New member here...

[tvankirk]

Hi!  My name is Tracy and I'm 55 years old.  Diagnosed with prostate cancer in December 2015.  My cancer was found after experiencing BPH symptoms and an abnormal DRE.  Elevated PSA of 5.3.  Biopsy of 12 cores showed 2 positive at 60% and 70% volume.  Gleason 6 (3+3).  Im currently doing active surveillance with checkups every three months.  

[Vitruviusman]

5.3 IS HIGH..Cancer in 2 of 12 sectors. Can the doctor palpate (feel),  a tumor or bump in your prostate?  

[tvankirk in reply to Vitruviusman]

No bump, but my PCP and Urologist felt a firmness.

[Darryl Partner]

Hi Tracy  Good that you are not rushing into a concrete treatment, but, you are a young man with two significant core samples.  May I suggest that you have your biopsy read for a second opinion (more info: malecare.org/second-opinion... ) and that you consider a 3T MRI with an eye towards a fusion biopsy ext fall or winter.   

[tvankirk]

Darryl,  Thanks for the suggestions.  I've been in a tailspin and just now trying to figure out my next steps.  What I really need is a support group to attend in the Phoenix area.

[cajun1949]

Tracy, I know EXACTALLY what you are feeling....

Been there just wish I would have done more research

before making the final decision for treatment. Active survellance

was offered as one of my treatment options, but I was so concerned,

as you said in a tailspin, made a snap decision as to my treatment.

I hope all goes well, please keep us informed as to your progress.

[tvankirk]

I just had my PSA done and got the results back.  My PSA has went from 4.9 to 5.3 and now is 5.6 since my diagnosis in December.  I have decided to have a second look by Mayo in Scottsdale.  I don't want to be pushed into surgery.  I also don't want to play Russian roulette with my health and go too long to the point the cancer spreads outside the prostate. Thanks for the support, it really helps being on here with others who understand and get the emotions I'm feeling....

[cajun1949]

The second opinion sounds like a great idea. Best of luck with that visit! God speed. Let me know how that goes. 

[Tall_Allen]

You are a very good candidate for AS, although the strictest programs (like JH) might exclude you because the % cancer was higher than 50%. There are no standard inclusion criteria, but results seem to be excellent so  far with 20 years of follow-up among all low risk guys like yourself. PSA is not a very good measure of progression. I think PHI is better. Every Active Surveillance program (and I hope you are on a program and not just doing this yourself) includes a confirmatory biopsy within the first year. That biopsy should be targeted with a multiparametric MRI. I hope you are able to go a long time without suffering any side effects of treatment.

[tvankirk in reply to Tall_Allen]

I am being followed by a urologist who I'm seeing in two weeks for my first follow up exam.  I am taking 5 mg Cialis a day which has taken care of most of my urinary and Bph issues.  I'm still very hi anxiety over all of it....

[Tall_Allen in reply to tvankirk]

I think live PC support groups are good for allaying that anxiety. Many "civilians" just don't understand about this stuff and may not be able to give you the support you need. I found that psychotherapy and mindfulness stress reduction helped me stay in the present moment.

[tvankirk in reply to Tall_Allen]

I agree about the civilians not getting it.  Nobody has a clue as to the side effects and life altering impact, both physically and mentally.  I'm currently on an annual vacation with my husbands family in Florida, no one has even acknowledged my illness or asked any questions,  I feel invisible😞

[Hidden]

Hi Tracy, Randy here, live in Phoenix, did active surveillance for 2 years and past September 2015 had RP at Mayo. I turn 55 this month. My husband and I researched extensively and I had 4 doctor consults before deciding on DaVinci. Would be glad to chat on this site or meet up at Starbucks and talk in person. I'm a REALTOR and always travelling around the Valley. 

[tvankirk in reply to Hidden]

I would like to meet and have coffee.  I'm getting ready to schedule a second look with mayo and you may be able to recommend a doctor.  You are also the first real success story I've heard since being diagnosed.  I live in the biltmore area but I don't work, so I can travel to meet up.

[cornellk]

Hi Tracy. I hope you'll let us know how your followup goes at Mayo.

I understand the tailspin. My diagnosis was just under a year ago and I didn't really know what I was going to do. I was not expecting that diagnosis... literature had lead me to believe I wouldn't need to think about PC for at least another 10 years (I was 52). I went to the biopsy expecting to confirm it was BPH (I was having urination frequency and aches and pains associated with chronic prostatitis, PSA slightly elevated, nothing unusual with DRE). When I went in for my followup to go over biopsy results, I really wasn't prepared to hear that PC found in two cores and Gleason 3+4.

Over time, I chose RARP. As a personal choice, I think it was right for me. I thank this group (or its sort-of-predecessor yahoo group) for being a good sounding board, a good place where others shared their experiences, a place where I was not being pushed to do one thing or the other, a place where I'd feel supported in making my own decision whatever it was.

Looking forward to hearing about your continued care.

--- Cornell

[tvankirk in reply to cornellk]

My appointment with Mayo is tomorrow. I'm meeting with a doctor who was recommended to me by another group member, RandyPhoenix. I need to give Randy a big shout out for being so patient with some of my crazy questions. It was his counseling and support thats given me the motivation to move forward and take more control over my health care. This is a good group and I'm glad I found it. I'll post an update when I know something!

[tvankirk]

Well.... After switching doctors and moving my treatment to Mayo I now have a better idea where I stand with my prostate cancer. After reviewing my slides Mayo concurred on my original diagnosis but wanted to do the 3T MRI. They called me the day after the MRI and wanted to schedule a fusion biopsy as soon as possible, which I will have this coming Tuesday. I just got the Radiologist report and it rated me as having a PI-Rads 4 lesion in the right posterior peripheral zone of the mid gland. It stated that there was broad capsular abutment and that it may represent "imperceptible extraprostatic extension". I also had a genetics test that indicated the cancer was slow growing.

[IMAT2B]

Tracy: I am sorry that you have been diagnosed with prostate cancer, especially at such a young age. I speak from experience since I, too, was diagnosed in my 50's and had a radical prostetectomy less than two months later. (Biopsy indicated that the cancer was on both sides of my prostate.) I have experienced all the related side effects of the surgery and have made the necessary (if not fully satisfying) adjustments in my life. Like you, I am happy to be alive. It is that reality that we need to hold central to our lives. I wish you well and hope that you will let us know how you are progressing.

[tvankirk in reply to IMAT2B]

I ended up having RP and Dr. fuck-up at Mayo didn't do me any favors with his "nerve sparing" surgery. Left me with complete ED. He doesn't really seem to give a shit about it either. I was just another dollar sign to him...... He should have just made me a pussy while he had me on the table... the lifeless dick he left me with isn't good for much of anything else.....

[billd9946 in reply to tvankirk]

It can take up to two years to regain sexual function... there's still hope!

[billd9946 in reply to tvankirk]

It can take up to two years to regain sexual function... there's still hope!