PSA 700

Hello everyone. My father ( 63yo) was recently diagnosed with stage 4 prostate cancer with “severe bone metastasis”. He has been largely symptom free and still working out everyday. It has been a huge shock to the family as we just got the news a few days ago after being confirmed by a pelvic MRI. He has not had a full body scan yet to see if it’s anywhere except for his pelvic region, but with the levels this high that’s definitely the concern, but he just met with an oncologist to try and get a game plan but I have a few questions for anyone that can help

1. Has anyone experienced or heard of a PSA level this high?
2. He has been advised to start on Lupron which seems to be the best and only real option. As I mentioned he loves to workout and has everyday, is it reasonable to expect him to be able to continue to working out everyday? He does a lot of CrossFitish workouts like pull ups, push ups, planks, burpees, rowing, etc. he doesn’t do any kind of heavy weight training
3. For those if you who have been diagnosed with stage 4 cancer, how did you want to be treated? Business as usual? Talk about it or not? I’ve tried to just match his attitude, but know that he will mentally sink at some point and what should my response be?

Sorry for the long winded questions it’s newly diagnosed and I’ve gone back and forth between total despair and optimism so I can’t imagine his emotions

Welcome and sorry to hear this. As I'm sure you're aware, that's not a great diagnosis, but on the plus side there are so many options available to your dad. First off, the Lupron is highly likely to stop the PCa in its tracks--in most cases for many years. And during this time, you can assess other treatments--plus additional therapies are always coming forward.

Lupron will make it more difficult to keep up his physical regimen, but if he's as dedicated as it sounds, I think he'll be fine. I am not at all physical person, but during my Lupron time I went to the gym three times a week and managed better than expected. In fact, it's recommended that you keep as active as possible while on Lupron to keep muscle mass and energy levels intact. The Lupron also typically shrinks mets so any bone issues would be on the back burner. (You're likely aware that PCa feeds off testosterone, so you're cutting off its food supply.)

Re your comment about total despair...he has a tough diagnosis, but we've seen guys here with similar diagnoses that are doing well after 10+ years. While it may not necessarily be easy, your dad could certainly join them in the long-term club and keep living his life.

While 700 is extremely high we have had many members much higher. One, Todd1963, was diagnosed about 12 years ago at 3,216 and had extensive bone and lung Mets. He is still going strong thanks to many great treatments. Some others have not done well. It all depends on the individual and the specific grade of the cancer as measured by the Gleason score. At this stage it is not curable, but most often can be managed for some time. He will need a complete assessment including a Gleason score that will tell the docs how aggressive the cancer is and will help direct treatment methods.

Lupron is the starting point and I hope he had a two week course of Casodex preceding it. Some oncologists will introduce Taxotere, Zytiga and/or Xtandi in combinations in advanced cases like this. Another immunotherapy called Provenge is also often used. In other words, you must get aggressive with the treatments. I would also look into clinical trials that may provide access to treatments not yet readily available.

He needs to be with a great medical oncologist that specializes in prostate cancer and has worked successfully with cases like this. Where is he being treated and what do you know about the oncologist? If your doc says “we have never seen PSA this high” it is time to get to one that has. We can help with that if you need some direction.

Lupron stops the body’s production of testosterone. That will initially starve the cancer and should reduce the PSA and the tumor load. Side effects are similar to a women in menopause. Hot flashes, weight gain, loss of libido, fatigue and brain fog are all common. The degree will depend on him. The most effective counter is physical activity. Great for him that he is already strong and in the habit. It may be tougher for him but he should do all right. I was on Lupron for just over three years and it never got in my way, just an inconvenience, though for some it becomes a real problem.

It is great he has you. I did my own research and have always been open about the PCa. Some men choose not to be open. Some have another family member do the research and provide direction. I have found this forum to be most valuable and that is why a I am here after nine years since being treated. Many others have been here a long time and have seen a lot. This experience can be very beneficial for you and him. Please lean on us a lot. We are a friendly group and will do what we can to help.

And essential to the process it to not worry about the past. Obviously he was not in a PSA screening regimen as his cancer has been working and detectable for many years to get to this point. What matters is that you now know and are getting on the active, forward thinking treatment and lifestyle management that will bring the most positive results. The mental approach is just as important as the physical and it is vital that you and him are at your strongest. As one member always says “every day is a gift”. So use each day wisely.

Best wishes,

Jack

Ps, AusTex tells me where you might be. Our sons spent a lot of time there. If I were in that area I would be at MDAnderson. They have a great reputation treating advanced stage PCa and many of the men on the forum have been treated there.

