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Son looking for answers...(father has Prostate cancer spread to bones)

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Posted 12/21/2012 9:31 PM (GMT 0)

Hello all,

On Tuesday of this week my father(71) was diagonsed with PC which has spread to his bones.  He had a Gleason score of 9 but his PSA was around 2.  His treatment was a shot of Lupron and nothing else...  No talk of chemo or radiation.  Is this odd?  My research show that Lupron is for the symptoms of PC not the treatment.  I am very new to this site so any information would be much appreciated...

Posted 12/21/2012 9:46 PM (GMT 0)
You found lots of people herein that can assist your questions. Lupron can be used as a systemic treatment or even controversially otherwise via some like Dr. Leibowitz (you can google such). Others can help you herein. I am just leaving you to later seek information from these websites for fast learning:

www.yananow.org
www.prostatepointers.org
www.hrpca.org  (see proven treatments tab)
www.phoenix5.org

www.paactusa.org   (free online newsletter info) 

This will help you understand more about this whole jungle of PCa.

Posted 12/21/2012 9:56 PM (GMT 0)
Welcome to HW. So sorry you need to be here.

You need to start educating yourself on this PC thing. The book by Dr. Walsh, "surviving PC" is a good place to start. Others will give you other resources.

The treatment is what we'd refer to as HT (or ADT). For PC that has metastasized to the bones, Lupron is a normal first step. No radiation is not unusual at first but it's likely he'll need one or the other some time. Chemo isn't usually done for PC at this stage. If they can find the meths they might radiate them.

This is an unusual set of numbers - high Gleason but low PSA. Not unheard of but not common.

Have they done a bone scan or any other imaging work? I am wondering how it's know that it's spread. If it's in the bones I would have expected a much high PSA number.

Andrew
Posted 12/21/2012 9:59 PM (GMT 0)
Hello Kid, sorry you find yourself here but you've come to a good place. There are lots of people here who know a lot about metastatic PCa -- most of them more than I do. They'll be along directly but while you wait I will just say that hormone therapy does more than alleviate the symptoms. It knocks the cancer back for a while. It stops it growing, sometimes it dies back a bit. But it generally doesn't work forever. How long it works varies from man to man but it is often several years. Since HT is generally well tolerated it is frequently the first thing they do to give the patient some extra time with good quality of life before the hormones stop working and he needs the chemotherapy. With you dad's high Gleason score he wants to be aggressive with it but putting him on Lupron is a good first thing to do even if it doesn't turn out to be the only thing to do.
Posted 12/21/2012 10:01 PM (GMT 0)
Sorry to hear your dad has been thrown into the world of prostate cancer (PC) in an advanced stage...Gleason 9 with bone metastisis.  Outstanding of you to help dig into the disease treatments to help him.

The starting place for you is to understand that your dad's case is "advanced," or "high risk."  As you begin "drinking from the firehose" of literature out there, you will find that the vast majority of PC cases are NOT advanced.  Once PC has spread to the bones, surgery, for example, is no longer a viable option because the cancer is spread beyond the reach of "the knife."  So, skip all the literature about surgery, which can be curative for intermediate risk men, and is usually not even necessary for low risk men. 

A course of radiation may be in his future, but most likely it would be palliatively used to reduce bone pain, if and when that begins.  Similar to surgery, there are other types of radiation therapy that are used curatively for intermediate (and low) risk men...but dad's not in that situation.

Lupron is a common first-line treatment, and there are lots of other treatment options which will likely follow.  The first step is for the Lupron to block the hormones which feed the cancer...to slow it down.  PC is almost always a slow growing cancer, even for advanced cases.  The treatments available to your dad can help slow it down more, likely for many years and hopefully (likely) until he passes on from other causes. 

We do have lots of guys here at HW who are also advance cases like your dad.  I'm not, so I'll step back at this point and let others share their own personal similar experiences...

Welcome, and sorry that you had to be here...

Posted 12/21/2012 10:27 PM (GMT 0)
Hi there kid42,

I too am relatively new to all this and my dad was also diagnosed with Pca and bones mets in oct this year. My dad is only 63, and it came as such a shock, he had no symptoms that rang alarm bells apart from a niggly pain in his leg and hip. We put this down to arthritis but then after him having blood work and rocking up with a PSA of 60 odd, thats when all the testing started. And our shocking news about this s**tty disease arrived on 30th oct 2012. My advice to you is read up as much as you can from this forum (it's the best!), and take a deep breath, some of the information is not pretty, but truthful which I have always chosen to be informed rather than not.

There are lots of people on this forum that are not suffering from this disease but are the main source of info for someone close to them. The people here have been fab and even when you feel that no one is going through what you are, always remember you are not alone, there are thousands of us out here in Pca land watching, waiting and hoping for new treatments to help our loved ones like mine and your dad.

You know someone is always out there to help with what your feeling x

Shar711
Posted 12/21/2012 10:48 PM (GMT 0)
Kid,
A psa of 2 with bone mets is unusual. I would suspect a varient, in which case he should be seeing an oncologist specializing in advanced PC cases. A review of his original biopsy slides by an expert pathologist would be the first step I would take. Dr Bonkoff in Germany would be an expert in varients and I would send his slides to him as my first choice and go from there.
www.prostapath.de
Posted 12/22/2012 2:21 PM (GMT 0)
Hi Kid:

So sorry to hear of your father's plight. How many bone mets does he have and where are they located?

