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Another new guy...Russell

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Posted 3/9/2013 4:16 AM (GMT 0)
Hello everyone. Well, I received the bad news from my biopsy yesterday over the phone from my doctor. I found this site while searching for information about Gleason scores. Apparently, mine is 3+3. I'm learning all the terminology as I process the news of my condition. I have an appointment on Monday for the detailed discussion. Any suggestions on questions to ask would be helpful and appreciated.

A little about me. I'm 56, white, male in reasonably good shape (6', 180 lbs) and fairly active. I eat right and work out 3 to 4 times a week. My PSA has been elevated for several years (~3.5) but my DRE always appeared normal, so my GP never really pushed me to go see a urologist. Then about a year or so ago, the PSA started creeping up into the 4/5 range and it was recommended I start seeing a urologist. Once again, the DRE didn't seem out of normalcy, so the doc gave me the option of monitoring the PSA at closer intervals or a biopsy. I chose the monitor route. If the PSA went up any more, I would biopsy. It did creep up to 7.45; biopsy was last week.

My urologist first performed an ultrasound to check for shape and density. The results indicated a biopsy was in order. He said 2 cores on right side were positive, all negative on the left side. As mentioned, he said my Gleason was 3 + 3 and that I had a low aggressive form of cancer. He expressed that although I tested positive, the "good news" was that I'm relative young, otherwise healthy and in a good position for successful treatment. We'll see.

So, my educational and medical journey begins. I've started doing research which led me to this forum which seems like a great place for information.

This isn't my first encounter with cancer. In March 2011, my wife was diagnosed breast cancer and ended up getting a bilateral mastectomy, chemotherapy, radiation and reconstruction. That was a tough year for us, and 2012 was a recovery year. Now it's my turn. My biopsy was almost 2 years to the day of hers. I can only hope I handle my situation with the same strength and dignity she did.

Stay tuned and thanks in advance for you help and support.

Russell
Posted 3/9/2013 4:29 AM (GMT 0)
Hi Russell,
Welcome and all the best to you. When you go in for that consultation on Monday ask for a copy of that pathology report. Also ask about non-aggressive options such as monitoring it for a while longer while you get yourself educated about prostate cancer. The best decisions in prostate cancer therapies are educated ones and not emotional ones. Nor sure where you hail out of, but look into support groups. You can also get that here, but I find a difference between online ones and live ones. I run such a group and you can look them up at www.ustoo.org.

Stay calm and don't fear the reaper. You're very likely to do very well and need to stay positive. I can tell in your post that strength and dignity won't be a problem for you...

Peace

Tony
Posted 3/9/2013 4:30 AM (GMT 0)
Hi Russell,
welcome and sorry. your right..... this is a great place. Take a deep breath. Your going to be fine. Thw road may get a bit bumpy but judging by what you said..... your gonna get through it okay. educate yourself as you are doing and make a good treatment decision. I am a stage 4 guy so I am sure some of the cured guys will chime in soon. good luck and try not to worry. your going to be fine. Todd
Posted 3/9/2013 6:07 AM (GMT 0)
Russell -- my PSA was 6.8, my prostate is on the small side.  my DRE was normal and i had no side effects. but a biopsy showed 12 of 12 cores positive--one core at 70% and another 60% and so on down the line.  my gleason score was 3+7.

about 30-40 of cases where surgery follows biopsy the results are actually worse than what the biopsy shows, and of course there's a lesser chance of the pathology results being better.  in my case we assumed the worst -- PC had escaped capsule -- and moved quickly with a three-pronged course of treatment.

for one reason or another you and i got here a little later than we should have...but not too late.  in my opinion the AS phase of your treament is over and i move toward treatment ASAP.

sorry you have to be here and i wish you the best.

ed

 

Posted 3/9/2013 6:11 AM (GMT 0)
Howdy Russell,

Sorry to welcome you to our little club here. From what you have said thus far, it would seem that you have a highly curable form of PC. Gleason 3+3 is only a mildly aggressive -- and low risk -- type of PC. Men seldom die from it.

Keep in mind that the biopsy report is only an "educated guess" of the status of the cancer. Only through surgery can the entire prostate be examined and accurately checked. I think it's only about 1% of the prostate that is covered from a biopsy. There are many times when the final, post-op pathology reveals that the cancer was more aggressive and/or larger than suggested by the biopsy. There are also about an equal number of times when the pathology shows the cancer was LESS aggressive than the biopsy estimated.

