My husband is newly diagnosed. 55 yrs old. Gleason 9 Grade 5. Had RP on 3/16/20 t3b n1 with 9/43 positive nodes. PSA 1.4 at 6 weeks.

[dkingsley]

What can we expect next? He is scheduled for bone and ct scans next week and possibly Axumin scan if approved by insurance? Anyone have a similar beginning and/or suggestion on what we should do next?

[DFL208]

I had a very similar post-RP pathology. GL9, 3 lymph nodes and SVI. I received my first Lupron shot the day my catheter was removed, and have been on Lupron since for 1 1/2 years. I had prostate bed and pelvic radiation for eight weeks about 4 months after surgery. My bone scan was clear. My PSA has been less than .01 the whole time I have been on Lupron. It is different for everyone, but I tolerated the radiation very well, and the side effects of Lupron have been not too bad. All of my treatment has been at Mayo Jacksonville, and I am very pleased with the treatment I have received.

[dkingsley in reply to DFL208]

Thank you for your reply. It is encouraging to hear other similar experiences. What was your first PSA post surgery? Trying to assess how high 1.4 is!

[DFL208 in reply to dkingsley]

My pre-op MRI had shown no suspicious lymph nodes, so when the pathology report came back with 3 positive lymph nodes they immediately put me on Lupron . I never got a post op PSA without Lupron. I don't know if that matters for my treatment or not.

[dkingsley in reply to DFL208]

My husbands pre op scans did not show any lymph node involvement either. I think we were hoping with such an extensive lymph node dissection there was a chance he was clean. With a PSA of 1.4 wondering is scans will pick anything up. Hoping we get to do to Axumin scan.

[Magnus1964]

I was diagnosed at age 46 with a Gleason score of 9 and I am still here living a good quality life 27 years later. So don't panic.

[dkingsley in reply to Magnus1964]

Thank you! I have to admit I am a bit nervous for him. Encouraged by your outcome!

[Hidden in reply to Magnus1964]

Dear Sir, you started out at stage # 4? Wow 😳

[Magnus1964 in reply to Hidden]

I was stage 4 at diagnosis. The first Urologist I was seeing was supposed to be tops in thls area. Turns out he thought I didn't have Pca because of my age. As things progressed, turns out, I did. He was the first MD I fired.

[Hidden in reply to Magnus1964]

Wow Magnus! You home t record so far that I’ve seen on HU. You give much hope yo me and all newbies . Thank you sir.

[GP24]

They removed 43 lymph nodes, which is a an unusual high number, and nine of these were affected. This indicates that there are more affected lymph nodes somewhere. After surgery, if the tumor has not spread, the PSA value will be almost zero. So a PSA value of 1.4 after surgery indicates metastases as well. It may be that the metastases are so small that they cannot be determined with CT/bone scan. Then an Axumin scan or better yet a PSMA PET/CT will be able to locate these. I was diagnosed five years ago with metastases so your husband will live for years with these.

"What can we expect next?" Your doctors will recommend hormone therapy, possibly with Abiraterone or Chemo added. If you want to radiate the metastases you could get a Lu-PSMA therapy, but that is not available in the US. Patients fly abroad to get this expensive treatment.

Here is a trial in Australia, your husband could take part in if he would live there:

up.picr.de/37234873ob.png

.

[dkingsley in reply to GP24]

Thank you for your response! Australia is sounding pretty good right now! Our doctor spoke of the axumin scan but not the PSMA Pet/Ct. Is that available in all areas? We are in upstate NY.

[scottsname in reply to dkingsley]

Not sure about New York, but UCLA has the Ga-PSMA PET scans available. It is possible that your husband would be able to get into their trial. I have attached a video from UCLA on the effectiveness of the scans. The video was done in 2017, so things are continuing to improve. They were talking about adding the Lu-PSMA PET in the video. But, it would certainly be worth a look and possibly a phone call to get the ball rolling.

uclahealth.org/video-player...

I actually am a Gleason 10 and do not have any mets that we can see. I am going in for Bracytherepy a week from Monday with follow up external beam. I was put on Lupron right away and it has keep mu PSA down to .02. It was 25 when I first was diagnosed.

You might also consider heading over to Johns Hopkins, they have a great facility there as well.

Good luck to both of you, thoughts and prayers for a full recovery.

[dkingsley in reply to scottsname]

Thank you. We will certainly look into that information about the scans. Good luck to you as well!

[Tall_Allen]

I assume he already had a bone scan/CT before his RP. If the Axumin scan shows no bone metastases, he may be still be cured with whole pelvic salvage radiation and 2-3 years of hormone therapy. If he has distant metastases, the next step might be more aggressive hormone or chemotherapy (e.g., Lupron+Zytiga or Lupron+docetaxel).

[dkingsley in reply to Tall_Allen]

Thank you. Yes he did have clear scans pre RP. Even though we knew his cancer was aggressive we were surprised by pathology. Surgeon took very wide margins and lots of lymph nodes Will/can Axumin scan pick up mets at PSA of 1.4?

