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Posted 9/21/2012 4:05 AM (GMT 0)

Hello all,

I'm newly diagnosed, 9/7/12.  Age 53. 

PSA 2.0 but had risen from 1.2 a year earlier.

DRE + ( small nodule left side )

2 of 12 cores positive, one 15%, one 5%

Gleason 6.

Positive family history, father.

My fear was that with the nodule I would be higher Gleason and higher volume.  So I was relieved after talking to urologist and he was very optimistic about successful treatment.  He did not try to push surgery. He even offered to recommend an oncologist if I wanted to explore radiation option. But he said stats show guys my age do best with surgery, long-term.

My father diagnosed at 62 is still alive and kicking today at 84. His Pc was fairly advanced, into neck of bladder and lymph nodes.  So he is my inspiration.  But his PSA was only 3.6 at time of diagnosis !

Now the bad news...my 2 positive cores are in the left medial and left lateral apex, and everything I read about this area says it is not good. 

Doc gave me a copy of the pathology report but he said nothing about this except that the cancer was on the left side.  I took the report and did some investigating of my own and what I read online about Pc in this location is bad news.  

Questions :  Should I be concerned in spite of the low volume and Gleason 6 ?  My doc is very easy to work with and went to Harvard, but he is only 34 !  He says he does about 2 Di Vinci surgerys a month.  Should I go for the most experienced surgeon I can find in my case, given the likely delicacy of surgery in my case ?

Thanks in advance.  So glad I found this forum.  Lots of thoughts going thru my head right now.
 

   

Posted 9/21/2012 4:13 AM (GMT 0)
Sorry to hear of your situation but youre young like myself and you have a very manageable gleason score. I would go to a surgeon with a little more experince but thats just me.

The guy I was gonna go to had done over 1000 of them but he felt in my case that surjury was not the best option. There are many others here with vast knowledge and experience with the surjury than I am and Im sure some will chime in soon, good luck with your choice.
Posted 9/21/2012 4:38 AM (GMT 0)
With those numbers all treatment options are open to you and you should explore them all before making a final decision. I did the radiation and am happy with my decision - and I'm about your age. But it's really up to you.

In your place I would talk to the radiation oncologist, for another opinion if nothing else. Just remember that surgeons tend to recommend surgery - if the only tool you have is a hammer all problems look like nails. You need to talk to someone with a different tool set just to be sure. Not to say surgery isn't a good way to go. Just saying you should give all your options a fair exploration.

Should you be concerned? Maybe but I'd go with your doctor's optimism and not worry too much. Get more info on treatment as you've got time to make the right decision for you - don't delay for years but you've got a month or three or four to decide what to do. Also given that your father has made it, what, 22 years - you have every chance of having a similar result. Possibly better given that yours has been found earlier.

You might want to read a book or two on PC. Many of us start with Dr. Walsh's book, "Surviving Prostate Cancer"

I'll let the surgery guys talk about picking a surgeon.
Posted 9/21/2012 10:25 AM (GMT 0)
I am a surgery guy and I could not have said it better^^^^

Explore all of your options. And all of the radiation options, including seeds. You will want to balance the side effects vs. quality of life for your individual life style. As far as surgery, most agree on here that experience is the most important thing when choosing a surgeon over type of surgery-robotic vs open.

You have caught it early, and are doing your research. You will be fine.
Posted 9/21/2012 10:57 AM (GMT 0)
you do have many options and can find the one that best suits you. You will do fine with any of them.

As for surgery, I have to say that in my case it was all very manageable and the results absolutely fantastic.
Posted 9/21/2012 11:23 AM (GMT 0)
Hey guys thanks so much for the quick replies and the encouragement. I'm trying to process so much information right now that sometimes I just have to leave the house and do something else for a while to keep my sanity.

In my original post I forgot to mention that my concern centers mainly around the risk of having a positive margin, given that both of my positive cores are in the left apex region. I'm reading that positive margins and recurrence are far more likely in this region. Does my Gleason 6 and low volume cancer make the risk of positive margins less likely, or is this unknowable until they open me up ?

