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Hello just diagnosed and very frightened

Steve1961
Posts: 250
Joined: Dec 2017

I was just diagnosed Thursday by my urologist . PSA 7.8 ..had 5.5 for many years with 3 biopsy’s and were all good. This last one not sooo good.2 out of 12 showed some cancer .thsts all I know until I see the specialist next Thursday.thoughmy urologist did give me encouragement saying we caught it very early whatever that means...don’t know what to ask the specialist on Thursday I guess my biggest fear is if it has spread or not ..any input would be muchhhhhhh apppreciated ..thanks in advance ..how I am 56 years old 

Steve1961
Posts: 250
Joined: Dec 2017

so I was going over the UCSF pathology report and now it seems like there is pereniel invasion I the number 8 core where as  the original report there was not. Wow the dr at UCSF didn’t mention this . This makes everything way more serious now much greater risk with radiat ion and surgery but what gets me is that the dr didn’t mention this all he talked about was tge high risk because of the genomic report . This gives me a40 % chance if reoccurrence after surgery hell the things I’m reading is saying I should consider no nerve sparing I think I need some answers fromthis dr.  Any suggestions 

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi Steve,

This is an excerpt from the American Cancer Society webpage" When this is found(PNI) 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."   so check with your urologist & radiologist and see what they have to say about your course of action. Just make sure you get the best doctors working on your case, second opinions even with a second hospital/doctors does not hurt. Perineural Invasion is not a death sentence but a call for more study and consultation with your doctors. 

The info I quoted above comes from this article. https://www.cancer.org/   Do a search on the ACS website by clicking the magnifying glass at the top of the page and typing  Understanding Your Pathology Report: Prostate Cancer.

Dave 3+4

Old Salt
Posts: 720
Joined: Aug 2014

But I would be inclined to discuss this issue (perineural invasion) with a rad oncologist to see if some form of radiation therapy might be preferable.

Steve1961
Posts: 250
Joined: Dec 2017

surgeon doesnt seem too concerned the the invasion findings...I am getting a copy of Stanford’s to see if they agree with the core 6 invasion ..UCSF dr says it correlates with gleason 4 and if it’s on the bottom near any nerve bundles it’s seem like an invasion is UCSF dr is more concerned that it is high risk and of cribiform...problem is I have to email questions now because getting a damn app with dr takes weeks ..UCSF surgeon says that with a high risk cancer he prefers to act fast take it out and hope fully go fir the cure ..he also suggested radiation bit both internal and external..he is also sayin* that 8 to 10 years out that either way the outcome of no reoccurance would be the same ...hmmmm..so many questions  UCSF dr said he is treating 2 men with reoccurance 10-13 years out ..and its back in the prostrate both 3-3 and they are just watching ..so what if the cancer comes back after 7 years and u have no prostarte then What does it end up in your lymph nodes that can’t be good I’d rather have it back in the prostrate  any thoughts 

Steve1961
Posts: 250
Joined: Dec 2017

thanks too all for your input but it’s time to, decided...it’s been almost 5 months since dianosed ...I have seen them all ..supposedly the best of the best ...there was a reason I waited for this last dr...I could have said screw it and gone with one of the others bit I didn’t ..thank god because I was leaning brachytherapy and in the long run I would have been screwed. and probably had reoccurance because of the high risk cancer....probably why a lot people have reoccurance  because they don’t know the extent of the cancer just going by PSA and Gleason which you can’t ....3 months ago it was no problem .I was ok I was going to be fine no hurry  no problems    And this dr at UCSF wanted genomic decifer testing and for a good reason and then bammmmm...at this point right now there is a 46% the cancer is worse ...could be 4-3 or 4-4   5 year mastasis if not treated 38 % and 10 mortality 17%. Dors not seem high but it is.. ALL DRs should have this done alllllll.if this was done months ago my decision and treatment would have been done...so what do I do internal and external radiation ....or yank it ...we will listen to the 4 drs consultations again because I recorded them ..will add input from my friends here and from my studying and we will make a logical family decison  and we won’t look back ...will keep u all informed ..I believe the lord made me wait for a reason and I believe the lord will take care of me as well..