This is not to scare you -- it would seem that you are going to be just fine. If you do not have any urination problems (such as those caused by an enlarged prostate), you could probably be cured by radiation (either external beam or radioactive seeds). Radiation would still cure you, but the urination problems would remain -- which is why, in my situation, I went with surgery.

The "gold standard" for treating curable cases of PC is, of course, surgery -- either the traditional "open" method or with the DaVinci robot.

There are pros & cons associated with all these forms of treatment -- stuff we can get into down the road as you ask more questions.

In the meantime, if your cancer is truly 3+3, you probably do not need to rush into any quick decisions. You probably have a long time before you would need to make up your mind.

In my own personal view, I would not want to take the chance of it being a more serious case than suggested by the biopsy. I would take my time and become educated on the disease and then seek out HIGHLY EXPERIENCED radiation oncologists and urologists/surgeons to get the pros & cons of all treatments.

But then I would definitely do something -- either the surgery or radiation -- and put it all behind me. In my own case, I opted for Mr DaVinci and had virtually no pain and hopefully am cured. No further treatment was required after my surgery. Your case sounds similar to mine.

You'll get a lot of advice from all of us. You can also order the 3rd edition of Dr Patrick Walsh's "Guide to Surviving Prostate Cancer" to learn a lot more.

Wishing you -- and your wife -- the best!
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1.
Semi-firm erections now happening 14 months post-op & slowly getting a bit stronger.
Posted 3/9/2013 6:20 AM (GMT 0)
As Chuck said above:

"You can also order the 3rd edition of Dr Patrick Walsh's "Guide to Surviving Prostate Cancer" to learn a lot more."

I have this latest edition, if you would like to borrow it to get acquainted with all things PC, e-mail me, and I will send it to you for free. Just return it when you are done. I am not needing it at this time.

David in SC
Posted 3/9/2013 1:08 PM (GMT 0)
Russell,
I would suggest that you read a book called Surviving Prostate Cancer Without Surgery by Bradley Hennenfent. Then please do yourself a favor and talk to a radiation oncologist and decide for yourself what is the 'golden standard'.
It would appear that you have many options to successfully treat the cancer. Your task is to choose the one that allows you to keep your quality of life as close to normal as it now is.
God Bless
Posted 3/9/2013 2:28 PM (GMT 0)
Welcome Russell, keep researching and you will find your answers. My Urologist lended me that book that David suggests. It's a great start to research. It turned out that my surgeon was a study of Dr. Patrick Walsh, the author of that book. Good luck, best wishes to you.

Don
Posted 3/9/2013 3:03 PM (GMT 0)
Russell,

Welcome from a recent newbie. Allow me to pass along the best advice I received from this forum. Ask questions, do your research, and then make the treatment decision that is right for you. There is no one right treatment. What is right for you wont necessarily be what someone else decided for themselves.

Your initial diagnosis looks a great deal like mine. My doctor shared with me that about 25% of the prostates they remove showed a more aggressive form of cancer (higher gleason score) than the biopsy. That was key in my decision to have my prostate removed. I had DaVinci surgery in January, and during the surgery, the doctor discovered that my cancer had spread to my bladder and removed a major portion of it. I have my first follow up in April and already know based on my surgical pathology report that my cancer was revised to a 7 (3+4) and that my doctor was not successful in removing all of the cancer.

Like I said, each of us have a slightly different path to follow but we are all in this together. This a great forum, not only for us men, but also for our families who are in the fight with us.

Best of luck,

Pat
Posted 3/9/2013 3:09 PM (GMT 0)
Russell,

Welcome to our forum. I also had a slow rising PSA over several years but with my family history of PC, I knew it was when not if I would get PC. When my PSA rose from less than2 to 3.5 in less than a 2 years my GP referred me to my URO. In 3 months after the referral my PSA rose to 5.25 from 3.5 so I had my biopsy which showed 2 cores of G7 PC. My URO is part of a large practice here in Alabama with robotic surgeons, and radiation oncologists on staff so I consulted with both and was not pushed into either for treatment. I did all my research before I found this forum (joined 2 months after my surgery) and read Dr Walsh's book which my URO gave to me before our first post biopsy consultation. I wanted to do proton beam radiation as my first treatment choice. My URO's brother was one of the first patients treated with PBRT at Loma Linda California and was doing great. My URO told me I was good candidate for this but my insurance would not cover the cost and I really couldn't travel and live for 6 to 8 weeks 300 miles from home. I looked into seeds or brachytherapy but the radiation thought scared me more than surgery, so I ended up having a RARP in June 2011. My pathology report stayed with my original G7 but it showed my prostate was 60% tumor involved which the biopsy or DRE's never indicated, but it was 100% organ contained. 20 months later I have an undetectable PSA, am 100% continent (been since July 2011) but I am also 100% ED.

