Prostate Cancer Stage 3B

[103532]

Has anyone ever heard of someone being completely cured of Stage 3b prostate cancer (bilateral seminal vesicle invasion) from surgery alone?

[Adendino]

My husband is 62, fit, and was diagnosed in Oct with T3b. He started on Casodex, and is getting Lupron shots every 3 months and Abiraterone/prednisone daily. He will continue on these meds for 2 yrs. Additionally, he just completed 39 sessions of radiation to the prostate/seminal vesicles and area directly around the prostate. He’s being treated at UChealth in Aurora CO and his docs are working/hoping for a cure.

[103532 in reply to Adendino]

Thank you! My husband is also fit and 62. He is being treated at Yale. His stage 3b was discovered on his surgical pathology. He did have a neoadjuvant course of Casodex and Lupron due to his Covid delaying his surgery for three mos. He had his RALP with PLNDin Sept. ‘22 and has had three and six months of undetectables. They do not see a need for radiation and more hormone therapy until detection, but I am very anxious we should be doing adjuvant radiation.

[Adendino in reply to 103532]

I keep asking if we should be doing more now too, instead of waiting for a recurrence. He was Gleason 9 and also had EPE. A real lesson for me in trust and patience. My husband, Jeff, completely trusts his team and is positive and feeling great and isn’t second guessing anything. The side effects from the ADT and radiation were minimal and we are currently on a mtn biking trip in UT/CO and he’s feeling strong. I will try to count my blessings, of which there are many.

[NJWarrior in reply to 103532]

Dr Isaac Kim at Yale is an amazing doctor. Hopefully, you've been under his care.

[103532 in reply to NJWarrior]

You betcha! He is my husbands doc and overseeing it all! Thanks for the extra vote of confidence in him.

[NJWarrior in reply to 103532]

I was his final patient at Rutgers Cancer Institute of New Jersey before he moved to Yale. He's a brilliant surgeon with a bedside manner like no other. Prior to surgery I was told to expect at least one nerve bundle to be removed. After surgery I was told everything was saved. I also had zero incontinence from the day the catheter was removed and ED was only a few months duration.

[103532 in reply to NJWarrior]

We love Dr. Kim. He is one of a kind!

[lowT163 in reply to 103532]

radiation makes sense to me too. B3 means it’s out or so they told me and I was given 39 rounds. Certainly not recommending but it happens in some cases for sure.

[tn12 in reply to 103532]

How's your husband doing?

[103532 in reply to tn12]

Hi tn12,

It's timely that you ask this because we have had significant concerns. His cancer rose from <0.04 since RP for Stage 3b to 0.06 in 9/23. Recheck a week later showed a rise to 0.1. This was followed by a drop to <.04 a week later followed by another <.04 the following week. We thought we were in the clear, but were shocked to see his psa rose to .16 a month later (11/9), A PSMA Pet Scan revealed small radiotracer activity in the lower abdominal/pelvic area lymph nodes of periaortal caval, aortic caval, common illac and retrocaval node. The largest SUV max was 10.4 in the retrocaval node although the node is not enlarged. This is considered by Yale to be stage M1A. A repeat psa on 12/5/23 revealed his psa had risen to .273 (so a definite biochemical occurence).My husband's surgical oncologist at Yale immediately referred him to a Medical Oncologist who started him on Casodex followed by Lupron two weeks later. This was immediately followed by Zytiga with 5 mg prednisone. He recommends this ADT treatment until it fails in approximately three years. We consulted with two radiation oncologists (one in Hartford and one at Yale who specialize in Salvage RT for biochemical recurrence of prostate cancer. Both said it would be feasible to radiate the pelvis and extend the field to the affected nodes using 70 gy in 39 treatments. He is set to be CT mapped in February with a start date for radiation at the end of February. They want to proceed with curative intent, although we have been cautioned by our Medical Oncologist that this may bring many side effects without the benefit of a cure. If we can stall or delay progression with the hopes of my husband having a durable remission or even the potential to take a break from ADT, then we deemed it worth it. We are visiting Memorial Sloan Kettering tomorrow to get expert opinions on our treatment plan and their take on the SBRT radiation (Stampede trial) . I am also wondering if radiation is not the most optimal treatment, then why not add a 6 week cycle of Docetaxel to the mix of ADT.? This would be considered triplet therapy (Stampede trial). His current medical oncologist at Yale is against chemo at this time because he is considered low burden, early metastatic. Yet, I need to ascertain if the chemo would be more effective on the hormone specific cancer rather than waiting for it to mutate to MCRPC. That is another question, I will be asking Sloan Kettering about. Finally, his inflammation markers are very high, and these came up at the same time as his psa began to rise. He has very high RA factors, high CRP and granulocytes. As our son has Sarcoidosis in remission, I will be inquiring if these autoimmune findings could cause a false positive psma uptake on the scan. With his rising psa, it is doubtful. We will meet with Memorial Sloan Kettering tomorrow followed by a meeting with his oncologist at Yale next week. I will keep you posted. I hope everything is going ok with your husband. Please reach out at any time.