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

Steve, I ,like you, took about 6 months to make a decision.  My Gleason was a 4+3=7.  I am 67.  In my opinion, no two of these cancers are alike.  Tomorrow will be my 5th week post op.  I go to see my doctor for my first follow-up.  My prostate was removed; bladder neck reconstruction; 8 pelvic lymph nodes removed.  Sometimes no decision, when it comes to cancer, is a decision in itself.  If you opt for the surgery, it was not a cake walk, but in my case neither were the other options.  I posted the entire procedure and post op pathology on this site.  I wish you and your family well in this journey.

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RobLee
Posts: 259
Joined: Feb 2017

Steve, I can't tell you what to do or even advise you. You've had the luxury of time to make this decision. In my case I had to get things going quickly.  We were selling our house and moving to Florida, a thousand miles away. Contracts had been signed and winter was coming.  I knew nothing about prostate cancer and didn't have much time to do research.  Starting with my biopsy in early July and through our final move in late October, a thousand little things had to be dealt with.  I even drove a U-haul 15ft truck to Florida and flew back home just days before the surgery.  The RP itself was the easiest part of the whole process. Everything went as planned, except that there was more cancer in there than the MRI had revealed, and I would still need radiation.

That's when things got a lot more complicated. I'll spare you the details. You've probably seen my sig on a couple other PCa forums; they tell the story briefly.  Anyway, you need to be aware that all radiation is administered relying on scans, and scans don't always tell the whole story.  Also, going with primary radiation leaves your prostate intact.  If you have any existing prostate problems, such as difficulty urinating such as I did, those problems will still be with you. And as I've mentioned elsewhere, I now have radiation colitis or pelvic radiation disease.  You don't hear of that very often.  I am not trying to sway you one way or the other, but just letting you know that whichever way you go there will be a posibility of side effects.

Steve1961
Posts: 250
Joined: Dec 2017

I’m sooo messed up over this now ..the genomic report says my cancer is high risk...it’s saying that right now I have a 45/% chsnce that the cancer is worse than at time of biopsy .my dr doesn’t like how the Gleason 4 is cribform doesn’t like it a bit ..he suggests surgury bit also says I will get same results with Brachytherapy and 25 EBR ..but drs at both Stanford and UCSF radiology don’t recognize the defer genomic testing ..where as my surgeon does and he supposed to be the best..**** even he says that I would do good with radiation but everywhere I read brachytherapy and radiation is for low intermediate risk onlyyyyyy..and they go by Gleason Score only ..I don’t want to make a mistake. ..damn go fir the brachytherapy and hsve it come bpack in 5 years because the cancer actually is high risk ..hsve surgery to find out it leaked and have to have radiating n as well ..**** 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Steve, I have not followed your case in detail but will make a general comment regarding your April 26 post.

It is true that brachytherapy is regarded as a tool mostly for low to moderate risk PCas. You do not specify then what you mean by "radiation," but IMRT/IGRT is the usual and probably best choice first-line for more aggressive disease.  IMRT or IGRT need not ever necessarily be combined with brach, and usually isn't.

Surgery can be a best choice for PCa that is reasonably believed to be contained within the gland, but it a less ideal choice for disease that has exited the gland.  But determing if there is likely escape requires a lot of test data and expertise, since imaging for PCa is not the best, regardless of the technology employed.

max

 

