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Posted 7/21/2018 4:03 AM (GMT 0)
Ok I’m chiming in .i don’t get it ...if you do surgury.....make sure you have him do a partial lymphectomy where they take out quite a few node sections .then u will know if it’s in the nodes ...this is where it usually spreads first ......then u will know if you need radiation or not ....makes sense to me. ..I’m surprised he said 5 years 70% 10 years 50%.....on what basis ..if it escaped the capsule ..ok...then there should be more than a 5% chance of node involvement ....correct ...if the nodes come back positive ..then you do radiation ......and hope fully nail it there ...did u do decifer testing ..I HIGHLY SUGGEST AND DEMAND THAT UOU DO SO ..please correct me if I’m wrong about anything
Posted 7/21/2018 12:38 PM (GMT 0)
Thanks Stan
the percentages were from the MSK nomogram program. The Uro reviewed them with me and gave me a copy. This was very early on in my journey but post biopsy.

Other tests - primarily the tesla 3 mpMRI showed the suspicion of SVI and ECE and the position of the tumor. No lymph or bone involvement.

I'm meeting with the surgeon on Tuesday next week and will discuss the lympectomy. At this point, he is just reading the mpMRI results when we talked
Posted 7/21/2018 1:00 PM (GMT 0)
My MD Anderson surgeon excised about 42 lymph nodes and one of the 42 had a 1 mm section of carcinoma. If he hadn't have excised so many and found one that was positive, I think I would have had a climbing PSA sometime in the future. So as it was I had the triple play early on in the process.

It is my suspicion that he took out so many nodes based on the MRI (with coil), my 3+4 Gleason and my particular situation when he started digging around.
Posted 7/21/2018 3:18 PM (GMT 0)

John_TX said...
My MD Anderson surgeon excised about 42 lymph nodes and one of the 42 had a 1 mm section of carcinoma. If he hadn't have excised so many and found one that was positive, I think I would have had a climbing PSA sometime in the future. So as it was I had the triple play early on in the process.


As an aside, I had 11 nodes removed and my Urosurgeon proclaimed "negative nodes", so it makes me wonder if he went far enough. OTOH my PSA is now 0.0 so I'm not actually worried about it.

At the time I knew nothing about prostate cancer. I was like, "what's SVI?"... Anyway, so by the time I was ready for adjuvant radiation, I asked my RO if he would be including any lymph nodes, and he just said he wasn't sure. I am assuming that any inflamed nodes would have shown up on the mapping CT (?) But I had been on Lupron for 8 months, and I don't know if that would have masked any hot nodes.

BTW John, I notice you used the term "triple play"... and I've noted that guys here use that term for getting TWO forms of radiation (like both ketchup and mustard on your hot dog) and call it a triple play... whereas for guys like you and me who actually got three different forms of treatment (RP+HT+RT) I tend to use the term "trifecta" so as to not confuse folks.
Posted 7/21/2018 4:44 PM (GMT 0)
Rob: trifecta, in here, also refers to those of us who, after treatment, achieve trifecta: cancer control, no incontinence, no ED. As in WINNER!

Triple play, as I understand it, means some variation of 3 treatments at more or less the same time: such as HT+IMRT+BT or Surgery + HT + EBRT (also sometimes called 'throw the kitchen sink at it')
Posted 7/21/2018 5:37 PM (GMT 0)
Thanks for the clarification in terminology. I like your definition of Trifecta, but will likely never win at that.
Posted 7/21/2018 11:06 PM (GMT 0)
Triple play or Trifecta, I'm just using those terms for surgery, ADT, and radiation. The 'fun' continued for a couple of years in my case.

Three, three, three mints in one (a very old USA TV commercial - I think.)
Posted 7/22/2018 12:07 AM (GMT 0)
KC, It sounds to me that you are moving ahead very fast. The SE's of having surgery and then radiation, possibly with ADT, are as severe and impactful on your quality of life as can be imagined. I watched RobLee go through this, and his posts were painful to read.