Stephanie

[TylexGP in reply to Adendino]

I was 56 at diagnosis G9 T3b n1. I have been on Lupron and Abiraterone and prednisone for two years. In addition I had HDR Brachytherapy followed a month later by 25 sessions of EBRT at MSK.Hoping for a durable response. Current PSA is .05.

[103532 in reply to TylexGP]

Thank you for sharing. We live in CT, and MSK is on our short list if he becomes detectable. Yale has been wonderful so far but prefers to wait until 0.2 for salvage radiation. Best of luck to a continued long term response.

[TylexGP in reply to 103532]

Yale would be closer and is very good I also live in CT. My wife and I spent a lot of time at Yale when her Mom and Sister were being treated and eventually died due to cancer. I just couldn’t ask her to walk through those doors again during the early days. If you ever have to go to MSK their West Harrison NY site is very east to get to other then traffic on the Merritt.

[103532 in reply to TylexGP]

That is very good to know. My son is a pathology histotechnologist at MSK. Hopefully we may never need to leave Yale, but very grateful to have such top notch cancer centers at our disposal in New England.

[Keniszen in reply to 103532]

If you get three increasing PSA readings, I would visit radiation oncologist. Likely better to start salvage radiation before 0.2. (SPOST study)

[103532 in reply to Keniszen]

Thanks for the good advice. I don’t want my husband to wait until .2 either.

[Keniszen in reply to 103532]

I thought to wait till higher PSA and get PSMA PET Pylarify , but I think the tiny cancer cells might be relocated to bones if you wait till you can “see” them on a scan.

You may be able to get PSMA PET Pylarify to confirm that no metastasis is visible, so proceed with radiation with haste.

[warrior22 in reply to Adendino]

exact same with us !!!!

Gleason 8 and 9. PSA 2 weeks after radiation 3.2 but am told psa bump from killing ca cells : same for you ?

[tn12]

My husband is GL7 and T3B. Had RP in Dec 2021. No other treatment so far after RP. Doctors say they will take action at 0.1. His PSA in Mar 2023 was 0.02.

[103532 in reply to tn12]

thank you…..best wishes for continues treatment success!

[tn12 in reply to 103532]

How is your husband doing?

[babychi]

Cancer may return if major changes to diet and lifestyle aren’t significant. Cured? We prefer to think his cancer is in hibernation. We gave up alcohol, increased daily exercise and eat very few eggs, far less red meat, eat mainly organic food, mainly fruit and veges, use chemical free products. Genetics played a major part in his Gleason 8/9 diagnosis. Both mother and aunt had breast cancer. We are realistic about his lifespan. He is 77 and looks and feels fabulous. Still has his prostate. Every day is a bonus🌻

[Karmaji]

Sure....cure is possible....

Change lifestyle which led to my state....

Epigenetic look on lifestyle may lead to changing hardware genetic thru software...lifestyle

Stone Age medical therapies will be replaced with epigenetic resetting...a hint from Shinya Yamanaka factors

All this is a play of subparticles and electrons of which we are made of....

Have a positive look....whatever it is...

[Karmaji]

may be listen to Marc Scholz PCRI videos ....and French researcher Laurent Scwartz

[103532 in reply to Karmaji]

Thank you. I am also interested in alternative therapies.

