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PSA over 6000 on diagnosis - looking for advice and hope

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Posted 10/14/2016 3:11 AM (GMT -7)
Hello I posted this on another forum but was advised to put it here too.

My husband has had a shock diagnosis of advanced PCa after a routine rectal exam for an unrelated condition revealed a 'hard' prostate. He was given a PSA test which came back as 6006. The consultant has said he has inoperable PCa which will have spread widely.

I have posted this on a couple of forums and people have been very helpful but finding it very hard to find more information about such high PSA results (I assume because it is so shockingly high.)

He is about to start on immediate hormone treatment and at the same time is having MRIs / bone scans etc. we have been told that these are just to establish the extent of the spread (rather than to check if there is any spread at all.)

We realise that this will be life limiting but would appreciate any thoughts / advice and if anyone can give any hope.

Thank you.
Posted 10/14/2016 3:53 AM (GMT -7)
Sallyyy,

Sorry you need to be here.

I would immediately have a second PSA test done to verify initial results.

Also, I would delay hormones until bone scan and MRI are done, as it may affect results, but discuss with your MD.

Others will be along to give you more info.

Bobby Mac
Posted 10/14/2016 4:13 AM (GMT -7)
I can not give you advice on very high PSA as I have the type of cancer that does not always raise it. What I can offer you and your husband is hope. Yes, it is life changing when they first tell you that you husband has cancer and that it has (probably) spread. But please know that there are thousands us us with advanced cancer and we are still here.

Please note that no one has died from a very high PSA. The issue is the stage of the cancer and how much (if any) it had spread.

I noticed that you did not discuss if he had a biopsy. A biopsy would give you information on how extensive the cancer is in the prostate. More important, it may tell you what type of prostate cancer he has. For example, the only way they knew that I had Ductal prostate cancer was by the biopsy. They modified my treatment as a result.

Please note that even with a PSA over 6000, there is a real chance that the scans will show that has not spread throughout the body. Or if it had, that it is still regional in the pelvic area. The scans are critical as they can be used to determine how effective the treatments are.

There are many cases you can find on the web where hormonal treatment resulted in massive reductions in PSA and tumors (if present) even if their starting PSA was over 1000 after they started hormonal treatment. That is the reason they are starting your husband on it now while they wait for the results from the surgery.
Posted 10/14/2016 4:52 AM (GMT -7)
Sallyyy,

you write: "if anyone can give any hope." Here is a presentation by Dr. Kwon where he mentions a patient with a PSA of 25.000 (at minute 21:26). As you can see Dr. Kwon was able to help this patient.

It depends of cause how the tumor has spread.

George
Posted 10/14/2016 5:23 AM (GMT -7)
Thank you everyone for the replies. I really appreciate them.
My husband is having a biopsy next week and the results of everything will be reviewed with an oncologist on 1st November.
The urologist has already spoken to an oncologist who advised that it was best to start the hormone treatment as soon as possible.
Thank you again - we are obviously very scared but it is very useful to have all the information.
Posted 10/14/2016 5:54 AM (GMT -7)
Hi Sally,

Sorry that you are facing this, but in my opinion there is always hope. We have known of many men with very high PSA that have managed the disease for a good amount of time. To read some of the stories another site that may help is Yananow.

My advice is to seek out the very best medical oncologist that specializes with advanced and high risk prostate cancer. One member already mentioned Dr. Eugene Kwan at Mayo. I would also direct you to Dr. Oliver Sartor at Tulane University Medical Center in New Orleans. He had a patient that presented with 12,000 PSA and they managed the disease for about 10 years. Another is Dr. Snuffy Myers in Virginia, and Dr. Mark Scholtz in California. I am sure other members will add to the list for you. Where are you located?

Your initial treatment is Androgen Deprivation Therapy and the drugs will stop the production of testosterone, which should slow down the cancer. From there it could be a number of different treatments based on how well he responds and the given doctor's approach. So it is too early to tell. How will he do? we can't predict, but the treatments that have come out over the past six years have been very beneficial to advanced cancer cases in both managing the disease and helping with pain control from tumors. Every man and cancer is a bit different so.

