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PSA 43.15 Gleason score (5+4) = 9 Ct & Bone scan show spreading

IAJC
Posts: 8
Joined: Jun 2011

In April had 1st PSA level 43.15 Biopsy on May 20,2011 returned gleason score 9. On June 20,2011 had ct and bone scan return results of spreading to lymph nodes and speading to bone in pelvic, leg and spot on spine. What do I do? I'm 51 yrs old

tarhoosier
Posts: 181
Joined: Aug 2006

I:

Your doctor/urologist will provide guidance for you. I will assume that the "hormone" treatment (actually anti-hormone) nearly always instituted at your stage will have bicalutimide as a 2 week headstart before an injection of one of the several LHRH drugs which will reduce testosterone and thereby reduce the fuel for you tumor. Regular psa tests will monitor your response.
I think the best thing you could consider after beginning your treatment is to find the very best medical oncologist you can afford. Your primary care physician is now concerned with your general health and not your cancer. The urologist who biopsied you is a surgeon and not the long term answer for your case. He (she) will do for now. You will likely need a series of treatments over years and a medical oncologist is the one to map that territory.
I also believe that a visit to your local prostate support group can provide you with ideas, perspective, and generous emotional engagement. The men and women you find there will have had the shock of diagnosis like you. They will be in all phases of the disease and their treatment advice is worth less than their emotional and spiritual support. This site is fine for what it is, but is no replacement for a real human with eyes and loving care.
The very best to you. We are in this together.

VascodaGama's picture
VascodaGama
Posts: 1531
Joined: Nov 2010

IAJC

I am sorry to read about your diagnosis. At age of 51 such advanced status is not common but with proper management you will survive this drastic moment of your life.
You have a high risk systemic case of cancer. The protocol is for hormone therapy (HT) or chemotherapy or a mix of both.
I do not know where you came from or live, but you need a good oncologist experienced in targeted treatments handling cases similar to yours. Not a urologist.

The typical HT for advanced cases is a triple blockade with an agonist shot plus antiagonist plus 5-ARI. You will add a bisphosphonate like Zometa which helps in the fight of metastases and bone lose.
For details of these protocols, google this sentence; ADT3 and Zometa.
I would recommend you to research about treatment side effects too, particularly about Zometa which is known to interact with some medications.

A new type (class) of drugs which you could discuss with your oncologist has been recently approved for the combat of prostate cancer, and they have been successful in the treatment of advanced cases with metastases. You may investigate about Abiraterone which is active in the attack of the cancer within the tumors (intertumoral) and Xgeva (denosumab) which is reported successful in the combat of bone metastasis. Just type google these names to read about details.

Hormonal therapies are controlled not just with a PSA test but by testing testosterone levels. I would recommend you to have this test before starting the treatment to serve as base line for future tests. A bone density test is also required to verify bone loss. Weaker bone is common in the presence of metastasis and it would help you to verify the effectiveness of the drugs you will take.

I recommend you to get copies of these books ;
Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for systemic cases. This oncologist is himself a survivor of a challenging case on his 12 year of survival.
A Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano; which explains well the whole process of diagnosis.
You can obtain copies from Amazon site.

I hope this post is of help.
Welcome to the board.

VGama

IAJC
Posts: 8
Joined: Jun 2011

I want to thank you for taking the time to read and reply. I live in Iowa and have very limited health insurance. I love all the help I can get. Thanks again everyone.

VascodaGama's picture
VascodaGama
Posts: 1531
Joined: Nov 2010

IAJC

Insurance should come second in your treatment. You are in a very advanced situation requiring prompt action.
You may spend a few Dollars now with a consultation and think on ways of getting the treatment cheaper later.

If I was in your shoes, as at this moment, I would call the office of Dr. Charles Myers (http://www.prostateforum.com/about-dr-myers.html) for an appointment, meet him, listen to his advice on a treatment protocol, and explain to his staff about your concerns regarding the insurance and costs.
Many survivors on ADT (hormonal treatment), including me from Portugal, consult oncologists, and then follow treatment at their own places with the help/supervision of a local family doctor.
Dr. Myers is one of the best oncologists specialized on PCa (if not the best in my opinion) and his office is located at Virginia not far from Iowa if one compares with the many that travel from the other side of the globe to meet him.

The cost of drugs for hormonal treatment are now available as generic therefore much cheaper (average 20%). You could also buy them overseas from reliable sources; however, the agonist shot needs special care (cooler at 3C) which would require proper handling.

Before taking Zometa you should have a dental examination because it may cause “osteonecrosis of the jaw”. Read about the matter in this site (http://www.yourlegalguide.com/onj/).

I read about cases similar to yours where radiation treatment have been part of the protocol, but doctors on bone metastases cases tend to keep radiation for a later stage. Hormonal treatment is used because it can control the advance of the cancer during long periods of 10/15 years. Prostate cancer is known to “feed” on testosterone so that HT is administered with the intent of lowering the testosterone levels in our body, to “kill” cancer cells by “starvation”. Agonists (Lupron, Eligard, Zoladex, Firmagon, etc) will blockade the “production” of T at the testis (chemical castration) and antiagonists (Casodex, Cyproterone, Flutamide, etc) will stop (block) the feeding at cell’s receptors.
Some HT protocols are administered single (only agonists) or double (plus antiagonists). On triple blockade doctors add a third drug named 5-alfa reductase inhibitor (Finasteride, Avodart, etc) which will stop (block) the production of hydrotestosterone, which is a 5-fold powerful type of testosterone.

While you get acquainted with the problematic prostate cancer and its treatments, you should get an appointment with a specialist the soonest.

Wishing you the best.
VGama

IAJC
Posts: 8
Joined: Jun 2011

I just want you to know that this means so much to me. To be able to get so much information. I will let you know how things go. Again I can't thank you enough. Take care.
IAJC

IAJC
Posts: 8
Joined: Jun 2011

I just want you to know that this means so much to me. To be able to get so much information. I will let you know how things go. Again I can't thank you enough. Take care.
IAJC

IAJC
Posts: 8
Joined: Jun 2011

I just want you to know that this means so much to me. To be able to get so much information. I will let you know how things go. Again I can't thank you enough. Take care.
IAJC

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