I Could Use Some Help

This is pretty lengthy, but I could really use some advice……..

I’ve just started on this board and have made a few posts. Everyone is so helpful and supportive in sharing each other’s experiences with prostate cancer. I have no idea if anyone can give me any pointers, but here goes:

I was diagnosed this past May with prostate cancer. I had my PSA checked in March and it was 24. (On a fluke because I was asymptotic) Because of my age (then 45) we did antibiotics for a month and rechecked the PSA. It went up to 39. We did a biopsy (on my 46^th birthday!), and 8 of 12 cores were positive. We did the CT and bone scan, which were fine. I had a conventional retropubic radical prostectomy on June 9. I looked into Davinci, but decided to proceed with my original urologist because we felt time was crucial. Besides, with a PSA of 39, nerve-sparing surgery really was not an option. They don’t do lap RPs in my community yet, but my urologist has an excellent reputation

The pathology came back with a lot of cancer, and a positive margin at the bladder neck. The nodes and seminal vessels were clear.

I’m pretty much recovered from surgery. I feel fine. Continent, I’m getting used to VED for my ED. I’ve had three PSA’s since surgery --- .06, .09 and .04 (in that order). I get it checked again this week.

I’ve looked into adjuvant therapies --- radiation is an obvious option, especially with a positive margin. I know some people do hormone therapy as a preventative measure with high-risk cases. Right now, our mode is watching PSA closely and moving into therapy at the first sign of trouble.

I’m pretty much back to a normal routine--- work, wife, daughter, etc. I’m at high risk for recurrence, but so far no sign of residual disease. I drink pomegranate, eat soy, take a multi-vitamin, fish oil, I also take Nexrutine, eat lots of tomato stuff, avoid dairy and red meat, eat lots of fruits and veggies, regular exercise, and pray. I also have regular follow up check ups with my urologist. I also just made an appointment with an urologist at the University of Michigan for a second opinion, but can’t get in until December.

I could get real lucky and stay fine for 40 years, I could have a local recurrence that gets cured with local radiation, or I could end up with advanced stage disease, which is a different ball game. Of course, I could also get hit by a truck tomorrow.

What I’d like to hear from you folks is your thoughts on the nagging question that I can’t seem to get out of my head: WHAT ELSE SHOULD I BE DOING? I’m not really making myself nuts on this, but I’m trying to do everything I can, within reason, to get the odds more in my favor. Anyone have any suggestions?

Thanks,

Sterd82

Those nagging questions do occupy our thoughts and need to be resolved. While prostate cancer treatment has advanced in recent years, there are differing views about what to do for follow-up treatment.

I'd suggest that you definitely get some 2nd opinions.  The fact that your prostate margins were positive and the lymph nodes/SVs negative does give you reasons to explore further treatment or deciding to do nothing but monitoring PSA.

The treatments have side effects that should be weighed in the balance to see where treatment effectiveness trumps quality of life issues. Personally, given what you have written about your cancer, I would have a difficult time deciding what to do next. 

I have found this forum a helpful place to talk about my experience with prostate cancer.  Everyone here, whether men with prostate cancer or spouses or family of men with prostate cancer, have been very supportive as those who have travelled the same road. Take care and hang in there.

Tim

Gordy, you are so right. It's like when you first find you have cancer. You look at all the options and really don't want any of them! But we're all here and will deal/have dealt with each step - as you have - as we get to it. Sometimes it takes a little time to wrap your mind around the facts and then get on with the program. Plus, it's a great help to hear from those going through each process than to simply read the so-called "facts."

And these aren't just issues for "younger" guys. At any age, if you're physically and mentally active and forward-thinking, all the same things apply.

