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Posted 6/24/2013 11:12 PM (GMT 0)
Hello,

Just got a call with my Biopsy results. (Very Concerned)

Age: 49 Years Old

Results: 5 of the 12 core biopsies had a Gleason score of 6 (3 + 3)

Urologist said most of the positive cores were on the right side of the gland and he recommends surgery.  He said it was good we caught it early.

I do not have an appointment with him until July 1st to go over the results further.  My dad had a radical prostectomy at 64 and had the same scores as mine.

Do I need to get a bone scan/CT scan to rule out cancer in the bone?

I live in the Atlanta, GA area and I know that Emory Winship cancer center is there and I may go to get a 2nd opinion.

Any recommendations on what I should do next?

Thanks In Advance

Posted 6/24/2013 11:24 PM (GMT 0)
Obviously I am not a doctor. I really don't think you need a bone and CT scan. I didn't have them with a number slightly higher than yours. It would be very uncommon for someone with your stats to have mets to the bones. John T might give you those statistics.

I'm sorry you got this news, you'll embark on a journey that involved treatment or management soon and it will take over your life to a large degree.

The first thing I would do in your case is to send the slides to a good lab for a second reading/opinion. I was originally a gleason 6 and was upgraded to a gleason 7 upon second reading.

That second opinion will give you a solid foundation from which to map out your plan going forward.

Typically guys with your initial numbers (and higher) do very well with any form of treatment and many argue, quite convincingly at times, with a sound/solid management solution (AS). The only thing I'd consider there from a strictly biased point of view is your young age.

You're going to get a ton of good advice on this forum. Advice that covers the entire spectrum of possible solutions. My only advice is to take that advice and to share it with medical professionals who specialize in all fields including an oncologist who specializes in PCa.

We have a great forum contributor called JNF who is in Atlanta. He's extremely knowledgeable and balanced on this issue so perhaps he can help with some names and suggestions.

You're in the most confusing and demoralizing part of your journey. I promise you things will get better.
Posted 6/25/2013 12:50 AM (GMT 0)
Kdeinv,
Welcome to this club that no man wants to join. You are fortunate to have have posted in a forum that is the most amazing resource for discovering information about prostrate cancer. I'm sorry to hear your news but I just want yo let you know that many, many, many men have very positive outcomes regardless of the type of approach you take in dawdling with your cancer. Please read as many posts in this forum as possible. It will help you desk with your fears and arm you with the knowledge necessary to best this beast!! Best wishes.
Posted 6/25/2013 12:56 AM (GMT 0)
rowlinrock, love reading your signature, good stuff.
Posted 6/25/2013 1:00 AM (GMT 0)
Thanks for the input,

My father had prostate cancer when he was 64 and he decided to go to MD Anderson in Houston where they raised his gleason score from 6 to 7 and recommended surgery over radiation treatment.

His point with surgery is that you want a surgeon that has done many surgeries and also a place that has an excellent pathology lab that can really dissect the prostate to examine the margins.

My father has had some of the side effects but thankfully no PSA readings.

Do you have any good book recomendations on this topic?

Dr. Patrick Walsh's Guide to Surviving Prostate Cancer

 

and

The Decision: Your prostate biopsy shows cancer. Now what?:

 

 


Posted 6/25/2013 1:25 AM (GMT 0)
Hello & Welcome! I'm so glad you found this site, it's been an absolute blessing for us!

Hubby was Gleason 7, no scans of any kind done. We were so comfortable with his long time uro, no 2nd opinion either - he had done over 700 surgeries, for over 7+ years.

Keep reading and posting! Hubby is doing just fine, pretty much back to normal; as is true for many on here.
Posted 6/25/2013 1:30 AM (GMT 0)
Kdeinv,
Welcome aboard! You found us just at the right time, just after diagnosis.
Sounds like your dad is a very wise man. He gave you great advice already.
Funny you listed the first 2 books I ordered from Amazon, Walsh's book and the Decision.
As far as the CT/bone scans, that is a very typical request of doctors after dx. They usually don't find anything from a Gleason 6 but it provides a baseline for the future. I had both scans and both were negative. A lot of us who have surgery find that the Gleason score could go up from the biopsy report. Mine went to G7 from G6. That is one of the advantages of surgery is you get a complete patholgy report that you don't get with radiation. BUT, I don't want to tell you what to do. Choose what is best for you.
This will be a crazy time for you. You will have a lot of anxiety about your future, a lot of questions to ask and some fear. The good news is we are here for you and no one understands what you are going through more than us.
Come back often, ask questions, read post and whining is aloud.

Bill from Florida cool
Posted 6/25/2013 1:50 AM (GMT 0)
 

there is no way to know your actual gleason score without extracting the prostate though some here will have you believe otherwise.  therefore i'd do the scans.  good luck to you.

ed

 

Posted 6/25/2013 1:55 AM (GMT 0)
kdeinv,

Did you get the biopsy because of an elevated PSA reading? If so do you know what is was? It is another factor in addition to the biopsy that helps to decide what you can and should do at this point.

