hello

Hello Long way to go.

Not a good situation with an amazingly high PSA. Have you had a prostate biopsy? I assume you have not had regular PSA tests. We have seen higher PSA, but not many. The pain could very well be the cancer as the spine and pelvis are where the spread often starts.

Where are you? Who is treating you? Have you had any medications like casodex?

This is not to alarm you, but it is time for all hands on deck. You most certainly need to be in the hands of a very well experienced prostate cancer specialist medical oncologist. There are a handful in the US that are well experienced with a diagnosis like yours.

Best wishes and glad you found HW,

Jack

thank you for the replies...I am in the
south florida area

Longway, welcome, sorry about your diagnosis and very high PSA.

First, know, that with good, experienced oncologists, who are experienced in treating Advanced Prostate Cancer, you could do very well for a long period of time.

Second, assuming you are googling a lot, you will come across many different kinds of statistics. Pay no attention to them. Statistics apply to large groups and are irrelevant to any one individual

Third, not sure if you are in Southeast or Southwest Florida, if Southeast, consider Cleveland Clinic in Weston. John Greskovich is a highly regarded Radiation Oncologist there whom i have seen, and member Garyi has treated by. You will probably however, want to meet with a Medical Oncologist who specializes in Prostate Cancer, and with that i cant help with names. No doubt others can and will chime in soon.

As JNF mentioned, we have had some others with super high PSAs at diagnosis, who have done well. One that comes to mind, is Todd1963, who was diagnosed at a young age with a PSA of 3200 and widespread metastasis. That was, i believe about 12 years ago, and he is doing fine now. You can find his posts by typing Todd1963 in the search box.

Good luck keep us posted and stick around you will get great advice here, far better than i could give as a non expert, and also plenty of support.
Hang in there.

Hello, LongWayToGo ----

You have found a band of brothers here.

As you await further diagnostics and scans, we are here to offer encouragement and support.

We have all stood where you stand today - characterized by worrisome thoughts, anxious feelings, and sobering uncertainty.

As others have advised, you will want to put together a top-notch medical team. Have you had a biopsy?

I was diagnosed in my 40s, with a PSA over 100. I am a teacher and a new school year had just begun.

I knew I had to fight like I had never fought before. Further scans showed even more sobering news ---- my prostate cancer had metastasized and infiltrated both my lungs.

My PSA was climbing quickly, every time they retested it.

When I was first diagnosed, it was hard to think straight. I couldn't sleep well at night. There were endless scans and tests. It was like being caught in a whirlwind ...

I focused on teaching at school, and that carried me through.

I remember wondering if I would even make it to Christmas that year.

My doctor then said, "You are now my youngest prostate cancer patient."

In my case, treatments were needed RIGHT AWAY.

I got started on treatments IMMEDIATELY, and my PSA began to decline more rapidly than I could ever imagine. I knew I needed an aggressive treatment plan.

I asked insightful questions every time I saw my doctor, I began learning more about my treatments, and a battle plan got put in place.

There were tough days, but I finally started hearing some HOPEFUL news from my doctors.

You have to be prepared to FIGHT, but I discovered treatments brought newfound hope.

Somehow, when facing a diagnosis, something arises within us ... I see it here, every day ... gritty determination, steely resolve, and ultimately a fighting spirit begin to emerge.

I am now starting my eighth year of survivorship. I have much to be thankful for ... and I am mindful of others who face a health diagnosis.

My medical history is revealed beneath my signature at the bottom of this post.

No matter what, we are here to support you. Let us know what your upcoming tests reveal. We're here to stand alongside you.

If there's a new fight to be fought, we will get down in the trench & stand next to you and be your battle brothers. No one here fights alone!

We'll share our first-hand experiences, to help you navigate any treatments that might be in your future, when you get some definitive answers, following your tests.

I have put together a medical team that looks after my case with care, compassion, and concern. I sought out the best doctors and it has paid off.

We discuss every aspect of my treatments, I am fully included in decision-making, and we constantly look to the future.

They have guided me through proactive and aggressive treatments. I am thankful for these treatments that have helped me so much ---- and the wisdom and compassion of my doctors.

I just celebrated my eighth Christmas since diagnosis ... and yes, there's a few MORE candles on my birthday cake these days.

