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G9/PSA27.16/ T3b N0M0 Possible. Surgery?

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Posted 1/8/2015 10:48 PM (GMT 0)
I'm posting for my dad who's 63 this year. PSA was 7 in 2011 and he did not take it seriously until November this year it raised to 27.16!!! He took a biopsy with 12 cores and all showed positive with Gleason score of 9 (4+5). Terrible news for us. He went to Mayo Clinic in Arizona. CT/Bone scans all negative but Radiation oncologist felt the tumor has been advanced the prostate capsule. He said it was approximately 4cm. The surgeon never gave us a firm recommendation. He just said surgery is possible or radio therapy. Either way my dad needs to have multimodal therapy.

My question is, is surgery still possible and ok to do? I have read mixed opinions on this topic and the out come seems to be the same (with radiation). Anyone who 's in the similar situation? thx so much.
Posted 1/8/2015 11:43 PM (GMT 0)
Pz, welcome! The conventional wisdom appears not to do surgery with those stats. You will hear from RT guys quite soon I expect. I don't give treatment recommendations, rather pass on my experiences. Looking at my signature you will see I had similar numbers that your father has. I went for surgery for a number of different reasons and a number of people would say it was a failure, only because I wasn't "cured". You really have to do your research on G9, it's quite a bit more aggressive than your 6's and 7's. I consider my surgery a success as it produced the results I wanted, bulk of Cancer out. You have choices and many factors to consider and will get a lot of solid advice from knowledgeable members here.
Your Dad is fortunate to have a daughter looking after his intrests!

Cheers, Doug
Posted 1/9/2015 12:27 AM (GMT 0)
Pzhope,

Sorry for the news about your dad...However, you've found a great place for support and information. Don't hesitate to hang around and ask anything and everything prostate cancer related. Welcome.

I agree with Doug. Generally with a gleason 9 and a psa in that range, surgery probably isn't going to be recommended...I chose surgery because my CT, Bone Scan, and pelvis MRI didn't show any indication of cancer. Still..as a gleason 9, it was a gamble.

Surgery comes with lots of possible side effects including incontinence and ED...your dad really needs to understand the risks and side effects of surgery (and radiation for that matter).

Keep us in the loop and we'll try to help out where we can...

Jerry L.
Posted 1/9/2015 12:30 AM (GMT 0)
Hi Doug,

Thanks so much for the reply. I'm glad we can get some 'fellows' here with us to share experiences and learn from. I'm his son btw. :p

One thing confuses me is in Mayo Clinic, one Dr. (a very nice dr) said if it were his dad, he would recommend surgery since CT/Bone scans all turned back negative. However, the main surgeon who will be doing operation on my dad did not give us ANY personal suggestions on surgery. He just said both surgery and radiation would be ok. Surgery will let us know exactly what happens down there and give us insight of what we are dealing with and confirm what's found. But he did not give us the complications my dad is going to have. Another doctor outside of Mayo told me if it were his dad, he would not recommend surgery. I'm all confused right now. My dad just wants to get the cancer out of his body and do the following treatment. I want to do what's best for him instead of rushing into something we are sure of.



Shaba.Doug said...
Pz, welcome! The conventional wisdom appears not to do surgery with those stats. You will hear from RT guys quite soon I expect. I don't give treatment recommendations, rather pass on my experiences. Looking at my signature you will see I had similar numbers that your father has. I went for surgery for a number of different reasons and a number of people would say it was a failure, only because I wasn't "cured". You really have to do your research on G9, it's quite a bit more aggressive than your 6's and 7's. I consider my surgery a success as it produced the results I wanted, bulk of Cancer out. You have choices and many factors to consider and will get a lot of solid advice from knowledgeable members here.
Your Dad is fortunate to have a daughter looking after his intrests!

Cheers, Doug

Posted 1/9/2015 12:53 AM (GMT 0)
Pa, sorry about the gender mix up, I'm neutered!

Anyway, surgery goes against the norm as most people (rightfully so!) are looking for a cure with there primary treatment. I also wanted the source out. I also felt it had spread, turned out I was right. My logic was, do the surgery, get it out and hope for negative margins. My patholgy was pretty good actually as you can see below. I was continent within a week and no problems since. That goes to an experienced surgeon.