Also, I really like my urologist and he seems like a very smart guy. I'm in Kansas City, and supposedly the University of Kansas Medical Center here is one of the better ones for urology in the US. My urologist went to medical school there but he does not work there. He is a young doc, so there is no way he has done a lot of RP surgeries.

In my particular case ( left apex cancer ) isn't it particularly important that I have a surgeon with a lot of experience ?

Thanks again. You guys are great !
Posted 9/21/2012 11:56 AM (GMT 0)
You have been given great advise so far. It can be overwhelming when you first learn you have cancer. Take your time and find a treatment that you are comfortable with. Ask any questions you have here. No such thing as a dumb question.

You can read what I went through by clicking on the link in my signature.

Good luck to you.
Posted 9/21/2012 12:33 PM (GMT 0)
Morning,
You want a Dr that has the most experience regardless of what treatment option you select.
Surgery is complicated... My uro who is a nice guy had done hundreds of the procedures. I opted for the Dr who had done thousands.
Your decision should be based on the competency of the Dr.
My opinion.
Wish you the best.
Posted 9/21/2012 1:46 PM (GMT 0)
Welcome to our forum and also sorry you have to be here, but this is a great place to begin your research as you start your PC journey.

I am not a doctor or an expert but IMO having had a positive DRE and family history I think you need to look at all options but AS. In a lot of cases a G6 biopsy gets upgraded after a post surgery pathology or even having them read by a different lab for second opinions. The suggestions about finding a surgeon with many at least 600-800 surgeries under his belt is important to the chance of a better outcome. The same can be said for any RT oncologist too. I am a surgery guy who looked at seeds and proton beam RT but because of limitations on out of state treatment coverage by my insurance I choose a DaVinci RP. I had a large  G7 tumor and a very large gland both of which were not indicated in my biopsy.

Find a prostate cancer treatment center in your area that has both surgeons and radiation doctors on staff so that you get more rounded and hopefully unbiased treatment options. Too many guys with lower G6 diagnoses are rushed into surgery without looking at or considering other options because their URO who is also a surgeon recommended surgery. This is a very contentious area of controversy in the PC Medical and Support Community now. Get as much education and research as you can before you make any decisions. No matter what route you choose your life is going to be changed and most likely will not be the same as before.

Terry The Water Guy

Posted 9/21/2012 2:06 PM (GMT 0)
A few thoughts:

>  If you choose surgery, and if you can travel, try to find a surgeon with lots (1000+ or more) of experience with robotic surgery.  I went with a surgeon who had done only 350.  Not so great.  Had to have a surgical hernia repaired about a year later.  about a month later, another man had the same surgery with my surgeon and was sent home with a nicked bowel.  Neither the surgeon or hospital caught it before that man was sent home. That man died on sepsis --  my wife has many contacts in medical community, so I know this to be accurate.  No substitute for deep experience.  A lot has to happen right with this surgery -- this is a 4 plus hour procedure, and is highly complex.  I had a hip replacement about six years ago  -- that is simple carpentry compared to a RP.

> In talking with surgeons, ask about nerve bundles.  Removal of nerve bundles can have a major effect on ED.

> First two days home are a bit foggy, because they send you home so quickly -- in my case 16 hours after I came out of the ER.  If all goes well, expect a quick recovery from surgery.  I went diving off Vietnam 90 days out from surgery  -- the hernia was there by then, but I didn't know what it was.

> When all is said and done, the most important score at diagnosis is Gleason.  With a Gleason 6, your outlook is generally very good -- radiation might be an option you would wish to consider.

Best wishes!

Newspaper Lover

Age 68

DaVinci surgery 11/09. Clean margins, clean seminal vessels.

Rising PSA noted 06/11

Gleason 8

Surgical hernia needed repair.

Time to recurrrence 18 months

Three month doubling time (summer 2011).

PSA rose from .07 on 06/11 to .17 on 11/11.

MRIs and bone scans negative so far.

Started hormone therapy (Lupron/Casodex) 12/11

Began radiation (SRT) 02/20/12.

Finished SRT 04/16/12

Last Lupron shot 03/12

PSA and testostorone "undetectable"  07/12

Next PSA and testostorone test early January

 

Posted 9/21/2012 2:33 PM (GMT 0)
AlmostRetired - glad you found us and sorry you have to be here in the first place. While I am not an expert nor in the medical field, after my Dx in early July of this year I went on an absolute mission to learn more about PCa - including forums such as this great site, internet research beyond belief, group forums and meetings with several in the medical field.

