I Could Use Some Help

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sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 9/22/2006 9:09 PM (GMT -7)   

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 46th 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


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 9/23/2006 6:19 AM (GMT -7)   
This is a very important message, especially for us, Sterd. We are awaiting our first PSA results (Oct. 3). Husb. had daVinci on Aug. 2. We progressed from a 10% of 1 core and Gleason 6 to pathology report of aggressive Gleason 7, highly cancerous (something like 75%) with some cells escaping into fatty tissue. (Original PSA was low 4.2, but had doubled in a year and was going up monthly.) Our surgeon did not recommend any action at the surgical followup, but of course, we're petrified of what the PSA number will be.

We've discussed what to do next, but don't know, either. Our neighbor, who is a doc compares radiation to "pouring in super glue and stirring it up." The little we know about hormone therapy is loss of sex drive and other not-so-nice side effects.

I've made a list of what you are doing as preventative measures and we'll be adding pomegranate to the routine.

I'm very encouraged by your PSA results - it gives us new hope while we wait out the next few days - it's been a very long stretch. We went in wide-eyed and bushy-tailed, believing it would all be over, based on the original biopsy. There are probably many other things we could be doing as well - and this will help provide a lot of information to new folks coming in.

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2248
   Posted 9/23/2006 7:57 AM (GMT -7)   

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


Age 57  PSA 2.5  Gleason 5   Open Radical Retropubic Prostatectomy/Bilateral Nerve-sparing  6/21/06  Cancer confined to prostate  No further treatment


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 9/23/2006 11:07 AM (GMT -7)   
Hi Guys-

Just my 2 cents about hormone therapy, if that's an option for you. I've been on Zoladex and Casodex for almost 2 years. I started when I was first diagnosed. Then went thru external beam and HDR brachytherapy. But, back to hormones: my side effects have been slight hot flashes in the beginning and nothing now, very diminished sex drive - but not completely gone and waking up every 10 or 15 minutes all night. I tried all the fancy new sleeping RX's, but they only worked for a week or so. I was then put on generic Restoril, and I have no trouble sleeping.

Lupron and Zoladex are supposed to be exactly the same - only different manufacturers. However, all the "horror" stories about side effects seem to come from guys on Lupron; I've yet to see anything here or on other boards from guys on Zoladex.

The point of all this is to advise you not to write off HDT if that is what is prescribed.

-Gordy

GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 9/23/2006 1:13 PM (GMT -7)   
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.

Jwife
New Member


Date Joined Sep 2006
Total Posts : 13
   Posted 9/28/2006 5:59 AM (GMT -7)   
Sterd, being a brst ca survivor, I have also studied anything on prostate b/c they say it's the sister disease to brst.
about 2 yrs ago one of the Universities was testing Zyflamend in the lab with good results. I beleive alot of diseases are inflamitory related. This product has alot of anti inflam. things like ginger, turmeric etc.
There was also a study with using selenium, which for me was one of the few supplements I wasn't taking and there was a genetic study on this.
I beleive in the men's study they showed good results.
Jwife

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/29/2006 6:44 PM (GMT -7)   

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 2nd 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~


mama bluebird - Lee & Buddy 53
RRP April 3, 2006   PSA 4.6 Gleason 3+3=6 T2a   Confined to Prostate
June 29th PSA Less than 0.1 Non-detectable  :)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 9/29/2006 7:56 PM (GMT -7)   
Strerd,
I too have been giving your post some thought. My thoughts come
quicker some days than others...not to be funny!
 
U of M, good plan! Our family use the U of everything and know the cancer center all too well. Any idea who you're seeing?
 
  Suggestions from the weed eater...
 
1. Selenium....more than half of diagnosed cancer patients are
    deficient.  (200mcg). There is a U Doc doing a study on Selenium
    and I think the Pectin I think. Dr. Wood perhaps.
 
2. No fish oil necessary.
 
3. Modified Citrus Pectin....causes cancer cells to bind together   
   instead of binding to themselves forming tumors. See Life Extension and Entrez Pubmed's research articles.
 
4. Lycopene...showing promising results in slowing PSA elevations
    following Pca radiation/surgery. (30mgs)
 
5. Vitiman D....
 
Everything you're doing is everything anyone can do. Keeping you in
my thoughts and prayers.
 
Swim
 

wittler
Regular Member


Date Joined May 2006
Total Posts : 104
   Posted 9/30/2006 6:24 AM (GMT -7)   
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!
Kate
 
My Husband is 52 yrs old
* Diagnosed 7/13/06 with 11.4 PSA, Gleason 7,T2b and Negative Bone and CT scan.
 
* Had Open Radical Prostatectomy on 9/18/06
Gleason was reduced to 6, had negative nodes and negative margins. 75% of the prostate was affected.
 


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 9/30/2006 7:23 AM (GMT -7)   
To all Responders,
 
Thank you so much for your ideas, experiences, thoughts, and prayers.   I'm looking at these as I write.
 
I have some follow ups for some of the individual posts later.   My PSA test this past week was back up to .09.   I have an appointment with my doctor on Monday.   I 'm thinking about at least having a consultation with a radiation oncologist to discuss treatment outcomes and side effects.  As we have found out, this game is "hurry up and wait", so getting the preliminariares underway on radiation makes sense to me.  I'll certainly re-check PSA before I pull the final trigger on that.
 
In the mean time, I'm going to take care of myself, take care of my family, and get on with life.  Hang in there to all.
 
Sterd82

M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 10/2/2006 5:30 AM (GMT -7)   
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
Husband Jeff 56 years old
diagnosed July 27, 2006
PSA 6.5
2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 10/2/2006 12:56 PM (GMT -7)   
Again --- thanks for sharing and the encouragement.
 
I had my follow up appointment today and discussed the PSA results so far.   Basically, he said not to get too worked up unless we see a steady rise to above .2 -- and then to certainly look at additional therapy well before it hits 1.0.   We're going to check it again in four weeks.
 
He also said this PSA anxiety should subside over time.   Sounds good --- plus now I get four weeks to NOT worry about this.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/2/2006 4:41 PM (GMT -7)   

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


mama bluebird - Lee & Buddy 53
RRP April 3, 2006   PSA 4.6 Gleason 3+3=6 T2a   Confined to Prostate
June 29th PSA Less than 0.1 Non-detectable  :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 2/21/2007 6:58 PM (GMT -7)   

Hi ~ Sterd….

 

You continue to give us all “Strength” with your postings.  Thank you!!  :-)  

 

My last personal posting to you was on your thread back on 10-2-06.  No future responses/postings were posted on this thread… After searching back I see where you’ve posted a few times over the past several months giving strength to others in need. 

 

Haven’t told you lately but our thoughts and prayers are with you!!  Thank you for staying with us and sharing your continued journey.  You have truly been strong in your fight and continue to be.  I respect you so much for the strength you have.  It truly adds so much to all of our lives.  Please continue to stay with us.  And I’ll try not to be a stranger…  Those vacations in October and December got me behind the 8 ball and I’m still finding that I’ve missed touching base with a few friends.

 

Take care and know that you are very important to this forum…  I hope you’ll update your personal thread as time permits.

 

Keeping you close in thoughts and prayers.

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 2/22/2007 7:20 AM (GMT -7)   

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

 


Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Still researching and deciding treatment options.  Leaning towards da vinci robotic.

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