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newly newly newly diagnosed -- do you think this warrants surgery?

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Posted 4/22/2017 8:20 PM (GMT 0)
hi all-

can't believe how informative this site is! what a gift to the newly diagnosed! thank you to all the contributing members!

anyway, my husband was just diagnosed on thursday (gleason 7) & of course we're spiraling. because of his age (he just turned 42), his doctor at cedar sinai is recommending surgery. please see below- do you think his case warrants it?

here are our stats:

left base - 3+3=6
45% volume

left mid - 3+4=7
80% volume

left apex - 3+3=6
35%

right base - 3+3 = 6
15%

target 1
3+4=7
95% volume

right mid, right apex = benign

they found a lesion on his MRI beforehand & doc also felt abnormality on left side during his DRE.

how many cores are positive from what i wrote above?

and what percentage of his prostate is filled with cancer?

i think this means he is T2c, right?

it just says prognostic grade group II on this paperwork.

i should probably also mention that his young father (65) just died a horrible death from PC in november (a very aggressive case).

any advice/direction would be greatly appreciated.

p.s. we're meeting with dr. scholz next week here in los angeles. is he completely anti-surgery? on his site, it states that lean toward HDR brachytherapy for intermediate cases.
Posted 4/22/2017 8:33 PM (GMT 0)
"because of his age (he just turned 42), his doctor at cedar sinai is recommending surgery"

why? is he telling you that surgery is better for young guys? remember this. the vast majority of guys with ED and incontinence issues had surgery.

i'm biased, but surgery to me is "old school" and it would always be my last choice of treatments. also know that your first point of contact is a surgeon (uro) and most guys "just want it out" at first.

I think your husband needs to be treated but I advise you speak to an RO or two before making any decisions and also check out the thread "PC myths and partial truths" that was recently posted.

good luck!

ed
Posted 4/22/2017 9:05 PM (GMT 0)
He has time to make an informed decision. Not always a perfect answer with arguments for and against, this and that. Talk to as many Doc's as you can. Many times the Doctor is more important than the procedure itself.

Post Edited (Gear) : 4/22/2017 3:08:27 PM (GMT-6)

Posted 4/22/2017 9:25 PM (GMT 0)
You have a lot of good choices in LA (which is where I am).

Job 1 is to have his biopsy slides sent to Dr Epstein's lab at Johns Hopkins for a second opinion. It's too important to risk an error at this stage.

Job 2 is to slow it down. PC progresses very slowly (except for very rare forms), especially in most younger men. You have plenty of time to make this decision in an unhurried manner.

There are two doctors you should definitely see: Chris King for SBRT and Jeff Demanes for HDR-brachytherapy, both at UCLA. If you need to stay at Cedars for some reason, there's Zach Zumsteg for SBRT and Mitchell Kamrava for HDR-BT. I don't see any advantage to protons or conventional IMRT - very expensive and unnecessarily long treatment regimen.

I know a lot of guys see Dr Scholz for curable PC - I don't see the point. He's not an expert in any of the therapies that you need expert advice on. You have access to world class experts in radical therapy (either surgery or radiation) - you ought not relinquish that critical decision to anyone but yourself.


As for your questions:

• Active surveillance is an option for men with GS 3+4, but the presence of any pattern 4 makes it riskier. Younger men tend to have fewer side effects with all therapies - surgery or radiation

• His stage is T2a, meaning his doctor felt a small lump only on one side of his prostate. Stage is NOT based on biopsy results.

• You listed 5 positive cores. His Gleason score is 3+4 (only the highest one counts for that). So his NCCN risk group is "favorable intermediate risk."

• You don't know what % of his prostate has cancer unless he has a prostatectomy. I know there's a nomogram that makes an estimate, but it has no prognostic significance. The prognostic risk factors other than the most important ones (GS, T stage, PSA) are the % of cores with cancer and the highest % cancer in any core.

BTW - he may want to bank some sperm before he has therapy.
Posted 4/22/2017 9:31 PM (GMT 0)
I endorse what F8 said. Surgery might turn out to be the best treatment or it may not. You need to also see a radiation oncologist and consider brachytherapy, and/or external radiation as treatments.

Yes, his staging based on what you know so far should be T2c because the doctor could feel it on DRE and because it is present in both hemispheres.

The five cores you cited in your post are all positive, but typically there would be a dozen or so cores taken. If these are the only cores reported to you the other cores were probably negative. You need to get the full pathology report from your husband's doctor and we can help you interpret it.

