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Treatment for in between G6 and G7

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Posted 7/24/2012 5:42 PM (GMT 0)

First time post here, liked what I saw so I joined.

55 years old, live in SE WI, excellent health (up until this. . . .) just diagnosed with PC

PSA rose from 3.8 to 5.8 over past 3 years

Biopsy 6/27/12

7 of 12 Gleason:  3+3, 3+3, 3+3, 3+4, 3+4, 3+4, 3+4

T1C

Don't know what to do re treatment.  Mind is exploding from all of the information I've taken in over the past few weeks.  From all of this analysis I'm still left wondering what my options are, maybe I'm still in a bit of denial???

Questions:

1. Is Active Surveillance an option?

2. If AS is not an option, is open or Robotic Prostectomy better in terms of negative side effects, incontinence, ED?

Researched to find "The Best", and found for open Dr. See at Froedtert in Milwaukee, WI, Dr. Menon at the Henry Ford and Dr. Patel at the Robotic Institute in Orlando FL.

Really confused. . . .

Posted 7/24/2012 5:47 PM (GMT 0)
Sorry, Dr.'s Menon and Patel are Robotic
Posted 7/24/2012 5:55 PM (GMT 0)
Hi Yooper:

Welcome to HW...sorry you have to be here but I think you will find this is a great place that is full of supportive folks who can provide some great advice and share their experiences.

Some here may think AS is ok for you.  Personally, with your age,  7/12 and the G7 components I would think you would want to seriously consider treatment.  But...take your time and do your homework.  Be an educated patient and your own advocate.  There are a number of books that you might consider reading for background includng Walsh's, Strums and Scholz' "Invasion of the Prostate Snatchters".  These will give you a broad perspective on your disease.  You also might consider getting a second reading on your slides from an expert on PCa pathology, e.g. Bostwick Labs or Epstein at Johns Hopkins.

Finally, you should really consider a broad array of treatments.  Not only should you talk with a surgeon, but you should also talk with a radiation oncologist who is experienced in brachytherapy (seeds) and a medical oncologist.  Seeds for your stage disease are likely to be as curative as surgery with much less onerous side effects.  Feel free to copy and past my "journey" at the end of my signature to get an idea about what happens with seeds.  And make sure you peruse a lot of the threads on HW and stories on YANA to see what can go well and what can go wrong with treatments.  Whateveer you decide, make sure your doc is very experienced in the method...studies show that more experienced docs have better cure rates and fewer SE's.

Keep us informed and I know a lot of us will try to help in any way we can.

Jim

Posted 7/24/2012 6:51 PM (GMT 0)
Thanks for the quick post Jim, and also more places to look as I go down this path to making a decision. This is particularly hard for me because I don't like hanging in limbo - I need to have a clear direction and as all of you know that's not likely with PC. It seems the more study I do the more confused I get; I start to settle in on one approach and then read something negative and so on. . . .
I'm probably in the "anger" stage right now - work too hard for all these years to keep this body in good shape to enjoy my retirement years for this to show up.

It seems to me that my Gleason is somewhere between a 6 and a 7, and from my research it would be a bit easier if I knew definitively 6 or 7.

Does anyone know any specific details on Dr.'s See, Menon or Patel?
Posted 7/24/2012 7:03 PM (GMT 0)
Don't rush into anything. There are no do-overs. Consider all your options. Start a journal and keep all your notes and results from your doctors appointment in it. You may think you will remember everything, but you will not and as you can see you will be hit with a lot of information.

I know your mind is spinning. Take a breath, you are going to be okay. Ask any questions you want to here.

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

Good luck to you.
Posted 7/24/2012 7:13 PM (GMT 0)
Yooper,

Welcome to our forum that I am sure you would have not had to join. I am not a doctor or an expert and can only offer my opinions based on my experience and the research I have done on PC.

First of all with 4 of the 7 positive cancer biopsy needle samples coming back with Gleason 7 you have a G7 tumor that could be pretty involved in your prostate. Assuming that all 12 of the needle samples were from 12 different areas in the prostate the cancer may be widespread in the organ. My own biopsy found only 2 of 12 with cancer cells but with 15% and 20% cancer cell volume. Do you know what % of the positive samples were cancer cells?  I choose Robotic Surgery last year after doing my research and my post surgery pathology showed my tumor was 60% of my prostate but organ confined. That large a tumor was not indicated by my biopsy but only a post surgery pathology of the prostate can positively show how extensive the tumor can be and what grade the cancer is. More times than not the post pathology report raises the Gleason score than lowering it.

