Gleason 5+4=9, surgery scheduled soon (robotic), PSA 11.3. 68 years old, healthy. I had a PSMA scan late Dec 2017, and last week I found out I have 10 or so nodes that were enlarged on CT and lit up on PSMA, so they are metastatic, but there are no bone mets.
The surgeon says he can't get all the bad nodes (some are perirectal, behind the prostate), he recommends getting all he can followed by adjuvant radiation plus adt afterwards.
I think the radiation oncologist will recommend just adt and radiation, and I will need to decide fairly quickly. The case for surgery is to debulk the tumor and get out as many nodes as you can, even if you don't get them all; the case for radiation is 'why do both when radiation + ADT is just as effective?'
Since PSMA is so new, there's not a lot of studies on what to do with confirmed LN+
One other idea I had was to try and get abiraterone with the radiation and ADT like the STAMPEDE trial did in Dr James' July 2017 NEJM article. They had a cohort of nonmetastatic high risk subjects (some with positive lymph nodes) and the ones who got abiraterone +adt+radiation did a lot better than those with just adt+radiation (but they only had 56 months of data).
Any advice?
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BruceSF
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Quite an interesting dilemma. I will be faced with this choice in a couple of months...and I’ve heard the same arguments.
In my case, I have had 1 bone met (spine) but no lymph nodes. And have a rising PSA. I have been on Lupron for 3 years and had chemo.
If I were in you, I’d get my oncologist to help me decide. You need a quarterback to assist you with this important decision. Make sure you have all the facts. If you go the surgery route, make sure you have a surgeon who has performed a lot of these procedures and see his success rates.
Have you been on Zytiga yet? I just started it. My doctor wants me to get my PSA down hopefully to undetectable again before having either surgery and/or radiation. In literally 7-days my PSA dropped from 1.6 to 0.8 (it was 227 at diagnosis and Gleason of 4+4=8) when I started Zytiga+Prednisone (and continued Lupron). I view this Stampede treatment recommendation as another way to ‘de-bulk’ prior to surgery or radiation.
I’m sure others will weigh in. But these are the things I’d consider - hope it helps!
Thanks, James, it sounds like your m.o. is really working well with you - I think it's unusual to get surgery or radiation after 3 years of ht. I hope I can develop a relationship like that, though I actually just met mine a couple of days ago. I look forward to hearing about your choice.
It would be nice if I could go on ht, maybe with zytiga, and give this decision a little more time. I think i'll look into that.
Hi! I only can tell you about a man who was in a similar situation as you some years ago. My sister works as a nurse and told me about his medical history: 65 years old (more o less) when diagnosed with PCa, Gleason 9, PSA 133. Don´t know about he had lymph nodes affected. He was treated with brachytherapy + radiotherapy + ADT. He hadn´t had his prostate removed. Now he is 73, free of disease and my sister told me that he had gone to the doctor for his Sintrom+PSA control begore going on holiday to Brasil!
On the other hand, the oncologist told us recently- when talking about my father- that robotic surgery da vinci system is more bearable for the patient (when performed by an expert surgeon, of course).
Yes, they say recovery from Da Vinci makes it an easier choice, except for the impotence and incontinence and occasional lymphadema (swelling in legs) effects.
I would recommend having surgery followed by radiation and ADT. That is the route I followed. More and more studies have shown improved long term outcomes with the removal of the primary source of cancer. This is a relatively new change. It was almost two years ago that I had to argue with my surgeon to continue with the operation even if they found (which they did) that it had migrated to the lymph nodes.
Even if they can not get every cancerous lymph node out, getting as many as possible will definitely slow down the prostate cancer factory. The problem with going with radiation first is that if it fails you can not followup with surgery. The scars that the radiation causes makes surgery a very high risk move.
Here is some information on the benefits of surgery, even when it has metastasized.
I would also ask to be put on the Stampede or Latitude regiment. That is being on both Lupron and Zytiga at the same time. It has shown great promise in extending life. This may be especially important for you as there will be some lymph nodes that the surgeon will not be able to remove. Some references are listed below.
It it a lot to have to digest in a short time. Please know you have the full support of everyone here. What we can promise you is that you will never be alone. Remember “people like us we have to stick together “. We are sticking by you!
I had surgery in Feb 2016, started Lupron June ‘16, started 38 rounds of radiation August ‘16 and had Zytiga added to the Lupron on July 2017. The delay for starting radiation was to allow me to get bladder control back. Radiation tends to stop improvement in that area. The key was to start radiation no more than 4 months after surgery. Most people start ADT therapy as soon as is possible. My surgeon did not want the hormonal therapy to shrink ant tumors before the operation. He said that would make them harder for him to see and remove. The delay in Zytiga was do to the fact the the Stampede and Latitude trials just became public in The summer of 2017.
Good luck!
Remember, “people like us we have to stick together “.
Hey BruceSF, My diagnosis was Gleason 5+4, PSA 286 and pelvic and abdominal node involvement. Similar other than 46 years old at time of diagnosis. That was 2 years ago and I'm currently at <0.01 with no evidence of disease.