Steve1961
Posts: 250
Joined: Dec 2017

ok everyone does seem to,still think this is still contained ...mri bone scan sonogram  PSA still low 8.0 just the decipher report is saying that it is a high risk tumor...at first they wanted to do 2 treatments of hi dose radiation Brachytherapy in one day and that was it ...now finding out that  it is of high risk they want to. be more conventional and 25 treatments external combined with 1 hi dose brachytherapy...or surgeon suggests removal get it out and go for a cure ....but surgeon also said I could do the radiation and the long term outcome would be the same .....so what the heck do I do ...confusing ..this is all UCSF by the way ...i can’t just dismiss the decifer results because not everyone  recognizes it ...Stanford doesn’t they dint even care about what decifer found ...also UCSF found PNI invasion in core 6 which Stanford and the original didn’t ... so I hope that everyone can see why I confuse as hell now....do I go radiation knowing the cancer is high risk when high risk usually isn’t an option for Brachy or do I take it out and hope there was no pni and it didn’t escape ....let’s not forget it’s been 5 months since biopsy so it could be worse now ..but last PSA was a month ago and it dropped a bit that’s good I guess 

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RobLee
Posts: 259
Joined: Feb 2017

Steve, I don't know anything about cribiform or decypher. It seems they are just clouding the waters. And PNI is very common. The nerve pathways are usually the early route that cancer cell invade trying to escape the prostate. What is most important is your PSA and the Gleason, percentage and number of cores.  I had four cores with 40-100% G8(4+4) with a PSA of 25.  Much of that made me ineligible for some forms of radiation, so I had even fewer choices. Plus the time crunch I mentioned earlier. And I felt uncomfortable with the accuracy of scans guding where the radiation would go.

As it turned out the MRI wasn't totally accurate anyway.  My urologist (or the radiologist reading the MRI) said my largest tumor was close to the capsule wall, but once he removed my prostate it turned out that the tumor had actually spread outside the prostate in three places and had invaded both seminal vesicles and the bladder neck.  He said that he had to cut away a lot of tissue but I was left with negative margins and negative nodes.  My last two PSA's have been 0.00.  I don't believe that any radiation oncologist would have ebeen able to match that.

I am still 100% confident that I made the right choice initially. I had done zero research and went only on answers to my questions and on hunches only. FWIW my urologist insisted that I speak with a RO before he would operate on me.  Things that happened before and after the surgery certainly could have gone better, but the surgery itself went like clockwork.  Some may say, yeah, but you still had cancer after the surgery and it left you incontinent.  But on the oter hand, I knew EXACTLY what was going on in there. No guesswork, no "scans indicate" and no wondering anything was missed.  Could my cancer return someday?  Quite possibly, but it would have to be due to micromets that had already entered my bloodstream before the surgery, and radiation would have missed that too.

So I consider myself fortunate that I did not have time to hem and haw and sweat over too many options.  I had to make a quick decision and just go with it.

Steve1961
Posts: 250
Joined: Dec 2017

The Steven - I tired both numbers, no answer. I will try and address your questions.

 

1. Perineural invasion correlates with cancer grade and offers very little independent information. However, the "cribiform" histology which we talked about seems to correlate with risk (worse).

2. Although genomics and the histology suggest higher risk cancer, they are not perfect markers. Also your cancer appears confined (good)

3. Radiation is another option and if you feelmore comfortable with that approach and fully understands risks/benefits, I am fine with that decision. Based on the genomics and histology many would treat this with certain types/combinations of radiation. You should discuss this with an experienced radiation oncologist

4. Hopefully with surgery you would not need any additional treatment. 

5. We generally do more surgery in younger patients with your type of cancer given some concerns about the long term durability of radiation and late side effects. However, as I mentioned, there is no preferred treatment. You can decide on either one.

 

 

Steve1961
Posts: 250
Joined: Dec 2017

core 3     length of tumor 6mm total length 8mm. Invovment 75% % of glesson 4 approx 10% no pni found no extraprostratic tumor found 

core 6 length of tumor 8 mm total length 9 mm % of involvement 89% % of gleason 4 approx 10%  pni is seen no extra post tumor present 

they don’t even mention the third core that has 3-3 I need to find the original report to see what core that was

this was 5 months ago ....hope fully it hasn’t changed much..but the surgeon at UCSF seems to think that it is worse according to decipher now how much who knows .wven thinks after surgury could end up 4-4 ... just want to make the right decision sooooooon .