Based on just these cores I doubt anyone can say what percentage of your husband's prostate is cancerous. But both of the Gleason 7 cores were high volume, though possibly because they were able to get the samples from the most suspicious areas. And PCa was found in both sides of the prostate. However, if the cancer is confined to the prostate and even if it has extended locally outside the prostate, there is still a pretty high probability cure.

Others here have had direct experience with Dr Scholtz and hopefully will see this thread and chime in.

Please keep us posted as you find out more. Best of luck.
Jim
Posted 4/22/2017 9:48 PM (GMT 0)
I`m in agreement with F8 ...........at 42 I sure would`nt want to endure ED and the rest of what most surgeries leave a guy with ......just my novice opinion ....David
Posted 4/22/2017 10:41 PM (GMT 0)
another thing. with those high volume cores I would do some research and figure out what the chances are that the cancer is out of the capsule. because if it is, and you opt for surgery, you would be also looking at salvage radiation.

I know in my case I had a 60% chance that the cancer was out so my surgeon advised against surgery -- and I think that's pretty rare when they do. he said he could not recommend surgery knowing I would most likely need salvage radiation.

some of these doctors will say "i think we can get it all" or "i think we got it all" but really you need to see what the nomograms say.

again, good luck!

ed
Posted 4/22/2017 10:48 PM (GMT 0)
Yes
Posted 4/22/2017 11:41 PM (GMT 0)
thank you so, so much for all of your responses. means so much.

my husband's PSA level was 4.9 in august 2016 & it had jumped to 6.9 by march 2017 -- does that signify a more aggressive form if it jumps this much in half a year?

anyway, his doc at cedars told him that surgery was his best option b/c he's so young & doesn't want to risk secondary cancers/SEs as a result of radiation 10+ years down the line. and also b/c if surgery fails, he has more treatment options available, but if radiation fails he has less...

i can't believe how many different routes one can take once they're in this "intermediate" zone -- it is beyond overwhelming.

will definitely send the slides to john hopkins. and will definitely meet with king & demanes at ucla -- but if we were to interview surgeons in the area, are wilson & kawachi still the best at city of hope? what about ahlering? WHO IS THE BEST IN THE WHOLE COUNTRY? the ny docs? tewari or samadi? (yes, we are freaking out & i've read through all of the archives already!) :-(

we are trying to stay calm & go low/slow, but we just lost his father to the most horrible PC death, so we're also very frightened & ready to kick ass.

p.s. on my husband's report, it says "perineural invasion is identified" on the left base-- does anyone know what this means? does it mean his cancer is likely to spread? or it already has?

p.p.s. on the target core biopsy where it reads 95% volume, it says "prostatic intraepithelial neoplasia, high grade" -- does anyone know what this means?

sorry for all of the questions.

thank you for any/all feedback.
Posted 4/23/2017 12:33 AM (GMT 0)
Studies have shown that secondary cancers from prostate radiation treatments are either extremely rare or are no greater than having surgery.

Impotence is a major side effect of surgery and occurs less with radiation. At 42, that is a major change in quality of life. In fairness, it is still possible to be sexually potent after surgery. Many at this site have done well after surgery. However, many have not.

Regarding the above questions--perineural invasion does increase his risk of the cancer escaping the prostate. To me, this would indicate radiation more. The radiation covers the prostate and a zone that extends outside of the prostate. In my biased opinion, SBRT, HDR brachytherapy or LDR brachytherapy are good choices for him.
If your husband chooses surgery, I would choose Tewari over Samadi.

Good luck and God bless
Paul
Posted 4/23/2017 1:09 AM (GMT 0)
Welcome. It looks like you're getting a lot of good advice in this thread already, but with regard to the two terms you asked about in your last message here's a cut-and-paste from the American Cancer Society's guide to understanding prostate biopsy reports:

ACS said...
What does it mean if my biopsy mentions that there is perineural invasion?

Perineural invasion means that cancer cells were seen surrounding or tracking along a nerve fiber within the prostate. When this is found on a biopsy, it means that there is a higher chance that the cancer has spread outside the prostate. Still, perineural invasion doesn’t mean that the cancer has spread, and other factors, such as the Gleason score and amount of cancer in the cores, are more important. In some cases, finding perineural invasion may affect treatment, so if your report mentions perineural invasion, you should discuss it with your doctor.

What does it mean if, in addition to cancer, my biopsy report also says high-grade prostatic intraepithelial neoplasia or high-grade PIN?

High-grade prostatic intraepithelial neoplasia (high-grade PIN) is a pre-cancer of the prostate. It is not important in someone who already has prostate cancer. In this case, the term 'high-grade' refers to the PIN and not the cancer, so it has nothing to do with the Gleason score or how aggressive your cancer is.