Best wishes and it is good he has you for support and direction.
Posted 10/14/2016 6:03 AM (GMT -7)
Sallyyy, you are getting good advice from the urologist/oncologist. Prostate cancer is really a spectrum of diseases--and while a much larger number of men are at the opposite end, at your husband's end of the spectrum the best choice is to "hit it hard." Starting HT asap is a good first step, and there will be more. Best wishes.
Posted 10/14/2016 6:15 AM (GMT -7)
Sorry I should have said we are in the UK.
Posted 10/14/2016 6:57 AM (GMT -7)
Sorry you need to be here.

That is a scary number. The HT can work for years and after that there are other treatments. Sadly, nothing curative but these treatments can keep the beast at bay for many years.

And new treatments come up all the time.

Keep us updated on your progress,
Andrew
Posted 10/14/2016 7:07 AM (GMT -7)
I thought so when you mentioned the term "consultant". Not one we use in the states. I don't know what your options are for treatment, but I would think with such a high PSA it might be possible to collaborate with one of the great oncologists in the states. I am sure there are excellent ones there, just don't know how the system may work for you.
Posted 10/14/2016 7:18 AM (GMT -7)
Sallyyy, There is a member here who had similar stats. His name is Todd and he has a blog documenting his treatment. Look for one of his postings and go to the blog. His is a story of hope.

Best to you and your husband.

Don
Posted 10/14/2016 7:19 AM (GMT -7)
Just wanted to say hello and so sorry to hear about that diagnosis. If I could look on the bright side it's that PC does have some incredible and surprising success stories even with diagnoses such as your husbands.

In all probability, the HT will quickly reduce your husband's PSA by shrinking any tumors out there and that's an important first step. But I do echo the concern about starting it before the scans since by shrinking the tumors they're less likely to show up and it will be more difficult to know exactly what you're facing. I'm clearly not a medical expert, but I would at least ask that question about the timing.

Good luck to you and I hope we can be of help and support!
Posted 10/14/2016 7:22 AM (GMT -7)
Sal,

Here is Todd 1963 signature.

DX 2006 age 42 PSA 3216 stage 4 Gleason (3+4=7 ) Lung, Bone, and Lymph metastasis
A.D.T. 5-1/2 years. Provenge, Zytiga, D.E.S.
Latest Bone scan, C.T. scan, and chest X-ray clear. Current P.S.A. <0.05
52 years old
Todd's blog
Twitter @seals_todd

Hope your hubby can get similar results.

Don
Posted 10/14/2016 7:28 AM (GMT -7)
I will try to find posts from 'Todd' - thank you.

Thank you for the comments re hormone treatment before the scans. The urologist had the decision double checked with an oncologist who said yes to going ahead. My husband has started Bicalutamide tablets today for 28 days and will have his first hormone injection next Friday (apparently the Bicalutamide is to prevent a possible flare in testosterone with the start of the injections?)
My husband had a CT scan yesterday which was before the start of the hormone treatment.
He is having a bone scan on Monday and an MRI on Wednesday so perhaps the hormones won't have had a huge impact on any tumours by then (?)
Posted 10/14/2016 7:44 AM (GMT -7)
Sallyyy -

Here is a link that will take you directly to Todd1963's blog:

toddseals63.blogspot.com/
Posted 10/14/2016 8:43 AM (GMT -7)
Thank you for finding me his details
Posted 10/14/2016 1:59 PM (GMT -7)
I think your husband's doctors are right not to delay hormone therapy. With a PSA that high, it is unlikely that all metastases will vanish, and it really doesn't matter much - he will get the same systemic treatment in any case.

They started him with Casodex, which will prevent a testosterone flare up when he begins the hormone injections. Soon after that, they will probably start him on chemotherapy with docetaxel. Hopefully, that will slow progression and bring his PSA way down.

They may want to radiate any metastases that are causing him pain, or in weight-bearing bones that could fracture.

A controversial therapy is "de-bulking the primary," meaning removing the prostate with either radiation or surgery. That may slow progression, but we really don't know for sure.