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi Steve,

Good advice from Max and Dr. Carroll.  As I have always said both radiation in various forms and surgery all  have side effects.  You need to study them all before you decide as they might effect you for the rest of your life.  I know when I have big decisions to make I sometimes suffer from Paralysis by Analysis, you study and research and still can't make up your mind.  So much data and info that it can cloud everything. My general thought process was that if it was contained I would do surgery but if it was not radiation was the alternative.  I chose surgery and at my last 6mo. checkup after 3 yrs. my PSA was undetectable. I wanted to do this because if I did radaiton I would alway wonder if the cancer was gone, with surgery I hope it's all gone, only time will tell.  But radiation in my mind can cause problems years later that I did not want to take on at this point.  If I have to do radiation later I will cross that path, but for now I will never have any side effects from radiation.  But I do have a very slight leakage from the surgery, but I am OK with that.  So a little insight into how my brain worked when I had to decise on a treament plan.  Good experienced doctors and great facilites can make a world of difference on your outcome.

Like Vasco said grab your significant other and take a short weekend away to see if you can come to a decision.  From what I have read of your case it sounds like you have both options(radiation or surgery) available.  Good luck on your choice.

Dave 3+4

Steve1961
Posts: 250
Joined: Dec 2017

looking at surgury whole family coming over this weekend to decide ..the cribifirm thing that bothers me....I have read about it it’s not good it says any grade 3 that’s cribifirm should be graded as 4 so I am looking st it as 4-4 and 4-4  and hoping I’m wrong and that means to meM that I am not a candidate for brachytherapy even though they say i am ...if it leaks it leaks whether I do rad or surgery.and If I need rad then at least I don’t have all that already in me ...man this is screwed 

Steve1961
Posts: 250
Joined: Dec 2017

sometimes I wonder if nit knowing certain things is better ,, 

Steve1961
Posts: 250
Joined: Dec 2017

I dint know how relevant the decifer test is ..but we will find out ....I guess my insurance is paying for it since UCSF ordered it ....I wish I would have ordered it myself or demanded it get done ..who knows maybe these last 4 months could have meant the matter of living 5 or 10years more i hope it all turns out good....any new people on the forum should be told about this testing and what is going on with me one can’t just go by Gleason Score anymore it’s just not that accurate ...

lighterwood67's picture
lighterwood67
Posts: 219
Joined: Feb 2018

Decipher is a transformative genomic test that informs decisions about the course of treatment for men after prostate surgery.

The Decipher test predicts the probability of metastasis after surgery and provides an independent assessment of tumor aggressiveness; information distinct from that provided by Gleason score or PSA. 

Decipher has been validated in over 2,000 patients in clinical studies with key US cancer centers and centers of excellence.

Steve1961
Posts: 250
Joined: Dec 2017

I believe it I’m just upset that 2 drs dismissed it and said it wasn’t needed ,when I asked if we should do it ...drs at stanford number 8 in the country .....like I said hopefully all will be ok ....then again you better have a gooD pathologist as well ..Stanford see no cribform or pni where as UCSF does .it took the 4th dr at UCSF to Oder genomic and to have UCSF look at he slides  ...the first dr cyber knife guy at UCSf told me UCSF didn’t need to look it over they work with stanfird and trust them what a crock of **** 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Remember that the final decision is up to you, and you alone, since you will have to live with any side effects from treatment....you may wish to listen to others, however YOU are the one that has to make a decision. As Truman said, "the buck stops here".

RN4Answer
Posts: 8
Joined: Apr 2018

Would appreciate it if you can please share your thoughts.

I was diagonsed with prostate cancer back in 2002. Gleason was 3+3. Had Radical Prostatectomy in 2002. PSA has been Zero until last week (15years). Results from last week showed 3ng/ml PSA which came as a complete shock. Anyone knows what is happening? Could it be an error?

 

Thank you very much

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Please start a new thread that can be devoted to your situation

click discussion board upper left corner above; then, click "add new forum topic" found under discussion boards (upper left corner 

Best

Grinder
Posts: 442
Joined: Mar 2017

"Could my cancer return someday?  Quite possibly, but it would have to be due to micromets that had already entered my bloodstream before the surgery, and radiation would have missed that too."

