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

I agree with Michael. Since you're seeing Dr Mantz tomorrow anyway, your husband might want to get a Lupron injection and/or a scrip for bicalutamide (Casodex). That could give you more space to investigate and make this important treatment decision. If you decide to get any kind of radiation, any RO will almost certainly recommend 2 months of hormone therapy before beginning. And if you decide for surgery, it won't hurt.

Get him on ADT. Higher risk than originally thought and clearly indicates hormone therapy. This will give you ample time to decide on a radiation treatment and doctor. All will want to start with ADT to start shrinking the prostate for a better target and to sensitize the cancer to make it more vulnerable to the radiation

This a bit of a speed bump and just clarifies the importance of beginning the treatment in a well proven manner.

When you say "get him on lupron and/or casodex'...who would do that? Would radiation oncologist do that tomorrow?

Tall Allen, no worries on the aside. I like it.

TK

The shot is pretty easy and most any doctor can do it as Allen says. More likely that the radiation oncologist, urologist, or medical oncologist would have it on the shelf than most GPs. Clearly the doctor will first need the dx information. I would get it as soon as possible. It is less important as to which shot to use be it Eligard, Firmagon, Lupron, etc.; as they will all do the same thing to arrest the cancer. Many doctors will add a course of Casodex (pills usually for two weeks) to offset the normal testosterone flare caused by the initial reaction to the ADT injection. This is most important when there are known mets particularly in the spine as the T flare can cause short term growth of the mets.

The costs when the practice is affiliated with or owned by a hospital can be three to four times what an independent practice charges as Allen points out. We have experienced that first hand with my wife's monthly shot of Faslodex for her breast cancer. This is because the hospital can add the "shared facilities" charge to every bill. This can significantly inflate the cost and provides you no benefit.

Allen and TK

Yes, I saw that Demanes was back in practice for a time. I wasn't implying that TK and husband should seek treatment from him as there are great HDR practitioners in the Southeast. Rather, that I have found the Demanes website the best source for HDR information and education. It will be a very useful tool for their research and understanding of the treatment and will help them assess other treatment methods and the HDR practitioners they may consult with.

Try this website
http://www.yananow.org/Links.shtml

Check the link for survivor stories, you can filter it to view different treatment options and see how the patients fared over the course of their treatment and years out.

The link earlier from Kilgore Trout, now clickable:
/pcnrv.blogspot.com/2016/08/for-very-high-risk-patients-ebrt-bt-is.html


KT
If I may nickname you that? You appear to be a great researcher/partner and you are being a great caregiver /advisor to your man. May I suggest when you find some quiet time to go to the searchbox at the very top of this Forum and type in the words: Letters to the newly diagnosed. You may find some solace there.,for both of you. We are right here for you, and keep the faith!
Wingman

Thank you again, everyone. Update: We saw Dr. Mantz yesterday. He is the first doc I have ever known to walk us outside to the parking lot. In addition to that, he spent 1.5 hours with us in deep consultation.

He explained radiation options, brachy boost therapy, talked about plusses and minuses of both radiation and surgery. He gave us statistics, which were lacking during our surgical consult. He also told us the difference between radiation doses and protocols post-RP, and without RP. My husband was concerned with doses. We left with a new understanding of the technological advances in EBRT and brachy, and even proton therapy.

Mantz told us that the radiation will definitely "sterilize" the prostate in cancer and bed, and possibly lymph nodes.

At the end though, he said he would recommend surgery simply to gain access to the lymph nodes to see if has spread or not. If it were his dx, he would want to know for sure if it had spread to lymph nodes.

Problem is our original surgeon does not do lymph node dissection. Says he only does genetic testing, so that's not good.

We are going to see another radiation guy on our side of the state for good measure on Monday, because we already have appointment set up. Affiliated with a major teaching hospital. Also, another surgeon on Tuesday. When my husband gets radiation, we will be using Dr. Mantz, though.

Our three questions at this point are: can someone go in and do lymph node dissection laproscopically so we can see if it spread without having to go through RP? Do surgeons still do pathology on lymph nodes before removing prostate, then leaving prostate if they find positive nodes? Is there actually survival value in doing RP with hormones and radiation? Dr. Mantz gave us his email and we will email him those questions today, but I'd like to know what y'all think.

Still investigating, but we plan on making a decision next week and getting started asap.

Dr. Mantz did not offer ADT yesterday. He does it but he only does six month shots. Have not researched differences between one-month, three-month, or six-month injections. That research on list for today.

