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Posted 10/16/2013 4:18 PM (GMT 0)
Hi to all..

I was recently diagnosed with prostate cancer. Its been about a month now since that first psa result of 15.3.

Found the first urologist that could see me...he seems quite good..and he got a psa of 21.10. 10 out of 12 cores positive. Im at the point of deciding how to deal with this.  He recommended surgery or radiation..or possibly a combo of the two. Im leaning towards surgery and was wondering if anyone had a recommendation? Im in Southern California but would go anywhere. I ve found someone that seems good and has done over 1000 robotic surgeries. My urologist recommends a different guy. The surgeon with the 1000 surgeries told me it wasn't something I had to do today that a month or so would not change the biology. The urologist wants it done like right now. So confusing...

Thanks,

Finchrat

Posted 10/16/2013 4:30 PM (GMT 0)
Bubba, welcome to our little corner of the world. With a PSA of 21 and 10 out of 12 positive cores, it looks like you've got quite a "load" of PCa. You didn't say what your Gleason score is from the biopsy? This can make a huge difference in what treatment you choose and how soon you should begin treatment. Another important piece of the puzzle that should also be included in the biopsy report is the percentage of cancer found in the 10 cores.

If surgery is indeed the way you go insofar as treatment, you'll have to wait 6 to 8 weeks after the biopsy to have the surgery. If you still have a few weeks to go before you can do the surgery, this might be a good time to check out the two surgeons recommended to you...while robotic surgery has a somewhat steep learning curve and you want someone with experience, you also want someone who you're comfortable with and who will answer your questions and address any concerns you may have about ED and incontinence (and these can both be issues for surgical patients).
Posted 10/16/2013 4:47 PM (GMT 0)
Finchrat,
I would definitely get a few 2nd opinions. A high psa coupled with a large volume tumor carries a high risk of surgical failure because of both positive margins and high psa reflecting that it has already escaped the prostate. If you are in So Cal I would get an opinion from Dr Scholz in Marina Del Rey, who in your case would do scans and other markers to confirm suitability of surgery. You don't want to so surgery if it won't work and you don't want to do radiation on top of surgery if you can help it.
The best surgeons in the LA area are Dr Alhering at UCI and also the City of Hope has some great surgeons.
I would definitely investigate a combo of Brachytherapy (seeds) combined with IMRT as this has been proven very successful with someone with your stats.
With your stats without imaging to confirm tumor location, volume and containment, surgery would be very risky. Surgery will only work when there is no extra capsular extensions, no seminal vesicle invasion and good margins in the Apex. Without confirming the above you are subjecting yourself to way too much risk of failure. A couple of months of research and 2nd opinions won't effect outcome and will be useful in making a decision that will affect the rest of your life.
JT
Posted 10/16/2013 5:02 PM (GMT 0)
Finchrat,

Welcome to the forum! You have just joined the club that nobody wants to be in. Sorry 'bout that. But glad you found us.

A few more questions, if I might, to guide the non-medical-professional advice you will get here. In your title you mention Gleason 7. Usually, that is written as the sum of two numbers. (My Gleason 9 is written GS9(3+4), for instance.) GS7(4+3) is worse than GS7(3+4). Do you know which kind you have?

Also, how old are you? There are some treatments that work better for younger guys because they recover faster.

Other things you might want to do are 1) get a second opinion on your biopsy slides from a lab that specializes in prostate cancer (see the sticky "Just Diagnosed with PC?" thread for some recommendations), and 2) talk to a radiation oncologist, too, especially one who does brachytherapy. Sometimes brachy can give the same cure rates with less chance of side effects such as impotence and incontinence.

You will probabaly want to get treated in the fairly near term, one way or another, but you do have time to look at your options.

Good Luck.
Posted 10/16/2013 5:27 PM (GMT 0)
Finchrat, welcome to HW. Sorry you have to be here but you will soon see that this is a great place for support and info. You have already received some excellent advice by Sephie, JT and Peter. I'll just emphasize that it would help if you provide your additional stats and that Dr. Scholz as recommended by JT treats a number of members of this forum and is known as one of the best, world-class prostate oncologists.