Houseboy
Posted 12/26/2012 2:37 PM (GMT 0)
Thank you all for the information...  I hope you all had a wonderful Christmas...

Houseboy:

He has two spots.  One on the left hip and one on the right.

In the shop:

I will double check the PSA levels with my Dad.  I was not at his last Dr appt but i recall him telling me his psa was a 2 but i could be wrong.  I have had alot of thoughts/emotions running through my head.

Shar:

Sorry to hear about your father.. I hope your holiday was easier than mine. It was very tough yesterday for my father and I.  The thought of losing him is extremely difficult.  He is my best friend and we talk at least once a day and most days more.  He is the most amazing man i know!!!

Again i would like to thank everyone for all the information.  I will definetly "tap" the wealth of knowledge from you all as questions arise in the future.

Peace to you all.

Posted 12/26/2012 8:55 PM (GMT 0)
Hi There Kid:

I was there where your father is some 20 months ago. A scary place to start from but there is some hope.

Although I cannot advise what your father should do, I offer my experience to add to your background knowledge that you will gain from others on this site and your own extensive research. My Medical Oncologists include Dr. Myers in Virginia and Dr. Scholz in California, as well as my main oncologist in Canada. Here is my history.

In 2011 at 72 years, I was initially diagnosed with a PSA of 30 as Stage IV Gleason 9 oligometastatic PCa with two bone mets in my left pelvis and right trocanter. As part of a Study in Canada, I received stereotactic body radiation (SBRT) with curative doses to my prostate and my bone mets, and at the same time underwent triple HT, driving my PSA down to 0.1 within 6 months. When my PSA then started doubling every 6 weeks, I had a C-11 PET Scan with Acetate in Phoenix that clearly showed a bone met in my left ischism that had been missed on my other CT and MRI scans. It too was irradiated with SBRT, driving the PSA from 2.39 immediately before the RT to 1.98 immediately after. At the same time, I also started Zytiga therapy while continuing with Trelstar (a Lupron equivalent) and Avodart. After 3 months of the SBRT, my PSA is <0.05 and my Testosterone is <0.2 L.

Dr. Kwon at the Mayo Clinic in Rochester applies similar therapy with reported success, as does Dr. Myers in Virginia who had a similar procedure successfully done on himself some years ago and now refers his oligometastatic patients for the same procedure to Dr. Bravo of Sand Lake Imaging to find exactly where the mets are located, and Dr. Dattoli in Florida to irradiate them.

Here is a background paper where this therapy was suggested: “Patients with ≤5 metastatic sites had significantly better survival rates than patients with >5 lesions. Because existing sites of metastatic disease may be the primary sites of origin for additional metastases, our findings suggest that early detection and aggressive treatment of patients with a small number of metastatic lesions is worth testing as an approach to improving long-term survival.”
International Journal of Radiation Oncology * Biology * Physics
Volume 58, Issue 1 , Pages 3-10, 1 January 2004

Imaging is very important in this procedure to identify exactly where all the mets are located. The Sand Lake Imaging and the C11 PET CT Scan with either Choline or Acetate have been successfully used. Then you have to find a radiation oncologist who has the skill and the will to do it. Hope this helps.

Houseboy
Posted 12/26/2012 9:15 PM (GMT 0)
Thanks for the info Houseboy.  As luck would have it we live 20 miles from the Mayo Clinic Rochester and that is where he is being treated.  He is currently with Dr. Getmen(no sure on the spelling).  I will mention Dr Kwon's name to him.

Thanks for taking time to help me through this difficult period..  I will keep you in my prayers and I wish you nothing but the best in your battle. 

Best wishes,

The Kid

Posted 12/27/2012 8:34 PM (GMT 0)
In the shop:
I checked with my dad on his PSA level and it was 7.2.... Is a gleason score of 9 with a PSA of 7.2 make more sense. Sorry about the mixup...
Posted 12/27/2012 11:41 PM (GMT 0)
My husbands numbers were similar to your dad's. He had a psa of around the 8 mark, and a Gleason score of 9, with 11 of 12 cores about 95% cancer. This was about 14 months ago.

He was immediately put on Lupron (same as your dad), and this gave us a bit of time (months) to gather more information regarding treatment options.

We went to several specialists but they all said the same thing ie with those numbers (which were indicative of local advanced cancer) and its aggressive nature, surgery was ruled out by all. They all said that a multi-focal approach was best and recommended a TURP, which took place a few weeks later, followed by High Dose Brachytherapy 3 months later, and then finally, 10 days after the HDBrachytherapy, six weeks of External Beam radiation.

Surgery was ruled out by all we saw - it was considered that given the aggressive and advanced nature of the local cancer, it was almost certain that it had escaped the prostate capsule. Specialists thought that my husband would have a better fighting chance if he was "fit" from the start and not having to combat the aftereffects of surgery as well as other treatments.

He is still on the Lupron and will probably pause this in about March with the aim to see what is happening to PSA/and other symptoms.

So, use the time you have now to research, ask questions, (this forum is invaluable) and then make a decision based on educated knowledge.

Good luck with your situation - and in your reading, dont forget to separate the garbage from the good stuff.
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