ridge though, so I wasn't sure we'd end up using him. This was one of my exact concerns in regards to trecking to NYC due to not having experts in NJ (lets say that do HDR Brachytherapy) that are for some of these treatments.

NiRo,
The RO i had in Middletown is no longer at that location. His name is Lior Z. Braunstein. According to his info on MSK’s site, it says he is in MSK Bergen in Montvale. His office number is 201-775-7076. When I had my brachy done, it was in Manhattan by Dr. Zelefsky. He is one of the top of the line docs in brachy.
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