Beyond that, you just have to take it one day at a time, and deal with it as it comes. There are now many tools in the armamentarium that he will be able to take advantage of. Also, there are many clinical trials that he may qualify for at some point.

Please let us know as things progress.
Posted 10/14/2016 2:16 PM (GMT -7)
Thank you for that info Allen - very useful.
I am struggling at the moment with the thought that he will have no time at all - and just praying that there might be some hope of extending that time for us and our children.
Posted 10/14/2016 6:53 PM (GMT -7)
Praying for you and your husband.

Paul
Posted 10/14/2016 7:28 PM (GMT -7)

Hello, To You, Our New Friend ~

We've all stood at the spot in the road, where you now find yourself --- and suddenly hearing the news of a troubling health diagnosis.

With that being said, WE ARE HERE FOR YOU, starting RIGHT NOW. You are not alone --- we're here to comfort you, support you, listen to you, advise you, and most of all --- to share our collective first-hand experiences with you.

You've got more tests and scans coming up soon --- it's tough, waiting for those appointments, and waiting to hear the results. In some ways, though, it's almost a relief to find out exactly what you are dealing with, so that you can put on your BOXING GLOVES ... enter the BOXING RING ... and get started in the FIGHT against the opponent known as prostate cancer.

We've got members here from all across the country --- sharing their wisdom, compassion, and experiences --- as well as loyal members from across the globe, as well.

We've bonded together to form an online "Band Of Brothers --- AND Sisters" --- and there's no limit to the care and concern and support that can be found here, on any given day --- you've already seen the responses pouring in to your initial post --- and this is how the bonds of comradeship emerge among all of us here.

I was also diagnosed with advanced prostate cancer --- it's a tough blow, hearing those unexpected words. I was in my 40s, and had lived a life of perfect health up to that moment --- then began the series of seemingly endless tests and scans and consultations. The news was unexpected ... advanced prostate cancer that had already infiltrated both of my lungs upon diagnosis.

I am a school teacher and had JUST STARTED a brand new school year when I found out "the news" ...

My doctors told me that treatment needed to start IMMEDIATELY ... and my first step was the hormone shot known as LUPRON. Since then I've also pursued a series of chemotherapy treatments and I'm also on ZYTIGA --- one of the newer breakthrough medications for advanced prostate cancer.

I remember when I was first diagnosed. I looked ahead at the school calendar and honestly thought, "Will I even make it to Christmas?"

Looking back, the BEST STEP FORWARD after receiving the news of my cancer diagnosis was this ... getting STARTED on treatments ! I wanted to get started on something ... anything ! That FIGHTING SPIRIT seems to rally within us ... and getting started with a course of treatments is very helpful.

Looking back, my doctor gave me that first LUPRON shot ... it was a beginning ... a place to start. When I went back about a month later, my P.S.A. started tumbling down. That gave me tremendous encouragement and hope --- and then I began to pursue other forms of treatment, including a series of chemotherapy treatments, to REALLY start fighting back against the cancer.

You've got to stay strong --- physically and emotionally. It's hard sometimes, but do everything you can to "keep your head in the game" --- and then rally your "support team" around you.

I kept focused on my teaching --- support came flowing through from my family --- my friends --- my teaching colleagues --- members of the community --- my doctors and nurses and medical staff --- and MY SCHOOL STUDENTS !

Over time, several friends of mine have received a diagnosis of advanced prostate cancer --- and I have a strong bond of friendship and brotherhood with each of them. This website is also a tremendous form of support for members who check in here regularly.

I've continued to teach school every single day, as my treatments have continued over time. A year ago, I reached the milestone of teaching 25 years --- and I'm now starting my fourth year of teaching since being diagnosed. I've been thankful to have some meaningful successes from the treatments and medications that have become part of my course of treatments.

I feel it's important to tell you that there' no substitute for the importance of staying connected to your family, friends, and faith --- in whatever form that takes for you. Stay active and interested in the world --- stay active --- keep reaching daily goals --- and do whatever it takes to find peace and solace --- and most of all --- HOPE !

Several of us here on this website have documented our TREATMENT EXPERIENCES on a website entitled "YANA -Prostate Cancer Survivors" --- members from across the globe document their treatment experiences there, including experiences with advanced prostate cancer that includes patients with high P.S.A. numbers.