My first post op PSA was 1.15 so I was obviously headed for secondary treatment. I expected this and was prepared somewhat for it mentally.

I think you'll find most people here will recommend against surgery with your Dads numbers. I just happen not to agree in my case. We all have our own agendas and circumstances and need to make our own decisions based on due diligence. You may well find your Dad wants one treatment and yourself another, who's right? There is no need to rush into this but time is of the essence with G9's. Hang around we'll have some informative dialogue I'm sure!

Cheers, Doug
Posted 1/9/2015 1:01 AM (GMT 0)
The clinical stage T3b would certainly rule out surgery for me, but I am not your father. The reason is because T3b (seminal vesicle invasion) is highly prognostic that the cancer is outside of the prostate - typically in the tissue surrounding the seminal vesicles. Surgery, which will remove the prostate and seminal vesicles, cannot remove the surrounding tissue. Only radiation can cure the cancer if it has moved there. It is a very bad idea to have surgery knowing it will be followed by radiation because the adverse effects of each are magnified by that. I believe in giving it your best shot the first time.

The only downside of combo radiation treatment first is that, as you say, you won't get a pathology report. I'm not sure why you would need one, since you track progression with PSA and scans no matter what the path report says. Some like to have one for peace of mind, but in your father's case, I think it would only add to his anxiety.

The published outcomes for multi-modal radiation treatment for high-risk patients is actually far better than for surgery, and the associated side effects do not typically include incontinence, and there is a higher probability of retained erectile function.

I think doctors should neither give recommendations nor say what they would recommend to their fathers (remember Oedipus?). Their job is to help you understand the risks and benefits that will enable you to make the decision.

- Allen
Posted 1/9/2015 1:24 AM (GMT 0)
pzhope, welcome, and your dad's lucky to have you interceding for him.

As usual, I can't add much to what our knowledgeable brother Tall Allen has said. Let me welcome you and your dad to the G9 crew, the least popular chapter of the least popular club around! This thread about G9 stuff is meant to help those with this diagnosis converse with others, and to see that there are quite a few here with most doing pretty well.

Here's a link to it:
www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504

All the best!

Jerry
Posted 1/9/2015 1:25 AM (GMT 0)
While not a medical professional, I would be very reluctant of surgery in your father's case. I'm also a G9 (albeit with a lower PSA and much less cancer) that had negative bone scans. After advanced staging, I was given a 50% chance that I would need salvage radiation after surgery--since I didn't want the SEs of both surgery and radiation, I cut to the chase and had radiation as my primary therapy. (In my case, that was the triple play of brachytherapy, external radiation and hormone therapy.) With your Dad's greater volume of cancer and higher PSA, I would think the chance of his needing radiation after surgery would be even more than 50%.

Presumably, you're talking to some good radiation oncologists at the Mayo Clinic...if you're looking for some other resources, we might be able to recommend them as well.

Good luck to your Dad and let us know how we can help!

Note to Doug: When I would mess up mentally I would blame my HT. But your excuse has mine beat!
Posted 1/9/2015 1:29 AM (GMT 0)
Michael, I can blame everything on my "female side now" LOL