IMO AS would not be a great option for any length of time, but you do not have to rush off in the next few months for surgery or any other treatment. Remember there will only be one right treatment decision you will make and that is the one you make yourself as you are the one who will live with it.

As to choosing a good doctor experience seems to be the key to having minimal side effects whether its RT or surgery. Any surgeon should have a bare minimum of 500-600 surgeries as the primary surgeon. Any radiation oncologist should have at least 300 cases of treatment. There are a lot of cancer treatment centers that advertise on the Internet but you want to go to one that specializes in prostate cancer. I think Dr Patel works for one like that in Orlando and has a good reputation for robotic surgery. Another Dr to Look at is Dr Samadi in NYC he is somewhat controversial in this forum by some but IMHO probably the best PC robotic surgeon in the US. I would have gone to him but I was limited by my insurance to only surgeons and RT oncologists in my state.

 Good luck and keep us informed as you begin you PC journey.

Terry The Water Guy

Posted 7/24/2012 7:16 PM (GMT 0)
As a general rule, for men with intermediate risk PC (such as yours appears to be based on your biopsy) the younger you are the more seriously you should consider active treatment. You are young.

If you decide to get a second opinion on your biopsy, see if you can get the lab to do a set of 'recut' slides. Recuts are made by thawing out the original biopsy samples and cutting a different slice out of them. That way, not only do you get a second set of eyes looking at the samples, but you also increase the amount of tissue that gets examined. My GS6(3+3) turned into a GS7(3+4) when I got my second opinion on recuts of my biopsy.
Posted 7/24/2012 7:26 PM (GMT 0)
I can only tell you what I would do. I'm following AS at the moment, but I consider myself at the limit of being an acceptable AS candidate. (Some would say no men in their 50s are an acceptable AS candidate, so the topic fairly controversial - even among experts.) If any of my future biopsies come back with more than 3 cores positive or any Gleason 7 then I would opt for the robotic surgery.
Posted 7/24/2012 7:34 PM (GMT 0)
Wow, thanks for all the posts guys, all extremely helpful. Didn't think I "needed" support groups, but you all are/have gone through what I'm feeling so that does help.
I did have a 2nd opinion on the biopsy, done at Froedtert Medical in Milwaukee, very similar results as my original scores. %-wise as follows:
3+3, <5%
3+3, <5%
3+3, <5%
3+4, 5-10%
3+4, <5%
3+4, 30-40%
3+4 15-10%

So again in my mind after all my research I'm still thinking I am on the borderline in terms of what my best approach is. . . . Gleason's of 6 and 7, the 7's being 3+4 (not 4+3 ), other than the 1 or 2 they are low %'s, etc. I guess the other issue I'm having is if someone would provide me with data that says, "sure, you can go AS for x-years, but then you're headed to treatment in x-years anyway" - that would really help my decision making process.

In terms of RP as a possibility I agree that the experience of the surgeon matters, which is why after doing some research I settled on setting up consultations with Dr. Menon (8,000 Robotic RP's), Dr. Patel (>5,000 Robotic RP's) and Dr. See (>2,500 open RP's).

Sorry for the rambling - can you tell I'm still reeling????
Posted 7/24/2012 7:34 PM (GMT 0)
Most doctors treat to the most aggressive Gleason. Thus you are a 7, not "between 6 and 7". Very often surgical pathology finds the G to be higher than the biopsy indicated. All my doctors say that in their experience it is usually more serious than the biopsy indicates. That being said, take your time and study different treatment methods.

Jim gave you great advice about radiation. Here are two sites to help you better understand brachytherapy and adjuvant external beam radiation (IMRT/IGRT). This combination is proving to be more effective than surgery and with less severe side effects. For permanent seeds visit www.prostrcision.com, the website of Dr Frank Critz, the pioneer of permanent seeds and concurrent EBRT. Also visit www.cetmc.com, by Dr Jeffrey Demanes, the pioneer of High Dose Rate brachytherapy and head of radiation at UCLA. HDR brachytherapy is more technologically advanced than permanent seeds and is more accurate in delivering radiation to reduce the side effects. HDR does not leave the radiation in the body.
Posted 7/24/2012 7:34 PM (GMT 0)
Yooper, I'm glad you found this site prior to making a decision. I hope you'll find the perspectives offered here helpful in coming to a decision regarding treatment.

