Very high PSA 1440, Prostate cancer spread to bones confirmed - Now What?

Just joined this forum today - definitly looks like a great place for information. I do want to thank everyone who has shared thier experiences.

I just turned 63 in April of this year.

Has been a very tramatic 12 days for me. Within these last days I had a blood test and the PSA showed abnormal high - as a level of 1440. Since than I have had a bone density scan which showed the prostrate cancer has spread - wide spread - through my bones. I have no pain at all - but I did in Feb fall of a step ladder and for about a month after that my tailbone hurt a lot than the pain gradually went away. Within the last 2 months or so no major discomfort at all.
Thursday I saw the Urologist who did a DRE he said he could feel the cancer but he could get his finger around the prostrate. When the Urologist asked how I was - I told him physically am fine, but mentally - scared . The Urologist Doctor bolstered by confidence by saying "This is treatable and survivable".

He also said I need to be careful as the prostrate cancer in the bone does show I am at risk of fracture - He recommended no jumping / running - but to do some walking and not become a couch potato.

He prescribed BICALUTAMIDE, 2 tablets (50 mg each)to be taken once a day at the same time of day. I started taking that on Thursday 21 July. I am also taking 500 Mg of Calcium with 400 IU Vitamin D twice a day - making sure I am not taking the calcium within 3 hours of the Bicalutamide. (the calcium/Vitamin D being suggested by my son-in-law who is a doctor).

Next week I get a CAT scan and than on 4 Aug see the Oncologist (for the first time).

I am being treated at the Veterans Health Center in Washington DC and have been very impressed with the people and facility.

Any words of advice will be greatly appreciated!

What can I expect here?

Yes I am scared / worried.

BUT!

I AM going to beat this thing!

My New Motto - LIVE LONG AND PROSPER!

Hello friend, and welcome, I’m very sorry to hear of your finding of prostate cancer (PC).   It’s amazing how it can creep into one’s body and progress to an advanced, "systemic" stage (bone metastases, or “mets”) without much warning.   I’m guessing that you didn’t have prior PSA tests because it doesn’t grow to 1440 overnight.   As your urologist indicated, there are some arrows in the quiver for you.   If you haven’t already realized, howevr, a majority of PC cases these days are found early before cancer spread has occurred and therefore the abundance of literature addresses these patients, but it is important for all new patients (no matter what stage they are at) to educate themselves about the fundamentals of PC in order to become empowered patients.   You said that you’ve already got an appointment with a medical oncologist.   He/she will likely take over primary treatment plan responsibility from your urologist, so while you are waiting for that appointment you should be spending as much time as possible educating yourself about PC…I’ll give a few suggestions.   I strongly recommend finding an oncologist who has extensive experience with PC…it is important to realize that not all cancers are the same, so take the time to find someone experienced in PC. A hormone therapy (HT) regimen, plus some chemotherapy (such as Zometa or Denosumab ) to specifically address your bone mets are likely in your near-term future…I’m no doctor, but I think this will be your likely path because of the spread you already have.   HT refers to blocking either the production or the effect of testosterone, a hormone produced primarily by the testicles which “feeds” the cancer.   One of the side effects of HT is weakening of the bones (osteoporosis).   Therefore, the Calcium and Vit D will likely be a part of your holistic treatment program, as will exercise and diet/nutrition changes to help optimize your overall results. Here’s some links: Prostate Cancer Research Institute has lots of good reading material. Dr Patrick Walsh’s book titled “ Guide to Surviving Prostate Cancer ” is considered the bible of PC, and he has excellent chapters on HT…but the book will give you an excellent overall understanding of PC, which is really required in order to have detailed discussions with your doctors. Hope that this helps as a starter.   I know you feel like you are drinking from a firehose right know, but as your knowledge and education progresses, your anxiety will begin to diminish. best wishes…        

Hi Raddad,
Welcome to our site. We have some great resources to draw information from. For example, you're not the highest PSA we have seen. The highest I had seen was 17,000 but it wasn't here. One gentleman had a 3,200 here ~ and after five years he's still here. (Living1963). His name is Todd and he is younger than I am.

Rad it appears you have metastatic prostate cancer. It's the worse kind. But you can win this one. Unlike other cancers prostate cancer responds well to therapy and does not move in a hurry. Metastatic prostate cancer is incurable. But your doc was right ~ it is survivable. You have to get yourself educated to understand the options. Bicalutamide was a logical first step. It's an anti-androgen that prevents the cancer from feeding on your bodies testosterone. It is also not uncommon to limit testosterone with an ablation therapy with a drug called an LHRH agonist such as Lupron or Zoladex ~ and others. I have seen cases where this therapy eliminated detectable bone lesions.