Recent studies show that the most effective regimen against the highest risk prostate cancers is IMRT radiation with a boost of brachytherapy (either low or high dose).

https://pcnrv.blogspot.com/2018/03/brachy-boost-therapy-and-surgery-extend.html

And, (Ken, advise me if this is too strong), here is the regretful testimony of a well-known NYC personality who had robotic surgery with the best known (most boastful) prostate cancer surgeon in the USA. It's emotional to watch, but may cause you to reconsider your rush into treatment.

https://www.youtube.com/watch?v=_AiZvd2-ROU&feature=share
Posted 7/22/2018 1:30 AM (GMT 0)

ASAdvocate said...
I watched RobLee go through this, and his posts were painful to read.


Your heart is in the right place, but you're basically coming off as trying to talk KC out of surgery. I'd say he has a lot more going for him than I did. He already knows fairly well the extent of his cancer, where mine appeared to be contained. He seems to have a good medical team behind him, where I had a cranky old doc on the verge of retirement who was unwilling to any more than the absolute minimum for me. It just happened that he DID retire just as my wife and I were selling our house and relocating 1,000 miles away, and within months, my wife was also diagnosed with stage 4 lymphoma, which REALLY complicated things. My whole diagnosis was a fiasco and the treatment a three ring circus... not to say KC's couldn't end up that way, but he seems to be very much on top of this.

Starting off with radiation just wasn't a good fit for me. There was too much going on. I figured the surgery had a decent chance of succeeding, and it did in fact go very well. What followed though was unexpected. That's the breaks. I had been advised of the possibility of salvage radiation, but it was a 50/50 shot. Given what was going on, it was worth a shot. If I had been able to "stop the world" long enough to undergo primary IMRT, I would probably right now be worrying about my nadir or something, rather than enjoying a PSA of zero (which will hopefully stay there after the Lupron wears off).

I appreciate your sentiments, as it HAS been a rough couple of years. But we each got our own cross to bear, our own row to hoe. It's just the way mine shook out, like you've had your repeated biopsies and infections. It hasn't been a typical PCa story for any of us. I firmly believe that KC is making an informed decision, based on his own set of circumstances. Someone else in a similar situation might choose differently, but they are not him. It's his life, literally. Any regrets I may have about what happened to me were sealed even before I was diagnosed.
Posted 7/22/2018 2:03 AM (GMT 0)

RobLee said...

ASAdvocate said...
I watched RobLee go through this, and his posts were painful to read.


Your heart is in the right place, but you're basically coming off as trying to talk KC out of surgery..

Yes, RobLee, I would like KC to slow down and think carefully about what is ahead of him. As you know all too well, the cumulative effects of RP and RT (and ADT) can be devastating. My argument is: if he is going to have surgery, but likely need RT to kill the peripheral cancer, why not just have RT and be done with it?

That first link I cited shows that RT + BBT is the most effective therapy against the worst forms of PCa, so why do surgery as well?

As you know, radiation advocates have counter-arguments against the "no surgery after radiation" and "post-op pathology gives the best picture for future treatment" talking points. No sense repeating those here.

Note: I have somehow managed to join Facebook groups that are adamantly for and against prostate surgery. What I read is that there are many men who did fine with surgery, and some of the anti-surgery advocates, whom I might naturally align with, are "over the top" with their zeal, so I am trying to post here with some balance.

I would ask KC to carefully re-think his options.
Posted 7/22/2018 3:28 AM (GMT 0)
ASA , I don’t think the video is too much, in fact it’s been posted here before, I believe. It does, to me at least, seem very slanted,and the Dr interviewing Sliwa has an axe to grind.

If, seems like you’ve done your work, seeing both an RO and a surgeon. It would seem you might want to see 2-3 RO’s at least one specializing in Brachytherapy and one in SBRT.

But you are 3 months past diagnosis, so just my opinion, I don’t think you are rushing things. If you haven’t seen an RO that specializes in SBRT Radiation, I think it would be worth doing.