In other words the perineural invasion raises some concern about cancer extending beyond the prostate, but it's nothing definite. The mention of the high-grade prostatic intraepithelial neoplasia can be ignored, since cancer was found in other cores.
Posted 4/23/2017 1:19 AM (GMT 0)

pwallace said...
anyway, his doc at cedars told him that surgery was his best option b/c he's so young & doesn't want to risk secondary cancers/SEs as a result of radiation 10+ years down the line. and also b/c if surgery fails, he has more treatment options available, but if radiation fails he has less

See this recent thread about myths, lies and incomplete info:
www.healingwell.com/community/default.aspx?f=35&m=3833811

Also:
Secondary cancers due to radiation are a very rare occurrence, if they do occur at all - the incidence of secondary pelvic cancers is about the same whether a man has surgery or radiation. Age and smoking have much bigger effects. There have been several attempts to estimate the probability of radiation-induced secondary cancers, the probability is on the order of 1-5 in a thousand. Here's some data:

/pcnrv.blogspot.com/2016/08/radiotherapy-induced-second-primary.html
/pcnrv.blogspot.com/2016/08/the-real-risk-of-secondary-malignancies.html

PSA is not a very good marker for PC, so it's hard to say what the jump means. Perineural invasion just means that cancer was noticed around the neurons that are inside of the prostate. That gives the cancer a route out of the prostate sometimes. It is a relatively minor risk factor. HG PIN is a pre-cancerous state. It just means that those cells might or might not become cancerous someday. Not a thing to be concerned about.

Kawachi no longer does surgeries - he retired from doing them. There are many good surgeons in the LA area - who did you talk to at Cedars? See the list of questions to ask - at the end of the sticky for the newly diagnosed.

Tewari - hands down.
Posted 4/23/2017 2:31 AM (GMT 0)
This may sound idiotic....(and may be)

I believe I knew more about my cancer than my local surgeon. I knew it's location, approx. size.....about what to expect for a final path. I was even told by one radiologist that read the scans that a surgeon would want to cut wide at a certain point. I believe that's where my surgeon made his error. That's why I like guys that use scans.

There was a part of me that did not completely trust my local surgeon to know everything there was to know about my cancer. When I brought the scans up to him...he said....."They're not reliable enough to use". The fact is....the technology, much less the expertise to use it, does not exist where I live. I chanced it.

The way I learned about my Prostate Cancer was by going to Dr. Tewari. He did scans. He did a DRE like none I had ever experienced. He knew. If I had gone with him, I do not believe I would have had this positive margin. He knew it was close to the edge. He would have cut wider at that place, even if it meant losing a nerve or two. My local doctor misjudged. I do not know this as fact....my choice is to believe....he was trying to do me a favor by saving as many of the nerves as possible. And he accomplished his mission. I have erections no problem. But...I also have a surgically induced positive margin. And it may very well be I would have had it, or worse, no matter where I went. But, put the odds in your favor.

It sounds as if you are getting good medicine so far. You've had scans. Your doc is also saying he feels something. Keep doing what you are doing. Listen to and trust your inner voice. Do not deny it. You will come out of this unscathed.
Posted 4/23/2017 3:26 AM (GMT 0)
wow, island time, i love your response b/c i truly do believe in intuition. SO MUCH. and i feel like we muddy the waters when we visit all these doctors & hear too many opinions. but yet we NEED to hear them, right? it's all such a mind game. and we've only been at it for 48 hours. well, longer, if you count dealing w/my father in law's demise...

thank you also to tall allen & f8 & everyone else for taking the time to respond to these threads! my husband and i have been huddled around the computer for days, and i can't tell you how much comfort this brings us- we're not alone & all of you have such a wealth of knowledge- thank you so much for sharing.

our cedar sinai doc was sort of incredulous about us getting a second opinion on our slides (john hopkins)- he said a lot of people actually send him (cedars) their slides for 2nd and 3rd opinions. alas, we will send our slides. and fly to new york to meet w/tewari. is there anyone out there better than tewari, though? anyone at john hopkins? or what about ben stiller's doc? what about edward schaeffer? isn't he the one walsh recommends?
Posted 4/23/2017 3:52 AM (GMT 0)
pwallace, Most of the responses here have favored radiation over surgery, yet you seem fixed on surgery, based on the advice given to you by surgeons. Surgeons are not authorities on radiation, and their opinions are often not based on recent studies.