As several of the guys have said probably the number one thing is that your father finds the best MO that deals with advanced Prostate Cancer and the best facility that he is able to access. Also as the guys have said I would think that starting immediate Lupron would be part of the plan. Every day there are new trials and treatments that are becoming available that are keeping guys like your Dad alive and enjoying life. Things will change from the Lupron treatment some of us have experienced not so nice side effects but we are still here enjoying our families and doing things we like to do. Wishing your family the best in your treatment journey! Keep us in the loop.

Larry

Sorry guys I hadn’t seen the most recent responses.

Yes he was seeing a local oncologist but is heading to MD Anderson tomorrow because that’s obviously the best place to handle a cancer diagnosis. And the local doctor said they could implement whatever treatment plan MD comes up with.

He is currently taking Bicalutamide to get ready for the Lupron. He has been on this medication for one week now.

I can’t tell y’all enough how much I appreciate each reply. I’ll look into the articles posted above.

I hate to bring this up but make sure your Dad's health insurance is up to the task your dad is facing.. You don't want any nasty surprises later on..Find out what your co-pays and deductibles are NOW..

Hang in there. While I didn’t have a PSA higher than 60, I had a dozen bone and lymph mets 2 1/2 years ago and did the Casodex - lupron - taxotere chemo - Zytega + prednisone path. Mets were reduced by 95% last year. I may be switching to xtandi next as PSA has decided to go back up- from 0.4 to 0.7. It’s a journey that thankfully has many effective treatments and new ones on the horizon. You dad is very lucky to have you. Best of luck.

AusTex - I am sorry you are going thru all this. JNF's reply was outstanding. FWIW, my PSA right now after 4.5 yrs of fighting is almost 1100. I've been through several treatments and am currently on Jevtana. These have given me wonderful times. My PSA is even going down for the first time since May 2018. Yes there were pain issues, especially at the beginning, but morphine has controlled that and there is really a lot out there to help. It just takes some time to figure out what works for each patient as everybody's cancer is different. The road is no cakewalk, but you all can do it. Many great years can be had as others have said.
I have chosen to be very outspoken about my cancer and am very happy with that choice. I have felt so much love from various people. And I have gotten so much real support from folks, I can't imagine trying to go through everything without being willing to ask for help when needed. There are ups as well as downs with the emotional roller coaster we are on. I wish you all the best on your journey with your dad.

His reaction to Lupron is not conditioned on the duration of the shot. So the MD is a bit out of his league here. The only difference between the shot lengths is the frequency they must be administered, not in the effect or side effects. I had an initial reaction to Lupron in that I quickly developed a case of guttate psoriasis on my legs. It subsided after a few months and never returned. It is to be expected that your father will experience side effects. Stay in touch with the oncologist and work with them

At MD Anderson you are with one of the top groups. In your close area you can also consult with Dr. Oliver Sartor at Tulane in New Orleans. He is one of a handful of top tier medical oncologists in the world that specializes in advanced PCa. You can always initiate contact with him for consultation.

The Lupron induced testosterone spike is mitigated by the initial course of casodex. The main concern with the T spike is that it can accelerate met growth particularly in the spine resulting in spinal compression. That he had the initial course of casodex, this should not now be of concern. Relief from bone pain will come as the Lupron helps shrink the Mets. Additionally there are radiation therapies that can help with the persistent bone Mets. This should all be on your discussion list for your oncologist at MD Anderson.

Lupron and its generics is the frontline treatment for advanced PCa. Usually it is best to see the response before moving to additional treatments. If the Lupron provides a positive initial response, then stay with it as adding other treatments will usually introduce additional negative treatment side effects. Usually you will know within a few weeks where there the Lupron is effective. Hopefully you will see diminished bone pain and reduced PSA. It does take a little time.

Thanks for the update. Great to hear he is responding well to treatment!

That's good news, for sure!

With very high PSA and extensive bone metastasis, treatment with Lupron only may not be good idea. Adding Zytiga or Chemo could be a good idea. A full body bone scan and PET/CT scan would be necessary to establish whether cancer has spread to other parts of the body.

Hello AusTex,

I was diagnosed in my 40s with a PSA over 100 at diagnosis. By that time, the cancer had infiltrated both my lungs.

With the expert care of my doctors, and a series of treatments, I just celebrated my seventh New Year's Day since diagnosis.

For me, there is no substitute for the importance of family, friends, and faith --- and this forum, as well.

My treatments are revealed below. Pursuing these treatments has allowed me to achieve my health goals. My doctors are a Godsend to me.

I share with you and your dad this message that pursuing proactive treatments creates HOPE! I'm thankful for the significant drop in your father's PSA level from his initial treatment.

Let us know how your dad is faring, as his treatments continue.

We stand beside you and your dad, as a BAND OF BROTHERS!

With my best to you and your dad,

Cyclone --- Iowa State University