But with all that said, if you’ve decided that surgery is the right path for you, then good on you, and I’m sure we’d all support that decision as the right one for you.
Posted 7/22/2018 5:03 AM (GMT 0)

Pratoman said...
If you haven’t seen an RO that specializes in SBRT Radiation, I think it would be worth doing.

FWIW, and I've mentioned this before, I was told by an RO who did Cyberknife that in my case, I was not a good candidate for Cyberknife. I later asked here if that is the same thing as SBRT, and I'm still not sure of the exact difference (please no need to explain it again, at least not to me anyone).

Just saying that for some people, radiation may not be a good fit. Brachy (seeds) just seemed to me to be weird. Note that my father performed many seed implants. It's not a Daddy issue thing, I just didn't like the idea of it, and the time required for it did not fit our commitments. And I had never heard of HDR at the time.

And now when I read of some of the problems some guys have after primary RT I suspect I might have had too many urinary issues beforehand to be satisfied with the possible SE's of primary RT. I believe I did the right thing. And other guys here who started with surgery, had HT and went on to RT are also content with their decisions.

Some, a few, have expressed regret. It is sad to read their posts. I can taste their bitterness. They do not need to spread it to those trying to decide. Fortunately, none in this or other recent threads are so remorseful. Everyone here has presented good arguments why the OP should seriously consider primary RT. As I stated earlier, it just becomes crowd noise. You guys have made your points, politely. But it is, again, his decision.
Posted 7/22/2018 12:25 PM (GMT 0)
Thanks to everyone for their thoughts and suggestions - I greatly appreciate the information being provided by all of you who've been through different phases of the disease and learning of your outcomes, emotions and decisions.

I read through Pratoman's journey as well. I too, cried for a short time one evening when I was feeling overwhelmed by it all. I had never been sick outside of chicken pox as a child and having hernia surgery in 2017. And like Prato, I've felt anxious at many different points over the last several months.

But thanks to this forum, I have decided to do a follow up with the surgeon and RO with questions that I've come up with. The Dr team is very experienced both from a RO, surgical and diagnostic perspective. All along, I've been told that the ultimate decision is my own and my family's and the medical team will do everything to make whichever choice I have made work as best as possible. My wife has been terrific with doing a lot of legwork at her hospital, the support has been tremendous. But as many of you know, there still is a bit of fear that lurks within us all. I'm learning to deal with that and march forward.
Posted 7/22/2018 1:05 PM (GMT 0)
KC, just to note, my MPMRI also showed a bump and a possibility of capsule invasion. The surgeon warned me there was a 50% chance that I needed radiation. However, after RP, there was no sign of it and pathology confirmed no capsule invasion. Just to let you know that these MPMRIs are not particularly precise.
Posted 7/22/2018 1:27 PM (GMT 0)

ASAdvocate said...
KC, It sounds to me that you are moving ahead very fast....
Recent studies show that the most effective regimen against the highest risk prostate cancers is IMRT radiation with a boost of brachytherapy (either low or high dose).

https://pcnrv.blogspot.com/2018/03/brachy-boost-therapy-and-surgery-extend.html

AS, I don't want to cause controversy in KC's thread but this link to TA's blog refers to G9 and G10 cancers. You cannot extrapolate that if a therapy is best for the highest risk cancers that it is appropriate for KC, who may have intermediate risk.

Basing a decision on a MRI, which may be imprecise is a difficult judgement call. It's possible that if KC has surgery, there is no EPE or SVI and that's all he needs; and like most surgeries, the main long-term SE is ED, while for RT, there are, albeit lower, risks of rectal SE and urinary obstruction. That has been highlighted by some RT posters recently.