The website address is as follows: yananow.org

When you reach that website, you will want to find the section entitled "Survivor Stories" to gain insight from the experience of others. You will find a wealth of treatment stories and personal experiences shared there.

I would like to recommend another thread here on this forum. At the top of your current screen, you will see a SEARCH box at the top right-hand corner of your screen. Type in this thread title, as follows:
"LETTERS TO THE NEWLY DIAGNOSED" --- this thread is a collection of letters that several of us here have put together in recent months as a way to REACH OUT to our new members and friends here, who have just received a health diagnosis of prostate cancer.

I strongly encourage you to GO to that thread, READ the letters, REFLECT on their meaning, and I hope the life lessons shared in each letter will INSPIRE you the minute you read them. Seek out that powerful beacon called HOPE ... and keep living life to the fullest, each day.

Meanwhile --- please continue to update us, as you learn more from the tests and scans. I'm quite sure that the doctors on your case will recommend a proactive treatment strategy that will begin immediately.

It's important that you seek out a top-notch expert who specializes in advanced prostate cancer --- my team is comprised of my original urologist, my primary medical oncologist, and I've also added a urology oncologist who SPECIALIZES in advanced prostate cancer. My course of treatments is outlined in the space below my signature, for your reference.

We're here to support you, EVERY step of the way --- as evidenced by the responses you've already received.

I'm extending a handshake of support from across the miles --- you have my prayers, as your diagnostic tests continue in the days to come --- you have my thoughts of care and compassion, as you begin your medical journey --- and you have my unwavering loyalty, as you map out a course of treatments.

Sending you courage, determination, and HOPE,
"Cyclone Team Fan" ~ Iowa State University
Posted 10/14/2016 10:31 PM (GMT -7)
Hi Salyyy
So sorry about your husbands dx but yes indeed you have come to the best place.
As you can see from my history I also was dx with a high psa and multiple bone metastasis. 2 years later I have an undetectable psa and healed tumors. There are many options out there for him and I can assure you that he will be around for many years and with many more treatments in the development stage, who knows, old age may take him instead of this beast. With that said, you have to stay very pro-active and do a ton of study on his illness. As in the US, I am pretty certain that the UK has some of the worlds best doctors and you must seek them out.
Please tell him to keep his head high and remain optimistic. I am sure that he will be with you for a long long time
Posted 10/15/2016 1:03 AM (GMT -7)
Thank you again for all the messages. I am reading them all x
Posted 10/15/2016 1:20 AM (GMT -7)
Hi Sallyyy,

I think it was me who suggested you come here and I am glad you did. I am sure you are probably a little overwhelmed by all the responses, but please take your time to consider them all. I have visited many forums, but none have the level of expertise you will find here.

And of all the very valuable advice you will receive, let me advise you that you should really take note of the comments from Tall Allen. He is quite revered here and has a very high level of expertise. That said, you will find some posters who, at times, will disagree with him, but that all adds to the robustness of debate and opinion.

Wishing you all the best

Chas

PS is your poster name based on Gracie Fields "Saalleeee, Saalleee, pride of our Alleeee"?
Posted 10/15/2016 5:08 AM (GMT -7)
Sallyy, yes, that is a very high PSA, and it does sound like the docs are 'on it'. I don't have any expertise to add, just to say welcome. The fight is on, and he's got you in his corner. Let him know that his brothers here (and some of your sisters as well) are all rooting for you.

I might have missed it, if you said. How old is he? He has every chance of living a long time with good quality of life. The important thing is to celebrate life daily, and to make the most of every day. Go places, do the fun and crazy things you've always wanted to do.
Posted 10/15/2016 6:07 AM (GMT -7)

Sallyyy said...
My husband is having a biopsy next week

Usually the biospy is followed by a bone scan and an MRT.

Since you will want to determine the spread of the tumor I strongly suggest that you have a PSMA PET/CT done. This will clearly show where the cancer is within the entire body. It is expensive but the best imaging available today. Then you will see what parts of the body are affected and plan the therapy based on that.

George
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