recently diagnosed

Mustbmark, Sorry to hear you news. I recommend that you get in touch with Tony. He lives in Las Vegas. Best of luck

Cajun Jeff

PS I just shot Tony a message to try to get him to contact you.

Post Edited (Cajun Jeff) : 1/3/2013 10:49:25 PM (GMT-7)

Hi Mark, and welcome to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on.

What you have shared with respect to your PCa stats seem to me a little confusing - a G6, 4 of 12 cores positive, and a "high stage 1-2" - they don't seem to add up, unless the amount of cancer in the 4 cores was really high. I'll defer to some of the guys out here that have far more knowledge than I do about that. It would also be helpful to share with us your whole "stat package", see my signature for an example of what most guys share here.

One of the first questions many will pose to you is have you gotten a 2nd read on your biopsy slides yet? Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is always a good thing.

You were told that you are "too young" for radiation - and IMHO in today's world that's a load of crap. I was told the same thing by the head of urology at a major medical center here in the midwestern U.S. His point was "at your young age and excellent physical condition you have a better chance at handling the surgery and also the side effects." My immediate reply to that was, "and, if either the surgery goes south or I have the SE's then my young age and excellent health all go to hell and I am faced with even more years of that due to my young age." As you can imagine "HE" didn't like being challenged like that - but honestly I could care less as this is my body, my life and quality of life we're talking about here.

Whew, sorry, I'll get off that soapbox now - it's just that I get tired of hearing that now very outdated comment "you're too young to do anything but surgery."

Now, does that mean that surgery is not the best for you? I can't/won't say that - again if you find yourself having to decide on a choice of treatment that will be your call - this is a very personal decision and likely one of the biggest decisions you'll make in your life.

I would simply suggest that you talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. When you do, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining;" same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so again if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you in this journey.

Mustbmark:

First off, with your Gleason score of 6, you have low-risk localized disease.  This is not an agressive type CaP.   Please keep that in mind.  

I'm not sure what you mean by "high stage 1-2".   You may not have heard everything the urologist said because it was a stressful time.  It's usually a good idea to bring someone with you to appts. that isn't so emotionally involved.

You are the first patient I know of that was told that age precluded radiation. That was just one radiation oncologists opinion, wasn't it ? He doesn't speak for all ....

One good thing about CaP is that you have MONTHS, not weeks ( according to John Hopkins Urology ) to get all the info. you can before making YOUR decision.  So try to relax a bit and gather your thoughts about how you will approach this situation.  It is YOUR decision what to do, not the Docs.  You will have to live with it.

I recommend that you hop on the CyberKnife Patient Forum and ask the R.O.'s there what their opinion is.  You can usually get an answer in a matter of hours. Go to the Accuray website ( manufacturer of the machine) to get a link to the Forum. Do a Google search for the Accuray website.

Also, here is a link to a webpage with some info. you may find useful :

http://members.triton.net/vandenbe/CAP/CaPArticles_AUAGuidlines.htm
There is an article that will explain what your pathology report means.

Remember, you have low-risk disease.

Good Luck on your journey.

JAVGuzzi

Oh Mark you have one the best and well know oncologist in Las Vegas at Comprehensive Cancer Center..Dr. Nicholas Vogelzang. You can see him on you tube. Not that your dr isn't good but a second opinion can't hurt, and living in LV since 1962, we now live between LV and CT. The drs here in CT referred us to Dr Vogelzang because they knew we also lived there and my husbands cancer is very aggressive. Wishing you the best.

Hi mustbmark,

Wishing you the best of luck with whatever treatment you choose.

I'm guessing that they said you are not a candidate for radiation strictly because of your youth. I don't think this is considered true anymore, but radiation treatments have previously been thought to trigger their own cases of cancer circa 15 years down the road.

At the age of 52, the doctor may have been thinking that you would not want to let EBR cause a new case of cancer around the age of 67, when you would still have a long life ahead.

I could be wrong, but I'm guessing this is the reason they told you this. You should probably talk to a couple different radiation oncologists from large medical centers where they specialize in PC.

Good luck!
Chuck

7/11 PSA 6.41 (4.1 2009) DRE-BPH,no lumps PCa Dx 8/11 age 62 adenocarcinoma 3/20 cores,T2C Glea 3+3 DaVinci prostatectomy 11/1/11 Mayo Clinic, nerve sparing Dr. Matthew Tollefson-highly recommend! Pathology-tumor confined to prostate 5 lymph nodes, seminal vesicules, extraprostatic soft tissue negative 1x.6x.6 cm mass involving R post inferior, R post apex, L mid post prostate R post apex margin involved by tumor over .2 cm length
Catheter out 7 days, no incontinence
Post-op exams 2/13/12, 9/10/12, PSA <0.1

Mark,
You are very fortunate to have Tony in your "neck of the woods" along with a renowned "oncologist"..Whatever you decide to do you will be fine..I would recommend that you consider the "side effects" of each option or the possibilities of having SE's...If you elect to go with radiation, drink plenty of fluids before each treatment--LOL..I must not have since I wound up with a mild case of "freezer burn"
Bill

Mustbemark,

I'm the same age as you and I did have a few people tell me that at my age surgery was a better option. Interestingly, once I talked to doctors that specialized in prostate cancer that were treatment neutral, I never heard that comment.

For my part, my age didn't really enter into the equation. I was leaning toward surgery, but decided against it because as a Gleason 9 there was a pretty decent chance that surgery wasn't going to do the trick.

As a Gleason 6, I think you have more options and LOTS of valid choices ahead of you and you need to determine what's right for YOU. That said, I would follow the advice above and get another read on your biopsy slides, particularly since your PSA seems relatively high for a G6 (smart guys, please correct me if that statement is wrong).

Best of luck!
Michael

Hello Mark.  My husband is older than you; he was a Gleason 6 (after surgery 3+4=7).  Do your research and get that second opinion.  From the time Ron was diagnosed until surgery it was 4 months.  It sounds like you don't have to rush in your decision, so check out all the options.  Check out the SE (side effects) and be sure to do Kegel exercises as soon as you can.

This is a great forum and you will find everyone is quite helpful.  I wish you the best as you make your decision!  Take care.

Peace,

Aimzee

I want to thank everyone for their support and advise. i am getting a second opinion as I have other issues regarding my bladder and was told this has nothing to do with the cancer, I frequently go, like every 2 hours, even at night, can't sleep long as have to get up.

Maybe this is why radiation is not good at this time. I am not sure, but seeing another Dr. at another company as my old references I was sent was to the same company.
I will try to post my stats as I read them on my path report. Forgive me if it does not smart, like all yours. Again thank you so much. Will let you all know what i find out as maybe it will help someone else out her on this site.

Biopsy report date: 11-27-12
4 of 12 needle core biopsy was Gleason score 6
1st- 3+3=6 Rt side 20% of biopsy (Adenocarcinoma)
2nd- 3+3=6 rt lateral apex (same as above) Gleason 6, 50% of biopsy
3rd- 3+3=6 rt side lat. base 20% of biopsy
4th 3+3=6 left side 10% of biopsy
the other 8 biopsy cores shows benign prostatic tissue
PSA 10/08/12, 12.9
PSA 10/2011, 14.0
age 52

Thank you Tony, supposed to her from scheduling dept from Dr.Lowenda on Monday. Again thanks for everything. I have noticed a lot of feedback and reading other posts that City of Hope & Mayo have been prominent in surgeries and others. Still trying to decide and think I have some time to decide.

Thank you and this site.

Mark