I believe that you would be well served to consult with some radiation oncologists.
Posted 4/23/2017 3:56 AM (GMT 0)
Secondary cancers are not we should be worried about. You urologist that suggested against radiation therapy is incorrect. I had radiation therapy with a higher risk than you and am doing fine.
Take your tme and understand allnrhebootionsnbeforendexmixing on a treatment path. You have at least ninety days to decid.
Posted 4/23/2017 4:23 AM (GMT 0)
I honestly think that once a surgeon has about 1000 under his belt, he's not going to get much better. Tewari has an interesting "torsionless" technique - I hope he will publish his results. Patel has an interesting amniotic sac technique. I think Ahlering uses cooling. All not enough data to see if any of it really makes a difference. But I'm glad they are experimenting. There have been no really major changes in surgical technique since Walsh started nerve sparing - even robotic wasn't really a change in the basic procedure. All the major LA hospitals have great surgeons - UCLA, Cedars, USC, CoH, St John's, UCIrvine. No need to really go farther afield.

BTW - If you believe in intuition, you ought to read: "Thinking, Fast and Slow" by Kahneman. One of the best books I've read in the last few years. I think you will find it eye opening.
Posted 4/23/2017 4:54 AM (GMT 0)
/www.verywell.com/rudy-giulianis-battle-with-prostate-cancer-2782149

This is Mt. Sinai. One stop shopping. I'm sure there's just as good a care in California. No doubt about that. I don't know that you need to travel across the nation for this. I do believe it would serve you well to have an RO's opinion on your husband's condition. There's some cancer there. There's contention between the radiators and the cutters. That's a fact. And both sides believe their side is correct. It's probably fair to say that is factual.

I'm a layman. I know nothing. But I have an opinion. And my opinion is that your husband would be well served to visit an RO. The article calls Giulianis's treatment "unconventional". But that was almost 20 years ago. I'd get an opinion about that from either them, or someone closer to home.

Everyone has their own personal opinion, and reasons (valid both sides) for them. My own opinion is that the more cancer...the more radiation comes into being a good choice. Giulianis's cancer was "fairly serious" was the term they used to described it to me as.

I should've stayed out of this. You're getting so much information, so many opinions, and you are already frazzled enough. You don't need to be. It's obvious that you're going to do fine. It just is. You're not going over to Broadway and Fifth to have this done. That's all I care about. Once you get to a certain level of care....with all of the names that's being thrown around of famous people....the playing field levels out as far as treatment goes.

his was worse than your husbands. I don't see anyone recommending Hormone tmt for your husband. Although, the RO at john's Hopkin's brought this up with me and I was only a G6! Go figure!

Keep it simple. And I'm afraid I'm not helping you to do that.
Posted 4/23/2017 5:23 AM (GMT 0)
Welcome P!
I'm terribly sorry you had to experience the loss of your DH's Dad to PCa. I know it must be just increasing your anxiety and drive to get the best possible outcome for your husband. Whatever path you choose, stick with us. We'll all be holding your hand through this cyber style. There have been a couple of newly diagnosed very young men posting lately. I'm glad your husband caught it before it spread.
Best wishes for complete cure.
Beth n Gary
ps..we are Californians too, but aways north of SF on the coast. That makes us Giant's fans, but we won't hold it against you if you like the color blue. wink
Posted 4/23/2017 5:47 AM (GMT 0)
Beth & Gary-

You're Giants fans? This changes everything! Actually, since I worked for the Astros, I'm team agnostic.
Posted 4/23/2017 5:49 AM (GMT 0)
Pwallace,
Having been recently diagnosed and treated you will be overwhelmed with information. Some of it here is biased based on our personal experience and perspective and mine will be no different.
I'm 50 and had my Biopsy showed only 2 cores positive. One only had 2% > post surgery 40% of my prostate was infected with cancer!
Before surgery I had an MRI done and it showed that there was a small tumor inside the prostate> post surgery cancer had spread outside of the prostate
I had minimal side effects from surgery but my recovery from surgery was the worst pain of my life and I spent 30 days in hospital!
Since the cancer had already spread outside the prostate gland they now want to treat me with radiation. Right now I'm cancer free but the chances are very high that it will return.
My biased opinion would to start with a lupron shot to slow the cancer down and give you some time to sort out your options.
With your husbands family history and the amount of cores that are positive (5). I would definitely lean toward radiation.
The surgeons will tell you that if surgery fails you still have radiation treatment. True, but if that's where you end up anyways why go through the trauma? Seek out as many professional opinions as your insurance will allow on both sides of the fence.
There are so many variables to consider. Financial, age, quality of life, family, work, etc..
Just do your best with what resources and knowledge you have.
Lots of sound advice above! Tall Allen has very good advice especially with your locality ;)
-Best of luck to you
Hope my 02 cents helps smile
Posted 4/23/2017 1:05 PM (GMT 0)
Hello PWallace and welcome. You have already received some great advice and I see you are starting to take it, e.g. sending your slides to Epstein. I tend to side with the others who suggest that you see some outstanding RO's before jumping to surgery. You seem to be favoring surgery but your hubby presumably has a lot of living left to do and quality of life should be one of your/his prime goals IMHO.