With what I know now from being a very active member of this forum, if I had joined at the time of my original DX I think I would have given Brachy more consideration. The first person I ever talked to who had PC was after I joined here and got to know many of our members.  What I am trying to say is learn from us but look at all of your treatment options and do not get pushed into any treatment until you know all the pros and cons of any treatment.  All treatments have side effects and pros and cons, do not let anyone tell you otherwise.  Good luck and please keep in touch.

Posted 3/9/2013 5:51 PM (GMT 0)
Russell,
Welcome. Having your slides reread by an expert in pathology such as Epstien at Hopkins or Bostwick Labs should be your first step. Confirming your risk classification is an important step in determining treatment and there is a large difference in low vs intermediate risk so your slides must be confirmed.
If you a confirmed to be in the low risk category I would suggest reading "Invasion of the Prostate Snatchers" by Dr Mark Scholz as it is the best reference on low risk PC. An important concept to grasp is that PC is a spectrum of diseases ranging from indolent very low risk PC, to low risk PC, which may not be harmful to the more aggressive forms of PC, intermediate and high risk. It seems that you are in the very low to low risk. Fit the treatment to the type of PC you are confirmed to have in order to achieve the best outcome.
Posted 3/9/2013 7:24 PM (GMT 0)
Russell - welcome to HW.  As you will see (maybe you are seeing already), because there are various types of primary prostate cancer treatments, and no uniformly acknoweldged "best" treatment, there's a lot of bias.  Someone says "surgery is the gold standard."  Someone else says radiation is better -- the "new gold standard" (or maybe platinum standard -- that's event better than gold), etc.  This is true not only of patients -- who tend by and large to favor whatever treatment they personally had (particularly if it worked, but sometimes even if it did not) -- it is also true of doctors.  Urologists often like surgery.  Radiation oncologists often like radiation.  Some like protons or cryo (freezing) or HIFU, etc.  Each doctor (and many laymen) can cite a bunch of statistics to "prove" the validity of their arguments.  It all sounds pretty convincing.  As one example, JohnT -- who has shown himself on this forum to be a bright guy but also a strong advocate for radiation -- says "Invasion of the Prostate Snatchers by Dr Mark Scholz ...  is the best reference on low risk PC."  As you can probably tell from the title, the author of that book shares JohnT's anti-surgery bias.  (A guy who thinks surgery is a good approach for curing prostate cancer would probably not refer to it as "snatching prostates"!)  Is that "the best" book?  Is there such a thing as "the best" book?  Is it better than the books written by Walsh, or Scardino, or Carter, or Moyad, or Strum or Onik, or the 100+ other books on prostate cancer?  I don't know.  They each present their own perspective.

So here are my two pieces of advice to you:  (1) get information from a variety of perspectives and don't jump to any conclusions until you do so; and (2) if someone (anyone) seems certain that there is one "right answer," or one "right approach," discount heavily what that person says.   If it were so obvious that one particular approach were "right," then everyone would do the same thing.

The good  news is -- at least based on what you have learned thus far -- you appear to have a low risk cancer that is likely to be curable through a variety of approaches.  So hang out here and learn some things, talk to a really good urologist or two (choose those who have treated ALOT of prostate cancer), then visit with a radiation oncologist who does a lot of prostate cancer, read a few books by leading experts (maybe including the one JohnT likes, but certainly do not limit your reading to that one).  Then you will know what to do.  Or you will have a gut feeling.  In your case, it should work out fine.

Best wishes,

Medved

Posted 3/9/2013 8:20 PM (GMT 0)
Welcome Russell!
With only 2 core positive, Gleason 3+3, you have many options to choose from.
I am a surgery guy but with your stats I would check out all your options.
I know you must be going through a lot right now but this is not the end of the world.
You can and will beat this!
Stay with us and ask anything that you are unsure of. We have a large group of brothers and sisters here that have seen and heard it all.