For the record, I think that KC would be do fine with SBRT or HDR BT as well and that his risk of SEs might be lower. However, I don't think it is fair to come out completely anti-surgery without also highlighting potential but lower SE risks with RT. This is an emotional issue for many because it deals with the path they have chosen and the need to confirm that it is the right one as we all hope for the longest life. Peace.
Posted 7/22/2018 4:13 PM (GMT 0)
Hi WeightLoss

thanks for sharing your experiences. I did have a Tesla 3 mpMRI results read by the radiologist who does all of the prostate reviews. In fact, I only made it through the 1st MRI halfway and found out that I'm claustrophobic. My RN wife called the radiologist and he confirmed that he could see something but that I would have to repeat the entire test to do with/without contrast. He suspects ECE and SVI on my left side where the bulge is (same side as was found on the TRUS biopsy).

I'm mostly a 3 with a little bit of 4 in 2 positive cores from my biopsy results, so as you mention, not extremely high risk G scores. I did notice that my Uro and the RO both notated separately that I'm not a candidate for AS in their notes.
Posted 7/22/2018 4:51 PM (GMT 0)
Can someone answer these questions....there is biochemical failure which no one can predict ...they say 20% chance either way RT or RP....how does this occur ....is this pni invasion ....it sneaks out thru there somehow ...or thru nodes ......then there is distant mastisas ...is this the same as biochemical failure .....all these could show up later on or never show up again ...my question is do these things happen because of node involvement ...also does the tumor hsve to penetrate the capsule to get into the nodes........see to me they look at the path report they say no node involvement ...mri sonogram looks contained .....so if it seems that it has escaped thru mri findings ..rt to the nodes and the hdr boost maybe right ... here is another thing ...let’s say one does RT and Boost ....you won’t know if there is any node involvement u r hoping not ....I have heard oh guys having surgery Gleason 6 that had lymph dissection and had found some cancer in the node ...if they did RT they would have had a reoccurance later ...I don’t know why during surgery they don’t always take lymph samples ..they should ..or do they ..my surgeon said they don’t always do
Posted 7/22/2018 6:03 PM (GMT 0)
Stan, taking lymph nodes during surgery is a judgment call on the part of the surgeon. Since I'm not one (and I don't play one on TV either), I suspect it has to do with the apparent tumor locations, the severity of the cancer, and other factors.
Posted 7/22/2018 6:37 PM (GMT 0)
sorry same post as before

Post Edited (Stan1961) : 7/22/2018 12:45:03 PM (GMT-6)

Posted 7/22/2018 8:05 PM (GMT 0)

KC342 said...
Hi WeightLoss

thanks for sharing your experiences. I did have a Tesla 3 mpMRI results read by the radiologist who does all of the prostate reviews. In fact, I only made it through the 1st MRI halfway and found out that I'm claustrophobic. My RN wife called the radiologist and he confirmed that he could see something but that I would have to repeat the entire test to do with/without contrast. He suspects ECE and SVI on my left side where the bulge is (same side as was found on the TRUS biopsy).

I'm mostly a 3 with a little bit of 4 in 2 positive cores from my biopsy results, so as you mention, not extremely high risk G scores. I did notice that my Uro and the RO both notated separately that I'm not a candidate for AS in their notes.

KC, If you are having another MRI, here is what radiologists look for EPE and SVI

Multiple criteria are used to detect extracapsular extension of prostate cancer. They include:

an irregular bulge in capsule
obliteration of the rectoprostatic angle
asymmetry of the neurovascular bundle
angulation/step-off appearance to the tumour
focal capsular retraction and or thickening
broad capsular tumour contact (>10 mm)
breach of the capsule with evidence of direct tumour extension
These criteria can be used both in high-resolution transrectal ultrasound / MRI.

MRI is superior to transrectal ultrasound, CT, and digital rectal examination in detecting extracapsular extension as well as seminal vesicular invasion in prostate cancer.