[Hidden]

Yes, me..... metastatic prostate cancer - two metastatic lesions on my spine in 2004. Clinical trial of chemotherapy with either Lupron or Eligard. No medication since February 2010. Started testosterone in 2011. Followed every quarter since. I recognize that I am the exception, but, yes a cure is possible. 76 and enjoying life. I wish all the best in fighting this terrible disease.

[dhccpa in reply to Hidden]

Great outcome

[103532 in reply to Hidden]

That is just amazing! Wonderful!!’ May it always continue!!

[London441]

I was T3B based on post RP pathology. Surgeon achieved negative margins but SVI and 1 positive node.

He suggested I meet w a MO who offered me an clinical trial of aggressive additional treatment, which I accepted. Since my PSA was undetectable post op. This at a center of excellence. The purpose of the trial was of course to try to see if not waiting for recurrence is efficacious. This was a departure from standard of care at the time (2019).

It still is, based on more recent evidence that waiting until .1-.2 etc. has the same benefit.

I don’t believe it, and don’t regret taking action right away. This is strictly my opinion and was an individual decision.

I didn’t have the benefit of access to PSMA scans at the time either, which would likely have influenced my path.

I saw no reason to wait for the inevitable recurrence to take action, and of course I’ll never know if it actually made a difference.

I didn’t believe in radical change in diet and still don’t, but I eat well and healthfully in general which is enough for me. I believe that of what we can control beyond medical care exercise is the biggest difference maker by far, considerably more than diet. Again my opinion only, though the data on the benefit of exercise for Pca is predictably compelling. .

I am 4 years post op. The trial ended in early 2021. I have been undetectable throughout.

I believe that modern radiation in particular is inducing many more longer remissions, even cures for this stage compared to not that long ago. The ability to more safely, strongly and accurately radiate a larger field in the pelvis-and the growing imperative to do so-than previously possible is probably the reason.

If residual cancer post op is confined to that area eradication is more possible than ever before-but by no means guaranteed. The disease is crafty, survival endowed, evades detection and can hide dormant for years.

A great reason to hit it as hard as possible and get on with one’s life, regardless of timing of treatments. Great luck to you!

[103532 in reply to London441]

Thank you for sharing all this. So happy you hit it hard and it paid off. Thanks also for sharing your treatment.

[Rich_Rad]

Hi. Glad you are getting helpful feedback.

I have T3b staged after my aborted prostatectomy. Seminal vesicles were “undefined”, and 3 of 15 lymph nodes tested positive for prostate cancer. My treatment at Yale was aggressive- 44 radiation sessions, cassodex, then Lupron/Abiraterone/Prednisone for 2 years. Now 16 months post treatment and PSA raising slightly (now 0.107). Told not to worry and scans won’t show anything at this level… I feel I have had very good treatment at Yale. Did go to MSK last month for a second opinion about waiting till PSA is higher and this was confirmed. If I need further treatment I will likely transfer to MSK. Why? Here’s one indication… urologic cancer at Yale shares a multi specialty clinic (one office) in Smilow. MSK has an entire building for urologic and prostate cancer.

More patients… more experience.

Happy to discuss more if you like.

[103532]

thank you sooo much. It is invaluable to talk to patients close by regionally and share experiences. Thank you also for your opinions about MSK. Good luck to you, and I will likely reach out again.

[Break60]

see my profile for history. It’s nearly 10 years since I was dxed with pt3b post RP. But I don’t consider myself cured. I’m still on HT with estradiol patches and Xtandi. I’ve had major urinary incontinence from all the radiation post RP for metastasis. I now have a catheter after failed AUS which had to be removed. UTIs caused sepsis which put me in hospital for three weeks!

[Zennavigator]

I would highly recommend that everyone with prostate cancer read about Joe Tippen and fenbendazole (one brand name is Panacur C) I believe it either prevented or scavenged metastatic prostate cancer in my case. 12 of 13 sites positive for cancer, yet high resolution MRI, pelvic CT scan and PET scans showed no signs of spreading even though there was a lesion approx. 2.5 cm on the back side of the gland. One site was a Gleason score above 9.

[tn12 in reply to Zennavigator]

Canine Dewormer?!