My thoughts run parallel to Tudpock's (Jim) above. One thing I would add is this. Don't look just for the number of surgeries performed if you go that route, look instead for the reputation of surgical excellence. I've hit several thousand drives dring my 45 years of golfing, and I still sorta suck, if you know what I mean. Repetition doesn't necessarily bring improvement.

Also, it might be helpful to start keeping a journal in which to record your cancer "journey," and it never hurts to have someone with you when the doc is talking, because some of us have noticed that we sort of hear like the Peanuts characters did when grownups were talking in their TV specials (Wah, wah, wah, wah, cancer, wah, wah, wah, wah, etc.)

Finally, I'm just on the other side of the Cheese Curtain in the northeastern corner of Illinois (Zion). If you're feeling angry, you can do as I did and curse the now de-commissioned Zion nuke plant (just kidding, but it helped me to blame something). Or, if you want to meet somewhere to talk about this stuff, we might be able to work something out. You can find my email by clicking on my name on the left side of this reply. I expected you to be from the U. P., given your name, but maybe that's where you grew up. My daughter-in-law's family are Yoopeers.

You're off to a great start in dealing with this. Keep posting.
Posted 7/24/2012 7:51 PM (GMT 0)
First - sorry you've got to be hanging around here but you'll not find a better bunch to help you out.

My numbers were similar to yours and I ended up choosing IGRT treatment because I wanted to avoid surgery due to some heart/lung issues I have. I think you'd be fine with either surgery or radiation. At T1C and G7 my RO and Uro talked me out of AS. They would have gone with AS if I was G6.

But the real issue for you now is making a choice - surgery, seeds, IGRT, etc. I was overwhelmed by the amount of information and the lack of a clear proven path. At the same time I was trying to figure out a treatment plan I was still dealing with the emotional response to, "you've got cancer." That sent my brain reeling for awhile. This whole disease is treated partly in the body and partly in the brain. While you're trying to figure out what to do for your body be sure to take care of mental health.

One trap I still fall into is second guessing my treatment choice. Sadly there isn't that magic formula to say which is right or wrong for you. Best you can do is get the best information and make the best educated guess you can. Sadly there is some risk in any decision in this game.

We're here if you have other questions or just need to vent.

Keep us updated on your progress.

All the best,
Andrew
Posted 7/24/2012 7:53 PM (GMT 0)
Howdy Yooper:

Sounds like a fellow Michigander. You will find this to be a wonderful support group. One of the things you have to do is separate wishful thinking from reality. I don't mean to sound harsh, but you are clearly NOT a candidate for AS, unfortunately. The G score by definition is the score of the worst sample. You are a g-7. You are not close to being in-between. I think another criteria for AS pertains to the NUMBER of cancerous cores found. I think they specify 3 or less. Maybe someone else has more information.

That being said, there is no reason to make a hasty decision. I was in your shoes and I consulted at the UMICH Comprehensive Cancer Center. You can schedule appointments with a surgeon, radiation expert, and a general pc oncologist. See them all and sift through the information.

I did that and also consulted with Dr. Mani Menon at Ford Hospital. I chose robotic surgery and Menon. I will be glad to discuss my reasoning for surgery over radiation. But fortunately for you, with your numbers you have all sorts of options. I will say that from my research, it is absolutely crucial to find a good EXPERIENCED surgeon. I found one and frankly if he did open surgery that would have been okay.

Feel free to email me and I can fill you in on Dr. Menon and Ford.

Mel
Posted 7/24/2012 8:01 PM (GMT 0)
Looking at other responses, let me amend my post to underscore Clock's point. Experience is absolutely crucial. The surgeon should have performed hundreds of these. But that's necessary, but not sufficient. You don't want someone who has done hundreds of BAD surgeries. So, as best you can, try and ascertain
the reputation of the surgeon.

