My husband was diagnosed with metastatic prostate cancer in January 2022, his Gleason score is 9, with mets to lymph nodes. He has been on Zytiga +Prednisone and Elegard shot, all started 4.5 months ago. PSA was 12.5 and is now 0.01. Surgery was scheduled for March but I insisted on a PSMA PET Scan and they found the metastasis, and the tumors were too large to remove so thats when they started this treatment. We have been seeing an advanced prostate cancer Dr in the urology clinic in Tulsa, Ok. They are planning surgery again in September. We have a second opinion at MD Anderson Cancer center in Houston on August 31st. What is the best options for treatment. Once it’s metastasized, they go in to take it out and it just multiplies right? Or am I wrong? What options do we have? I really don’t think the treatment is the best that he is on, even tho his PSA is now 0.01. Thank you for any input.
Treatment options for metastatic pros... - Advanced Prostate...
Treatment options for metastatic prostate cancer?
Once the cancer appears outside the prostate, surgery is no longer an option. He is doing great on his current treatment, so stick with it.
Your husband has no bone mets so this is a low metastatic burden. In this case this study showed a benefit for radiating the prostate.
esmo.org/newsroom/press-rel...
We were told that if he does radiation he can’t ever do surgery if needed. I don’t know if that is true. But I feel surgery is not the best option.
Not true! Surgery is more difficult but can be done.
Facts show the cancer can come back following surgery
Where are the metastases located?
Right side iliac crest lymph nodes
I will consult with a couple of RO in centers of excellence about doing radiation to the prostate plus whole pelvis radiation perhaps up to the aorta bifurcation plus SBRT boost to the lymph nodes identified in the PET/CT and 2 years of ADT plus abiraterone.
He may have other lymph nodes affected in the pelvis and they should be treated. Surgery will not be able to take care of all the lymph nodes which may be affected. They have to treat what the PET/CT can not identified (all metastases less than 4 mm).
If all his metastases are in pelvic lymph nodes he can have whole pelvic radiation, which may be curative. Surgery is a bad option - it is certain not to be curative. They are only suggesting that because they are urologists and surgery is all they know. If the LN tumors showed up on conventional imaging, he may qualify for this clinical trial:
clinicaltrials.gov/ct2/show...
His LN tumor was only on the PSMA PET scan, on the other scans it was supposedly only prostate contained and they were going to do surgery, but after the pet scan they changed directions in treatment.
He should still have whole pelvic radiation even though he won't qualify for that clinical trial.
The POP-RT trial had phenomenal results - 5yr progression-free survival among 95% of similar patients, and with low toxicity:
prostatecancer.news/2021/08...
They would give a little extra radiation to the sites identified by the PSMA PET scan, and keep the ADT going for 2 years.
Could they radiate with SBRT the LN only? I am really not a doctor, but this come to my mind. I agree with you that if they radiate the prostate than the surgery is not anymore an option. All very good questions. I am only on Firmagon injections for four years now with high metastatic burden but my Gleason score was only 4+3. I am doing reasonably good now. Can they do genetic testing? István
Yes, you can. However, there are usually more lymph nodes affected than visible on a PSMA PET/CT. Radiating them with IMRT should destroy these too. On the other hand I know of no study which compared the two radiation systems regarding affected lymph nodes in the pelvis and found one significantly better than the other. I prefer SBRT because it just takes three radiation sessions only.
You are doing an excellent job for your husband. Getting the PSMA Pet scan and getting the appointment with MD Anderson are both brilliant moves. Once the cancer has escaped the prostate, surgery is a lousy option...and I had a successful RP four years ago. It is really unfortunate the Urologists are trying to schedule it. It is true that once a person has radiation, RP is very, very difficult. But that is irrelevant. Tall Allen knows this stuff inside out so pay close attention to what he advises. It's way beyond my pay grade but I believe the proper radiation treatment might be curative and is a WAY better option than surgical removal.
I hate it so when another warrior is faced with this battle. Stage 4 with Mets here Aug.2016. For what it’s worth. My oncologist told me that once the cancer has left the host there was no use removing the prostate. Forget the urologist he’s just making money. I went under Taxotere Chemo, with a bone shot the next day for 6 rounds, then on to a cancer drug Xtandi and a bone shot with lupron as well. Been almost 6 years now and doing good. Hope this helps. Good luck warrior 🙏🙏🙏🙏
I have the exact same experience as LD; even to the same date of diagnosis. Almost 6 years! Congrats, LD!
