New Member Gleason 8, PSA 24.5, Bone Scans and CT Clear. Choices to Make!

I posted without a title a few days ago, so I thought I would start fresh.

My husband was diagnosed one week ago. Overall Gleason 8, with a PSA of 24.5. Pain in groin. The cancer is only in all six cores on left side of prostate, with exception of one core on right that showed "small focus of atypical glands" that looked suspicious.

Met with surgeon today and he said bone scans and CT scans look clear. He highly, recommends surgery.
I felt like we were in a Carmax store and all he wanted to sell us was a Mustang. Surgery is amazing. Radiation is horrible.

He urged us to not wait with a Gleason 8. He said next week, two weeks. As soon as possible (this right after I read two studies that showed no long-term problems with waiting 12 weeks to make a decision in low, intermediate, and high risk patients...thanks to Allen from this site, I believe.)

Surgeon has done over 2000 robotic surgeries. He says his men are not incontinent long-term. He has them do biofeedback in office post-surgery. He also said that there is a 10% chance that his patients need radiation/hormones after surgery once surgical pathology comes back. He tries to spare nerves, but can't tell if he can until he gets in there. He does not take out lymph nodes for biopsy. He does genetic testing instead.

We meet with radiation oncologist next Monday, at the Sylvester Cancer Center at University of Miami. Husband's path slides are getting to Dr. Epstein at JHU tomorrow for second opinion.

I don't think we can leave Florida for treatment, because we have an HMO, even though these great sounding cancer centers seem so wonderful.

We are now more confused. It's good that there was no large spreading that was evident, but we thought we were not going to have surgery as an option, and now we do, so the choice is more overwhelming, especially with so much conflicting information. I am thinking about my husband going through surgery and then needing radiation and hormones anyway. So confused.

Would appreciate any input. Thank you!

Hello fellow Vonnegut fan and I'm glad your husband's bone scan didn't show anything. He clearly doesn't have a great diagnosis, but the scan news (while never 100% conclusive) is positive so it means you can focus on a cure and that possibility is HUGE.

Surgery is always an option even with high risk cases like your husband's. The question is what are the odds of local spread (meaning in the prostate bed vs mets to the bones). If it's confined to the prostate, the surgery can be curative. If it's not, then it means surgery followed by salvage radiation. Or...well you just start with radiation and avoid the SEs of both surgery and radiation. Trying to weigh that balance I believe is the most important piece on your plate in the coming weeks.

While I'm not a medical professional, a 10% chance of needing radiation after surgery for your husband seems low to me given his G8 diagnosis and somewhat high PSA. I'd want to dig into that and find out more from other experts. Off the top of my head, I'd guess that ~10% of ALL surgery patients need radiation following surgery, but that the percentage is be higher for high risk folks. Someone like Tall Allen would likely be able to give you more precise numbers to confirm my hunch.

Glad you have a chance for a cure and hope we can provide some leads in helping you sort this out. Good luck to you both!

Hi KT,

I opted for surgery (and am happy with the decision and the results).

That said, your surgeon sounds problematic. It is good that he has done so many robotic surgeries, but one wonders if he is pressuring all his patients. I was given time to think, adjust, consult other surgeons, consult oncologists. In the end, I went through that process quickly - partially because I found the waiting difficult. But I was given the time to do that process without anyone (surgeon, oncologist, generalist) pushing me to decide one way or the other.

Don't sit and wait forever on this, but your husband should: see an oncologist; see other surgeons if uncomfortable with his (people on this site may be able to give you Florida recommendations); read up on the literature; talk and think about it. And take a deep breath.

Best, Joe

KT - I am FAR from an expert, but I think you should look into some of the nomograms posted on the web by Memorial Sloan Kettering Cancer Center in New York. These nomograms are computer models, based upon the actual history of thousands of patients, that help estimate the probability of various outcomes, given what you know and/or what you plan. Again, I'm no expert, but the nomograms predict that the percentage of G8 patients who have surgery but later need salvage radiation is MUCH more than 10%. This is something that is not necessarily under the surgeon's control, so his experience level cannot overcome the fact that many men have micro-metastases that are not seen at surgery but later become active and problematic. I'm not trying to "rain on your parade" but I believe that you should be working with realistic information, and I'm not convinced your current surgeon is being realistic. My own uro is the same way. He told me that a very low percentage of men have lasting side effects from surgery, but my web research into objective research studies showed that the actual percentage is much higher. I guess it is their nature. If they told us the worst of all the possible surgical outcomes, nobody would opt for surgery (and I'm equally sure the same could be said for radiation, but most of us have to do something. . . ).