Dear Sterd82,   Thank you for sharing “Your Journey” with us and your concerns.   That’s what we are all here for!! To help each other along the path with prostate cancer and the path of healing/recovery…   It truly is a wonderful place to be able to talk through things… and know that now… You have new “friends” to help you when you see a wobbly stone you just aren’t ready to step on…   Pull from us… because we have a lot of extra strength to send your way.   Your posting touched my heart!   I wanted to reply back immediately but I wanted to process it in my mind before sitting down to write you.   I really had to talk through it with myself and with Buddy.     You are very young and you’ve got a few extra stepping stones in your path that many of us did not have… and only time will tell ~ if you have to step on them.   So ~ I wanted my words to flow when I responded.   Just so you know…. My words have to flow when I type and that means they come from my heart!   It they don’t flow… I don’t type them…. So please know ~ We care…   From everything you’ve written ~ you truly are doing everything that you can!!   With postings to your thread… you may find something new… Which will maybe ease your mind and you can add them to everything else you are doing.   Your PSA results this week and your 2 nd opinion in December… will also give you more answers.   But ~ Stop and think about this for a minute…. With the PSA’s being .06, .09, and .04….. These numbers are not in the panic zone… The CAT scan and bone scan were fine… The lymph nodes and seminal vessels were clear… all “excellent” reports!     So ~ take a nice long breath and take time to let your body, mind, and inner spirit heal… from the diagnosis, surgery, and now recovery.   You had 4 months of turmoil and just under 4 months of healing/recover time.     Living-one-day-at-a-time and enjoy each and every moment!!!   You’re right…. We are not promised tomorrow!   I will say this… you’ve already been hit by what several of us call the bus, hammer, Semi with 3 tractors…. And you’ve come through it very strong… it shows in your posting….   So ~ take time now… and let your mind quiet down for a little while.   This can be a wonderful healer for you.     Give yourself and your family the most precious Gift…   One Day At A Time……     Yesterday was history.        Tomorrow is a mystery.       Today is a gift.       That’s why it’s called the Present.   Know we care !!!   and we are keeping you close in our thoughts and prayers ~   In New Friendship, Lee & Buddy ~           ~           ~           ~            ~           ~           ~   "GOD Bless You"   It's a little prayer "GOD Bless You"... but it means so much each day, It means may angels guard you and guide you on your way.  ~author unknown~

Sterd82,
It sounds like you are fighting your battle up front and aggressively. You are doing your best and I will take note of your supplement list, as right now we only have the pomegranate juice on ours. I know it sounds like a cliche, but they really are coming out with new studies and findings all the time. I hope and pray that they find the key to curing this cancer or at least stopping it in it's tracks soon because this cancer (like all cancer) really sucks.

Hang in there! We are with you!

Sterd82,

you have a great attitude which will carry you through whatever you face. In line with what swimom said, Jeff's doctor recommended taking the supplement Prostate 2.2 which is available from www. theralogix.com. it is a supplement with the vitamins swimom mentioned and formulated especially for men who have had PC.

best wishes, kat

Hi Sterd82,

 

Ahhhhhhhhhhhhhh…. This is great news!!!   4 extra weeks of healing mentally and physically.  Let your mind rest ~ easy for me to say ~ right!!!

 

Truly… if you are able to just focus on day-to-day happenings with family, friends, and work…. You will be stronger when decisions have to be made.

 

Enjoy today for what it is……  a precious gift.  Open your eyes slowly each morning and know that today is the present you are going to give to yourself and your loved ones.  Hate to say it but you were right!!!!  That truck could hit any of us any time so lets have everything in order and say the words we need to say to others… just in case.  J

 

This means…. Enjoy each and every day to the fullest!!!!!

Keeping you close and will continue to keep you and yours close in thoughts and prayers.

 

In New Friendship,

Lee & Buddy

Sterd,

I think you are doing all the right things.  All the right things that I can think of, anyway. Only thing that I'm not really clear about is whether you are seeing a top-ranked oncologist for a second opinion. Someone like Scardino at Memorial Sloan Kettering.  Or Partin at Johns Hopkins. Somebody who has really seen a lot of different scenarios and has a very very rich experience base and close relationships with top-ranked peers who might be able to provide counsel.

If your current MD is already top-ranked or you've already seen a top-ranked MD for a second opinion, then don't sweat it.

Best regards for a smooth journey, my friend.

Markus