Criteria for seminal vesicular extension include:

direct tumour extension into and around the seminal vesicles
tumour extension along the ejaculatory ducts, resulting in enlarged T2 hypointense seminal vesicles and ejaculatory ducts
obliteration of vesicoprostatic angle

I'm sure the radiologist will look for these but it may be a good discussion point with your doctor before the MRI.
Posted 7/22/2018 10:40 PM (GMT 0)
Perfect, thanks WeightLoss
I updated by sig line with a bit more from the MRI
Posted 7/23/2018 3:21 AM (GMT 0)
Do the surgery..trust me ...this radiation to the pelvis is no joke ...I’m ready to stop ...save it only do it if you hsve to .....with surgery at least you will know if it’s in the nodes...u do the combo radiation ..first they will do your nodes ..then u will hsve HDR once or twice and oh yea HT as well.... take it out and hope it’s all good
Posted 7/23/2018 11:35 PM (GMT 0)
Thanks for all of your wisdom through this thread!

I did postpone my surgery *tentative* to the Weds after Labor Day to explore more options. Part of the issue with me is that everything is super close to where I work (original Uro is across the street) and appointments were set up for me, like one after the other.

Here are the questions I'm asking the surgeon

1) Based on the mpMRI readings, will there be a pathologist in OR (suspected ECE and SVI on left side)
2) Do you expect to take some lymph nodes out even though mpMRI showed no LN involvement? If not, why not?
3) What are the side effects of removing one of the nerves as we discussed as a possibility due to the bulge?
4) Is the Prolaris test point to anything of concern?
Posted 7/24/2018 1:17 PM (GMT 0)

KC342 said...
I did postpone my surgery *tentative* to the Weds after Labor Day to explore more options. Here are the questions I'm asking the surgeon...

I'm going to throw out some answers, based on my own experiences, and which I think would likely be what would happen if you don't even ask.

KC342 said...
1) Based on the mpMRI readings, will there be a pathologist in OR (suspected ECE and SVI on left side)

Probably no. AFAIK few surgeons keep a pathologist in the OR. My RP was the last day of August and I had the results the day after Labor Day (good luck with your new schedule BTW) I did indeed have bilateral SVI.

KC342 said...
2) Do you expect to take some lymph nodes out even though mpMRI showed no LN involvement? If not, why not?

Probably yes. Most do. It's rare that they do not. What does vary is the number removed. Some guys report three. Others thirty. Mine took eleven. I'm guessing it's a judgement call once the surgeon gets in there.

KC342 said...
3) What are the side effects of removing one of the nerves as we discussed as a possibility due to the bulge?

Probably a longer recovery to regain continence and likely also ED. My surgeon later told me that he "had to remove a lot of tissue". When questioned beforehand about nerve sparing, my wife and I had told him that eliminating the cancer was the primary focus.

KC342 said...
4) Is the Prolaris test point to anything of concern?

Personally I can't answer that. The only tests I was given were right out of the book...PSA's, MRI, biopsy, bone scan. No one ever mentioned any additional testing. Would it have made any difference? Perhaps to my wallet, but I was never asked.

KC342 said...
Part of the issue with me is that everything is super close to where I work (original Uro is across the street) and appointments were set up for me, like one after the other.

Convenience is an important factor in your treatment plan. Some guys fly to another city and stay in a motel or lodge for weeks. When we moved to Florida following RP I had to choose a new Urologist and RO and went with the guys nearby. RT was right around the corner... good, because I was there every day. Treatment may have differed if I had chosen to drive two hours every day to a "center of excellence". But everythign worked out okay. One never knows beforehand. Good luck to you!
Posted 7/24/2018 10:17 PM (GMT 0)
Thanks for the feedback Rob

I did leave a message with the office this morning with the first 3 questions. The nurse didn't think that pathologist would be in the OR but wasn't positive - she works in the outpatient office. Didn't want to speculate on the 2nd two questions...

I'm thinking about going into NYC - I'm 40 miles west to get another opinion on the surgery at MSK or Columbia Pres. Current surgeon did his residency at Columbia and UPENN. The original Uro is Cornell / Harvard Medical School but for some reason, something doesn't feel right. Just a gut feeling.

Did a little poking around about the nerves and see that american cancer society discusses ED for the nerves and not so much about UI
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