When you are getting second opinions you should try to include doctors who perform different sorts of treatments. Brachytherapy is often a good choice for men with "low risk" cancer such as you have. You might want to have a brachy doctor on your second-opinion dance card. Surgery is a good option, too, but with a Gleason 6 cancer you have time to look at your options.
Posted 6/25/2013 2:12 AM (GMT 0)
Hello and welcome. I am not far from you, outside of Greenville, SC.

I would recommend a second opinion before considering any primary treatment plan.

Please keep us posted of what you decide to do.

David in SC
Posted 6/25/2013 2:22 AM (GMT 0)
My PSA Readings were as follows:

PSA         Date
2.0     3/30/06
2.4     4/27/07
1.95   6/19/08
2.6     7/26/10
3.6     8/16/11
2.99    3/5/12
3.8      9/10/12
3.7     10/15/12

3.9      2/15/13

 

My Internist then referred me to a urologist who insisted on a biopsy after looking at my PSA readings and he felt a nodule on my prostate after the digital rectal exam.  Plus my family history.

 

 

Posted 6/25/2013 4:23 AM (GMT 0)
See doctors in all treatment modalities. Educate yourself. Make a list of questions for each doc. I believe there is a list someplace around here or a "for newly dx'd" that is very helpful.
Posted 6/25/2013 4:29 AM (GMT 0)
Have agree with Ed.....more than likely the scans will come up clean but theres always a chance they flubbed up the initial biopsy reading.....certainly cant harm you to do the MRI and bone scan. That is if the insurance will cover it and no cost to you.
Posted 6/25/2013 5:02 AM (GMT 0)
Hi kdeinv,

After a positive dx, some urologists will automatically order a nuclear bone scan and an abdominal CT scan just to establish baseline readings. In my case, which was similar to yours, my local urologist (who did my biopsy) said in advance that those two tests would be clear. And he was right.

When I visited my eventual surgeon at Mayo Clinic, he frankly said he did not understand why my local urologist had even bothered with the bone & abdominal scans.

I also was a 3+3 and had a PSA locally read at 6.41 (the Mayo PSA test a month later was 5.7). As you can see by my signature, I had 3 positive cores.

So, your situation is similar to mine in that the CT scan & bone scan will be mere formalities if they are ordered. They will surely be clear.

Your PSA is a couple notches above normal for your age, but not so large that the danger of spreading is suggested. Your tumor(s) is probably still confined to the prostate and, hence, quite curable by radiation or surgery.

Yes, Dr Walsh's book, "The Guide to Surviving Prostate Cancer" is an excellent book -- considered by many to be the gold standard of PC books. If you spring for a copy, try to get the 3rd edition, which is the latest.

While I favor surgery, I also join the others here in recommending that you consult with a HIGHLY experienced radiation oncologist AND a HIGHLY experienced urologist/surgeon who has done a MINIMUM of 300 procedures, whether it is radiation or surgery. Ask them about the pros & cons of all forms of treatment.

Then you can make a decision based on good knowledge and what you feel most comfortable & confident with. As they say in this game, "You only get one shot at this."

Good luck, my friend!
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.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.
Posted 6/25/2013 5:06 AM (GMT 0)
Hi kdeinv,

I'm sorry to hear about your diagnosis, especially at your tender young age. To me, time would be the big issue. All things equal, you can reasonably expect to have a lot of it. I mean that in several different ways. PC is typically indolent -- slow growing. That means you have time to investigate, do some soul-searching, a lot of doctor interviews, before you need to make up your mind. Your urologist is right when he says it's a good thing you caught it early -- and it will still be early for a long time. I can't tell you how long, but you can monitor it as long as you feel comfortable doing that. As long as you are monitoring it, you will have no side effects of treatment. Since the side effects of surgery can include ED and incontinence from surgery, living without those as long as possible is definitely a good thing. The cancer may remain indolent for 5 years, ten years, or a lifetime -- it's impossible to predict in advance. There are some reasonably good tools - blood tests, imaging, advanced biopsy techniques - for doing that if you're so inclined, after your diagnosis is confirmed by Bostwick, Epstein's lab at Johns Hopkins, or one of the other prostate specialty pathology labs.

You do not need a bone scan or a CT scan. Gleason 6's do not metastasize.

If you feel you have to have treatment, know that surgeons recommend surgery - radiation oncologists recommend radiation. Surgery seems to have the steepest learning curve of all treatments, so if you go that route, the surgeon's record including # of that kind of surgery (at least 1000) and his positive margin rate (approaching 10%) are critical.

