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First Visit to the Oncologist

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Posted 6/24/2009 7:08 PM (GMT 0)
We went today and it turned out to be an oncology nurse. She said the path report didn't indicate positive margins.The doctor told me they scraped alot at the rectum area but couldn't take it any closer. When the surgeon gave us the path report he said the only thing that mattered was the positive lymph node and was suggesting radiation and mentioned hormone therapy, but said it was controversial. Anyway, before I brought up the positive margins issue, she was set on starting him on hormones. I told her I thought it was the protocol with locally advanced cancer to start with radiation and then give hormones if theres a psa rise after radiation, indicating it's systemic. She told me that is true, but that he's a special case because he's only 47 and needs to take a more aggressive approach. She was ready to give him a hormone shot of zolodex on the spot, but agreed after what I said about it being outside the capsule around the rectum that she needed to get the slides and determine whether there were positive margins before ruling out radiation. She seems intent on hormones regardless. She seemed pushy altogether, I think he needs a little time to think and should wait until he gets a second opinion from another oncologist. She also thought given his age that the hormones may only work about 6 months. I would GREATLY appreciate any feedback at all, today was rough.

Prayers out to all,

Dana

Posted 6/24/2009 7:19 PM (GMT 0)
The hormonal therapy is used in conjunction with radiation to improve the chances of killing the cancer cells especially in the area of limph nodes, where they cannot deliver high radiation dozes. I am on the same protocol, but as a salvage not adjuvant treatment. I believe you first start Casodex to prevent "flair" (rise in testosterone level that may cause rapid cancer growth), then you get the shot (Lupron in my case). I would suggest to look for another doc that you can talk to. Get a couple of opinions. Talk to radiation oncologists. Get a copy of your pathology report and read it yourself, dont let them interpret it for you. You have to do your due diligence first. Go with the doc you feel comfortable with, can talk to, who explins things to you and does not push.
Posted 6/25/2009 12:47 AM (GMT 0)
Dana,
If a lymph node was positive then it is not locally advanced; it's systemic.
By all means get another opinion from another oncologist. The recommended treatment is hormone therapy with radiation to the lyphnodes. Usually radiation is given to the pelvic lymphnodes, but may also be given to the upper lymphnodes. I would be surprised that any doctor would not recommend hormone therapy in this case.
A good book to read is "Beating Prostate Cancer, Hormone Therapy and Diet" by Dr Charles Meyers.
ATD3 is the standard protocol, Casodex for 7 days prior to Lupron or Zolodex and Proscar. This works much better than Zolodex or Lupron alone.
Good luck and be sure to go to an oncologist that specializes in prostate cancer rather than to a regular medical oncologist. There is a list of oncologists on the Prostate Cancer Research Institute's website. There is no way I would take a treatment recommended by a nurse or urologist instead of a prostate oncologist.
JohnT
Posted 6/25/2009 2:46 AM (GMT 0)
Thank you so much for the replies. I think my main confusion is whether it's locally advanced or systemic. I tried asking her today and couldn't get an answer. The Dr. Charles Meyes you mentioned spoke at the forum we went to last weekend. He was super impressed by him.  I will pass along what you've said.

Dana

Posted 6/25/2009 5:46 PM (GMT 0)
Yikes-the surgeon's office told me today that the oncology nurse yesterday totoally missed the positive margins in the path report. I made her read it twice and she still wrote in her notes that the report didn't indicate positive margins. Actually, it said it was extensive on both sides. THANK GOD I questioned her and didn't let her TELL Bill what she was goiong to do to him. The surgeon's office disagrees with her and thinks he should have radiation first, then wait for the psa to rise before giving him hormones.

Dana

Posted 6/25/2009 10:10 PM (GMT 0)
Dana, you just easily proved the power and importance of being pro-active. Good for you.
Posted 6/26/2009 12:57 AM (GMT 0)
DanaA:

You're entitled to copies of ALL your reports and records.  I wouldn't trust anyone with a recitation of my two path reports (biopsy and post RP).  I got both reports in hand and  I memorized both of them.  I carefully write down any test reports I get over the phone,  and I have the caller (usually an office nurse) repeat the information twice.  This is NOT rocket science.  Anyone of average intelligence can understand what the reports say.