Re Dr. Scholz, you might want to read his book, "Invasion of the Prostate Snatchers" to see why he often dos not favor surgery. Will be interested in his perspective on your husband's case. BTW, many wives (including mine) tend to be of the "get it out" mindset thinking that the cancer MUST be removed from the body for a cure. Clearly that is not true and my wife and I are both really, really glad we took our time and emphasized quality of life along with cure rather than any predisposed intuition that she had.

Jim
Posted 4/23/2017 3:21 PM (GMT 0)
Hi PWallace...very sorry to hear about your husband's diagnosis. Regarding your question about Dr Scholz...if you read his book you'd certainly get the idea that he's completely anti-surgery. That said, when I was first diagnosed I consulted with his colleague Dr Lam (I'm also in the LA area) and I was surprised he didn't have a strong anti-surgery push. He did help me understand some of the risks of surgery with my diagnosis (I was a G9), such as needing follow-up radiation, but it was mostly in "let's review all the options" way. There's also another G9 here at HW, who was surprised that Lam felt that due to his unique circumstances, he would do better with surgery than radiation.

Of course, I'm not sure how different Lam's approach is to Scholz's. (I did meet later with Scholz, but it was after I had already started treatment.) I'd be very interested in how it goes for you.

One other thing...the doctors that Allen listed here in LA are all excellent resources (and practitioners) for you. Although I never met with Dr King, I did consult with Dr Demanes and Dr Kamrava (then at UCLA, now at Cedars) did my HDR brachy.

With your husband's diagnosis, you have time to sift through your options. Good luck to you and I hope we can be of help!
Posted 4/23/2017 3:57 PM (GMT 0)
thank you, thank you, thank you! please keep these responses coming- we are pouring over every single post. and my husband himself is going to start posting soon under this same account. he is beyond grateful for this forum.

but first things first -- we are NOT leaning toward surgery even if it looks like it from my previous posts! we're truly just ALL OVER THE PLACE in our thinking, and surgery got stuck in our heads b/c of our initial consultation. but i promise we are going to meet with ROs...both at ucla & cedars. we know we're in great hands w/that here in los angeles. and if anything, we're leaning toward RO now that we understand what "perineural invasion" means... his father suffered so much & had so many complicated surgeries. his quality of life was HORRIFIC toward the end. we will do anything to avoid that same predicament.

after going through his report again, we think he had 8 cores positive- not 5 like i mentioned above!

first one says - one of two core fragments
second one says- two of two core fragments
third one says- two of three core fragments
fourth one says- one of two core fragments
fifth one says- two of two core fragments
and my husband thinks there were 14 or 15 pokes, so i think it makes him 8/15.

so question for you guys- do you find the results on this site to be accurate- https://www.mskcc.org/nomograms/prostate/pre-op

we did it last night & it said he only has a 37% chance that this is organ-confined at this point & a 60% chance of extracapsular extension. we weren't told any of that at our initial appointment.

to the poster who said we might want to check into freezing sperm- omg the cruel irony of ALL OF THIS is that we have 3 little children so my husband had just had a vasectomy on march 23, 4 weeks TO THE DAY he found out he has cancer. LIFE!
Posted 4/23/2017 4:25 PM (GMT 0)
pwallace, I wish you and your husband all the strength and wisdom necessary to go through this process as smoothly as possible. Deciding on the best treatment for PCa is probably one of the hardest decisions that you're going to make in your lifetime. At least, it was for me. What helped me a lot to get an understanding of this decision-making process, was reading this book: Critical Decisions, How You and Your Doctor Can Make the Right Medical Choices Together by Peter Ubel, M.D.
https://www.amazon.com/Critical-Decisions-Medical-Together-Hardcover/dp/B00ACHNS50/ref=sr_1_2?ie=UTF8&qid=1492964460&sr=8-2&keywords=Critical-Decisions-Medical-Choices-Together%2F
It's a pretty quick read, but illustrates the challenges of the proces quite well and gives you insight in the doctor's point of view. It helped me to convey my choice for RT to my wife, who initially was on the 'cut-it-out' bandwagon.

Good luck!

Hans
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