Advanced Prostate Cancer
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New info from new oncologist

We meet with an oncologist here at Vanderbilt this afternoon regarding the formulation of a more aggressive treatment of my husband's Stage 4 (metastatic) prostate cancer. Quick recap : PSA 3.6 in April 2017 elevated to 9 by the time he had a biopsy done in June (2017) 12/12 cores positive and Gleason 8. RP (daVinci) preformed on Sept.13, 2017. PSA had climbed to 52 by time of surgery. Bone scans prior to surgery were "clear". They were done in July (2017). Post-surgery pathology showed involvement in two of four lymph nodes. He received first injection of Eligard on Sept.27. Oncologist here at Vandy tested PSA today and it came back at 0.9. He has ordered scans to be done in two weeks, as the ONLY scans Jeff had done are now six months old. Any thoughts ? We are sort of freaked out about the .9. Or maybe it is more accurate.

to say we are bummed. Would love any feedback from anyone on this forum as I have been following you guys faithfully since joining back in Novemeber.

Thanks !

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Don’t let the .9 freak you too much. Your husband has some good treatment options—and obviously a loving and caring wife. Best to you both.

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Thank you, YostConner. I guess I am feeling a bit uninformed/under informed and this forum is my go-to source. I have learned more from the folks here than anywhere else. I am grateful beyond measure for the support and advice. Best to you, as well.

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Consider your husband lucky.

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Thank you, nameless9999. Every step of this journey is still so unsettling. I appreciate your response.

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Hi,

My husband was diagnosed in 2010. You can look at my posts for more details. The pet/ct scan F18 didn't show anything until he had the Axumin pet scan on July 2017 that showed 2 lymph nodes in the pelvic area. He began Hormone treatment September with Firmagon, Zytiga and Prednisone. He switched to Lupron insted of Firmagon on December. PSA is now 0.1. Tomorrow we have an appointment with the Medical Oncologist to discuss Chemotherapy. I hope this helps. I understand what you are going through. Just relax and enjoy the best of life.

Sincerely,

Erika

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Thanks so much, Erika. I think one of our biggest fears is that we haven't hit this thing fast enough or hard enough and there's no reason to beat ourselves up over it, but now that we (FINALLY) have met with an oncologist, we just really want to start an aggressive treatment plan. (WHEW!). I really appreciate your response and will probably be asking for support, advice, etc. for as long as we are on this road. Best to you and your husband.

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We can relate to the worry about not treating it aggressively at the start (when you're feeling healthiest and strongest). I kept raising this with my surgical oncologist (citing the STAMPEDE trials for example). I was worried that he was cautious about new results and frustrated that I couldn't try multiple therapies at the beginning.

The more I talked to him, he made me realize that he was in fact on top of these (and other trials). For example, he was aware that for my cohort, those other studies didn't show any improvement (but introduced side effects and complications). I also spoke to several other doctors who reassured me that my oncologist was among the best and more on top of (and involved in) current research than most.

If you have a good relationship with another doctor (say your family doctor), it might be worthwhile to get their help in writing down the questions and concerns you have about treatment. My family doctor has offered to do this to help me navigate the technical and scientific terminology and thinking.

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I feel that you found a fast growing cancer very very early, but it is no longer early today. I think you are right to be bummed, and that almost certainly the adventure is not over.

Dr Kwon in Rochester Mn at the Mayo Clinic is aggressive and has good imaging for locating mets. Worth it trying to see him. May need to make repeated efforts.

Otherwise, learn the types of imaging available, and maybe figure out if lymph mets are the priority or bone mets. Get fluent on clinical trials.

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Thanks for your input, martingugino. I have read some other favorable reviews of Dr. Kwon. And although we are hopeful that the scan will be clear for bone mets, we are trying to prepare for that not to be the case. And it is difficult to know how to proceed...many different schools of thought. Thanks for taking time to respond. And best to you.

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Sure. Here is a clip of Dr Kwon, just for your enjoyment.

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Thanks a million !

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My good wishes for you and your husband. Try to breathe. Also take care of you. You will get ill if you don't. These beautiful souls will help you and your husband. Try to do relaxing enjoyment. There are more treatments. Sending huge hugs with OPTIMISM.

Diagnosed 2003 ... doing well 2018

Most sincere,

Jackie

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Thank you so much for the encouraging message. Everything seems overwhelming right now. This forum has been a godsend. Warmest regards,

Julie

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💖

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Hi Julie

I am delighted to see your husband progressing well with your oncologist advise after his RP.

Wish your husband journey is filled with more success,

As for me I am still stubborn so I will wait till end of the month to finalise my mind.

Earlier I contradicted Nalakrats.

This morning I had a Vetnamise bread roll and half an hour ago I consumed 500 g roast pork. I then had a bowel which is soft. I am still pain free and fatigue free mainly I am able to control my PH of urine and Saliva.

Over the last 2 months my PSA went from about 16 to 26 on blood tested 2 January 18.

Apart from my haematuria there is no infection.

I also like to add that I have a very qualified doctor who has branded my treatment a failure but now agree to play along.

So lately I am feeding my daily urine test with combur 10 (cobras) to keep him informed so I do not unnecessarily cause harm to myself,

Thanks for your attention.

Roland

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Your husband's PCa though Stage 4 is still hormone sensitive ( Not CRPC ). Give some thoughts to the findings of STAMPEDE, CHAARTED and LATITUDE Trials which recommend the early use of combination therapies with significant long term survival benefits. Combination : Lupron + Zytiga with Prednisone or Combination : Lupron/Zytiga with Predinisone + Docetaxel ( chemotherapy ) . These aggressive treatments are associated with side effects. But don't worry, your husband's pathological factors are much more favourable compared with that of most of the fighters here and you will learn soon enough from our daily chats how to face the brunt of it. We are with you. Be optimistic.

Good Luck and Best Wishes to both!

Sisira

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Thank you, Sisira. We are still in the overwhelmed/bewildered state. No question, we should have sought more aggressive treatment much sooner. We just trusted what the urologist/surgeon recommended, which was simply quarterly injections of Eligard. Period. End of story. We asked him about Zytiga. And chemotherapy. He said my husband was not a candidate for either. The more reading we did, the more we realized that THAT simply WAS NOT the case. This forum has been THE SINGLE MOST HELPFUL source of information for me, by far. I so appreciate your response. Warmest regards.

Julie

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Julie,

Your urologist surgeon like the majority of them including mine wants to follow the SEQUENCE in treating the PCa. Now the paradigm has changed and the best treatment should be given upfront. Earlier the better. Besides, a urologist should not undertake the full responsibility of treating a Stage 4 PCa. He may be in the team but definitely you must have a well experienced oncologist who is specializing in treating PCa. Start the journey on a strong footing and gain more will power and confidence to help your husband.

I admire your role and extend my Best Wishes!

Sisira

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