Keep us informed when you get all your test results. Posting here, as you have done today, is a tremendous step forward.

Fellowship, brotherhood, and camaraderie abound here.

We all have a story, and I hope something in my story will resonate with you.

I can already sense your courage and conviction in your posts ... and you'll be ready to grab that silver sword & shield and walk forward onto the battlefield, if need be ...

I will watch for your next posts ---- and we are here for you, rest assured.

Handshake, from across the miles ~~~
CYCLONE --- # Iowa State University

longwaytogo said...
Pratoman, thank you for the support and encouragement....had to stop searching the web as it was discouraging. I am totally committed to fight this with everything I have....I have a lot to live for and plan on being here for awhile! Specifically, as to where I am, I am located in the West Palm Beach area. I feel like this is a good place to be. I found some encouraging posts from Tony Crispino in relation to those with very high psa......some much higher than mine......definitely gives hope.

Longway, I am in Lake Worth, right off 441 on Hypoluxo. In addition to Cleveland Clinic, Sylvester Cancer Center also has offices in this area, Deerfield Beach is the one I am familiar with, there might be others. Again, like CC, I don’t know specific doctors here, I’m a snowbird and was treated in NY.

At your stage it is nearly certain that you won’t have surgery and probably not radiation therapy either to the prostate area as neither would be curable. If you are having bone pain problems from the metastasis then spot radiation can help relieve pain and potentially spinal compression, but won’t stop the cancer. The scans will help clarify that sItuation.

Thus, the urologist and radiation oncologist are not the specialities you should be seeing. You need to see a top medical oncologist that works primarily with advanced and difficult prostate cancer situations. Be prepared to travel to find the right specialists. Two at the top treating such situations are Dr. Oliver Sartor at Tulane University in New Orleans and Dr. Eugene Kwan at Mayo Clinic. Also, there are some at M.D. Anderson in Houston. Often such doctors will provide an initial assessment and develop a treatment plan, and then collaborate with a local oncologist to actually apply the treatment. I would be getting in contact with them to investigate the possibilities.

You will most likely need to very quickly pursue systemic treatments starting with Androgen Deprivation Therapy. Please see Cyclone’s post and take him very seriously. He had very high PSA and metastatic PCa and you can see the treatment regimen that he has pursued successfully. Additionally, the treatment is likely to use various types of chemotherapy and immunotherapy.

Don’t wait around. Learn about the situation and take control. Many here can help you with the process. You can actually make contact by email with specialists and don’t have to wait for normal business hours to get their attention.

HIGHLY recommend Dr. Edward Becker in Wellington, FL!

Best of Luck!

NJ Fred

Again, thanks for the help guys....I know my back is up against the wall but I have always been a fighter.....this is just going to be the ultimate one!....My goal up front is to get through a couple years and keep progressing in 2 year blocks, hopeful of something new medicinally along the way that will improve the long term outcome. One thing I have heard is research and new developments in stage 4 prostate cancer therapies are really moving along.

Cyclone.....I am going in for imaging this Friday, then have urology appt on Feb 2.....I am sure he will schedule a biopsy immediately based on what the mri is prob going to show along with my high psa and back pain. So I should have everything completed within the next 3 weeks, including my initial treatment plan. In addition my Primary physician...seen him for 30 years, friends as much as doctor/patient.....is good friends with one of the leading oncologists at the Sylvester center in Miami and can provide guidance along the way.......as i mentioned above my plan is "get me two years, and then we'll go after 2 more".....hopeful along the way for new developments in treatment therapies. Thank you for your comments.....means a lot to me at this unsettled time, every time I feel anything anywhere other than my back now my mind goes " oh no" So gladIy found this place....btw....I was a Guidance Counselor for 30 years!

longwaytogo said...
What a coincidence....I have an appointment scheduled with him on Feb 2! I am going in for some imaging this coming Friday. Feels encouraging to know he's been highly recommended.

"Ed" is a regular guy. He will never rush you and takes all the time necessary to answer questions and concerns, etc. His right-hand man is Sam - another great guy.

Please keep me posted and Godspeed!

NJ Fred
(aka Boynton Beach Fred)

Not much to add except my best wishes to you.
You have come upon a great website and I can attest that the people here know their stuff and to a one are all encouraging and offer sound advice. The best part to me has been the encouragement

Glen Heinsohn