Cheers, Doug
Posted 1/9/2015 1:37 AM (GMT 0)
I am t3b but I didn't know it until after surgery. I am also Gleason 9 and wanted it out so chose surgery. I had psa recurrance and then ADT and SRT. Psa is currently undetectable.
How do you know he has seminal vesicles invasion? Sounds like a guess by radiologist. He is a candidate for surgery or radiation. It's up to him.
Bob
Posted 1/9/2015 1:58 AM (GMT 0)
Welcome PZ,
Sorry to hear the advanced diagnosis but you have a lot of options for treatment. Welcome to the forum.
The guys above have given great advice so far. As Redwing mentions, Gleason 9 guys are lucky to have a thread here that I encourage you to review. Surgery vs radiation is a question that has a different answer for each guy. In my case my plan from the start was to debulk with surgery and radiate afterwards because of the advanced nature of my disease. It has proven to be a decent choice so far but is not without several side effects.
Good luck and take care,
Posted 1/9/2015 5:57 PM (GMT 0)
Thanks everyone for all the suggestions and responds. We will meet the Mayo surgeon on Wednesday afternoon. I will update after we discuss further with him.
Posted 1/9/2015 7:18 PM (GMT 0)
Welcome pz.
My husband had a RP with the knowledge that he would more then likely need additional treatments.
However, he really wanted the surgery to get the bulk of the cancer out (I think this was mentally the most important thing for him) and without the surgery, he would never have known that he had a Lymph node involved. It didn't show up on any scans, and we actually feel very blessed knowing exactly what we were dealing with. Turned out it was one <6mm node out of 14. So some studies say that is equal to having none. Who knows?
Don't let anyone scare you off the surgery, if that's what your dad really wants, because of potential side effects ect....hubby was fully continent within hours of the catheter removal, and really has experienced no side effects at all from the surgery or radiation or lupron.(except for the obvious sexual side effects and sleepiness)
That being said, hubby's psa after the surgery at about 10 weeks was 0.03---which is actually a tad early for the test, but he started casodex the next day, so that is the only "real" reading we have before drugs and radiation began.
So at 0.03----it was obviously heading in the right direction...and who knows? Maybe the surgery alone did cure him.
Either way, we honestly feel that the surgery was the best route for him even with the extra treatments. He had a throw everything they have attitude about it.
Here we are, almost exactly 1 year post-op, and currently his psa is <0.008. He is still on lupron, but other then the super expensive shots every 4 months, you would never know what he's been through. :)
Just know that whatever your father chooses, he has a long life ahead of him yet---he just needs to go with his own "gut" feeling.
Keep us posted:)
Posted 1/9/2015 7:39 PM (GMT 0)

pzhope said...


My question is, is surgery still possible and ok to do?

Hello PZ and welcome. Sorry you have to be here but your dad is lucky to have an advocate who has only his best interest at heart. To answer your question -- possible, yes. Advisable, not IMHO. I agree wholeheartedly with what TallAllen wrote and would advise just as he suggested.

The other thing I would personally do with an aggressive cancer diagnosis is to consult with an oncologist who is an expert in prostate cancer. Many people don't take this step until after primary treatment failure but if it was me - or my dad- I would get the best consultation up front to increase the chances of success

Best of luck,

Jim
Posted 1/11/2015 5:12 PM (GMT 0)

Gunner34 said...
Welcome PZ,
Sorry to hear the advanced diagnosis but you have a lot of options for treatment. Welcome to the forum.
The guys above have given great advice so far. As Redwing mentions, Gleason 9 guys are lucky to have a thread here that I encourage you to review. Surgery vs radiation is a question that has a different answer for each guy. In my case my plan from the start was to debulk with surgery and radiate afterwards because of the advanced nature of my disease. It has proven to be a decent choice so far but is not without several side effects.
Good luck and take care,


Hi Gunner,

Thanks for sharing your experience. Do you mind if you could tell me what kind of side effects you have been dealing with? Also did you do the surgery robotically? Thanks in advance.
Posted 1/11/2015 10:56 PM (GMT 0)
I was wondering the same thing about SVI+, based on the clinical staging. Does anyone know if that is definitive with a T3B, or a strong supposition or an edumacated guess. I also agree with Allen, that post op pathology while nice to know is overrated. I also totally understand the need for that in some folks, but that imo is driven by fear rather than knowledge. I also realize some can have as much knowledge as his brain can handle and the fear will still trump it. I went with "get it out", not out of fear but out of ignorance. I did due diligence, but basically from the Walsh book. Joined the forum post op. Its worked out, Im alive, healthy with no regrets. If things change, Oh well

pzhope, any way you could create a signature with stats. The initial post of thread helps, but mo bettah in signature
Posted 1/12/2015 5:38 AM (GMT 0)
Aloha pzhope:
As you can see from the posts so far, many G9's like myself have had surgery and radiation as well as hormone therapy and in some cases early chemo. I certainly do not regret my treatment choices so far. The SE's I experienced were not very serious.

Notwithstanding my own experience, I believe it is not appropriate for anyone here to be telling you that surgery in your father's case is a good idea or a bad idea. I stand four square with Jim (Tudpock18) that the best advice people here can give any newcomer is to get the best possible medical advice from a pca specialist and to get a second opinion from a leading expert. Since you are at Mayo in Arizona, it looks like you are off to a pretty good start on that account. An excellent pca doctor will have so much more information than you can post here on which to make their treatment recommendations.

