New Here not New to Prostate Cancer

New Here not New to Prostate Cancer

I am new to this site but not new to Prostate Cancer. I am 63 years old and have been treated for this disease since 1 month after retiring in 2008, not the best way to start retirement. I have never had any symptoms no issues with the prostate evaluation by numerous Doctors examinations, just a rising PSA on a blood test back in 2007.

I have done everything that could have ended in a cure Prostatectomy in 2008, Salvage Radiation 2014 now as I wait for the PSA to reach 1.0 (currently 0.8) to join a study that is not curative, and at best may provide an additional 2-3 years.

Feel free to provide advice for the following,

Treatment Options, We are looking at a study headed by Doctor Schere of MSKCC.

When should I inform family members?

Does Diet make a difference?

Thanks for listening

14 Replies

  • I believe diet & nutrition make a huge difference. A friend sent me an article shortly after my diagnosis in 2003 (age 61, PSA 60.7). Based on it, I gave up meat, fowl & dairy. I continued to eat fish & seafood, & ate even more veggies & fruit than my previous considerable amount. Later, I consulted with oncologist Donald Abrams at UCSF's Osher Center for Integrative Medicine. He advised me to eliminate sugar, white rice, processed cereals, bagels & other bread. Now I'm even avoiding pasta made from wheat, & using brown rice pasta at home.

    I began taking some supplements before meeting Dr. Abrams, & more after. This includes 2 capsules of Host Defense (17 mushroom compound) first thing in the morning, 5000 mg of Vitamin D3 daily (best to be tested so you know your baseline level), 1000 mg of Omega-3 fish oil twice daily, Zyflamend twice daily, Co-Q10 twice daily & Turmeric Force twice daily.

    Based on how quickly my PSA began to rise again after first a radical prostatectomy (Gleason 7) & then external beam radiation with Lupron, & how short the doubling times were, there was no reason to believe I'd be alive to write to you from my wife's & my annual (since 2004) winter visit to Southeast Asia. In fact, it seemed like I'd be gone quite a while ago, far before they invented my current anti-PC drug, Zytiga.

    So I believe diet & nutrition are extremely important. See Integrative Oncology, 2nd ed. 2014, by the aforementioned Donald Abrams & Andrew Weil. I believe reducing stress & enjoying life are also extremely important. Finally, I took the advice of the acupuncturist-herbalist who works with Dr. Abrams to alternate acupuncture 1 week & massage the next week, in order to stimulate my immune system, & to take a personalized prescription of Chinese herbs twice a day.

  • I've read that Zytiga is an anti-PC drug. Does anyone have experience with this drug ? Are there side effects ?

  • Hi dd92251 You'll probably get more answers to your Zytiga question if you post it in the community, using the Orange "Write A Post" button in the upper right hand corner . Zytiga is a therapy that many men have been helped by...there's also Xtandi for you to consider, too. And combination therapy with Zytiga and Prednisone

  • I've been on Zytiga plus prednisone for 2 years. I've had no side effects from Zytiga. The prednisone is causing easy bruising, mostly on my forearms & occasionally on my hands & face. We cut my prednisone from 10 mg to 5 mg. The bruising still happens, but the bruises aren't as thick. So they're far less likely to rupture if they're scraped or otherwise stressed.

  • If it is determined that you qualify for the study headed up by Dr. Howard Scher of MSKCC (an expert in advanced prostate cancer and involved in research for men so diagnosed) it is likely a study important to your current status, so I would suggest you pursue.

    You don't mention Gleason Score following surgical removal, PSA levels from then to moving to salvage radiation, and what else physicians may be recommending other than the study.

    You are likely a candidate for androgen deprivation therapy, so I don't get the idea that whatever you do there is any reason to talk of 2 to 3 years survival.

    Tell us more about the study - the medications involved. Likely medications we are already aware with possibly a new medication thrown into the mix to determine effectiveness.

    Since you don't mention awareness of any metastases, I would expect you have many years of continued life on this earth.

    I have been through surgical removal December 1992, salvage radiation April/May 1993, recurrence 1996, and still here alive and kicking 20 years after recurrence being prescribed androgen deprivation therapy (ADT) medications wherein I have been on and off the medications every since with success.

