I returned from MD Anderson yesterday. Recall I had PSA of 227 at diagnosis. Gleason 4+4=8. 1 met in T8 vertebra. Had radiation to my spine (tremendous pain), early chemo (Stampede study), and been on Lupron since diagnosis in May 2015 at age 53. PSA dropped to undetectable for a year and a half. Then rose slowly to 1.8 before I started Zytiga in December. Now back to undetectable.
MY NEW TREATMENT PLAN
In December I had a PET scan, prostate MRI and circulating tumor cell test. PET scan showed no active cancer outside the prostate and no sign of cancer in circulating tumor cell test. Diagnosis is oligometastatic cancer with 1 met that shows no activity.
I am going to have a robotic radical prostatectomy in July at MD Anderson. While this is ‘not the standard of care’, they are giving it a shot. The hope is that this will be curative (but of course no one knows for sure). And as numerous posts highlight earlier, we are several years away from having the facts to be more definitive if this is a good course of action or not. If my PSA stays undetectable for 6-months post surgery, I hope to stop ADT.
We had quite a debate regarding radiation vs surgery, but landed on surgery as the best option for me. It will ‘de-bulk’ (not proven to work for PCa, but a lot of examples where it does with other cancers), will help provide additional information for future staging, and preserves radiation for the future in case I need it.
I’m grateful that our doctors are adjusting their treatment plans to match their patient’s cancer. Not just using a one size fits all approach. I was told at diagnosis that ‘once the horse is out of the barn’ it does not make sense to remove the prostate. But clearly a lot has changed in 3 short years.
I hope my story helps. I’ll keep you posted on my journey. Thanks for all the valuable insight and information I get from my fellow warriors and caregivers!
James
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JamesAtlanta
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Good luck James. We are in not to dissimilar circumstances but have taken different paths in getting here. I was PSA 10.5, Gleason 9(5+4) at Dx and chose RP in March 2014, followed right away with IMRT because the post surgery PSA was .5. I only started ADT after a slow rising PSA reached about 2.5 about two months ago, and a lung met was found by a Gallium scan in Dec. 2017. I am now on Lupron, Zytiga and Prednisone. I am interested in following your results and wish you all the best. I think that makes me an Oligometastatic PCa as well
Wow ! This sounds like FANTASTIC news ! I am so pleased for you ! Your reports on the care you have received at MD Anderson has me leaning toward going there for another opinion, depending on what we find out at Vandy this coming week. Carry on ! Sounds like you are in a good place.
Hi. My hubby is being treated at Vandy also. May I ask which MO and urologist you all see now? We're considering getting a second opinion outside Vandy soon, just to know we've covered all bases.
We are now seeing Dr. Nancy Davis. Had our first visit with her back on Jan. 22 and will see her again the first week of March. We were very favorably impressed with her knowledge and “bedside manner”. I think we will remain with her as long as Jeff’s PSA remains undetectable. For now, he is experiencing minimal side effects from his current protocol (Zytiga/Lupron/prednisone). Being nearly 18 months into his Stage 4 metastatic diagnosis, we are of course holding our breath each time the six week visit (labs) roll around. He has eleven mets and last scans (also done during January visit) show no change in them. So for now, we remain at Vandy with every intention of seeking further expertise as his condition warrants. My inclination is to head to MD Anderson or Sloan Kettering. But honestly and thankfully, there are many great docs to choose from. Good to hear from you and hope you guys are doing ok (all things considered...).
Hi, Bobcat64. Sorry for the delay in responding, I just saw this message. My brain is in “social-distancing” mode. 🙃 We are still with Dr. Nancy Davis at Vandy. We go every six weeks and Jeff has labs and a visit with her. He has scans every 16-18 weeks. He continues the Zytiga/ prednisone along with the Lupron injections and his PSA remains undetectable. We are very satisfied with every aspect of the Vanderbilt experience. Dr. Davis is such a fine physician. I’ll be happy to answer any other questions you might have.
James, You. Have. Done Exceptional. MDAnderson agreeing to do the rp says a lot about where we are with this topic. I wish I had persued it. Early on myself. The way I see it, You will always know that you did all that you could to beat it back. You can have radiation after surgery, but much harder to do surgery after radiation.
Thanks for sharing your story James! Great to see the collaborative approach you've taken w your team. Good luck, and will look forward to following your progress. Best, Leo
Right on James and in the good words of Bob Dylan...."Times are a changin"
I'm on month number 15 of a postoperative <0.01 PSA and clean scans starting with Gleason 9, Stage IV. My doc recommended 2 years adjuvant ADT and hoping I just had my last 6 month shot. Heading to Mayo in May for yearly and will decide then.
Was a hell of a ride getting here but thankful for the path I took. Initially I was told inoperative, HT forever and 3-5 year time stamp. All I'm going to say is that all doctors are not created equal.
James, well done on making this tough decision. I am looking at Lutetium177 and I hope to get a good response. If I do, I am considering pushing hard for an RP. Ever since I was diagnosed, I've been told there's no point taking it out, but there seems to be a growing body of evidence that there is a point. Good luck and keep us posted.