I think Dr Mantz points out a benefit of surgery - you get to put the whole mount specimen under a microscope and know for sure what was there. With radiation, you never really know. For myself, I found I was comfortable not knowing. Others may be uncomfortable without that certainty. This is true for prostatectomy and for lymph nodes (PLND). There have been efforts to locate infected LNs using USPIO MRI or some of the newer PET scans. They may work when there is a large degree of cancer infiltration, but only pathology can find microscopic metastases.

There are several difficulties with PLND:
• Lymph vessels and nodes are small and invisible against the background of colored tissues and blood vessels
• They are sometimes hidden within visceral fat, which makes them nearly impossible to find by any means.
• Anatomic variation is huge. The nodes, associated with blood vessels, are in different locations in every man.
• Lymph node chains are networked rather than branched like blood vessels. Networks are random and unpredictable.

Because the nodes are difficult to locate, there has been experimentation with injecting fluorescent dye (indocyanine green) to make them easier to find. ePLND is popular in Europe but much rarer in the US. Mayo Clinic is a notable exception. It's still questionable whether ePLND gets them all.In the US, the more common procedure is limited PLND - the surgeon takes out a sample of a few LNs that he can easily find and they are sent to pathology. If the pathologist finds cancer in any, the patient is referred for adjuvant radiation.

You are justifiably wary of adjuvant radiation - SEs are worse than either alone, and radiation may impede healing. With whole pelvic radiation given as part of a primary therapy, you have the opportunity to zap and cure pelvic LNs that a surgeon may not be able to find, and the field can be extended to suit the individual anatomy. Anatomy is an important consideration - it's one situation where having excess visceral fat is a big benefit.

I'll answer your questions as best as I can:

Can someone go in and do lymph node dissection laproscopically so we can see if it spread without having to go through RP?

Aside from the difficulties mentioned above, some believe that there is no value at all to limited PLND. They argue that it often misses other infected LNs, and if you are doing surgical removal at all, only ePLND should be done.

Is extended pelvic lymph node dissection for prostate cancer the only recommended option? A systematic overview of the literature


Do surgeons still do pathology on lymph nodes before removing prostate, then leaving prostate if they find positive nodes?

Nope - at least not the 3 urologists I asked. I also wanted to know if they would stop the operation if they found cancer near the neurovascular bundles. They all laughed at my question. The only time they will do that is if they see extensive cancer that could not be treated with adjuvant radiation.

Is there actually survival value in doing RP with hormones and radiation?

hormones - no - clinical trials so far have not demonstrated any added value. Radiation - certainly - adjuvant and salvage radiation are done all the time. Or did you mean neoadjuvant radiation? No - that's never done for prostate cancer. Radiation makes the prostate more difficult to remove, and why would you do surgery when the radiation is expected to be curative? That said, I know of 3 nightmarish clinical trials where they are doing that.

There is a nano particle scan, Combidex, that can identify lymph node involvement at greater than 93% accuracy. Dr Jelle Barantsz at Saint Radbou hospital in Neigemeigan Holland has been doing this for over 10 years. Well worth the time and money in your situation.
Since your husband's stats indicate a very high probability of lymph node involvement your other option is to treat as if he has it.

I was treated here at Florida Hospital in Orlando. I went with radiation with brachy boost for a number of reasons, main one being I'm self employed and could not handle the downtime. The surgeons are going to recommend surgery. Can't say I like the idea of being cut up. Radiation certainly has it's own set of issues. So far so good. Last Lupron shot was one year ago. PSA now at 0.4

TK..I had the 6 mo. Lupron shot ....your hubby will most likely need more ....the one shot every 6 months makes since to me if he needs more....I`m at the 7 month now and the SE`s still hanging on ....mainly Hot Flashes ....RO said could be 3 months or more to wind down.......I`m treated at the Mantz 21st. Century in Cape Coral , Fl...and have really liked the staff and feel well cared for....2 more to go .....Good luck David

We have a doc, a treatment plan, and possibly a clinical trial. We are going with EBRT and ADT, no surgery. Doc is Matthew Abramowitz at Sylvester at University of Miami. He did residency at Fox Chase.

My husband feels good with this doc. He answered his questions well, went down avenues that helped my husband feel comfortable, and they sort of clicked.

There is a clinical trial he qualifies for that is interesting...to the best of my limited understanding it is pushing the boundaries of the benefits of brachy boost by replacing brachytherapy with initial lattice stereotactic radiatherapy.

https://clinicaltrials.gov/ct2/show/NCT02307058

I have to read more about the trial, but since there is 3T MRI and colonoscopy to handle before treatment starts, we have a few days, so I am going to take a day off of cancer research and read later. I am behind on my own work. Husband doesn't start ADT until after the MRI. We need to wait 2 weeks for that, though we are on a cancellation list for first available. That's the only thing I don't like.

It feels good to have made a choice, and it feels good to see my husband more comfortable emotionally.