As for you, NNPWife, you are on the ball with your questions and decisions! Keep asking and pushing. Once prostate cancer escapes, it is still prostate cancer, but it is now systemic and can grow anywhere - my bones have been riddled. So it needs to be treated systemically, which usually means little to no surgery.
I still have the traitorous organ - a prostatectomy is no walk in the park, and I knew it would need to be followed with chemo and spot radiation anyway. Chemo arrested the bone tumor growth and resolved the 2 involved lymph nodes.
It would be great if there were some single treatment for your husband, such whole pelvic radiation, which "may be curative," as TA says. In the meantime, remember that prostate cancer growth is moderated by androgens (i.e., the testosterone family), and your husband's current treatment regimen is standard of care. His PSA is low, indicating that the cancer is quiescent. You have time.
Good luck. - Joe M.
My doctor just giggles when I go to see him. He’s proud of how I’ve been doing. Sounds like your doing great too. Keep up the fight warrior 🙏🙏🙏
You know, you are right: I AM doing great, despite how it feels sometimes. Thanks for reminding me, LD.
I was dx in 2014 with G9, stage 4 cancer with mets throughout my skeleton and nodes. I had my prostate and several nodes radiated that year together with ADT similar to your husband. I was advised to avoid surgery in order to avoid complications. I also had early chemo per CHAARTED. My PSA remained undetectable for 6+ years, only lately - the past year, has has it become detectable on an ultra sensitive PSA test. The prostate cancer specialist that I was seeing at the time, Snuffy Myers once said having my prostate and nodes radiated was one of the best things I did early on, “eliminate the mothership “. He also believed in hitting it hard with everything you got early on which I did, I’m still here, 8+ years later. Lots of prayers together with Gods grace and healing hands too.
Ed
larry_dammit, what do you mean by a "bone shot"? Is that radiation? Thanks for any clarification.
Probably referring to Xgeva. Injection to belly fat for me. Easy easy. Mostly for bone metastasis. Five and a half years for me now. Usually once a month at start. Now every 3 months.
Expect that MD Anderson will agree with Tall_Allen. It is sad that "professional" MDs such as that urologist suggest inappropriate therapies !! Frankly meets my definition of malpractice.......ie ignorance of best practice.
I am very glad I got a second opinion through the Scripps / MD Anderson partnership here in San Diego. Scripps is outstanding and the partnership with MD Anderson makes it even better. I had a wonderful experience with their multidisciplinary uro-oncology team.
Unfortunately, this process has made me realize how there are some really bad urologists out there. All some of them want to do is cut. While they might do a good job at driving the robot or wielding the knife, many are horribly poor diagnosticians as well as atrocious communicators.
Ironically, it was a Scripps urologist, Carol Kashefi, that missed three high PSA tests. It was only when I switched my care to the VA - unaware I had prostate cancer - that it was found. When they found it, my PSA was 27 and ultimately it most recently went up to 36, with Gleason 4+4 and metastases to lymph nodes and bones. Thanks Carol Kashefi! Without your medical care I'd have a boring retirement.
I didn't see a general urologist but went to the Scripps Multi-Disciplinary Cancer Clinic off Torrey Pines (across the road from Scripps Green Hospital).
My first Kaiser urologist did no examination whatsoever. It might as well have been a phone visit. I was practically begging for a prostate MRI in January after consistently elevated PSAs (around 20, after six weeks of antibiotics). He documented "chronic prostatitis was the likely cause of the elevated PSA" and wanted to wait longer to see what the PSA did. Well, in about 7 weeks it went from 20 to 29 before he finally ordered the MRI. With delays in scheduling the MRI, it was April before I was able to get it. Absolutely worst medical experiences of my entire life dealing with urology there. I love my primary care doctor and their oncology department is awesome. But, because of the absolutely horrible experience with two doctors, the staff and scheduling with SD Urology, I will never recommend Kaiser Permanente to anyone.
I can't stress it enough, they make decent plumbers but they're lousy oncologists.
Very funny. I happen to need a plumber. But he’s got to crawl under the house.
I am in a very similar boat. Everyone on this site has been great at helping me with advice and questions to ask.
I’m 52 and was diagnosed in May 2022 with Gleason 9 (4+5) with extension outside the prostate to the lymph nodes and a small bone metastasis on my right hip. I pushed for the PSMA PET scan which identified more lymph node mets including a small one near my collarbone.
Several urologists told me surgery was not an option as the cancer has already gotten out. Also, one explained, even if I could have surgery, with this Gleason score, I’d still need radiation and ADT anyway so why not just skip the surgery? Originally, I was put on Zytega/prednisone and ADT. But, that changed after getting my second opinion.
