Just diagnosed with PC

[dcell7]

I was just diagnosed with prostate cancer this week. I am not new to Frank Talk and have been here for a while for ED. Doc said it was caught early. It is grade 6, slow growing. I had the biopsy 2 weeks ago after he found a small nodule in a rectal exam. My psa has gone from 0.5 to 1.0 in just over a year. I was 0.4 to 0.6 for many years prior. White count was a little elevated ,too. I began experiencing increased urgency to urinate over the last 1-1/2 years. I guess all that pretty much says something was going on? I am 63 and never had cancer before. Family history on my mother’s side is rife with cancer, mostly colon. I am supposed to meet with him next Wednesday to discuss options. I guess I’m looking for opinions from folks who have had to make the choice between actively watching and surgery. Incontinence and worsened ED are a concern to me as well as insurance timing. I am 2 years from Medicare and have private insurance from my wife’s employer. She is facing an upcoming layoff/retirement, so we will have the option to COBRA at an outrageous price. I am leaning toward the surgery option because of family history and insurance. I was going to this doc for ED and was getting ready to do a trimix trial when he found this.

[Spartan]

I can relate my experience. I was diagnosed last spring with PCa. 5 of the 13 biopsy samples were Gleason 6. My PSA was only 2.0, but that was an increase from 1.0 over a period of three years. My uro sat down with my wife and I to go over the diagnosis and treatment options, and encouraged us to go home to do our own research and get a second opinion. I got my second opinion at Mayo Clinic here in Phoenix, and opted for the robotic assisted prostatectomy at Mayo. We chose that method because my health is very good, and the outcomes are good with the surgery. My attitude was to just get rid of it. There was no sign of any metastasis from the tests before surgery.

I did consider radiation, but decided I liked the idea of just getting rid of it. The pro of radiation is no surgery, but you can still end up with the side effects in the long term, and surgery is a difficult plan B after radiation if there is a recurrence, because of scar tissue from the radiation.

The surgery went well. I would make the same choice again. It was discovered during the surgery that one side of my prostate was adhering to the side of the bladder. That meant a little more surgery requiring a bladder reconstruction. Uro said that happens about 1 in 100. The post-surgery pathology also showed a sample of Gleason 7 in the other lobe from the lobe with the 5 Gleason 6 samples. That means that there was a spot of more aggressive ca that was not detected in the pre-surgery biopsy. As a result, instead of being on a 3 month recall for two years, it will be 3 month for three years. It makes me really glad that I had the surgery. So far I am 7 months out, and no detectible PSA!

My bladder control came back and I got off pads at 7 weeks, to the surprise of my uro. My uro has been proactive about the post-surgery ED. He started me on daily Cialis 5mg and a VED at one month post-surgery. Insurance paid for both. At my sixth month check up he changed me to trimix injections as the Cialis was doing nothing. The trimix works like a charm, and I can live with this solution as long as I need.

A couple of years ago, I went to work part time and went on an employer provided Blue Cross Blue Shield, and off Medicare Part B. I would encourage you to do what you need to do before going on Medicare. Even though it may be expensive, I would go on Cobra as long as you can, up to Medicare. At this point in your life, you do not want to have a lapse in coverage.

I would definitely have another opinion. Go with the doctors with the most experience in the treatment that choose.

That's my experience. You can send me a PM, if you like.

[Cajun Jeff]

dcell, sorry to hear about the PCa. I recomend that you check out healingwell.com go to the prostate cancer section.. Some of the same guys here are on that site. That site deal specificly with PCa and treatments. You have lots of options. Time for you to get knowledge. Introduce yourself there and the guys will gent you lots of soucres of info. You do not need to be in a rush.. you Dr may push for you to make a decision ASAP but let him knkow that you need to get more info.

Most Uro's are do the surgery and almost all of them will say you need to cut it out. I did exactly that but there are other choices.

Cajun Jeff

[bob1138]

Sorry to hear about your recent PCa diagnosis.
I had an Open Radical Prostatectomy on February 2004 after being diagnosed with PCa in January 2004.
In retrospect, this was the correct decision for me ---- Post-op PSA remains undetectable as of December 13, 2011.
I completely agree with Jeff that you should become as informed as possible about all the treatment options currently
available to you before making your final decision on which path to follow.
At a minimum, I would get a second URO's opinion and meet with both a Radiation Oncologist and Medical Oncologist.
As Jeff stated, there is a wealth of information available on www.healingwell.com --- bunch of great guys and wives too.
I wish you all the best with whatever treatment path you choose.

Bob

[regain-is-the-aim]

D:

Sorry to welcome to this growing group of PCa veterans. Like you my PCa diagnosis was a complete surprise and my PSA was 2.8. Like Sparty I decided on robotic surgery after having my case reviewed by 2 other Uros. It was a wise course of action and I would do it again. You are young and if, in good health, you have a lot of living to do!!! There will be ED issues regardless of which course you choose and if the PCa returns, as I understand, the surgery gives us more options. I DO NOT believe that "watchful waiting" is viable for younger men. NO WAY! We need to GET the PCa while it is contained and your biopsy can not find each and every PCa cell the prostate may hold; so there is a very good reasoning to do the surgery. My robotic surgery was "simple" and the recovery was amazingly quick and easy. To my schedule, I scheduled my surgery some 5 months after my diagnosis. All my docs were comfortable with that choice. Yes, I do have ED issues but the continence issues dissipated within a reasonable time (I had no leakage issues before and started kegel exercises well before my surgery.

I will be most willing to talk with you about my experiences by PM or telephone if you wish. This is a do-able journey and many of us are here to assist in any way we can. I only wish I had the benefits of these guys when I began my journey. I had a brilliant surgeon but he didn't give a dam about hard. I was almost 4 years behind the curve when I found this place and it has been an amazing support team for me. Even I have made great strides and, besides, penile rehab therapy is fun and must be done often!!