Having said that with your stats I would still say that your best move right now would be to slow down and do your research. I would highly recommend "Invasion of the Prostate Snatchers" as well as Dr. Walsh's book on "Surviving Prostate Cancer." With your stats I also believe that you have many options available and would encourage you to research them all.

I also have a couple of studies I have acquired that I would be glad to share with you, including the "Grimm et al" that just concluded earlier this year and is considered one of the most comprehensive works done to date. E-mail if you're interested.

Best of luck to you.
Posted 9/21/2012 2:59 PM (GMT 0)
I would get a second opinion on the slides with a top rate, medical center that looks at PCA cells a lot. John Hopkins comes to mind, there are others. There is a possibility of higher grade cells in there. Not to alarm you, as you have , it seems, a very early catch here especially with the low psa. Most Pca, I believe,someone will correct me if Iam wrong, I hope, is found at the apex, so thats not nesesarrily different from the rest of us.what concerns me here is you could have a higher grade than the biopsy indicates , just cause it was missed. Some here could argue here for watchful waiting, and that is worth looking into, IF, the 2nd opinion keeps it a gleason 6. You do have time here to do a lot of research, Check sticky notes for reading material, study all you can about PCA. If it was me even with a gleason 6, I would get treatment, but again, I don't see a " big " rush on this one. As someone said Its all available. You are young, It isn't going away on its own. I'll bet I had Pca at least 10 years before diagnosis. just a hunch. Better to be treated young, like Davidg, than wait, as you can deal with the side effects better. Lets see, what else? If you go with surgery it is most assuredly the skill of surgeon of either method, that will determine outcome in cancer control, incontinence and ED. I jumped on surgery, and my post op pathology confirmed really, what was not that educated a call{ got lucky, stuff happens}. with a bit more experience with this disease, radiation would do the job, and I would look real hard at Brachytherapy, for fewer SE"s. Top Brachytherapy center is in Seattle. Bottomline almost retired is that IMO, you got an early catch, and this is , merely " a bump in the road". BTW, When I retired, I couldn't stop giggling for a solid week. Its a change, with some problems, but once you settle in, its glorious Regards, thanks for sharing a part of your life with us.
Posted 9/21/2012 3:05 PM (GMT 0)
Oh yes Read Walshes book on positive margins as wel as Scardino's. With a Gl 6 " most " 6's will not survive outside the womb, so to speak….. get the slide re read with PCA experts, get as fit as you can, that should not be problem for a young man like yourself, eat a heart healthy diet, Aloha Nui Loa
Posted 9/21/2012 3:19 PM (GMT 0)

Almostretired said...


In my original post I forgot to mention that my concern centers mainly around the risk of having a positive margin, given that both of my positive cores are in the left apex region. I'm reading that positive margins and recurrence are far more likely in this region. Does my Gleason 6 and low volume cancer make the risk of positive margins less likely, or is this unknowable until they open me up ?

Thanks again. You guys are great !

While that concern exists, I would stress over it too much. In my case there was a slight concern for positive margins so my RO recommended beam radiation and he included some of the margin in the treatment program.

and yes, you've caught it early enough that it's very possible that it's confined to the prostate but the worry that will drive you nuts is that no one can say for sure. Even with surgery there is no 100% certainty that they get it all. The post surgery pathology report can give you a very high confidence whether or not there is any there but there's no 100% (99% maybe).

The hard part of selecting a treatment is that is a bit of a numbers game and you're gambling on odds and accepted statics - all of which may or may not reflect your case. I know that I've second guessed my treatment decision from the day I made it - even though it seems to be working just fine.
Posted 9/21/2012 4:28 PM (GMT 0)
There really can't be a "need a better surgeon because" consideration. As others have said, if you choose surgery, you will want the best surgeon your insurance or financial situation permits. If you were to watch a DaVinci surgery film, you would be either sick or amazed, but in either case, it is clear that in most cases you can not see the cancer. You'll want a surgeon who understands what might be there, and can do a good job no matter what complication might present itself. Your long term hopes of regaining continence and erectile function depend totally on how well the surgery is done.