Jim
Posted 10/16/2013 6:17 PM (GMT 0)
Finchrat,

I'm so sorry to welcome you here, especially with your troubling diagnosis.

You didn't mention your stage - did they feel a lot of lumpiness or hardness in your prostate or do an MRI or other imaging study? Any suspicion of extracapsular extension? The size of your prostate is important too - a PSA of 21 in a small prostate is higher risk than in a large prostate. As PDA asked, a Gleason score of 4+3 may have different treatment options than 3+4, especially when it comes to hormone therapy. PSA over 20 just puts you in the category of high risk of recurrence after treatment. I hope you got a second opinion on your biopsy slides (see the sticky for the newly diagnosed).

The reason it is categorized as "high risk" is because there is a significant probability that the cancer has already spread from the prostate capsule into nearby structures. If that has occurred, surgery will not be curative. Radiation, which treats a margin outside of the prostate capsule, may be curative in that case. I would never go into surgery, expecting to do radiation afterwards -- the side effects are worse than doing either alone. There are salvage therapies available after both radiation or surgery (contrary to what you may have heard), so that ought not even enter into the decision, imho.

As far as surgeons go, I know of Dr. Kawachi at City of Hope. However, since you are willing to travel, my only choice of a surgeon would be Dr. Ash Tewari, now at Mt Sinai Hospital in NYC. He is the only surgeon I know of who does a torsionless nerve sparing technique where he monitors penile oxygenation throughout.

I spent most of yesterday meeting with two brilliant radiation oncologists at UCLA - Jeff Demanes and Chris King. Both are leaders in their field. Dr. Demanes specializes in HDR Brachytherapy, and Dr. King specializes in SBRT - both great therapies with very high cure rates, and very low rates of sexual, urinary and rectal problems. Whether or not it makes sense to add in hormone therapy or additional IMRT radiation in the prostate bed and lymph nodes in your case, will depend on your exact diagnosis.

- Allen
Posted 10/17/2013 5:37 AM (GMT 0)
Hi and thanks for the welcome...

Not sure how to indicate the numbers from the biopsy. rt side has three 3+4, one 4+3 (100%) one 3+3 and one benign. three 100% cores, one 70%, one 85%. Left side 3+3 and one benign. 5, 6 and 10% cores.
The urologist said I had a 70% chance of cure. As for the staging I think he said I was T2a. I have the medical notes here but see nothing as far as volume of prostate or tumor. I don't think anyone has done any study to determine the size of the tumor. The prostate is 61.14 gm.

I did see one of the oncologists at the place Dr sholz works at. Unfortunately it wasn't him..he was busy and so I needed to make an apt with Dr Lam. Frankly I was very unimpressed. I sent them my records ahead of time but he clearly hadn't looked at them. Sort of shot from the hip info that I mostly already knew. No testing. He suggested of the two treatments radiation would be better. How he would know that without knowing the size of the tumor I cant understand. I would like to see dr sholz if he would be more interested in my case. I just don't feel like I have an exact diagnosis from anyone yet they all have suggestions on what I should do.
Posted 10/17/2013 5:38 AM (GMT 0)
Oh I think I found some other info..the urologist said I was a gleason 7.
Posted 10/17/2013 5:41 AM (GMT 0)
yet more info sorry for so many posts. The urogram was negative as was the bone scan using that radioactive stuff they inject. so that much is good. But Dr Lam said that doesn't mean much as cancer is microscopic.
Posted 10/17/2013 6:22 AM (GMT 0)
Finchrat-

That info tells you a lot. Your Gleason score is characterized by the highest Gleason score, which in your case is Gleason 4+3. You also have a lot of tumor involvement. Your prostate volume is 61 cc or g (it's mostly water so the weight in grams is close to the volume in ccs.) With your PSA of 21, that means your "PSA density" is 21/61=.34, which is about twice the average. They don't normally measure tumor size with PC unless the whole prostate is surgically removed. PC tumors are typically multi-focal -- lots of small ones. The biopsy just takes a sample, so when the tumor takes up all or most of the biopsy cores, as they did in your case, they know that you have a lot of cancer involvement.