[DJBUNK]

I believe there is hope. I was 56 at diagnosis and RALP. Initial PSA was 5.6, G9 (over 50% of cores), negative margins but seminal vesicle invasion, and one lymph node discovered during surgery. My PSA rose very slightly 6 months after surgery to 0.03 but based on aggressiveness, lymph node involvement and high risk Decipher, adjuvant radiation plus 24 months ADT followed. It's been 44 months since surgery, 33 months since end of radiation, and 15 months since end of ADT. Since ADT started, my PSA has been undetectable. My oncologist, when I pressed him, said 60%-70% chance of a cure (and yes, I know that's just a guesstimate but it was more reassuring to hear those odds than something more like 10%).

As others have said, diet, exercise and a healthy lifestyle are all important. Hang in there.

[103532 in reply to DJBUNK]

May you continue to respond to this treatment and be cured!!!

[Peppertree602]

I had RP 3 years ago and pathology was not so good. Gleason 9, T3b with left SVI only. Negative margins! Negative lymph nodes but Intraductal and para neural invasion. Decipher was a .41 which is low but close to intermediate. first PSA post op was undetectable so RO and MO recommended waiting. So far at 37 months post op <.01! But I made a TON of changes, whole food plant based with fish, no dairy, no eggs, no sugar. fruits, veggies and nuts for protein, I am 90-95% on this diet since impossible to be 100%. Also do RGCC protocol and my CTC count went from 4.8 to 3.2 with these infusions. I am a huge believer in alternative treatment BUT ONLY as supplemental and NOT primary. My MO & RO are both fine with what I do since this is supplemental only. I bought a BIO mat with PEMF as well. Again i believe there is no downside as long as one does not go crazy and focuses on this and forgets the main therapies. Also I hit the elliptical hard 6 days a week for 37 minutes and then do weights. In addition I am a tennis player so a good amount of exercise. My RO said 90% of folks (her experience) with my pathology need additional treatment and she said I am in the 10% club

[Justfor_ in reply to Peppertree602]

Exactly the same pathology here but on the 90% group.

[103532 in reply to Peppertree602]

You are truly having excellent results with your lifestyle changes. Praying you stay in the 10 percent club forever!

[Huzzah1]

I am cT3bN1M0 with 3 lymph nodes involved - I am coming up on my 1 year date for my first Lupron shot. Also on Abiraterone + P for 1 more year. Also had 44 IMRT that ended in Oct. I've seen a lot of Dr's to put my team together. At the end of my visit to MD Anderson in Feb, I asked what they thought the chances were for this being a curative treatment. They had the same response as my local MO - 50% chance for this to not come back. BTW, with regard to lifestyle, they have all that staying active and working out is very important. None of them have suggested a change in diet and laying off alcohol. When I've asked, they say there is no definitive data that shows a difference.

[103532 in reply to Huzzah1]

MD Anderson is an excellent organization and I believe the best for prostate cancer. Best wishes for a definite cure for you!

[lowT163 in reply to Huzzah1]

I had mostly the same treatment there but my RO told me to do the Mediterranean diet and stay off the red meat.

[timotur]

Dec'18 dx: t3bN1M0 +SVI, mesorectal LN, GL(3+4) PSAmax:33, PIRAD-5 lesion.

June'19 tx: HDR-BT, IMRT, and 18-mos ADT. (Chang/UCLA, Eintz/SD). Last Lupron shot was Sept'20.

Since then, PSA <0.02, T: 700

I eat a Mediterranean diet, exercise a lot-- run, swim, or tennis before breakfast, and still work full time at 68yo in finance. Trying to make it hard for a relapse by controlling insulin levels, eating less diary/eggs, less animal protein, and no alcohol (well, one or two beers a month). Had exceptional treatment with Chang/Eintz, would take the same path. Two years ago, Scholz gave me 50/50 chance for a cure-- his criteria is <0.05 five years after radiation tx, I'm at four years now.

[103532 in reply to timotur]

I will share this with my husband …the steps you are taking are very inspiring. You are so close to being cured. May this trend continue.

[j-o-h-n]

Cure is a four letter word that we rarely use around here............we usually use the word remission instead.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/05/2023 8:19 PM DST

[103532 in reply to j-o-h-n]

Thank you! Long live remission!

[j-o-h-n]

And long live everyone with a six digit zip code....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/06/2023 5:56 PM DST