We really don't know what was there until the post-op pathology is done.

For second opinions, also consider Bostwick Labs. They were very good people to work with in all respects for my case.

Posted 9/21/2012 4:59 PM (GMT 0)
Almostretired,

My advice is to breathe, relax, research and WAIT to do anything. No one really knows exactly how many men actually get PC (the number from the ACA is 1:6) but from those Dx with it, somewhere around 90% of them end up dying of something else (this number includes ALL grades, stages, levels, etc.). You can and will learn a lot about this disease in the next couple of months, some (maybe more than some) of what you are told in your first few DR consultations might be disputed by what you learn later on. I have read many places that Pc is one of the slowest growing cancers there are, you have lots of time to decide what you need to do.

Although you have a +DRE, your volume and Gleason scores are quite low and indicate that you are in the very, very early stages of this. Your Uro stated: "stats show guys my age do best with surgery, long-term.". You will soon learn that Dr.s, clinical trials (and patients), will whip out "stats" all the time, but most are non-specific to each patient's unique situation. OS (overall survival) at a specific time point (5, 10, 20 yrs) is usually the end point that is quoted when Dr.s start quoting stats about the different treatments. Most can not tell you where they get their numbers or what they are comparing. Radiation therapies (and some surgical) techniques are changing very, very rapidly and and there will never be long term OS rates (20yrs) that compare the new and emerging therapies. Quality of life side effects such as continence and ED were extremely important to me so I opted to pursue radiation (proton beam) after researching all my options and determining (my opinion) that OS is now fairly equal for the big three (surgery, external beam and brachy). You too will eventually find the route that is best for you, it may be just waiting (AS) months or years until your case progresses farther. The 67% rise in your PSA in just one year may be concerning (which is probably why you got the biopsy), but a rise of only 0.8 could easily be from recent ejaculation, inflammation/infection, a Dr performed DRE prior to drawing the PSA sample or others. Just saying that you may have had this for quite a while, it might not have changed much and you have lots of time to investigate non-surgical treatments. Monitor your your PSA every 8-12 weeks and start asking questions, everywhere.

Good luck!
Tom
Posted 9/21/2012 5:00 PM (GMT 0)
Can someone please shed light on almostretired's question about pc being worse if found on the left side of the prostate. Is this true?
Posted 9/21/2012 6:00 PM (GMT 0)
A nodule on the apex is definately a concern when it comes to surgical removal. 50% of all positive margins come from the apex and a nodule will significantly increase these odds. I would definately look into external radiation from an excellent radiologist as they can get a wider margin.
The normal probability of a positive margin is in the 20% to 30% range with surgery. With a nodule in the apex these odds will be much higher and should be taken into account.
JohnT
Posted 9/21/2012 8:06 PM (GMT 0)
JohnT. It doesn't matter of its lft or right , does it ??? Also isn't it true that a high proportion do occur there. which is why A Dre has any benefit at all,i.e. can reach there.
Posted 9/21/2012 8:40 PM (GMT 0)
Almost,

Refer again to John T's post above. Radiation can treat a wider margin which is one of the reasons why I opted for a combo of BT and IGRT. This is something you will want to discuss with a radiologist, of course, along with SE questions.

Your G6 gives you a lot of good options. Just keep doing your due diligence and you will end up in a good place. Regards,

Joe
Posted 9/22/2012 2:31 AM (GMT 0)
Sorry to hear you were diagnosed with this crap. I live in KC and have just started my journey. You dad is an inspiration to those of us that didn't catch it untill it had spread. I go for my first Dr visit since going on HT 30days ago on the 25th. Hope to see a drop in the psa. Good luck on your treatments.
Posted 9/22/2012 6:28 AM (GMT 0)
Pepsiguy,

Hang in there ! You can beat this. My dad also did HT and it definitely did the job for him. He had scary moments, but his PSA has been undetectable now for many years. He was diagnosed 22 years ago and now at age 84, I expect that he will die from something other than Pc. He still mows the lawn and gardens.

And thanks again to all of you for the replies and suggestions. There are some amazing people on this forum.
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