Putting your numbers into a nomogram like the one below, it shows the probability of it spreading outside the prostate based on the experience of thousands of men:
Prostate Cancer Nomograms: Pre-Treatment

You can fill it out with the additional details if you like, but based on my guesses, there is about a 40% chance that it is organ confined right now. So if you decide to go for surgery, there are substantial odds that will have a recurrence within 10 years. You may have better odds with some kind of radiation.

I'm sorry your appointment with Dr. Lam was disappointing. My experience with him has been more positive. He's not a "people person" and he is a bit nerdy, but he is very knowledgeable. I know that Dr Scholz has his doctors in his office on rotation, which doesn't suit everyone. If you're in LA, there is also Dr Agus and Dr Gross, oncologists at the USC Westside Cancer Center. My urologist (who is not a urosurgeon) is Leonard Marks at UCLA, who is heavily involved in clinical trials. You can also make appointments with Drs King and Demanes (Radiation Oncologists) directly -- just bring your biopsy report and your PSA history.

- Allen
Posted 10/17/2013 6:31 AM (GMT 0)
Finchrat,
Please read what John T and Tall Allen posted..Radiation is most probably in your future since it covers effectively a larger area than surgery..With a large tumor load like mine, nerve sparring might not be possible; My urologist told me she would take my nerves so I did an about face and had it done "right the first time". See my signature. Wish you all the best!!
Bill idea
Posted 10/17/2013 12:22 PM (GMT 0)
Finchrat,

Thanks for the info. That gives us a much clearer picture. Sadly, it's not a pretty one. You have several factors that put you in a high-risk category -- that 100% Gleason 7(4+3) core for one. Cancers in that category are still curable-ish but it takes more aggressive treatment, usually a combination of several treatments, to get the job done. The trick is to come out the other side with as few bothersome side effects from the treatments as possible.

As others have said, your chances of avoiding radiation as one of your treatment modalities aren't great. Surgery won't treat the surrounding tissues very effectively and, with an aggressive cancer such as yours, your doctors will probably be quick to pull the trigger on radiation if there is any doubt at all that the cancer was contained in the prostate after surgery. That being the case, doing the whole thing with radiation might give you fewer side effects to deal with. I'd at least talk to a radiation oncologist about a combination of radiation treatments -- say, brachytherapy to aggressively treat the prostate itself and external beam radiation to hit the surrounding tissues.

None of this says that surgery won't work fine for you if you can make the stars align just right. If your cancer is nicely contained (50/50 shot at best) and you use a rock star surgeon who can get it out without damaging your nerves and if you are young enough to recover from the surgery then surgery can conceivably give the best possible result. You haven't told us how old you are, or how lucky you feel. If you are really young, healthy, and most of all, a lucky guy, then surgery is a good option, too.
Posted 10/17/2013 2:04 PM (GMT 0)
Thanks again for all the info. I am 58 years old. This is the kind of information my urologist doesn't tell me. He says I have a large tumor but that's all. That I have a 70% chance of a cure but that he recommends removal plus radiation to mop up anything left. Dr Lam wanted all radiation, seeding, and possibly 6 months of hormone therapy.

Its my understanding that all that will damage the nerves just the same as surgery and possibly leave one with urination issues, colon problems etc. Anyone heard of Dr James Pero? I spoke to him about removal and he seemed more optimistic saying the size of my prostate was ideal for removal. Hes done about 1000 of these. Yet Dr Lam says that surgery will only deal with the prostate itself and not the microscopic cancer escaping. He also said most men have that just he cant say how much I have. And that surgeons don't consider that kind of thing only the prostate itself. Hard to know who to believe you know?

I haven't got a second opinion on the biopsy yet..should I still do that? 

Posted 10/17/2013 3:02 PM (GMT 0)
Prostate snatchers comes to my mind as I read your posts...

Surgery, and then radiation "to mop it up"? Your doctor must be kidding. I can hardly believe this. Why subject yourself through side effects of both, if you can subject yourself to the side effect of radiation only. As a matter of fact, radiation WITHOUT a prostate may be more damaging for your nearby organs.

I found Dr.Myers video blog about this topic, please listen to it:
askdrmyers.wordpress.com/2012/03/07/surgery-vs-radiation-for-pca/
Posted 10/17/2013 4:03 PM (GMT 0)
Well you see why I am so confused as to what to do...I am seeing another urologist today for another viewpoint.