    If interested in my prostate cancer, advocacy, and mentoring background, (my “credentials” if you may) please visit the following where you can also click on the menu word "Observations" and access over 200 papers I have either authored, compiled, or posted from medical friends regarding prostate cancer, recurring prostate cancer, treatment options, treatment of the side effects that often accompany most all treatment options, and more.

  • Here is my treatments to date:

    Age 55 when diagnosed May 2008

    Biopsy 5/08 2 of 12 cores positive

    Gleason 6 3+3 Stage T1c

    DaVinci RP 7/31/08

    Post Op visit 8/7/08 Catheter removed,

    Pathology Gleason 7 4+3 Stage T3A

    Extraprostatic extension: Present (right mid, right base and bladder neck area) Seminal Vesicles: Negative; Peripheral resection margin: Focally positive.

    PSA < .05 2008 -2010 6 month surveillances

    PSA jumps to .1 2/2012 went to MSKCC in NYC 5/2012 PSA .7 They recommend wait till PSA .2 before Salvage Radiation. Reach .2 1/2014

    Salvage Radiation 3/2014-4/2014 (39 Treatments)

    PSA <.05 30 days post radiation.

    PSA .1-8/2014,

    PSA .4- 2/2015,

    PSA .6- 8/2015,

    PSA .8- 2/2016

    I have yet to be prescribed any meds for my PC, nor have I had any scans other than those used in Salvage Radiation.

    Thanks maack1

  • Correction:

    That should have been .07 at MSKCC.

  • Imaging may not be sensitive enough until PSA reaches closer to 2.0ng/ml. A prescription for possible inflammation in the prostatic bed wherein any benigh cells still remain might make a difference, but no certainty. Likely androgen deprivation therapy (ADT) as next treatment. If so, suggest first get your testosterone level determined for a base biomarker then initially start with a one month dose of the GnRH antagonist Firmagon/degarelix accompanied by the antiandrogen bicalutamide/generic of Casodex one 50mg tablet daily. After the Firmagon dose runs out at about four weeks have your testosterone level determined while at the same time switch over to the LHRH agonist Lupron with continued bicalutamide (if your treating Urologist - or if you switch to a Medical Oncologist - prefers in his facility Zoladex or Eligard or Trelstar, that's okay too). Likely with that switch from Firmagon to one of the LHRH agonists - and particularly if your testosterone level is coming down - you will likely be administered the LHRH agonist at a dose lasting 3, 4, or 6 months, with subsequent PSA and T levels then again checked a couple weeks before that drug wears down and prior to the next appointment with your doctor to make sure both PSA and T have dropped to clinically castrate levels (PSA down into ultrasound level below 0.1ng/ml and T dropped down to or below 20ng/dl). With ADT there are side effects that are part of the baggage that you may or may not experience. Most are identified here: . I would also suggest with a next blood draw to have both your Prolactin level as well as 25-hydroxy Vitamin D level determined. Reasoning for Prolactin level: Reasoning for Vitamin D3 level: . Likely a good idea to also have both your bone mineral density determined for possible development of osteopenia or osteoporosis with a DEXA or QCT scan; and bone resorption checked with a deoxypyridinolene/Pyrilinks-Dpd urine test. If it is determined you do have bone mineral density issues, DO NOT be prescribed and start a bisphosphate like Zometa or other bone medication Xgeva/denosumab before having all dental work completed before-hand....once on these drugs it is important to not have any tooth extractions or dental work that might compromise the jawbone. PLEASE, PRINT OUT AND DISCUSS ALL THE FOREGOING WITH YOUR TREATING PHYSICIAN. Keep in touch via email to (If unable to open these references by a simple click, then copy and paste to the internet to open).

  • You gave me a lot of information. We are on our way to Florida for a week. The plane is getting ready to go.


  • JEKNY,

    Glad that you have found our list. In reading over your comments I have the distinct impression that you have a date in mind when you believe that your prostate cancer will kill you. If you do I urge you to realize that nobody knows when they may expire. Just because you have advanced prostate cancer by no means will you necessarily die because because of this cancer.

    There are so many of us out there with advanced prostate cancer who have lived for many, many years. I was first diagnosed in 2001 and had a recurrence in 2004. This means that I have had advanced prostate cancer for 12 years. I am, by far, not the longest surviving person that I know.

