How long should I wait to decide??

Hello: I have never posted online but am scared to death and need some advise. 58 yo,single, active, but 20lbs overweight, and hadn't been eating the "right stuff". Good health other than a heart valve and knee replacement in 2009, 2010, respectively. (heart prob. was due to valve infection, not heart diseaseI) I don't trust my urologist. There is so much info out there, some of it contradictory, I am just wanting to make an informed decision.  Dec. 2010 PSA=3.6; Jan. 2013 PSA= 4.3; Aug. 2013 PSA = 6.2.  Biopsy in Sept. 2013, showed: 3 of 6 areas positive; 10% on left side (lower)= 3+3; 30% on right side (top) = 3+3; 50% on right side (middle)= 3+4. free PSA on lastest test= 8%. Urologist said my prostrate was "the size of a 25 year old", whatever that means. DRE positive, small area.  I see my urologist in 2 days. He is encouraging me to do "somethintg" within 2 months. One site place "Shades" indicated I was high risk because I ghad 2 or more of the itermediate SX (3). My questions are: Any thoughts on how long I should wait to make a decision and schedule intervention( probably will have to wait in line when time to schedule. I do plan to try to find a medical oncologist who specializes in prostrate. I have HMO so my options my be limited. I am leaning strongly toward open surgery, soon.

I would like to kknow what to ask my doctors RE: more tests to see if the PC has spread past my prostrate. My priority is to live. The side effects can be dealt with.   I know this is long, forgive me, just anxious I guess.

Mule Packer,

Welcome to the forum, sorry you have to be here but glad you found us.

The first thing you want to do is get a second opinion on your biopsy slides from a lab that specializes in prostate cancer -- say Bostwick or Epstein. Since you are going to be making big-time decisions based on that one biopsy you want to get the best information from it that you can.

Hi Mule Packer and welcome to Healing Well. Sorry you have to be here but this is a great site for both info and support. Prostate cancer is generally slow growing and I would certainly support a statement that you don't need to be rushed into any decision. Two months is most likely ok and it give you ample time to do your homework on our disease. And, I would certainly not label you "high risk".

Might I suggest you start with one of the sticky threads at the top of our forum that is designed for newly diagnosed men. Here is a link: www.healingwell.com/community/default.aspx?f=35&m=2652250

Next I would suggest that you consider getting a second reading on your biopsy slides by one of the expert prostate pathologists like Dr. Epstein (JHU) or Dr. Botswick (Bostwick Labs).

While you are getting a second reading on the slides, you might consider asking for one of the new bio tests such as Polaris or Prostavision that can give you some assessment about the aggressiveness of your disease.

Finally, don't be too quick to hone in on a particular treatment. You only listed surgery options in your survey and there are many other options that will likely cure your cancer such as seeds, IMRT, SBRT, etc. You need to research those and meet with expert practitioners in the fields to make an educated decision. And, please don't be too quick to dismiss the side effects. They can be onerous; if you read a lot of the posts on this forum you will see that many of them deal with nasty side effects from treatment.

Good luck and let us know how we can help.

Jim

Mule packer,
A few months waiting won't hurt. It is very unlikely you will ever die from your intermediate disease. With a felt nodule I would surely get a scan, either a multiparmetric MRI or a Color Doppler Ultrasound to see if you have cancer extending into the prostate bed. If likely this would make surgery a poor option choice and some type of radiation would be a better choice as it treats the margin as well as the prostate.
You should also take some time and review other options such as brachytherapy or external radiation as these would have less side effects and similar or better cure rates, especially with cancer close to the bed..
There is really no difference in outcome with open vs robotic surgery. Find the best surgeon and do what his speciality is. The skill of the surgeon is far more important than the procedure used.

Your diagnosis is serious but not dire. You have enough time to decide but no time to waste. Talk to several doctors. Feel free to talk to the doctors about options outside their specialties but remember that they are proud of their skill and the progress that has been made in their domains. Surgeons tend to recommend surgery. Radiation oncologists push radiation. Medical oncologists will talk about drugs. It's how they think, what they know, what they would do themselves in most cases if they were the patient. Bear that in mind.

Be sure to talk to more than one surgeon, at least one radiation oncologist who does brachytherapy, and a medical oncologist before you make your decision. Don't dawdle but don't feel rushed. You have enough time to make an informed decision. Any of several options will be equally good in terms of curing your disease. Staying alive may be your number one concern but, as long as you do something about your cancer that objective is not particularly in peril. Spending a year in diapers kind of sucks. Take your time.

I agree wit PeterDA's most recent post.

Form a team of 2 urologists/surgeons. one radiation oncologist and have a medical oncologist quarterback the team, but you reserve the right to call the plays.