When I got that first high psa reading after a physical I found the first urologist that could see me so he isn't necessarily the best. All this drama has occurred within the last 30 days.

I am learning more from the group here that's for sure and I appreciate it.

Posted 10/17/2013 4:13 PM (GMT 0)
Finchrat,

If you decide to go with surgery you are likely to be following in my footsteps, more or less. I was a few months older than you when I was diagnosed. I had just turned 59. My decision making process was different because I was believed to be a low to low-medium risk before surgery.

The surgery left me impotent and incontinent. My surgeon was able to do "some" nerve sparing but only on one side and, while it is possible that I will recover my ability to get natural erections someday, it is unlikely.

I use injections to get my three-times-a-week erections for rehabilitation (so nothing shrinks or shrivels.) My post-operative pathology report moved me to the high-risk category -- Gleason 9(4+5) with a substantial amount of cancer and positive margins. And because of that I was scheduled for radiation and hormones to "mop up" as your urologist has it.

They started me on hormones right away (to make the cancer more sensitive to the radiation) but waited a few months before starting the radiation to see if I couldn't resolve my incontinence issues. (Radiation slows recover of continence after surgery.) In the end we had to go ahead with radiation since it wasn't clear the I would ever get dry.

The radiation wasn't bad. Side effects were fatigue, hemorrhoids, and somewhat peculiar bowel effects (inability to trust a fart). But, like I said, not bad. It's hard to sort out any lingering side effects of the radiation from the side effects of surgery. Mostly, one notices the side effects of the surgery and the contribution of the radiation and the hormones is to keep them from improving.

Nerves that have been traumatized by surgery recover more slowly, if at all, after you zap them. But, what people don't know, is that the blood vessels are damaged by the radiation, too. That's actually the main way radiation contributes to ED -- by causing problems with the blood supply that come on slowly over a few years after treatment. In my case they may be interfering with my penile rehabilitation after surgery.

But I remain hopeful. There are surgical treatments for incontinence and there are penile implants if I continue to struggle with my rehabilitation. So it's not all bad. But it could be better. I'd talk to a brachy guy if I were you.
Posted 10/17/2013 5:29 PM (GMT 0)
Thanks for your input it is all valuable to me and helps me in  making a decision. Im one of those guys that needs info and someone to bounce ideas off of to decide things.

Ive just had bad luck with these cancer doctors so far

 I just got off the phone with my original urologist..the one that did the biopsy. He said I could call him anytime so I did.  The surgeon hewanted me to see is Dr Aron of USC. I cant find anyone that has been treated by him yet my urologist says he is the best. Aron keeps rescheduling my apt too. Well, when I told him that I had seen another urologist Dr Pero who has done 1,000 robotics. I thought he might say great..you got another view point. Nope. He was miffed and said that he is just a urologist like me and if you want me to do it I can too. he got upset and said "Look you can see anyone you want I am just telling you who is the best."

I told him I had seen Dr Lam and he didn't agree with surgery and radiation combined. Again I got the attitude about how I can do what I want he is just trying to advise me as to his best ideas on my options. Also that he doesn't have those conversations on the phone IE come to my office where I can charge you. Gee do I need another urologist or what...?

Posted 10/17/2013 5:49 PM (GMT 0)

Finchrat said...
Its my understanding that all that will damage the nerves just the same as surgery and possibly leave one with urination issues, colon problems etc.

The side effects (SEs) are different. With surgery, there is a 50% or greater chance of erectile dysfunction with nerve sparing, and that goes up to over 80% without nerve sparing. With your high volume of cancer, I wonder if nerve sparing is a realistic expectation for you. about 10% are left with incontinence lasting more than a year. Other significant SEs may include climacturia (shooting urine at orgasm), stress incontinence (e.g., when you sneeze), and penile shrinkage. Rarely, there are surgical complications, fistulae, etc.