 I take a bit of comfort from that, RobLee, oddly enough.

Since my PSA has been undectectable, any thing that shows up in the future is most likely escaped micromets that would have gone untreated no matter what form of treatment I chose at the time. 

Thank you for pointing that out. It's another reassurance that I made the best decision possible for my circumstance.

Steve1961
Posts: 250
Joined: Dec 2017

A lot of you are very sharp about PC .li always mean to,ask the dr and seem to forget ..anyone know what is considered a small medium or large tumor in the prostrate .i have looked bit can’t seems to find anything ..like for instance is a 7 mm. Tumor  considered small or large just wondering because it does seem to make a difference what size the tumor is 

MK1965
Posts: 179
Joined: Jun 2016

From what I know, anything below 5 mm is considered small.

MK

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

RN4answer,

Please start a new thread, and I will give you my PC "history": 27 years of recurrances and treatments. Still going at age 92.                      

Best wishes to you.

Old-timer (Jerry)

Steve1961
Posts: 250
Joined: Dec 2017

can one have RP after radiation treatment ,,,answer is YES at UCSF they do ..BUTTT according to dr  carroll they don’t go right to surgury ..stato have shown the reoccurance of pc after radiation usually show up back in the Prostate and usually very small. And can be watched or can have a number of other treatment as well such as active survailance cyo therapy focal and more,....and incontinance and ed are much  more higher risk ....

Steve1961
Posts: 250
Joined: Dec 2017

is a site or dors Anyone know what % of RPs down over the last 10 years Have been unsuccessful..I flat out just asked my dr out of the 4000 he has done being both open and RP what % of them have failed .....hope I will get and honest answer 

Grinder
Posts: 442
Joined: Mar 2017

You are opening quite the can of worms on this site, Steve. Everyone here can come up with stats to support their own perspective. I quoted AARP stats recently simply because they are not in the business of prostate treatments so they don't have a bias toward a particilar treatment. Currently, and unfortunately, bias in favor of a particular treatment is causing skewed data, hidden variables, and prejudiced outcomes.

I assume that by "successful", you mean minimal side effects. 

I could post those stats, and point out the relevant variables in other research posted here... but then I will be regarded as a hate monger and a scoundrel, so why bother? 

As for your own surgeon there is a site that has been listing side effect occurrence rates for individual doctors and hospitals... I will look it up momentarily.

Steve1961
Posts: 250
Joined: Dec 2017

I mean no reoccurance 

Grinder
Posts: 442
Joined: Mar 2017

Here is one site that rates surgeons and hospitals...

https://www.checkbook.org/surgeonratings/

You can click on Prostatectomy, but it may not make a distinction between open, laparoscopic, and robotic laparoscopic prostatectomy.

I used Surgeons Scorecard, but it has not been updated since 2015...

https://projects.propublica.org/surgeons/

Steve1961
Posts: 250
Joined: Dec 2017

either brachytherapy and 25 EBR or yank it ..can’t believe it’s this tough ..one surgeon straight up talked me out of it ...another said I should look into radition , ,the third said surgury is the only way period I’m not a candidate fir radition it won’t work ..the fourth surgeon recommended surgry but went on to explain radition and what I should do if I chose it and then said he would be ok with either .and there was no preferred method .....i really wanted this last surgeon to no you shouldn’t do it or yes you should because in the long run talking 15 to 20 surgury has better stats fir no reoccurance..but he didn’t ...so it’s up to me .....and it’s tough ...

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi Steve,

Yes it has to be your decison and only yours.  The people on this board can only provide you with reference material plus our own experiences but in the end it's up to you.  In my opinion surgery or radiation will provide good results and hopefully a long lasting cancer free life.  No guarantee's in anything we do in life, just have to go with the best  researched choice and hope for the best.  With possible PNI as you stated in one of your earlier posts I would not wait too long to make a decision.  Don't want the cancer to escape, that can get pretty bad.  As to your question about urine flow after surgery, after they took my catheter out I could piss like a fifteen year old again.  Very good flow, what a feeling.