They should not all be from the same practice to avoid the problem of self referrals, and as many as possible from national PCa centers.

As a G6, you have plenty of time to decide, after you also get another firm to reconfirm the G6 lab slides result.

LupronJim

Biggest red flag I saw was "I don't trust my urologist." You've got to find a doctor you trust! When I was diagnosed, a friend, who is an oncologist at UVa, said quite emphatically: "Take advantage of your proximity to a major metro area, get out of the "Community" and go to a cancer center where they have a facility dedicated to prostate cancer! The local urologist is doing bladders, UTIs, prostates, and kidney stones. You want to get to place where they are all dedicating their careers to fighting prostate cancer."

I'm not sure if you have access to any such facilities, but I think it would be worth traveling to, if you can. I went to the Sidney Kimmel Center at Memorial Sloan Kettering. They were awesome and inspired me with confidence and helped me decide what was the best thing for me. I first talked to an oncologist who specializes in treating prostate cancer that recurs. With Dr Autio's help, I felt like I made an informed choice. In fact, I think my surgeon, Dr Laudone, is a great man, not just a great surgeon, and my results have been fantastic.
Good luck! You are gonna die.....but not from PCa!
Mikey

ok, i get it. Great feedback. I see the urologist soon and will ask my pcp for a different referral re: urologist. I do have a appt. set with a local radiation oncologist, but he does everything not just prostrate. I am getting a referral to UCSF to see a surgeon. My HMO limits my ability to insist on treatment at Stanford or UCSF, but I am more than willing to pay for consults and testing out of pocket if need be. Is there a way they can determine if the cancer has gone outside the prostrate yet? It is the 50% percent piece at 3+4, and the fact it is on both sides that has me more concerned than anything right now.

Lots of advice and many options. I think having the slides reviewed and getting a second opinion on pathology is an excellent idea. If you are early stage my philosophy is very simple, get the cancer out of your body before it is too late. Once prostate cancer spreads the likelihood of cure is not very great. Surgery will result in some sacrifices, but that is the way of life. Also, research on the question of what happens if radiation fails. Surgery might not be an option at that point.

sounds like the key to my decisiion is leasrning if the C has spresd to the Prostrate bed. If not it sounds like all the options have about the same success rates --mortality, ED and Incontinence in the long run. Rest assured all the options and info u are providing is giving me lots of leads to research.

Mule Packer,

Whatever treatment you choose, try to really wrap your thinking around that choice and make it your own by feeling satisfied that you believe that it's the best approach for you. My biopsy this past August showed a low volume of cancer on only the right side in two cores and a Gleason 3 + 3.
Having just had RALP last Tuesday and receiving my path report today, I now know that my cancer was actually higher grade Gleason 7, 3 + 4 and it was actually bilateral (on both sides of the prostate).
And this was with a PSA of 1.6. I know I made the right choice before the surgery and am very lucky to have had the surgery SOONER than LATER.

Take all the time you need but not longer than two weeks.  that's what my doctor told me and that's my belief too.  fact is no one knows your actual risk level or how far your cancer has spread.  good luck to you.

ed

 

mule packer said...
If not it sounds like all the options have about the same success rates --mortality, ED and Incontinence in the long run.

I very much agree with Jim that there are major differences among treatments in their side effect profiles. Incontinence is virtually never a side effect of radiation, although urinary retention may be. SBRT and the brachytherapies have the lowest associated ED rates.

You are right that cancer mortality rates for intermediate risk are very low for any treatment; however, there are differences in treatment failure rates among the various treatments. This is often measured by "biochemical failure," which means PSA progression after treatment. Here are the 5-year freedom from biochemical recurrence rates (biochemical recurrence-free survival - bRFS) from some of the best practitioners for intermediate risk disease:

LDR brachy(+IMRT) - 97% - Taira et al, UW Seattle, 1656 men, 1995-2006, 12-yr bRFS
HDR brachy (monotherapy) - 94% - Rogers et al, GammaWest, SLC, 284 men,
SBRT - 93% - Katz, King et. al., 8 institutions, 1100 men, 2003-2012
IMRT (86 Gy) - 86% - Spratt et. al., MSK, 1002 men, 1997-2008, 7 yr bRFS
IMRT (80 Gy) - 78% - Zelefsky, et. al., MSK, 561 men, 1996-2000, 8 yr bRFS
RP - 77% - Hernandez, Partin, Han et al., Johns Hopkins, 6652 men, 1984-2005
Proton - 65% - Slater et al, Loma Linda, 1255 men, 1991-1997, PSA 10-20

These are not at all matched samples of men (e.g., men treated with RP and brachy are younger in general) and are not strictly comparable. The RCTs that will prove whether the differences are significant are many years away from maturing.