With radiation, erectile dysfunction occurs in 20%-40% of men, depending on the type of radiation, the baseline erectile function and the age. Erectile dysfunction that occurs with radiation will happen owing to fibrosis in the penile artery, rather than damage to the nerves. Fibrosis is less likely the younger you are, and for this, you are considered young. I was the same age when treated and have had no ED problems. Urinary and rectal symptoms are irritative: there may be some frequency, urgency, burning, retention. Those symptoms appear quickly (acute) and generally resolve soon thereafter. Medications can help a lot. They may re-appear a year or so later, but they are typically transient. Some men have a genetic abnormality that makes them super-sensitive to radiation (I suspect that is the case with "Purgatory" on this site), but that is exceedingly rare.

With either, you will lose your ability to ejaculate semen at orgasm. :-(

Finchrat said...
Dr Lam wanted all radiation, seeding, and possibly 6 months of hormone therapy.

That sounds like a very good plan to me. I would recommend you look into HDR brachytherapy (temporary implants) rather than LDR brachytherapy (seeds). To my knowledge, the real artists with seeds are not in the LA area, and it makes a big difference with seeds who treats you. Dr. Grimm in Seattle and Dr. Taira in Mountain View are the best on the west coast for seeds. Dr. Demanes at UCLA is probably the top person in the country for HDR brachy. If he's on vacation when you call, Dr Kamrava at UCLA is also excellent.

Finchrat said...
I haven't got a second opinion on the biopsy yet..should I still do that?

It's a good idea, but frankly, given the high volume of cancer they found, I doubt that any variance in their findings would make much of a difference in your treatment plan.
Posted 10/17/2013 6:17 PM (GMT 0)
How long has it been since you were treated? do they take out those temporary seeds? I am more concerned about long term affects of radiation like, 5 years later something happening. Does it get into your bones?
Posted 10/17/2013 6:22 PM (GMT 0)
Bubba, you are in a fight for your life here, no doubt about that..Your stats puts you in the "High Risk" category..Read Dr. Walsh's book, learn about Partin Tables and how to use them..

Psa 15, prostate size 61 grams (very large) 4+3 =7 found 100% of one core, this is serious business..

Some people believe that your BEST chance for long-term survival depends on the most aggressive treatment possible..First, surgery to remove as much of the cancer as possible, perhaps 100% of it if you get lucky...But in any case, the amount of cancer in your body will be greatly reduced, leaving the Radiation Oncologist with a MUCH easier job as the number of cells he needs to kill has been reduced by 95% or more...Expect some HT too..It helps the radiation mop up any remaining cancer cells that may be floating around inside your body looking for a new home...That's one theory..

Another is to skip the surgery and it's potential side-effects and let radiation take care of the entire problem by itself with some help from concurrent hormone therapy...

In any case, you are looking at some serious, life-changing side-effects...Some men escape relatively untouched by treatment side-effects, but sooner or later, most of us have had to deal with them and are continuing to deal with them..

best of luck to you, we are all here to help...
Posted 10/17/2013 7:01 PM (GMT 0)

Finchrat said...
How long has it been since you were treated? do they take out those temporary seeds? I am more concerned about long term effects of radiation like, 5 years later something happening. Does it get into your bones?

I was treated 3 years ago.

Yes - the temporary implants would be inserted and removed during one overnight hospital stay. Nothing is left inside.

In terms of long-term effects, it is very rare for any side effects to occur after the first two years.

Secondary malignancies due to radiation do not happen out to 10 years, according to a study from Memorial Sloan Kettering. The 10-year likelihoods for bladder or colorectal cancer secondary malignancy development among men who had surgery, brachytherapy and external beam radiation were 3%, 2% and 4%, respectively (exactly the same, within statistical measurement error). So you are no more likely to develop a secondary cancer within the pelvic area if you have any kind of radiation or surgery.

Secondary cancers after intensity-modulated radiotherapy, brachytherapy and radical prostatectomy for the treatment of prostate cancer: incidence and cause-specific survival outcomes according to the initial treatment intervention.

Modern radiation techniques are exceedingly precise. Techniques like HDR brachy and SBRT deliver doses with sub-millimeter accuracy. They implant gold fiducial markers in the prostate to make sure that only the target is hit with radiation. They specifically avoid irradiating the hips and thigh bones.
Posted 10/18/2013 12:09 AM (GMT 0)
Tall,

 I made an appt with Dr Demanes thanks for the tip. I want to know what he has to say.