Thanks for the information and the very hopeful prognosis with the addition of prostatectomy. I am on a similar path, Stage 4 at diagnosis in 06/2015 at age 65 with a single (now dormant) bone met to inferior pubic ramus, ADT with Lupron/Eligard, and just finished 6 cycle course of docetaxel last Tuesday. PSA undetectable. Been going to Mayo Clinic in Jax, where they are very good, but seem to be a little more conservative. So the addition of prostatectomy is very interesting to me. It would seem that debulking the primary tumor would have several potential benefits both in halting the disease and quality of life.
Please keep me posted on your prostatectomy. I plan to discuss it with my Mayo MO at my next follow-up visit. Can you tell me who your MD Anderson MO is? I would be interested in knowing the potential short and long term risks against the potentially great benefit, insurance coverage implications (I have Medicare and Blue Cross), and other issues and questions I might be able to discuss with my Mayo doc.
Congratulations and best of luck with your upcoming RP. Please keep us all posted on your progress. And I hope you will share your experiences with your RP. I’m going to want to learn as much as I can to be as prepared as possible for what’s ahead.
I was very inspired by Dr. Kwon’s youtube Video. It certainly increased my confidence this is the right approach for me.
For anyone else reading who are not familiar with the reference to Dr. Kwon, here’s the video I’m referencing.
Good luck James. I am heading down a similar road with RP scheduled for early May at Methodist Hospital in Houston. Also stage 4, one bone met, been on neoadjuvant ADT and chemo (finished 6 rounds of paclitaxel and carboplatin in January). Original PSA of 60 down to 0.34 at last test. Finding the right urologist and oncologist to get on board with this approach is key for those of us with oligometastatic PC.
Very interesting to me that some docs go with chemo and ADT for oligometastatic disease whereas others just go with ADT. Then with the ADT, there is also the questions of which drugs. There is also SBRT.
I had 4+3 (tertiary 5) diagnosis with RP in 9/2016 (55 yrs old). Recurrence and salvage radiation (should have done a scan first now that I know what I know). PSA was still rising. Had the 18-F PSMA scan at Johns Hopkins that revealed one met in the right hip and my MO at Dana Farber put me on Casodex and Lupron and we did SBRT to to the met. MO said disease volume is too low to justify chemo and will save Zytiga for later if needed.
After 3 months of ADT, PSA is undetectable, but I still wonder if chemo might have helped eradicate anything else.
Best of luck to you, too. Amazing how the treatment approaches are changing so rapidly. What I like about this forum is I think we, as patients, are accelerating the change by being informed and asking questions to our doctors. I think it pushes the doctors to stay on top of the latest treatment approaches.
I couldn't agree more. In my case my local doctors now commend me for making the decision to go to Mayo. My local Oncologist told me empowering myself with the knowledge I did and moving on it was actually inspiring to see. My experience and the direct result has curved their logic on the treatment of this disease. I still work with my local doctors and do a Mayo trip yearly.
All I can add is before surgery work hard every single day on Kegel exercises. I had DaVinci RP not that it makes a big difference but getting bladder control after the catheter and bag was removed just about drove me crazy. It's horrible to feel a a child again not having control of peeing.
I've had a couple or minor relapses of bladder control following radiation therapy and just went back and worked on the Kegel exercises again and now all seems to be fine.
Hello James Atlanta, I was diagnosed in 2016 at age 61 with multi-metastatic PCa (>5 mets, no visceral met), PSA ~30 and rising, Gleason 9. I reviewed the literature and found l reports on the potential benefits of "cytoreduction" (which is another way of saying debulking, I believe) and SBRT. I opted for the latter because of some reports from Vancouver showing an added benefit for patients on ADT, due to the potential for an abscopal effect (i.e., irradiating the prostate may promote, in less that 5% of cases, an immune response that suppresses the mets). I also determined that RT had fewer side effects and was more appropriate in the context of my possibly abbreviated lifespan. I see many fellow travellers opting for RP so that they can still be treated with RT at a later stage, which I think is a sound strategy. I made my choice for RT based on the information I had at the time and hopefully the benefits will be similar to RP. It should be noted that there are ongoing clinical trials in this area, which should definitively determine which is the better course of treatment. Cheers, Phil
Hi! Hope your husband is doing well! As for me, I had a great 18-month “holiday”. Then PSA started to rise after being undetectable for 3 1/2 years. I had a PSMA PET scan and they found 1 small met (0.6 cm) in my hip. Restarted ADT (Firmagon + Erleada) 2-weeks ago. PSA is already down to 0.22 and I expect it to be back to undetectable when I have my next test in 2-weeks. They plan to radiate my hip in a couple of months. With luck we will begin discussing another “holiday” in a year.
I have been fighting prostate cancer for 6 1/2 years. My oncologist told me last week I am doing “much better than he expected…” I have been very fortunate. And it illustrates how much treatment has progressed in the last 5+ years. Tell your husband to keep fighting!
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