As usual, I'm having trouble breathing in the days leading up to the next doc appointment and PSA test. Questions that run through my mind:
- Are we doing everything we should at this point?
- Would a prostatectomy prolong life? At a higher quality than he'd have otherwise? (husband is reluctant to have it and doc is neutral).
Should we pursue a second opinion at MD Anderson or Sloane-Kettering at this point? Somewhere else?
Would love insights/suggestions from those of you who are very knowledgeable. Thanks for all that you share and the time you spend helping so many of us.
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Here's my husband's history:
PSA Sep 2013: 2.4
PSA Oct 2014: 3.6
PSA Oct 2015: 5.4 (doctor forgot to follow up or refer)
PSA Nov 2016: 13.2
(referred to urologist, thankful we had to move and therefore saw a new doctor)
PSA Dec 2016: 17.1
Bx January 2017: 1/12 pos, 15% in one core
G7=4+3 (Vanderbilt); G8=4+4 (Johns Hopkins)
Bone Scan showed lesion on L1 vertebrae, biopsy confirmed
Retroperitoneal lymph node involvement confirmed with CT
Lupron started 4/2017
Taxotere -- 6 cycles - finished 9/2017
PSA 9/2017 = .2 ng/mL
Started Zytiga 10/17
Stopped Zytiga 1/18; liver damage
PSA – UNDETECTABLE since 2/2018
Quarterly Lupron injections continue
Scans between 2017 and 2019 show everything is stable
Symptoms, primary fatigue and hot flashes, are manageable. Aromatherapy and acupuncture have help tremendously with hot flashes. Effexor had a negligible effect.
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Again, THANK YOU, for any insights and suggestions.
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TNCanuck
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That sounds great so far. The recent STAMPEDE showed there was an advantage to early prostate radiation. Now, this is not "early" but radiation of the prostate, the pelvic LNs, and the spinal met may be beneficial. You should talk to an RO about this.
Thank you. Was hoping you'd be able to respond. We saw Eric Shinohara at Vanderbilt a while back. He was surprisingly very ambivalent about doing radiation and said the side effects might outweigh the benefits until there were symptoms that required therapeutic treatment. So maybe it is time for a second opinion on that, at a minimum?
My husband is otherwise very healthy and the idea that we could be more aggressive without significantly sacrificing QOL causes me to lose sleep.
Please let me know if you have any other thoughts. Thanks again!
We believe in being proactive and aggressive in treatment (within reason), so I will respectfully disagree.....especially after my husband's appointment this morning. The STAMPEDE trial (mentioned above by Tall_Allen) shows superior survival and progression-free results when radiation is added to ADT at this point --- when there are limited metastases. When I mentioned it, the doctor told us he planned to bring it up anyway since my husband appears to be the ideal candidate for this treatment. We'll be meeting with a RO soon.
Another question: My husband stopped drinking completely about a year ago to get ready for Zytiga again in the future after the first try was ended because of bad liver labs. Would now be the time to give Zytiga another shot?
You were spot on, as I knew you would be. We'll be meeting with an RO as soon as possible. Thanks again for sharing your incredible wealth of knowledge with all of us.
And ---- we just got test results from this morning. PSA is still undetectable!
My husband was just diagnosed - Gleason 9, likely spread to rib and pelvic lymph nodes. His MO at Johns Hopkins is starting him on ADT + Zytiga and then radiation after a few months of those. His plan is to be just as aggressive in the initial treatment as the cancer is. If all goes well, he hopes to have my husband drop ADT + Zytiga therapy after two years and then monitor from there.
smileyva.... Would you please furnish us with more data regarding your husband. Age, Location, Doctor's name(s). All info is voluntary but it helps us help you both and helps us too. Thank you.
Sure - he is 53, we live near DC and we see Dr. Markowski at Johns Hopkins. We attended their multispecialty prostate cancer clinic and met him there. He practices at both JH in Baltimore and at Sibley in DC.
My husband was just diagnosed in September. Started Eligard in October and will add Zytiga/prednisone next week. His PSA has dropped to 2 from 11 with just Eligard and 30 days of bical.
We will be doing genetic testing as well since my husband is young and it is so aggressive. We will meet with one of the JH radiation oncologists in January to determine a plan for radiation and then we will have the radiation done at one of our local centers closer to us.
Thank you for your quick and detailed reply. You may want to copy and paste it on your home page under your user ID for future reference by our members. Hopefully he will beat the beast. Keep posting here, this is a good source for information. Regards and keep smiling.....there in Virginia.....
I would suggest seeing a RO about L1. SBRT may be a possibility. I'm a gleason 8 stage 4 and had IMRT to the prostate and prostate bed and SBRT to T 3. Zytiga dose is now 500mg per day and liver function normal. I'm 75 yo and latest scan is clean and now undetectable. Best wishes. Bob
The timeline and treatments are pretty close to what my husband has gone through except that his initial PSA was 75 and he had 3 bone mets and multiple huge lymph nodes. He's still on Zytiga/Lupron and PSA stable at .01. I can't help but wonder if we were too aggressive - casodex was bringing his PSA down when Zytiga was approved for earlier treatement so he chose that instead. Maybe it would have been better to wait on the Zytiga. I'm not hoping for a cure, just a good quality of life which he has now - he's still working, playing guitar in a band and recently lost 20 pounds with diet and exercise.
That's good to hear. Great PSA number. Who ever thought such a tiny number would bring us such relief?! I don't think you were too aggressive. Zytiga can be used again later if needed. Not sure of the extent of your hubby's nodal involvement, but radiation might be an option also. Wishing you all the best!
20 lbs, Diet and exercise..hmmmm? Could be he's watching at all those gorgeous women dancing while he's strumming... Remember, "every man has a woman, but the guitarist has his pick"...
I write to you with no knowledge whatsoever of this condition and as you well know others on this site have a breadth of information and advice and have provided you with lots of support. However, just before opening your post I was searching for something else and came across an article written in 2018 from the hospital we attend for my husband's condition and thought 'I've never seen that type of prostrate cancer condition mentioned before' - then I opened the postings and saw it in your information and was surprised.
You might like to have a glance through it in case it provides you with any useful insights..... if you google drhaddaad.com.au and then search for the article titled....The role of radical prostatectomy in the management of oligometastatic prostrate cancer. It was written, I think in 2018 so not sure if things have changed much since then.
I wish you well in your search for the best way forward.
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We saw Eric Shinohara at Vanderbilt a while back. He was surprisingly very ambivalent about doing radiation and said the side effects might outweigh the benefits until there were symptoms that required therapeutic treatment. So maybe it is time for a second opinion on that, at a minimum? 
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