Mel
Posted 7/24/2012 8:22 PM (GMT 0)
Let me just get this out there now - a huge "THANKS" to all that are on this thread - I'm sure going through this yourselves you know that I am starting to feel a bit better over all of this - the main thing is getting unbiased feedback from those that have gone through this. . . . .

Keep them coming, and I'll reciprocate by keeping everyone posted.

Gleason 6 your journal was amazing - going to try and do the same!
Posted 7/24/2012 8:24 PM (GMT 0)
To Clocknut - small world sometimes - I live in S.E. WI (originally from the U.P. of Michigan) and also work near the Waukegan and Wadsworth lines. I may take you up on getting together, still trying to process everything and as you all know it can be overwhelming.
Posted 7/24/2012 9:34 PM (GMT 0)
Go to the Johns Hopkins site and look at the criteria for AS. You don't state the size of your prostate, but one criteria for AS is PSA density. With a PSA of 5.8, you would fail this test if your prostate is smaller than 58 grams. Even if you were a true Gleason 6, I think the the number of positive cores you had would take you outside the criteria for AS.

I was 54 when I was diagnosed and even though I fit the criteria for AS, I opted for surgery. I felt that at my age, I was too young for AS and the anxiety that went along with it.

Have you had a second opinion on your biopsy samples? That is the first thing I would do. There are a number of leading experts that do nothing but look at prostate cancer biopsies and they are the gurus for this. Two of those are Bostwick labs and Dr. Epstein at Johns Hopkins. I wouldn't even consider AS without getting a second opinion from one of these guys.

To echo what you've been told here, whatever you do, choose a doctor that has done as many as possible. There is a direct correlation between experience and results. My surgeon had done 4,000 surgeries.

Take a deep breath and relax. Do your homework, which you have started by being here.

Best of luck!!
Posted 7/24/2012 9:34 PM (GMT 0)
yooper,

I echo all of the above, especially where your G score is involved. If you have 1 G7 and the rest are G6, you are still a G7. Interpertation of your biopsy is just that. It's only as good as the person reading your biopsy ( as it is an art)and often is graded higher when it is sent to path.
Take your time to get other opinions and of course go to the best PCa Dr. as others on this forum will chime in as to who is the best in your area, or close to your area.

Good luck,

BOOGEE
Posted 7/24/2012 9:52 PM (GMT 0)
Yooper,
From what it appears you have a large volume intermediate risk PC. Because of the volume, before any treatment is recommended you need futher staging to insure that it is contained, not near any nerves or involving the seminal vessicles. Any of these could cause a primary treatment failure and you certaintly don't want to undergo a major treatment that has a high probability of failure.
The best staging tools are a PAP test, a blood test that if high indicates matastistis. The next staging tests are imaging, either a color Doppler Ultra sound, a multiparametric MRI or an MRIS with a 3 Telsa. Once you get futher information then you can use the Partin tables or other nomograms to see which treatment is best suited to your individual circumstance.
The three steps to the most favorable outcome are:
1. Know the biology of your cancer.
2. Pick the treatment option that best suits your cancer's biology.
3. Pick the very best "artist" to perform the treatment.
Right now you need to concentrate all your efforts in step 1 as this will lead you to steps 2 and 3.
Best of luck and we are always here to help you.
JohnT
Posted 7/24/2012 9:54 PM (GMT 0)
Yooper, you seem to be wanting to wish yourself into being a Gleason 6. You are not. You have a considerable amount of 4 grade in your biopsy. That's aggressive prostate cancer. I would treat it fairly aggressively.

The BEST open surgeons achieve the same results as the BEST robotic surgeons..So the choice is yours (and your insurance companies) which direction you go...Many doctors tend to underestimate side-effects and overestimate their own abilities. You need to have your filters in place when you go shopping for doctors...If you have not read Dr. Walsh or Dr. Chodak's book on the subject, now would be a good time..

Best of luck to you and check in here often and let us know how you are doing...
Posted 7/24/2012 10:03 PM (GMT 0)
I'm sure John T. is absolutely correct in his recommendations about knowing the biology of the cancer, and I've seen him discuss this before.

My question, though is this (and it's too late for me, but maybe good info for others): Will most insurances and/or Medicare pay for color Doppler ultrasound, multparametric MRI, or an MRIS with a 3 Telsa? Are these tests generally available to the typical patient, or do they require flying to exotic locations with specialized equipment? Also, how expensive are these imaging tests?