 Im lucky that all these fine doctors are not that far from me.  By the way, have any of you on extended treatments that will last past December figured out how to get it paid for under the new health insurance law?

 

Posted 10/18/2013 12:23 AM (GMT 0)
Welcome aboard Finchrat! Sorry we had to meet like this but glad you found us at this time in your life. When I was told "you have cancer", the next thing my uro told me was from this point on, your life is going to change. Boy was he ever right. We all know what you are going through right now. That is the magic of Healing Well, one guy helping another.

Some of these guys on HW are VERY knowledgable about prostate cancer. Most of what I have learned has been in the past year through my doctors and this web site. I don't hold a candle to some of these guys in knowledge of PCa. The reason for my post is I have never seen a guy on HW with such similar numbers to me as you. You can check below in my signature to compare.

I, in no way, want to talk you into any form of treatment. You need to investigate all options yourself and decide which is best For You! Since we are so closely matched, I just want to tell you what treatment plan I chose, why and what I went through.

Your head must be swimming with all this new found information.

First off, ALL treatments have side effects! You need to find out what they are and what you are willing to live with.

When I was diagnosed, the first thing my wife said was "Get it out!". I told her to slow down and let me think this out. I called both of my sisters the same day I was dx, both are breast cancer survivors. They both said "Get it out". Now I am begining to feel out numbered, as you can imagine. Any way, after about 2 weeks of thinking and reading Dr. Walsh's book, Guide to Surviving Prostate Cancer, which I highly suggest you get, I decided on surgery. There was no Healing Well yet to
influence my decision. I met with my uro and he suggested Dr. Vipul Patel, who has done more da Vinci surgeries than anyone in the world, currently over 6,000! Dr. Patel is located about 180 miles from me so it was a no brainer for me.

As has been mentioned, I needed to wait about 6-8 weeks before having surgery to heal some after the biopsy. I met with Dr. Patel, I really like him a lot, and we scheduled the surgery.

Now I had a large tumor also, Dr. Patel estimated it had been growing in me for about 10 years. The biopsy said I was a Gleason 6 but that was upgraded to GL7 after surgery, which often happens. I had positive margins which means that the cancer was detected right where he cut the prostate out. This indicates that there may still be some cancer left and then again he may have got it all. Also, I had the cancer coming out of the capsule. For all these reasons, that is why some of the guys are suggesting radiation to you. I did not want radiation, I wanted it out!
I don't need the prostate anymore and I especially didn't want a nasty cancerous prostate in me.

Fast forward to now, 15 months later. All my PSA reports are Zero, undetectable, meaning no cancer has been detected. As someone also has mentioned, men with large tumors sometimes take longer to become continent. I still use 2-3 pads a day. I have decided to have no more surgeries to get completely dry. I can tolerate some dribbling. ED issues are still a work in progress but coming along nicely.

I understood the side effects of surgery and accepted them. Getting the cancer out of me was my main goal. We have a saying around here, "dead men don't have sex". I also figured if I didn't have sex again, oh well, at least it was fun while it lasted. Now the orgasms are more intense and they are DRY! Yep, no fuss, no muss.

Again, this is what I did with numbers like you have. You must decide the risk. You must decide the side effects and as I said, all treatments have risk and side effects. Maybe I was lucky, if you can call dribbles at 15 months out luck. Maybe I wasn't and this happens all the time with a Great Surgeon.

If you decide on surgery, get yourself a rock star surgeon! There are about a dozen that we have in the USA. You said you are willing to travel. I will be happy to talk to you more if you would like. My email is live, just click on the envelope by my name to the left of this post.

Good luck with your decision. Read our posts, read Dr. Walsh's book, a new 3rd edition was just released, talk to several doctors to research different treatment plans. Once you make your decision, embrace it and don't look back. Make it your decision, and yours alone.

Regards,
Bill from Florida cool
Posted 10/18/2013 1:01 AM (GMT 0)
bubba,

Please see the links below in my signature. I think they will help you a lot.

-Gedman
Posted 10/18/2013 1:07 AM (GMT 0)
Finchrat,

If you want to, since we're practically neighbors, shoot me an email (click on Tall Allen on the left and my email link will show up).

- Allen
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