It's true they won't give them to you unless you ask, but you CAN get a copy of your entire file for the asking.  No one is going to watch out for #1 like you will.  You've just seen an example of that.  With the path reports you can plug the info into SK's nomogram (be sure to click on the button below for advanced info for medical professionals.  You have all the info in the path report).

 You can then get a statistical prognosis from the site, and plan for the future. 

    Lupron is the devil, but it's a necessary evil in many instances when the PCa escapes the prostate capsule.  The side effects are no fun, but the consequences of untreated cancer are far worse. 

Lupron is HUGELY profitable for the doctor's office.  The links below give you an idea of the potential abuse possible when doctors are corrupted by greed:

http://faculty.msb.edu/homak/homahelpsite/webhelp/Pharma_Whistleblower_Lupron_BW_6-24-02.htm

http://www.politicalfriendster.com/showConnection.php?id1=7605&id2=2995

http://www.nytimes.com/2001/10/04/business/2-drug-makers-to-pay-875-million-to-settle-fraud-case.html

Your doctor sounds like my FIRST urologist.  I'd be wearing diapers right now if I had listened to him.

 

Posted 6/26/2009 12:57 AM (GMT 0)
This is the world of PCa amongest even brilliant docs, they disagree, they have various protocols and mindsets. Some even have agendas for their protocols and or financial ends considered in treating patients (they may not admit or mention such...why should they).

You don't have to believe me, that is fine. But notice what you already have witnessed. Read hundreds of these posts right here on this group, and weigh the results. Do you see how PCa is in the real world? Goto other forums and read what is said and discussed and see patient outcomes, results, complaints, and successes. It varies more than you would even guess.

We all hope PCa is localized, is their a totally definitive way to know that is 100% or even close to that?????? The answer is No...if someone wishes to challenge this fine show us your information or anything of value to consider it for fact. We are dealing with plenty of unknowns and so are the docs and methods used. Get more opinions and information, then armed with that decide what risks or treatments you might wish to consider and or when is my personal advice. There are alot of avenues to go forth with on this, and many can be just as correct as another. There is so much controversy on PCa treatments, that even not doing treatment is weighed in as a choice even for risky patients, seems less than sane....this is PCa. Do question everything pitched or put before you is reasonable advice, don't be afraid to talk bluntly to your doc....if they don't give you reasonable answers to decent questions, take that as a possible clue.
Posted 6/26/2009 8:30 AM (GMT 0)
Dana,
Small world. This is a flash back for me. My case is nearly identical. And aside from the confusion from the nurse, my first visit to oncology came with the mention of the controversy and the uncertainty ahead. My surgeon, stopped at the rectum, was certain I would be stage IV, and also removed 10 lymph nodes, but they were clean. But my seminal vesicles were bilaterally involved. You can see my stats below.

I chose a proactive approach. And after debating my research with my oncologists suggestion that radiation would not work for me, he agreed that if I chose adjuvant hormone therapy, he would agree to adjuvant radiation. I have had an undetectable PSA since. This was two and a half years ago, about. Today, my oncologist has lightened up about radiation in T3x cases with up to two lymph nodes incolved. He and I had a great meeting in May where he stated that the approach we took has since become accepted. I will stop hormone therapy in September. We are going to give it a shot to see if I have a durable remission. At this point, the only difference between Myers and my oncologist is on the use of finesteride with Lupron/Casodex. I can't complain because of my string of undetectable PSA's has been a blessing.

I am optimistically cautious, but we have much to be thankful for. I was 44 when all this started, and as of today, I am celebrating my 47th birthday. My best advice? Stay Positive. A positive mind set can go a long way with quality of life.

Peace to you, to go along with my prayers and good will.

Tony
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