My uro seemed to have a pretty good idea of what he would be dealing with based on the rough imagery that guided the biopsy and the cysto that showed intrusion into the bladder neck. Obviously, the more that is known going in, the better the outcome should be.
Posted 7/24/2012 11:27 PM (GMT 0)
Yooper,

Grab me a beer once, aina hey?

Da skeeter must be bad up nort, you so far sout from da yoop.

You have a similar dx I had about three years ago. I don't think my urologist would call that a 3+3=6. If you have any 4 grade cells in there, then you are 3+4=7. After post-surgical biopsy it is common for that number to go up, to say 4+3=7 or worse. Mine stayed the same.

Good to see you have made a choice. I'd advise you take steps to take steps to improve your fitness level. The more fit you are, according to the MDs around me, the fewer the side effects. I'm a believer.

I went with a local fellow who is highly regarded. People from around here who go to the popular fancy-pants places are told the fellow is pretty good go home. I like his credentials: Baylor, Ohio State University, University of Chicago, Cleveland Clinic. Before that he was a deep-sea drilling engineer. So he seems to have a touch for those things. I liked the fellow before my wife went to work for him. She's an R.N. there; had been a surgical nurse for 30 years.

Sex function only dropped from drooling 17-year old (which was kind of a pain for a 56 year-old married guy) to healthy thirty-year old. My boy was stirring the day after surgery (not fun) so no need for ED pills, but I don't complain when they hand me samples. Incontinence is no problem when I do my speed walking. I wear no pads.

I did like being home after surgery. Local has its benefits. Of course having my own private nurse who knew the ins and outs of catheters, J-P bag and complications was good: I had both pulled at home. Five days after surgery I walked the ten blocks to the doctor's office. I took no pain pills outside of ibuprofen. Back to work 10 days after surgery wearing a thigh bag with the catheter.

Let's remember the unspoken truth about PCa, it's a whole different ballgame for us young ones -- we are stronger and we have a lot more of our lives in front of us. I've seen Dr. Klotz's chart for GL 7s our age who remain passive: 90% of us die from the disease.

Good Luck,

BG
Posted 7/24/2012 11:31 PM (GMT 0)
Yooper,

Some excellent advice all round on this thread. I think all of this information should help you process the emotional cocktail we typically all go through. You mentioned your "anger" stage, often there is the "denial stage", also the "why me stage, especially having had excellent health" then you advance through the process by "acceptance of your PCa", then the educational stage followed by your curative treatment selection. From my own experience getting to the treatment selection stage gave me a sense of calmness. I found the HW site three weeks after my surgery. You have found HW at a great time in your journey.

This family here offers so much, take advantage of as much knowledge and experience as you can to assist you with your journey.

I was an AS candidate with a low grade, low risk G6(3+3) <5% for 15 months until my second biopsy revealed some G7(4+3) and increased volumes to 10% at which time my URO recommended curative treatment.

It would be my opinion with your G7 and given also your young age that you research all you can on your choice of curative treatment. But don't rush or be intimidated to make a hasty decision, as others here have said you have time on your side.

Wishing you all the very best with your PCa journey and looking forward to your updates and looking forward to seeing you on the other side of this.

Terry

Posted 7/25/2012 12:00 AM (GMT 0)
Clocknut,
I had no problem with insurance paying for any of the above. I had two color dopplers, they cost about $1200. The MRIS at UCSF was $4400 and insurance paid. The best deal of all was the Combidex in Holland that cost $2400 and included an MRI of the prostate, and insurance paid for that, although I had to pick up the travel costs. I had Tricare at the time which is similar to medicare.
In comparison the hospital charged $11,000 for a bone and CT scan which was absolutely worthless.
Most major universities have MRIS now. The best bet for a CDU is Fred Lee in Rochester MI, which is pretty close for Yooper. The multiparametic MRI I know is done at UCLA, I don't know who else is doing it, but from what I hear it is the best scan you can get and I would travel to get one.
Posted 7/25/2012 12:46 AM (GMT 0)
yooper,
Take a deep breath and realize what the Doc and the biop have shown you.
When I was where you are now the choice was easy, after 2 hours of total rundown from my doc: removal, either open or robotic. I chose open.
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