Bill
Posted 3/9/2013 10:44 PM (GMT 0)
Russell,

I've never posted on this site even though it has been "best friend" since my surgery a little over a year ago. I chose surgery because I wanted to be cancer free if possible and I thought surgery would be my best option. I have had great results. Incontinence lasted only 3 weeks, sexual function returned with the aid of Cialis after 6 months and is now pretty much back to where is was prior to surgery. Find yourself a doctor with plenty of experience and know that whatever option you choose the odds are in your favor. I'm here to mostly reassure you that there are many more people like me who rarely post because we are doing so well--as I'm sure you will too. Good luck!
Posted 3/10/2013 2:43 AM (GMT 0)
Thanks everyone for the warm welcome and advice. I have a lot a research and reading to do. Will let you know what I find out after my follow up appointment on Monday.
Posted 3/10/2013 3:37 AM (GMT 0)
Welcome to you also Reltnie. You are doing great. I sure hope that I have that success with my surgery.


Don
Posted 3/10/2013 5:15 PM (GMT 0)
Russell,

With a G6, you have the time to explore all the options and learn about all the possible side effects. It's going to get down to how you are wired and what feels the most comfortable to you.

An individual case of PC is like a snowflake....no two cases (or patients makeup) are the same. That said, once the research is done, I predict you will make a good decision for yourself. Best wishes,

Joe
Posted 3/10/2013 9:50 PM (GMT 0)
Welcome Russell,
It will take some time to sort through all the options. You have good stats and should be a good candidate for which ever treatment you choose. You can beat this beast. Best of luck with your decision.

Regards,
Kris
Posted 3/12/2013 6:29 AM (GMT 0)
Well, I met with my urologist today and he went over 5 possible treatment options and made his recommendations. I also received a full copy of my biopsy analysis. Two of 12 core samples were positive, both on the right side. One was 65% tumorous, the other 15%.

Treatment Options reviewed 1) Surveillance, 2) Hormone Therapy (ADT), 3) CryoSurgery, 4) Radiation, and 5) Surgery (DaVinci robotics).

Given my age and health, the recommendations were either radiation or surgery. Even though he's a surgeon (10+ years using the DaVinci), he didn't press me one way of the other. He suggested I get a second opinion and recommended someone at the Mayo Clinic. I also plan to consult with my wife's radiation oncologist.

I asked in what time frame I had to make a decision and he said there was no immediate rush, but I should make a decision and try to get going within the next 3 months or so. That should give me plenty of time for the additional consults and second opinions.
Posted 3/12/2013 12:47 PM (GMT 0)
Hi Russell, and thanks for the update of your PCa stats - it will allow us to continue to provide our experience to you as you move down this path. Please keep in mind that those of us that have been treated can indeed provide our experience, but remember that each of us is different - no two cases of PCa or men with that are the same. . . . So then I would encourage you to reap the benefit of our experience and couple that with your plan to research the various options with the medical professionals.

Sounds like you were the beneficiary of a very competent and wise urologist - not everyone has had that so that's a great start. The fact that he gave you an overview of some of the treatment approaches without "pushing" one on you is impressive - and the correct/moral thing to do.

As part of your next steps you may want to consider getting a second read on your slides from a lab like Bostwick or Epstein, just to verify. On the one hand a G6 3+3 is less aggressive but I would want to see what a 2nd read would show given the 65% positive core.

I think you're doing the right thing by planning on additional consultations and 2nd, 3rd, 4th opinions. Talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. Regarding ACTIVE Surveillance, be sure you research someone that has an ACTIVE plan if this is what you decide to do. When you meet with those to discuss the treatment options , 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 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 to make YOUR best decision.
Posted 3/12/2013 1:31 PM (GMT 0)
Russell,

I have to agree with Yooper about getting a second reading on the slides. the one positive core of 65% is a lot for G6 3+3 and IMO probably accounts for your high rise in PSA. Make sure they use one of the nationally respected  pathology labs like Bostwick if the first reading wasn't from them. Also if you go for a consult with Mayo they may also want to review the slides as well. AS far as treatment the Gleason score can have a big impact on what route you may want to consider for treatment. My biopsy indicated 2 cores of 20 and 15% cancer G7 on both sides of the prostate. After my surgery the pathology showed my proste was 60% tumor all G7 3+4.

Posted 3/12/2013 4:09 PM (GMT 0)
When you get your second opinion on the slides you might ask about "recuts". That is a second set of slides made from different slices from your same biopsy samples. My second opinion on my biopsy was done by evaluating recuts. They cost a bit more but they give more information.
Posted 3/12/2013 4:26 PM (GMT 0)
RL1239, glad you found the forum, the preceding posts covered it all and as one poster mentioned, your introduction bodes well for how you handle this unsettling season of your life. Stay fit as it will help in whatever treatment you choose. Keep us in the loop as much as you are able, regards….
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