Please HELP! Scared for Dad:(

Hello everyone,
I am new to this forum. I have heard wonderful things about all of the support being offered and I am hoping to get some information on my dads situation. Any feedback would be greatly appreciated.

My dear dad was diagnosed in October 2014. PSA 4.6 and a Gleason 9. Cancer had spread to the outer part of the prostate. He was put on Eligard every 4 months for 2 years by his urologist. (Who I have just replaced by an oncologist because of his terrible bedside manner and negligence). He had radiation in the summer of 2015 and end of Aug. he had a PSA of 0.2. It went up to 0.4 in Nov. 2015. Dr asked to test Psa 6 months later. May 2016 up to 1.8. I started to worry because of the rising Psa and all the info I've been getting online. Dr insisted nothing to worry about and said ill see him in 6 months!! We went to Europe in July to visit family. He felt OK but started pain in the hip area. As soon as we returned, I didn't wait till November, i pushed to have Psa tested in September and it was 6.7. He had a bone scan in October and Bone mets in shoulder, pelvis, spine and thoracic. I couldn't believe it. He was put on Lupron only (4month dose) Nov 1st and Dr asked to see him in 3 months for Psa and another scan. After speaking to a friend who is on this forum, I made his family physician re-test his PSA sooner because his Urologist did not agree. Mid December- Psa 11.5.. I contacted Urologist with results and he saw him on Dec. 23 and added Casodex 50mg once a day.
re-test PSA 3 weeks later Jan 16, 2017 down to 5. Unfortunately, he had a fracture in the L2 on Jan 20 and is now hospitalized and awaiting radiation 5 sessions on 1 spine lesion and 1 session on another to relieve pain. He will also do a kyphoplasty to help lower back. Hes on dilaudid 6mg for pain and Lyrica as well as other meds for heart disease, blood pressure etc. Hes now mobile and awaiting radiation on Monday Feb 6. Hopefully he will go home the week after. I finally got an oncologist to follow him since hes been admitted. I spoke to his urologist two days ago and he told me that his prognosis is not good at all. He did not explain why or his concerns. He did not even know that the PSA dropped to 5 after the Casodex was added. I had to tell him. He was rude and heartless. He dismissed me and told me he has nothing more to say. The nurse went on to tell me that he needs to go on medication for the bones and to make sure dentist clears him of any issues. I am heartbroken. I thought the drop in Psa was good news. Please help! Is there any hope for him? Does he have a chance at a few more years? He's trying to be so positive in front of us. He's got a great appetite. He believes he will be OK. I feel so helpless and I blame myself for not changing Drs sooner. He's my hero.

welcome to HW, sorry you need to be here.

That's a URO you need to fire. Glad you've got an oncologist on the case. First get a medical team who will treat this seriously. The RT will help with the mets as will the meds, but the nurse is right that other meds like need to be added.

You're the best thing you father has right now - a strong advocate for him. Learn all you can and keep pushing his doctors.

Others with more knowledge of advance cases will be along soon with better info.

Hang in there,
Andrew

Sandy,
Welcome to you! Your dad is so lucky to have you here to advocate for him. Where are you located? You most certainly need a good and knowledgeable MO for your dad. Don't despair and don't blame yourself for the uro dropping the ball here. Happens a lot, unfortunately. There are a lot of tx options that you need to explore and discuss with the oncologist. But there is hope. TA will probably chime in with the best options for you to discuss with MO and some ideas for a good treatment center near you. For sure Prolia or xgeva should be considered. Chemo or zytiga may be a good option. And BTW, a big drop in PSA is a good thing. But those bone issues need to be addressed. Best wishes.
Beth

Hi SandyMilo,

I'm sorry to hear about your father - he's been through a lot.

The good news was the very good reaction to ADT. Together with the radiation and the bone-building medicine (Zometa or Xgeva), that should help a lot with the pain.

I do have a suggestion for a medical oncologist in Montreal - Michael Pollak at Jewish General Hospital. He is plugged into many clinical trials for prostate cancer. When there are multiple metastases like your father has, and the response to ADT has been this good, it is often a good idea to start with Taxotere chemo ASAP. In the CHAARTED trial, starting it sooner added a year and a half to survival over waiting. Adding Celebrex to the Zometa has been found to increase survival by 20% in the STAMPEDE trial. These are good things to discuss with Dr. Pollak.

Let us know how it goes.

I can't add much in the medical advice area, but I do this it's fantastic that you are advocating on behalf of your Dad. (And it touched me to hear you call him "your hero.") At this point, don't despair. In my time here I have seen some guys with very difficult diagnoses continue to do well for a very long time.

I am so , so sorry to hear of this . My heart goes out to your Dad. I know all too well about a Dr saying not doing good follow-up .My Urologist took 10 yrs of watching me have trouble urinating before finally doing an MRI and luckily we caught it before it broke out of the prostate. Perhaps the technology is finally catching up everywhere in the country. Similar to your dads situation is my Brother-in-law had the same problem of PSA starting to rise a year after prostatectomy . The Dallas Texas Doctor immediately did a special MRI called a PET and it found a tiny dot on his spine . They did targeted radiation on it and he has been okay now with zero PSA for several years. I don't know if PET scan was available back then ? I hope things are better much better for him To all that read this : If PSA exists after prostate is removed it needs to be found in a timely manner no matter what .

MODS
This is an older thread from 2017 so...??? .

very sad that thye did not switch from that Urlogist sooner.

Gonna lock this thread. The original author of this thread has not signed on since the day she/he joined the forum in February 2017