Rad,
It is a good time to research some of the well known prostate cancer specialists. There are some docs that are better than others. In fact my oncologist likes to use this analogy ~ 50% of all doctors are below normal and when you need a good one you need the top 10% or better. The problem is that they are not easily identified but you'll see some names tossed around.

Again, welcome. Ask anything. And take notes.

Tony

Raddad said... 60Michael , Casey59, Fairwind, TC-LasVegas Gents – thanks to everyone for your response, they really are appreciated. ... Casey59 – in your post you said “Therefore, the Calcium and Vit D will likely be a part of your holistic treatment program, as will exercise and diet/nutrition changes to help optimize your overall results.” Can you detail what you mean by “exercise and diet/nutrition changes” ? Hi again, Raddad, and you are welcome. There is an abundance of literature out there about the benefits to cancer patients seeking longevity and quality of life through the lifestyle choices we make.   Lots of the more current medical studies make it clear that our own lifestyle choices have a much bigger influence on our cancers than previously thought.   I’ll cite just one example of the research which backs this up; a study done by urologist & PC expert Dr Peter Carroll at UC-San Francisco who took 200 men with biopsy confirmed (albeit early stage) prostate cancer.   He split the group in half after normalizing all other factors, and 100 men followed strict guidelines for diet, exercise and stress reduction while the other 100 did nothing different.   All 200 agreed to forego aggressive treatments for at least one year.   One year later, the average PSA of the control group (no changes) went up by a very predictable amount, but the average PSA of the study group (lifestyle changes) went down .   Here’s a LINK which describes the study/results. Before I go on, let me “state the obvious” so that there is no confusion:   you shouldn’t think that lifestyle changes alone can cure you and make your cancer go completely away.   It won’t.   But taking these steps can help to attenuate your prostate cancer and help to “stack the odds in your favor” for the best possible outcome…and it sounds to me like that what you, and your daughter, and perhaps other family members want you to do.   And I'd like to further make clear the perspective that you have a challenging case, and while this post focuses on answering your specific question to me about diet/exercise, I feel strongly that you need to find a medical oncologist very well-versed in treating PC, which might or might not be the dept head.  Having said that, t he typical medical doctor will take charge of your conventional therapy; but most often you either have to find someone very well versed in PC (and you will soon learn the names of the true PC gurus) to guide you in the complementary therapies (lifestyle changes), or you will have to educate yourself as many of us here have done.  (Of course, always communicate clearly and completely with your doctors about your lifestyle.) So, again, in the spirit of trying not to overwhelm you with a ton of material on your 2 nd day here, let me provide you with just a couple of key articles/documents (several of these will also lead you to sites with additional very good reading materials): ·          The Prostate Cancer Institute’s “ 10 Foundations of the Prostate Diet ”   LINK ·          The Prostate Cancer Foundation’s “ Nutrition, Exercise and Prostate Cancer ”   LINK ·          Abstract of a medical study in the Journal of Clinical Oncology titled “ Physical Activity and Survival After Prostate Cancer Diagnosis in the Health Professionals Follow-Up Study ”   LINK ·          The “New” Prostate Cancer Infolink article titled “ Regular exercise and prostate cancer-specific survival ”   LINK ·          Article titled, “ Change Lifestyle, Change Genes ” which shows that you are not destined by your gene pool to a particular fate, particularly related to PC   LINK , LINK2 ·          Dattoli Cancer Foundation suggestions; largely focused on vitamins/supplements, which I think are secondary to the "big three" of diet (most often what not to eat), exercise and stress reduction   LINK     Hope this is the kind of thing you were looking for, and I hope this helps. best wishes...     edit :  fixed a couple typos Post Edited (Casey59) : 7/24/2011 7:06:35 AM (GMT-6)

Thanks lewvino!

The responses here have been very helpful. Slowly - very slowly - I'm starting to understand things. But as you will see from my next post - I still have questions.

Live Long and Prosper!

Bud,

With all of the vitamins and supplements, it should only be done under the advisement of your doctor(s). That is the first thing I learned. All of my doctors feel its dangerous when patients start up their own supplement routines, and end up taking mega doses of things that either aren't going to do them any good, or perhaps even harm them with interaction with other meds they take.

I couldn't imagine any real doctor reccomending saw palmetto. That was a trendy "do it yourself" supplement, popular a few years ago.

As I still am in a very extensive Oncology Rehab program long term, I have access to experts in many fields, including dietary and nutrician matters.

The "stacking the things in your favor" mantra always sounds good to say, as long as one doesn't believe that these vitamins, supplements, etc, will stop or sure their cancer. The head of my rehab (a woman), has told me before, that men tend to want to be "in control" once they find out they have cancer, and tend to do things on their own, even when shown that there is no hard evidence of it helping. It's more of a mental game.