With hubby's biopsy report, I wouldn't plan on taking many months to decide, but I would see little or no harm in taking a few weeks or a month to ensure that you fully understand your options and the impacts of each potential choice. Only then can you and hubby make the right decision for both of you.

Please have your doctor run some nomograms and discuss the results with you. A psa of 24, high core involvement along with a G8 is serious high risk. You have to know the probability of a treatment's cure rate with his stats in order to make a good decision. A psa above 20 is very suspect for systemic spread even if bone and CT scans are clear. You have to eliminate systemic spread either with the newer PET or nano particle type scans. Treating a systemic spread with a local treatment like surgery or radiation will not work.

Too often surgeons down play the side effects and overstate the benefits. Very clear here. I would not return to see him for many reasons.

The nomogram illustrates nearly identically what I learned at my dx. Did the urologist provide a stage based on the DRE? Could he feel a nodule or hardening of the gland? The large amount of PCA in the cores and PIN increase the probability of escape. This drives down the probability of surgery being successful and increases the probability that nerves may not be saved. This is basically what the nomogram is telling you.

To me, this is clear that he should start with an initial round of ADT then proceed to a combination of brachytherapy and external beam treatment including the lymph nodes. This is a very common and effective combination for the high risk, but potentially curable, situation that your husband presents.

Please let me know if I can provide more specifics about my experience using that protocol.

Here are a couple of articles related to what Michael-T mentioned:

/pcnrv.blogspot.com/2016/08/better-cancer-control-with-radiation-vs.html
/pcnrv.blogspot.com/2016/08/for-very-high-risk-patients-ebrt-bt-is.html

While higher doses are more curative, there is increased risk of side effects.

If you are seeing Dattoli, I take it you are in Florida? I don't know if Dattoli offers the kind of boost therapy discussed in those articles. I suggest you also talk to Constantine Mantz at 21st Century Oncology in Plantation, Florida. He's certainly among the top ROs in the country. He's doing a clinical trial of SBRT boost for high risk patients. This innovative therapy is discussed in the following article:

/pcnrv.blogspot.com/2016/08/sbrt-boost-therapy.html

As for PLNs, the CT scan looked for that already. I think that most ROs would go ahead and treat the PLN area anyway based on his high probability of PLN involvement. Remember, the cancer you can see is just the tip of the iceberg. You have to try to treat what you can't see as well (which is why radiation has better outcomes than surgery for high risk).

Look into a free consult with Dattoli Cancer center in Sarasota. I was treated there, had a very good experience.

just my 2 cents, I am qualified at nothing. the first surgeon' opinion sounds overly optimistic to me and sounds like he's tooting his own horn throwing out great sounding percentages.

I had surgery, it failed fast. I then had radiation, it failed fast. I am still dealing with metastatic prostate cancer. I was diagnosed late in 2008, but as a Gleason 7 with a PSA above 16.

I think you are doing the right thing by taking the time to investigate all options on the table. Don't let any of the doctors bully you into making a decision. There is no re-set button if you choose wrong, or if results don't come out the way you thought or were told.

You are getting a lot of good non-medical advice here, because all of us here have been through the process before. There is no one-size fits all solution.

With a Gleason 8, treatment is needed for sure, but it needs to tailored for your husband's exact needs and case.

Good luck ahead, you will figure out what to do.

I trusted my surgeon to perform a da Vinvi prostatectomy, but I don't always trust my him on everything, especially when he talks about radiation. He seems to hate radiation, always. I was faced with conflicting views, with a RO saying that radiation was the way to go, and a surgeon saying surgery. I then consulted a medical oncologist -- a doctor who treats patients whose disease has metastasized and thus who had no dog in this particular fight -- to help me sort it out. He was inclined toward surgery, in part because he said that if surgery fails, there is the radiation backup, but there is no surgery backup if radiation fails. I know that contention is sometimes disputed here, and that there are non-surgical backups to a failed radiation. I don't pretend to know the real answer here, but that was the advice I got, and I went with surgery from a uro who has performed thousands of RRPs. So far so good, but it's only been three months.

This study that Tall_Allen included in a previous post is very impressive.
https://pcnrv.blogspot.com/2016/08/for-very-high-risk-patients-ebrt-bt-is.html

It shows that the use of EBRT +BT has notably better long-term success stats that just RP and EBRT, in my view. An example: % of patients who needed lifelong ADT is 31% for RP, 21% for EBRT, and 16% for EBRT + BT. That's pretty impressive.

I wasn't thinking in terms of BT at all. I don't know why. Thank you for the education.

Thank you! We are seeing Mantz tomorrow. I appreciate ALL input from everyone. Will post updates.

JHU Dr. Epstein just faxed his pathology impressions back...

Has my husband at 4 Gleason 9s, and two 4+3=7.

darn it.