My treatment started with Casodex and Lupron immediately followed by early chemo which consisted of 6 rounds of docetaxel while remaining on the Lupron. The chemo and HT did some major damage to the cancer which showed in my pathology report. Did your doctor mention early chemo before a localized treatment?
I had several doctors tell me I was inoperable because of nodes and their location. I had a robotic surgeon tell me there was no chance. I almost gave up but tried one more time at the Mayo Clinic in Rochester. They offered me open surgery with an extended lymphadenectomy when no others would. They made no promises but were willing to take the chance. Doctors are no different than any of us, they all have an opinion. They know as much as their experiences have shown them. Doesn't mean they are wrong but they are not always right.
Get another opinion from a major research hospital and a doctor who specializes in prostate cancer. Once radiation is done it makes surgery very difficult. Another plus about surgery is you will get an accurate pathology report. It is well worth another opinion, even if it means spending a few bucks to travel. If you choose Mayo contact their Urology Department. It is an amazing center for care with very reasonable accommodations within walking distance. If you want any information send me a message and I will be happy to answer the best I can.
I suppose I'm speculating here, but it seems to me the Zytiga really makes the radiation a lot more effective, maybe so much so that the surgery would not have a strong additional benefit. Unfortunately, no one knows the answer to that. Maybe the best hedge is to do the surgery and then get Zytiga+adt+radiation a few months later.
March 2016 I was diagnosed. PSA 12 / Gleason 8. June 2016 I had robotic surgery by an excellent surgeon. 5 hour surgery . In my room at 8pm and walking with the nurses at midnight. I had total continence the minute the catheter was pulled (7 days later). With partial erection and feeling there and still is.
My PSA went to zero at surgery and within 3 months it was .024 . Next move was 37 sessions of radiation started October 2016. Needed 3 months to heal from surgery. My PSA was .042 at start. At finish of radiation it was .080. Doubling about every 3-4.75 months. This month .600 and is now expected to be back at 1 to 1.5 by April. Medical Oncologist does expect an eventual rapid rise. Control will be chemo and HT.
I was most impressed with my Urologist. All I have gone through I can say I am so impressed with what he did. IF i can recommend anything to anyone robotically for removal is top in my book.
Hi Bruce....I was diagnosed with advanced PCa with mets in Jan 2012 Gleason 7..PSA 509..With a spread to the bones..lymph nodes and 5 other locations outside the prostate...Given a short time to live...Introduced to Abiraterone March 2012...Watched my PSA reduce very quickly at first then trickle to less than 0.1 over a 6 month period to where it as remained to date...At the end of this month (Jan 2018) I will have reached 6yrs in my fight with PCa...My oncologist and team are fantastic...Great relationship exists between us...almost like a good big brother, little brother relationship with an element of retaining your own individuality .. Very important to listen to your oncologists, also very important to get the right treatment early in your diagnosis...Its not easy but sorting things early will save you so much grief and pain...In reading some of the replies left I could not agree more..Always stay strong and positive.
Thanks for replying, Alfred, I'm very happy to hear about your 6 years of disease control. Every case is different, of course, but your story gives me hope that abiraterone is the right way for me to go for starters, and the door is still open to do surgery and/or radiation a few more months down the line.
You are indeed right every case is different however Abiraterone seems now to becoming the more favoured 1st line treatment...Keep your eyes locked in...Over the next few months I will post a special article for all about Abiraterone...Look after yourself... Cheers
Jus found your post from 7 months ago. Am on a similar path, newly diagnosed 2 months ago. Recently started taking 3 month Eligard and daily Zytiga with prednisone. PSA has quickly dropped from 20 to 1.3. Am in a clinical trial where I will also have robotic surgery Nov 14. How are you doing now, have you had surgery?
Update: After 5 months of Lupron and abiraterone my psa declined from 11.5 to <0.015, which means it’s undetectable. That was nice I had hdr brachytherapy about a month ago (Aug 2018) and then started radiation (whole pelvis tomotherapy) a few weeks later.
I have finished 15 of 25 radiation sessions, 10 to go. After that I’ll probably stay on Lupron + zytiga for another year, and we’ll see how I do. There’s some question about whether 18 months, or 24, or even 36, is the right length of time for adt, maybe there’ll be some answers by then.
The only problems with the radiation have to do with my ‘plumbing.’ I have a 95cc prostate, and it doesn’t seem to have shrunk on adt. So I’ve been kind of stopped up down there. The nurse put me on Rapaflo and I got a 6 day methyl prednisone pack, which was great, but now I have to get up about 10 times at night and there’s burning. Rad Onc says that’s not so unusual, should be ok when radiation is done.
Hopefully these treatments will buy me a few years. There’s always a chance good diet and exercise will prolong that, but with GS 9 and 9-10 local lymph mets I’ll probably need another treatment down the line.
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I had hdr brachytherapy about a month ago (Aug 2018) and then started radiation (whole pelvis tomotherapy) a few weeks later. 
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