Welcome and good luck to your father.
Posted 1/12/2015 1:34 PM (GMT 0)
While we wait for Gunner to get back with his side effects I can tell you a bit about mine. I was one of those cases where my risk category changed with the results of my surgery. I was an excellent candidate for surgery going into it (or at least so we thought) and not such a great candidate coming out. I was immediately put on two years of hormone therapy and was given adjuvant (follow-on) radiation a few months after surgery.

The surgery/radiation combination have left me seriously incontinent. I use three to six pads a day depending on how much time I spend on my feet during the day (I leak less while sitting). I am in the process of scheduling additional surgery to get an "artificial urinary sphincter" (AUS) which should make me continent by giving me a control in my scrotum I squeeze to open the cuff around my urethra so I can pee. I am kinda looking forward to getting out of diapers after nearly three years.

I am also impotent and have been since surgery. It is a bit hard to know how much to blame it on the surgery/radiation combo since I have spent most of that time on hormone therapy which also usually causes total ED. Once again I am hoping that additional surgery will get me back in the game. At the same time as I am getting my AUS I will also get a penile implant (another control in my scrotum that allows Mr. Unreliable to be pumped up manually.) I had robotic nerve-sparing surgery (my surgeon described it as "some" nerve sparing "mostly on the left side.") Since it makes sense to do the implant at the same time as the AUS I will never really know if I would have eventually recovered some function when the hormones wore off. (My androgen deprivation officially ended six months ago but it typically takes a year for the effects to wear off after two years of HT and last time I had my testosterone level checked it remained well within the "castrate" level).

All that said, I remain something of a supporter of surgery, even if I am not the sort of poster-child that the makers of the DaVinci robot might have in mind. I often think the Tall one adds just a hint of torque to spin the excellent information he give us. Instead of saying "The published outcomes for multi-modal radiation treatment for high-risk patients is actually far better than for surgery" I might have said "The published outcomes for multi-modal radiation treatment for high-risk patients is actually even better than for surgery."
Posted 1/13/2015 12:36 AM (GMT 0)
PeterDisAbelard:
Thanks for your thoughtful post. I hope you will be able to regain your continence. Thankfully, I was spared that except for a 2 1/2 month recovery period after surgery. I was able to maintain continence throughout the 2 months of IMRT.

"A hint of torque" is a very nice way of putting it. Frankly, I think some of his statements are over-reaching, over emphatic and at times intrusive. For example, when I posted that, 6 month into my HT holiday, my psa was still <.1, he asked me whether I was tracking my testosterone (the inference being that my low psa might be due to continuing castrate levels of t). I never invited that query; my purpose of posting was to provide some good news to our GL9 brothers and to celebrate my own good news. Speaking for myself, I always love to hear positive news from any of our high risk brothers.

Good luck to you for 2015.
Posted 1/13/2015 4:59 AM (GMT 0)
You guys do know that I'm right here, right?

PDA-
When I see results like the ones I posted on this thread, I get excited. Greater than 90% cure rates for high risk disease are now available and happening out there! This compares to only about 50% for surgery. So surgery has 5 times the relative risk of combo therapy. I would call that far better for combo therapy. And yes I know it's not a randomized comparative trial -- we will never have that -- so at least we can conclude that some selected high risk men are doing extraordinarily well with combo treatment. As patient advocates, I think we should all be tooting the horn about that.

Hawaii3654 - Getting down to a low PSA while on hormone therapy is good. Getting it down while your T level is high is even better. And that is exactly the case in your most recent post where you mention that your T level is at 300. So what's the gripe? The nature of a public forum is that anyone, even me, can reply (or be blocked if you so choose.)

- Allen
Posted 1/13/2015 5:12 AM (GMT 0)
Hi Gunner,

Thanks for sharing your experience. Do you mind if you could tell me what kind of side effects you have been dealing with? Also did you do the surgery robotically? Thanks in advance.