[Tall_Allen in reply to dkingsley]

Maybe. Let's hope not.

[dkingsley in reply to Tall_Allen]

My husband had ct scans done yesterday and dr said there were a few suspicious spots but they were not definitive. He has bone scan tomorrow. He may be able to have a ga-PSMA scan done at MSKCC. In your opinion would this scan be worth doing and would it change the course of his treatment or should we not waste time and get him started on Lupron? I was pushing for it because I thought if we found only local/regional spots he could benefit from radiation with ADT. Is that what you meant when you said he could “still be cured with whole pelvic salvage radiation and hormone therapy”?

[Tall_Allen in reply to dkingsley]

I agree with you - the reason to have a PET scan is to rule OUT distant metastases. If there are distant metastases it wouldn't be worthwhile. With a PSA of 1.4, insurance should approve an Axumin scan (which is probably as good as a PSMA scan at that PSA) - but it's understandable that they'd want a bone scan first.

[dkingsley]

Wondering if at PSA of 1.4, will the Axumin scan pick anything up?

[dkingsley]

Thank you... I so appreciate your responses!

[Hidden]

Schedule a confirmatory PSA test 2 weeks after the first one.

[dkingsley in reply to Hidden]

Thank you... they mentioned doing another PSA draw after the scans next week. I will make sure we get that done.

[dmt1121]

I have been and am in similar circumstances as your husband, though the surgeon taking 43 lymph nodes is far beyond anything I have heard of (typically 10-16). I had an RP when I was 57, with a Gleason 9 in 2016, I had 14 lymph nodes removed and one was positive. The surgery had negative margins. This was followed by Dacetaxel and Lupron. After stopping taking the Lupron (ADT) my PSA went back up to BCR range, at which point I got an Axumin scan (which was a huge battle with the insurance to cover it - but may be better now).

The Axumin scan showed a tumor near my bladder and a lesion on my left femur. Be aware that Axumin scans still require someone ( or several radiologists) experienced in reading them to get an accurate result and even then there may be disagreement, as in my case. The PSA range is discussed in the following link: ncbi.nlm.nih.gov/pmc/articl...

I ended up having a lot of pain in that leg and did get SBRT, after which (several months after), I was told they did not think it was a lesion! I complained enough to get a formal review and a change in how they reviewed and approved new patient imaging for treatment from outside sources. On the plus side, the pain did subside and I think that it was a lesion, as the majority of six radiologists, who reviewed my scans and subsequent MRI, agreed.

I would go with the Axumin or PSMA (PSMA is harder to get, as it's not FDA approved yet). The main thing to keep in mind is that you are playing "russian roulette" between not taking ADT, in order to get his PSA high enough for the scan to detect tumors and lesions while he is allowing the cancer to progress unfettered. Even so, I would still opt to stop ADT and get the scan. It should tell the story. Bone scans are far less effective, until you have advanced tumor spread, at which point they become almost impossible to reverse.

I am currently on Abiraterone (Zytiga) and Lupron now which seems to have arrested the PCa progress for now. However, I have no way to know if the cancer is progressing silently anyway. Do your own research using reputable websites and books; Sloan Kettering, Johns Hopkins, NIH, etc. You might buy Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer" as a primer to give you an overview of the disease, grading, etc. and then do research and talk to his MO about current treatments.

I wish you all the best. There are good treatments out there but you have to advocate for him and know what the treatment options are for his case, so you can ask the right questions. Good luck and keep us posted.

[dkingsley in reply to dmt1121]

Thank you so much for sharing this information. I will keep you posted on how his scans turn out. Lupron and Abiraterone are the drugs I think he will start if scans are clear. How are you tolerating them? He is most worried about brain fog, has that been an issue? Best of luck to you!

[dmt1121 in reply to dkingsley]

Brain fog is a side effect but I have found that it has faded over time. I do have fatigue and cannot be as active for as long as I would like. There are also hot flashes but these have also faded for me. This is not always the case. Weight gain of twelve to fifteen pounds is also common, as the abiraterone drops your testosterone to almost zero as well. That is how it fights the PSA and cancer. These are common side effects. If he does chemo, he may have temporary hair loss and long-term neuropathy but this is also treatable. He may also be prescribed a Bisphosphonate like Zometa or a Denosumab, like Xgeva to strengthen his bones. Bones can be weakening by reduced testosterone and by PCa lesions.

Exercise is important-both resistance training and cardio, as much as is doable for him. I suggest letting him get settled into a routine of treatment first and have a medical trainer give him a routine that's safe.

It can be a tough transition, especially when you are younger (under 65). It is a mental battle, as much as a physical one and I would recommend finding a therapist that understands this type of depression and sense of loss for him to talk with. Also, he can join this group and there may be local support groups in your area of men with PCa. Partners are typically welcome.