There is a new penile rehab protocol from a major medical center available and if your surgeon doesn't have it- I can send it to you to share and begin a conversation. This protocol begins its work BEFORE your surgery. Remember, you will be no better with erections than you were before surgery; but you should be able to get back to a good hard with work, effort and time. I understand the insurance issues and leave those to your knowledge of your policy and events.


My best, and if I can assist; please let me know.

Regards,

Dick

[isnip2000]

Dear Dcell7-
Truly sorry to hear that your dignosis was positive. I will share my story with you and even before I do- I must say DONT WAIT- HAVE SURGERY- that is The Gold Standard for treatment. Both the robotic and the regular surgery both have about the same rate of cure. EARLY DETECTION EARLY CURE- DONT loose sight of the fact that it is your life. Do it now and the insurance should have to cover the entire procedure from start to finish. OH yes, If there is a medical center near you i suggest you go to where they specialize in nothing but prostate cancer surgery. I live in West Texas but we drove to M D Anderson in Houston- about an 8 hr fast drive. I will forever be thankful that i did. We have good doctors here and a regional cancer center but they dont even come close to the service given at M D Anderson.

I was diagnosed with prostate cancer in Sept 2009. I hand a radical prostatectomy on Feb 17, 2011.
Have you heard early detection early cure? If it is positive treat aggressively!
Now the latest buzz in prostate cancer is 'oh, it is slow growing, you can adopt the wait and watch with tests every 6 months". Most men die with cancer not of it" DON’T LISTEN

My biopsy showed 2 small 'slow growth' "spots" my PSA was 4.5- I made and appointment at MD Anderson and they did another biopsy only to see if it was near the edge- it was not according to the biopsy.

I was given the choice of watching and waiting- Radiation- or radical removal. I am a Pharmacist and had already studied the choices. Radiation, if effective burns the surrounding tissue- thus if you have radiation fist they USUALLY can not do a surgery to follow it up.

Watching and waiting is dangerous.

I had the Robotic surgery and when they did the biopsy post surgery there were 4 cancers, not 2, and one had just escaped the capsule.

The doctor was able to get it all we think- another month waiting and you would not be getting the information- i would either be dead or dealing with the spread of cancer. Later the doctor told me that the only accurate biopsy was the post surgery one. The gold standard in the treatment of cancer is surgery. Please don’t put it off. If i can be of service to your or help you in any way please contact me.
Look at it this way- God has blessed you in that you have an early diagnosis of the cancer. May God bless you with a positive outcome from the surgery.
Isnip2000@yahoo.com
Darrell

[isnip2000]

Dear Dcell7-
Truly sorry to hear that your dignosis was positive. I will share my story with you and even before I do- I must say DONT WAIT- HAVE SURGERY- that is The Gold Standard for treatment. Both the robotic and the regular surgery both have about the same rate of cure. EARLY DETECTION EARLY CURE- DONT loose sight of the fact that it is your life. Do it now and the insurance should have to cover the entire procedure from start to finish. OH yes, If there is a medical center near you i suggest you go to where they specialize in nothing but prostate cancer surgery. I live in West Texas but we drove to M D Anderson in Houston- about an 8 hr fast drive. I will forever be thankful that i did. We have good doctors here and a regional cancer center but they dont even come close to the service given at M D Anderson.

I was diagnosed with prostate cancer in Sept 2009. I hand a radical prostatectomy on Feb 17, 2011.
Have you heard early detection early cure? If it is positive treat aggressively!
Now the latest buzz in prostate cancer is 'oh, it is slow growing, you can adopt the wait and watch with tests every 6 months". Most men die with cancer not of it" DON’T LISTEN

My biopsy showed 2 small 'slow growth' "spots" my PSA was 4.5- I made and appointment at MD Anderson and they did another biopsy only to see if it was near the edge- it was not according to the biopsy.

I was given the choice of watching and waiting- Radiation- or radical removal. I am a Pharmacist and had already studied the choices. Radiation, if effective burns the surrounding tissue- thus if you have radiation fist they USUALLY can not do a surgery to follow it up.

Watching and waiting is dangerous.

I had the Robotic surgery and when they did the biopsy post surgery there were 4 cancers, not 2, and one had just escaped the capsule.

The doctor was able to get it all we think- another month waiting and you would not be getting the information- i would either be dead or dealing with the spread of cancer. Later the doctor told me that the only accurate biopsy was the post surgery one. The gold standard in the treatment of cancer is surgery. Please don’t put it off. If i can be of service to your or help you in any way please contact me.
Look at it this way- God has blessed you in that you have an early diagnosis of the cancer. May God bless you with a positive outcome from the surgery.
Isnip2000@yahoo.com
Darrell

[Spartan]

Darrell's experience is consistent with my story above. Like Darrell, the post-surgery pathology showed more cancer in the prostate than had been shown in the pre-surgery biopsy. Again, go to someplace with a lot of experience. For Darrell it was MD Anderson, for me it was Mayo Clinic. We are fortunate to have both M D Anderson and Mayo in Phoenix. Although we have Cancer Centers of America, I don't know about their practice with PCa. I would make sure that the uro you select is willing to discuss the side-effects up front, especially erectile rehabilitation. I was fortunate to have a uro at Mayo who is up front about it and proactive. Having been on FrankTalk, I've discovered that is not always the case, and I am very fortunate to have world class doctor -- as described by a doctor friend of mine.

I've haven't known or known of anyone who regrets having the surgery. I do know of men who had radiation or watchful waiting who do regret their decisions. Hardly as scientific study, just my observation.

Frank