LDR Brachytherapy (seeds) also seems to have a steep learning curve - I would only consider having it done by the top seed doctors. HDR Brachytherapy (monotherapy) seems to have exceptionally high cure rates, and exceptionally low ED rates.

SBRT has cure rates and ED rates about equal to HDR brachy according to the most recent 5-yr results. It only involves 5 short treatments. Dr. Mark McLauglin at Wellstar Hospital in Atlanta has been recommended. I don't see any advantage to 40-treatment IMRT, except they've been doing it longer. Pencil beam proton at MD Anderson or UF Jacksonville is interesting, but so far they have not published any cure results.

I would avoid ProstRCision in Atlanta -- it's overkill for a Gleason 6, imho. (They combine seeds and IMRT radiation). You also do not need hormone therapy of any kind, in my non-professional opinion.

Having just had your diagnosis, now is probably not the best time to make a potentially life-changing decision. I hope you will take the time that it deserves, and not let anyone rush you into anything until you are ready.

- Allen
Posted 6/25/2013 9:48 AM (GMT 0)
Thanks everyone for your input. 

I am going to see if the insurance will cover a CT and Bone scan for peace of mind. 

I know there are many hospitals in Atlanta that treat many forms of cancer to include prostate cancer. My urologist is at Kennestone Hospital in Marietta.  There is Emory's Winship Cancer center, Northside Hospital Cancer center and others. 

Just need to find the best prostate cancer treatment hospital and best Dr I can find to perform whatever procedure I decide on.

Thanks

Posted 6/25/2013 10:54 AM (GMT 0)
Hey kdeinv-

In the coming weeks, you may choose to meet with a surgeon and brachy (radiation seeds) specialists. Here are two posts where I compiled a list of essential questions to ask during those consultations:

Important questions to ask your **LARP/RALP/RRP** doc
Important questions to ask your **Brachy** doc

There's a fantastic online book (maybe 40 pages) that is an excellent intro to prostate cancer and the various treatment options. Someone else posted the link on HW not that long ago, but I can't find it. Hopefully someone will find it and post it here for you.

-Gedman
Posted 6/25/2013 11:22 AM (GMT 0)
Hello kedeinv! Sorry you find yourself here, but you made a great find in this place. Lots of experience from guys who have "been there and done that". You have time to investigate many options. I would encourage you to do all the research and education you can before your meeting with your urologist.  The fact that he recommended surgery right off the bat without discussing anything else tells me he's a surgeon, and as it's been said, "surgeons like surgery". I believe your best bet is to gather all the information you can from this site (you can also email me and I'll send you a lot of information as well), and take the questions gedman sent you to every doctor (surgery guys and radiation folks) you meet. I have similiar numbers to you and I'm only a few years older. The hard part is we have many options and that makes it tought to chose, the good part is, we have many options.  Take your time and do what's best for you. No one can tell you what's going to be best, it's really your decision. Many will try to influence you, but take charge and make the most informed decision possible. It may take awhile.  I struggled with mine for over three months, but it's a good feeling when you do finally reach YOUR decision. Like I said, please email me (my email is in my profile, just click on my name) and I'll be happy to send you a bunch of easy to understand info if you want.
Good Luck and welcome!
Mike
Posted 6/25/2013 1:25 PM (GMT 0)
Hello kdeinv and I too will welcome you to our little club.  You've already seen some good advice and while somewhat repetitive I'll add my thoughts.

You've stated 5 cores positive with a G6 - what were the % involvements in each positive core?  Knowing that should be part of your understanding of your PCa stats.  I'm also guessing no perineural invasion or "PNI?"  Johns Hopkins has a free guide to understanding your Gleason Score - here's the link to acquire that:

http://www.johnshopkinshealthalerts.com/register_ppc_prostate/gleason_reg_landing.html

The NCCN also puts out a very comprehensive overview of Prostate Cancer, here's the link to that:

http://www.nccn.org/patients/patient_guidelines/prostate/

In addition to those two to get you started, I've also accumulated a significant amount of research, studies and so on that I'd be happy to share.  You can access my e-mail address by clicking on "A Yooper" on the left side of my post if you're interested.

At the end of the day if/when you choose a treatment approach I would simply add to what others have said - ALL modalities have a steep learning curve for the respective practitioner - so I would urge you to be sure to understand that as you do your search.  Many of these medical professionals will avail themselves to a phone consultation if you're unable to travel to meet with some of them - gedman provided a couple of excellent guides to the types of questions you'll want to ask.  Near the top of the list for me is to have them provide to you what THEIR individual statistics are for treatment - % chance of recurrence for someone with your specific PCa stats, side effects such as continency (and be sure to have them define 'continent' - as to you and I it means NO issues while to others it may mean "only one pad per day or only when straining") and the same goes for ED.  Being treated for PCa does not automatically include nefarious side effects. . . .