I have met with 3 different oncology dieiticians, and all of them agree that going to a heart healthy diet is what is needed. All of them are totally opposed to men that cut out entire food groups, i.e. red meat, dairy, etc.). That most things are ok, if portions and moderation are utilized.

I wish you well, you got a great attitude going into this whole PC thing. We may all fight the same Monster, but we fight different battles on different days. Every human body reacts differently to things.

If you feel you have a good medical team in place, my take would be to form a close knit group with them, keep great communications, and be a compliant patient. That's the best way of being your own advocate, which I fully support that notion.

My own current oncologist, whom is very experienced with advanced PC, almost laughs at the on-line "doctors" that think they are giving out sound advice. He said there is so much mis-information, that it is actually dangerous when patients try to "doctor" themselves or give out medical advice to others.

HW here, is, and has always meant to be a patient to patient support site, which it is great at. Being a skilled internet searcher doesn't make one qualified to give medical advice and opinions, I am sure you would agree. I take in information from all over: books, internet, network of people I know, and here of course, but in the end, I choose to listen to qualified medical opinions from real doctors over anything from any other source.

Hoping to hear good reports from you, welcome here to our little corner of the world

David in SC

(I better put a qualifier here: All of what I said, is just my personal opinion, I have no medical qualifications)

Hey Bud -  I have nothing else to add as you have received excellent advice from the vets of this site so far, other than to echo the importance of consulting with an Oncologist who is an expert in PCa.    You may find this video by the aforementioned Dr. Myers interesting:

http://askdrmyers.wordpress.com/?utm_content=amyson%40comcast.net&utm_source=VerticalResponse&utm_medium=Email&utm_term=here&utm_campaign=More%20on%20Zytiga%20for%20PCacontent

Purgatory , TC-LasVegas , Piy , John T

Folks – thank you one and all for your responses. I’ll try and respond to each one of you in this post.

Purgatory – chuckles – yeah it is a Male trait – If have a problem – Fix it! Take Charge! I do not have a medical team in place yet, that is coming through the VA Hospital.

On "stacking the things in your favor” – yes I agree, though some changes to my diet have been in order for some time. Hence embracing a “heart healthy” diet is wise even before I found out about this cancer. As to supplements – other than the Calcium I do not plane on doing anything without the knowledge and approval of the medical team.

To your point “He said there is so much mis-information, that it is actually dangerous when patients try to "doctor" themselves or give out medical advice to others.” – I’ve definitely started to realize that, my haphazard internet searches have yielded all sorts of conflicting information that even I with no knowledge recognize as conflicting.

TC-LasVegas
Emailed yourself and Todd minutes ago.
On - Also an Anti-Androgen (bicalutamide is the generic or Casodex is the brand name) does not remove the fuel – Thanks for the clarification / amplification. I expect the Oncologist will ‘add’ treatments, starting with the bicalutamide definitely can help I’m sure.

“Additionally, there is a possilbility that you already have cancerous cells that are resistant to these drugs. This is called hormone refractory prostate cancer.” I have seen that term in my web searching and never knew what it meant. So if have “hormone refractory prostate cancer” than that would trigger chemo? Or is that too simple a statement on my part?

Piy
Thanks I’ll watch the video this afternoon.

John T
Excellent point on the books being out of date or not being written by a expert in this specific field.
I’m going to have to check on what I have already ordered, what my daughter is sending me and what my sister is sending.

To your statement – which makes sense – “Consult with the most experienced doctor even if treatment itself is from someone local.”.
Does that raise any conflicts with the local doctor?
How do I get all the up to date information that has been taken by the “someone” local to the experienced doctor?

Hard to believe this has all gone down in the last 12 days, I was first notified of the High PSA on 12 July after having the blood work done on 11 July.

Again thanks all ! - Live Long and Prosper!

Bud

Casey - Understand - thanks for the information. Big three it is - and supplements as per the doctors guidance.

So this is Wow this is weird – take a look at http://www.amazon.com/Beating-Prostate-Cancer-Hormonal-Therapy/dp/0967612926 - Why would used book be less than a new book? Than the prices are all over the place!

David:

You make some good points. Although I am now going to try a more aggressive approach regarding supplements and, eventually, diet based upon my reading and meeting with Dr. Scholz, even he said don't go crazy on this.

I believe the #1 diet is Vegan (which I don't see myself doing) and Medit (I am about to investigate that).

David, I think these 2 diets really do eschew any and all red meats. As much as it pains me, it may be that giving up red meats totally IS ADVISABLE. Do your experts advise against these diets? If so, it seems to fly in the face of the latest and greatest opinions (which may change).

Mel (who loves a good steak!)

WAIT!! WHAT??

Lets not go crazy here!

BEER IS A FOOD GROUP! A essential part of a males diet!

Casey it malt be but to get a hop on things one needs barley to understand.

Yeah Trep!

I for one needed a laugh!