    There are many men who make it to 20 and 25 years and then end up dying from something absolutely unrelated to Prostate Cancer.

    Given your email address and that you referenced a clinical trial at Memorial Sloan-Kettering I assume that you live in or around the metropolitan New York city airier. Malecare, the organization that sponsors this online support group, has a few different face-to-face support groups right in the city. These groups include a general Prostate Cancer Support group for anyone diagnosed, a general Prostate Cancer Support group for gay men and a group specific to advanced prostate cancer.

    If you would be interested in attending any of these groups let me know and I will give you specific instructions as to time place etc. All of the groups are free of charge what you need to do is to come and share with your brothers.

    When to share that you have cancer is always an individual issue. It depends when you're comfortable. This is the type of thing that you could discuss at the group if you wish to participate.

    It has been our experience that the men who make the best treatment decisions are those who take the time to educate themselves early in about their cancer and about the treatment options. Educating yourself at this point is vital.

    There are many different ways to educate yourself. One of them includes participation in a group like this one. O educating yourself at this point is vital.

    There are many different ways to educate yourself. One of them includes participation in a group like this one. Participating in a face-to-face for croup and reading as much as you can about the disease are also great ways to learn.

    At the Male Care web site ( in on the advanced prostate cancer blog site ( you will also find a wealth of important information that would be specific to you and your disease state.

    Traditional treatment options for somebody in your situation would be to consider starting hormone therapy, also known as ADT. If you read the literature basically you'll burn that I'm on therapy will work for 18 months. However, it still works for me and as I pointed out that snow over 12 years. There are a number of guys that I know who have been successfully using or moon therapy for over 16 years.

    When's hormone therapy does stop working we have a number of other treatments that also extend your life. There's no reason to believe that when and if you ever get to this juncture that they won't be other additional drugs available.

  • I don't have an end date in mind, but I do on occasion think based on my 2 treatment failures that someday I will be one of the 26,000 who succumb to this disease annually.

    I live 150 miles north of NYC and my insurance cover treatment at the selected Cancer Center for Excellence which MSKCC is for Prostate Cancer.

    I appreciate your feed back it will take me some time to digest but I have learned more in the last 2 days than I have been able to find on my own research.


  • It's good that you're hearing from Chuck & Joel that you have far more time left than one would think after the failure of a RP & of radiation. I was in your situation in 2004. My PSA when first tested in 2003 was 60.7. I was 61 but my (former) physician never told me about PSA. During my RP, there was capsular penetration, my Gleason was 3+4 & I had micrometastases in 7 of 14 pelvic lymph nodes.

    My PSA began to rise soon after the RP & again after the radiation. The doubling times were short. I read that those 2 indicators were the worst possible for survival. Doctors are famously conservative in their predictions, so I didn't get more encouraging news from them.

    And as I told you in the first reply to your original message, here I am 12 years after the failed radiation & 13 years after the very late diagnosis, on Zytiga (& prednisone) & still able to travel, go to grandsons' Little League games, enjoy life in many other ways, & be horrified by the state of presidential politics.

    One important thing I didn't say: TO IMPROVE YOUR SURVIVAL TIME, REDUCE STRESS & INCREASE PLEASURE (HAVE FUN!). This nugget of vital advice was given to me in early 2005, & really cheered me up. I began to see more live music right away, & at the end of the year, I retired. I have no way of knowing what percentage of my extended survival is attributable to diet & nutrition, or massage & acupuncture, or reducing stress (especially by retiring), or having fun, but it FEELS to me as though they're all important. Assuming you're good at enjoying life, I can't encourage you strongly enough to JUST DO IT!

  • Neal-Snyder,

    Thanks for the encouraging advise. My PSA is moving real slow (0.9) and we met with the radiology oncologist, he encouraged us to see the folks at MSKCC, but he wasn't crazy about starting hormone therapy so soon, he suggested to save that chip for later.

    We felt much better after talking to the Radioligy Oncoligist, and your suggestion ihas been well received.

    Thanks for the Great Advice.

  • JEKNY, I'm glad you liked my advice, & even more pleased about your meeting with the radiation oncologist. Certainly, if you don't need hormone therapy yet, you should enjoy your life without its side effects until you do need it!

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