So then you're about to enter that zone that some have affectionately called "paralysis by analysis" - but that too will be o.k.  We're all here for you to ask away and support.  Please keep in mind that none of us are medical professionals - but rather are men (and supporting women) that have been there, done that.

Best to you.

Posted 6/25/2013 1:45 PM (GMT 0)
The "fantastic online book" that I refer to in my post is the NCCN link provided by Yooper.
Here is the direct-download PDF link so you can print it, read on your tablet, or whatever.

-Gedman
.
Posted 6/25/2013 1:47 PM (GMT 0)
Hi kdeinv -

Just wanted to chime in with the others to welcome you here (sorry you have to be here, but you've come to the right place, etc...!). I'm 48 and received my diagnosis back in April - my urologist ordered the biopsy after my yearly PSA test came back elevated, and he felt something on the DRE. My signature below tells the story.

My doc did order a CT and bone scan, but I'm a G7 (3+4) which might have made the difference to him. The tests themselves are easy, but the wait for the result is excruciating - be that as it may, I'm glad I did them - always felt it was better to know than not know.

I decided to go the robotic surgery route - at my age and with my stats, it was sort of a no-brainer - I'm going in for the procedure next Monday. While I feel confident I stand an excellent chance of coming out of the surgery cancer-free, I'm worried about the side-effects (as every guy here is/was) - but like most, I feel they're an acceptable trade-off for a chance at a cure. My doc is very skilled at the procedure (1000+ surgeries) and came highly recommended (by both my GP and some other doctors I know) so I feel like I have the right guy - very important. Also good to get some other opinions - in your case, RT (i.e. radiation therapy) is a viable option and something you'll undoubtedly want to consider. Every guy is different - for me, I probably would have chosen surgery even if I was a G6 - I just want the cancer out - but for some guys the side effects are the deciding factor. No gold standard, I'm afraid - all up to you.

I concur with the others that Dr. Walsh's book is an excellent resource - I recommend reading it cover to cover.

If you're like me, all of this probably feels a little overwhelming right now. The good news is that PCa is a fairly slow-moving disease - and with a G6, you've got some time to weigh the options and make an informed decision. In a little while, you'll start to feel like you're on top of your choices - it just takes a little time to wade through all of the info available.

In any case, this forum is an excellent place to find advice, resources, or just to vent. Best of luck to you...!

DougInLa
Posted 6/27/2013 11:54 AM (GMT 0)
Thanks to everyone's comments.

I have my 1st meeting with the urologist on July 1st about my treatment options based on the initial pathology report.

I am going to get a 2nd opinion on the biopsy results from Johns Hopkins (I have printed off the John's Hopkin's 2nd opinion paperwork to give to my local urologist when I meet with him on July 1st)

Also going ask for a nuclear bone scan and CT scan of the abdomen (Even though my urologist does not thing it is necessary based on my relatively low PSA (3.9) and Geason (6) - more for ease of mind for me as every pain I feel in my back I keep thinking the worst)

Question: Is the bone scan and CT scan an invasive procedure that I should worry about?

Also, I know that I want to get the best prostate cancer doctor's with lots of experience in either surgery (Robotic or open) and or Bracheotherapy.  (Currently looking at these 2 options for treatment)

Does anyone have any specific names of Dr's in the Atlanta, GA area that have extensive experience in either the surgical (Robotic or open) or Bracheotherapy (Seeding).  As I read I know the importance in having a prostate cancer surgeon that performs these types of treatments daily and has 100's if not 1000's of these procedures under his/her belt.  (1st step is narrowing down my treatment option/2nd step identifying the best doctor with tons of experience with positive outcomes to perform the procedure selected)

Thanks In Advance

Posted 6/27/2013 12:03 PM (GMT 0)
I can't help you with suggestions for doctors in Atlanta, but the CT scan is nothing. They make you drink some stuff, then you lay down for awhile. Takes less than 30 minutes, start to finish.
Posted 6/27/2013 4:26 PM (GMT 0)
K,
A bone and CT scan in your case would be a wast of money. Much more effective would be a scan of your prostate, either a Color Doppler Ultrasound, available at Dattoli in Sarasota or a 3T MRI at a major institution. either will give you mush more information than a CT or bone scan, especially if you are considering surgery. Before undergoing surgery you have to determine if there are any extra capsular extensions or that the tumor is away from the nerves, seminal vesicles and the apex as these are all areas that have a high probability of surgical failure, even if the cancer is still locally contained.
As others have mentioned see doctors from all treatment fields, brachy, surgery and external radiation before you make a decision.
Posted 6/28/2013 12:54 AM (GMT 0)
Welcome. I am 49 also. Sounds like you got a plan. Do what you feel is best for you and be comfortable with your decisions. Educate yourself all you can. Glad youre getting another opinion. Good luck to you !

Don
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