I am now having triplet therapy which includes early chemotherapy (docetaxel, 5 rounds), ADT (Lupron) and Nubeqa (darolutamide). They will do radiation to my prostate in November. If needed (after the chemo/ADT), I can have SBRT radiation to individual lymph nodes. For me, this was the best option rather than doing wider field radiation and all the associated side effects.
My MO and RO seem hopeful that with my low volume metastases, this early aggressive therapy will drive it into remission.
Best wishes as you look at different options.
Your husband case is almost identical to mine. Mets to lymphs. My Oncologist presented my case to their Cancer Board. It was decided that surgery was out of the question. I began with Lupron. A month later I began the first of 28 EBRT's. Than I was put on Zytiga and Prednisone. My PSA has remained at .04.
I would follow Tall Allen on this one. Time to break away from the urologist and see a good radiation oncologist and a good medical oncologist.
Welcome to this community for support and ideas. Indeed it is clear that the best current approach is whole pelvic (expanded field up to aortic bifurcation) and the prostate radiation IMRT, with a boosted dose to the identified sites. As Tall Allen and Tango and others described. Your intuition about surgery not being best was correct. Get a referral (or self refer) with the best center for radiation oncology to start the planning process. An RO and an MO should your team going forward, not a urologic surgeon.
Look into Lutetium treatment called LU177. It is a injection of a killer atom that once injected seeks out and attaches itself to any cancer cell & kills it, while leaving normal tissue unharmed. The treatment has successfully been used in Germany & Australia the last 10 years & was recently approved in the US by the FDA. To qualify the patient’s cancer must have spread and surgery is not an option. MD Anderson should be able to guide you to a treatment facility. This is life saving treatment with minimal side effects. Paul in Memphis.
Lutetium PSMA therapy can have side effects especially if the cancer is low volume. Not really recommended at this stage. This is my conclusion by reading this forum. I am not an oncologist MD Anderson. I believe they should know this.
Lu177 treatment has been approved in the US, only after all/ most other possible treatments have failed. In Germany, where I was treated, they will use it as an early treatment. My doctor there said, I had a much better chance of good results, by coming early, which seems to have proven true so far, 3-1/2 years post treatment, and my PSA remains undetectable.Your American doctors will not suggest that treatment at your stage, because it has not been approved by the FDA, so is not available for them to use at your stage.
Tall Allen is the best, re. American approved treatments, but it seems that he doesn't consider what has been studied and used extensively, in many other countries.
You should take management of your own treatment into your own hands. As you have found, various doctors will recommend what they do, which may not necessarily be what is best for you!
Gorden, in Bristol Bay Alaska, home of the all time world record for the largest return and catch of wild Sockeye Salmon, still going on!
I was diagnosed about six months ago with stage 4 Gleason 9 pc. I am taking Lupron and zytiga and a clinical trial of Lu 177. I am castrate sensitive and psa is undetectable. I take my fifth lu177 treatment tomorrow. This clinical trial is at MD Anderson . It may lead to use of pluvicto for early treatment.
What treatment did you have early besides Lu 177?
Also, look into XTANDI treatment that slows cancer growth & can in some cases eliminate it. It is used successfully along with Lupron to slow the cancer and put it in remission. Also, The West Cancer Clinic in Memphis, TN is very successful treating cancer patients
Very similar diagnosis in September but my urologist looked at my biopsy results and said no surgery for you. Sent me to the medical oncologist and the radiation oncologist. After initial bone scans, the oncologist sent me for PSMA, we ended up doing ADT+IMRT to prostate, whole pelvic and single bone metastasis + Xtandi.
Second opinion was a brilliant idea. Listen to Tall_Allen carefully. He should be a doctor. Knows his way around a prostate.
NNPwife I’m sorry your husband is facing this.
I also had a very similar Dx in June 2021 - Gleason 9, mets to regional Lymph nodes and PSA 32.
At UCSF the urology surgery team said radiation and medication treatments were the best path.
Started with Zytiga+Prednisone & Firmagon, kept Z+P and added quarterly Lupron shots for ADT for two years. (My medical oncology treatment protocol)
For my radiation oncology treatments I had 25 IMRT whole pelvis radiation sessions and as Tall_Allen notes it shows a curative effect in that study he cited (he has excellent advice btw on all PCa) and that is what my RO also said.
My Radiation oncologist (Dr. Mohammad) also added a Brachytherapy boost after my IMRT was finished based on data from an in-progress trial (sorry don’t remember the name or details). I haven’t seen other folks mention that so you should ask your husband’s RO about this.
So far I’m 9+ months in and things are looking great at <0.015 PSA.
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