PZ - my prostatectamy was an open surgery, not robotic. It was preceded by a year of ADT and several cycles of chemo. The open RP was a 4 1/2 hour surgery that included a wide excision of the bladder, removal of SV's, and 18 lymph nodes. Just before the 4 month anniversary of the surgery I had another 4 hr surgery to remove my Thymus, which is located in the mediastinum (chest area). Then as I was recovering from this 2 nd surgery and only 5 months after the open RP, I received 36 treatments of radiation to my shoulder (original met area) and the prostate bed. The original mets in my pubic and upper thigh bones were also included in the radiation target.
So that is the brief executive summary of my experience which I felt was a necessary disclaimer before I answered your question about side effects. I don't think that there is anything typical about my treatment so far so my side effects may be more than the average guy has experienced but there definitely guys that have experienced far worse than I am dealing with.
My SE list is long but I will try to give you the cliff notes:
My main issue is pain. Pain is what originally drove me to seek medical assistance for months which resulted in my eventual diagnosis. Pain from the surgery - aching in the prostate bed and in my urethra. I am still numb in upper thighs and in my abdomen. I am fortunate to be continent but with ADT and the last year of procedures, ED is a reality but it is so far off my radar to even think about making progress on it.
Radiation has left me with an aching rectum/anus before, during and after bowel movements. Blood and leakage is not uncommon.
Neuropathy, especially in my hands and forearms was probably caused by chemotherapy.
I have several other issues that may be more related to the effects of an accumulation of treatments and procedures. ADT makes sure I am rarely ever comfortable. I am usually too hot or too cold, never "just right". My joints and muscles ache and without testosterone, I am having difficulty building muscle to battle the jiggly fat that is being layered onto my body like a seal.
I hope that this information is not too much to answer your inquiry. I don't like having to deal with any of it - who would? But, I am sure I would do it all again. My treatment has been aggressive and out of the box. But, I know that we are doing everything we can. There are other treatments available and I will be diligent to use them if they are needed.
Finally, you are in good hands at the Mayo. But don't be afraid to ask questions and search elsewhere for answers (and questions) and to continue to be your own advocate. HW is just one of those great resources.
Posted 1/13/2015 7:14 AM (GMT 0)
Tall Allen:
A simple " Great News" would have been better. It should be fairly obvious that I am not looking for more at this stage. Any G9 who posts good news is looking to share that news with other high risk guys and get some simple, positive affirmation. Of course, you can say anything you want. You certainly have a lot to say on pretty much every subject as far as I can tell and, in my opinion, you are sometimes way too definitive in expressing what you have to say. That's just my opinion.
Posted 1/13/2015 7:45 AM (GMT 0)
Hawaii3654:
Just as you think your advice supports me, though it may not be the words I want to hear, I offer whatever support I deem appropriate. I hope we will both continue to do so, and to express our opinions freely and with civility.
- Allen
Posted 1/13/2015 12:28 PM (GMT 0)
Words are an imperfect medium when spoken face to face aided by body language. Written words on a forum, with the implications of life-altering irreversibility we're generally discussing are even less effective. We feel passions both to help and to be helped. One person's helpful intent may seem offensive to another, given the mood one is in at any given moment. My standard excuse is "I blame the Lupron". Generally I try to do a lot of qualifying if I attempt to suggest something to someone; mostly I rely simply on sharing my experience, decisions, and the thought process behind them.

I think it's pretty clear everyone here is really trying to help everyone here. I haven't seen any "forum pests" here that intend to offend. We share our experiences, and sometimes it's with some passion when another person seems headed down (in our opinion) a path we wouldn't choose. No one here can know what another's doctors know, so any experience shared or advice given is just food for thought, worth what we paid for it. No doctors here that I know of.

Let's just consider we're dealing with a very imperfect communication system, and assume positive intent, letting what may seem offensive go. No need for raised hackles.
Posted 1/13/2015 2:44 PM (GMT 0)
Tall One,

You know we all value your advice, don't you? And I share your excitement about the results that we are seeing for the IMRT+HDR combo treatment. It's just when you start doing math with the relative risks of recurrence for radiation at four and five years vs surgery at ten and fifteen years that I point out the apples and oranges problem. I know that the data one would need for a real comparison are hard to find, and quite likely doesn't exist, but I do feel compelled to point out the difficulty you are facing in making the comparison.

Oh, and would you check in on Laila in her new thread? I was quoting your previous advice on second-tier treatments for her dad.
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