Let us know how it turned out, hopefully we will be hearing from you for many years to come.

Dave 3+4

Grinder
Posts: 442
Joined: Mar 2017

How is your spiritual life, Steve?

If you are "in Christ" I can give you this comfort in making your decision...

"And we know that all things work together for good to them that love God, to them who are the called according to his purpose." ...Romans 8

So whatever decision you make, God can make even what seems a disaster into something good. Ask anyone here with thecsame experience, I have seen it happen many times. Life often sucks, but sometimes something good comes out of nowhere to make it worth all the pain. I dont mean parting of the Red Sea type miracles, or televangelist faith healings... but something "good" that makes life a fascinating journey again.

If you are a Buddhist, you need to separate your emotions from your decision making. Its hard to do, but it takes mental discipline to focus on your objectives and find that path that best gets you to those objectives.

And, whatever religion you do, you can always pray.  I am guessing that is pretty obvious, but we dont always think about it in times of crisis. Even something simple like "God, I have no idea what  path to take here, please help me make the best decision, and help me live with the consequences, in Jesus' name" or something like that , depending what faith yiu follow.

Now I'm going to say something crazy here so fasten your seat belts... You may want to check into the "moral impetus" of your surgeon/ radiologist. I was also dealing with several doctors and opinions... I finally settled on advice from the guy I thought was most in line with my moral impetus. By that I mean, what moral standard governs his behavior? If you run the gamut between Mother Teresa and a used car salesman, you would probably trust Mother Teresa to give you advice thats best for you, but the used car salesman is giving you advice best for his own sales volume and the opportunity to regale his buddies about the schmuck he just sold a lemon to. 

Personally, I would not see a urologist that attended the First Church of Satan. Or a radiologist that attended  the Temple of the Holy Ganja Weed.  That's my opinion anyway... you can draw your own conclusions.

Steve1961
Posts: 250
Joined: Dec 2017

yes I pray a lot ,but since only 15% of men are high risk I am not feeling to lucky ..the longer I wait the more Chance it can leak out ..god has made me wait to see this last dr for s reason ...to get this test ..I think god knew I was meaning towards radiation ..without this test I would hsve had inferior treatment ..but maybe now he is telling me not to wait ad well ...rsdition treatment st UCSF won’t be until June 25th can u believe that Stanford said they can start may 16 but their way of doing it is different .i hsve surgury scheduled for may 30..I know waiting another month for radiation doesn’t seem long but I was diagnosed 5 months ago ....that to me is a long time ...I went fir PSA test yesterday ..I whstever my PSA is st will help us decide ..also if I do surgury and it retirns after 4 or 5 years I could do salvage radition but if I have radiation now I don’t think I condo it again in 4 years ,then what hormone pills the rest of my life ..wow that wouldn’t be good ,maybe I an panicking but I need to think about all these outcomes ..thanks everyone 

Steve1961
Posts: 250
Joined: Dec 2017

I just had a PSA test yesterday results in...I have gone from starting in October from 8.6 to 8.1 7.7 and to 7.0 ....hope fully this beast is just taking a siesta while I make my decision how to chop off his ugly head ....I mean it dropping can’t be a bad thing ....thanks everyone ... should be receiving phone calls from surgeon at Stanford today ...many questions ..like one radiol told me hold their feet to the fire and demand answers ..which I am doing thanks to all you wonderful people and your wisdom and encouragement....hope I am not feeling like a hypochondriac to any one ....they are alL practicing medicine I don’t want  to be one of their bad statistics .

Grinder
Posts: 442
Joined: Mar 2017

We all likely reacted the same way. Don't worry about it... I am asking stuff all the time. Even if you behave like Peter Finch in Network and you:

Go to the window, open it, stick your head out and scream as loud as you can...

 "I AM MAD AS HELL, AND I'M NOT GONNA TAKE IT ANYMORE!!"

 It's ok because you are perfectly right to feel that way. Although the neighbors may not like it.