It is a tough storm and one that changes over time but if you have a general idea of the progression of the disease and take it one day at a time, the journey is much easier. Enjoy every day, every moment and do what needs to be done. Never forget to smell the roses and have goals that are meaningful and fun! 😊

[dkingsley in reply to dmt1121]

Thank you. I appreciate all of your thoughts and ideas. This is a tough road for sure and I am so grateful for all the information. Good luck to you!

[EdBar]

I was dx at same age, G9, stage 4 however. So disease had spread to my bones as well as nodes. That was over 6 years ago. Rather than go through everything I’ve done so far you can click on my profile to see what I’ve done.

Ed

[dkingsley in reply to EdBar]

Ed... thank you for responding. It is very helpful and encouraging to read your profile. Curious about the Metformin... heard of it for diabetes treatment wondering how it fits in with the prostate cancer?

[EdBar]

It was prescribed originally by Snuffy Myers, metformin is said to have some anti cancer properties, and is also used to counter metabolic syndrome that is fairly common among men on ADT. Metabolic syndrome is a cluster of conditions that increase the risk of heart disease, stroke and diabetes. If you google metformin and prostate cancer you’ll find some info. You can also go to YouTube and search Snuffy Myers and Metformin, he has several videos.

Snuffy specializes in PCa but has since retired, he was well known on the PCa conference circuit, has written books, published research papers, worked at the NIH for 20 years, and was the Director of the Cancer Center at the University of Virginia.

Ed

[dkingsley in reply to EdBar]

Thank you! We have lots to learn and I’m so grateful to you and all the others who are willing to share all your information and knowledge. Will certainly look into that. Thanks again.

[EdBar in reply to dkingsley]

Probably the best piece of advice I can give you is to get a medical oncologist that specializes in the treatment of prostate cancer. Someone who is up to date on the latest treatments as well as those in the pipeline. You may have to travel to see this doctor but it’s well worth it. Gleason 9 is nothing to play around with.

Ed

[PaulDY]

Get a second opinion review of the specimen slides. I did and they completely disagreed with the diagnosis, after having a team of doctors at a major hospital review them...said there was no cancer. Then my doctor was ticked and argued he was right, so the hospital team asked to do their own biopsy, which I did, and still no cancer. That was 13 years ago, and today my psa still averages under 3 as it was back then. Long story short, it's all about the lab that gets to interpret the biopsy stains, not the doctor. Some labs are not that good, and more men go under the knife because of being misdiagnosed and having not gotten a second opinion.

[Balsam01]

I didn't see where anyone suggested genomictesting. With a Gleason 9, I would think that would be prudent.

[dkingsley in reply to Balsam01]

Thank you for your suggestion. My husband had the genetic testing done through his blood (his grandfather also had PC) and we asked to have the cancer in his lymph node tested. Is that the genomic testing you are referring to or is there something additional we need to look into?

[Balsam01 in reply to dkingsley]

Yes. Testing for genetic mutations.

[j-o-h-n]

In New York City

** and **

Memorial Sloan Kettering Westchester

500 Westchester Avenue

West Harrison NY 10604

Closer to you and it's the tops.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/03/2020 5:48 PM DST

[j-o-h-n]

BTW What caused him to see his urologist/doctor in the first place?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/03/2020 5:50 PM DST

[dkingsley in reply to j-o-h-n]

Thanks John. He had kidney stones about 10 years ago so periodically followed up with urologist and his grandfather also had Prostate cancer so he started checking his PSA at age 50. It was always in the range but then from June to December of last year it went from 2.3 to 5.1 so Urologist ordered biopsy. He was a Gleason 9 with 9/12 cores positive.

[j-o-h-n]

Thanks for the response.

Except for the Grandfather part.... we both had the same journey.... stones, and a big spike in the psa.... I am a patient at Memorial Sloan Kettering cancer center.... one of the best in the country.. If your husband can manage the trip down to NYC or West Harrison NY it would be well worth his while. Keep posting here....this is a great place for information and camaraderie....Regards and keep fighting...(and laughing)....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/03/2020 6:53 PM DST

[dkingsley in reply to j-o-h-n]

May I ask who you would recommend at MSK? With Covid-19 going on would it be possible to be seen there anytime soon?

[dkingsley]

I think MSK makes sense for us. We have two kids that live in Manhattan... thanks for advice and information.

[Break60]

I was .1 post RP and path was gl9 pt3b. See my profile for tx. Doing well.

[dkingsley in reply to Break60]

Thank you for responding... it is so helpful to hear other people’s stories. I really appreciate you sharing your experiences.

[Break60 in reply to dkingsley]

Everyone is different. My story and others isn’t your story. I know we all want parameters around what our future will be; it’s human nature. All we can do is fight as hard as possible to stay alive as long as possible. Do your own research ( as you’re doing) but go to the experts who publish on line not just patients. Good luck.