Steve1961
Posts: 250
Joined: Dec 2017

I just may do that ..I want to decide and get this over with ...I’m getting tired and pissed ..thanks again.

Steve1961
Posts: 250
Joined: Dec 2017

as u all know this has been going on fir 5 months ...starting to slowly lose it ..all the studying all the drs all the info.all the what’s ifsssss .getting that news now 2 weeks ago about the cancer being of high risk and Gleason 4 being of cribiform has me real shook up..so the last doc says we shouldnot wait around and watch this ,,.well I knew that that 5 months ago ..he says he didn’t think it would escape the would capsule in the next few months ..well what if i saw the this dr back in February he would have said the same thing and now it’s 3 months later ...the radition dr at UCSF cant start treatment until   June 25th ....that would be 7 months after diagnosis .now with high risk cancer .if I knew this 5 months ago I would be done with treatment no way I would have waited 5 months ..would youuuuu.I mean only 15% of men hsve high risk cancer and I am one of them...10 year survival rate drops to like 70 percent the 15 year like 67 ...but the localized 15 year rate is still Around 90 % ...so where does that put me ..I guess the only way to know if it’s actually still localized us surgury...the Stanford people want to do the most sgressive treatment just to make sure in case it actually is of high risk.they want to do 4 months hormine treatments 25 EBR and 1 IBR brachytherapy..I was talking to s resident about this ,he wanted me to start the hormone Monday ..then radiation on may10th and do the 1 day brachytherapy in the middle of the IBR ...I told him I needed at least a few days to think about it ..I get a call from the scheduler that same night last thursday at 740 pm ..she left a message saying she heard u wanted to proceed with treatment call her anytime to set it al up....WTH ...I don’t think I can wait until until June 25 th for UCSF the worrying will ruin me ..I am scheduled for surgery on the 31st and I am seeing the dr on Tuesday because I have many more questions to ask..this dr had been with UCSF for 32 years ..I waited this long to see him because he is known at least around here as the best ...UCSF is #4 in the nation supposedly ...he is the only who wanted this testing done .  After seeing him the first time I did say to everyone how impressed I was with him and I said what ever he thinks I should do I will.   He did say that hands down he would take it out and go straight fir the cure ...looks like I am seriously leaning this way .i just seriously thought the test would come back of low or intermediate risk since everything was pointing that way ..I can’t,let my fear of surg sway my decision because that’s what I’m doing ... I’m sure a lot choose other treatments over surgury because of fear as well but if it’s the right thing to do one should try to get over the fear ..but it’s tough ..thanks for listening again ..always open to suggestions ...btw I went fOr another psa test Monday came back 7.1 down from 8.6 when diagnosed dont know if that means anything 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

The problem is you have had WAAAY too much time to think about this, you have way too many doctors involved, and way too many options to chose from. You need to make a decision and not put it off any longer. Mine was very high risk, and as soon as I got the diagnosis I had surgery scheduled just as soon as I could get some guys lined up to move our stuff out of our house and load a truck. Then I drove a uHaul a thousand miles and flew back the weekend before my surgery.

You can try to simplify things by making pro/con lists for each treatment you are considering. Or use a dart board and if you don't like the answer then throw again. What is left is what your stuck with. Or you might want to have more input to the decision than a mere crap shoot. But the longer you wait the closer your cancer will grow toward the capsule wall and then you're looking at a lot more complicated treatment.

Last week I had surgery number fourteen (but who's counting)... at least I think it was 14. Anyway, just another surgery did not scare me. Radiation scared me. I was lucky that I did not have time to overthink what was going to happen. As I've said before, the most effective executives make a decision and just go with it.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

RobLee gives good advice, but first have a drink tonight, relax a little....then cut to the chase and make your deicision............no one else can make it...none of us.....none of your family members...no one but you....................

Steve1961
Posts: 250
Joined: Dec 2017

u r all right need to make choice ...don’t feel comfortable with Stanford radiologist..I mean wants to start ADT this week the EBR may 14 and in the middle of all that do the brachytherapy with no break...wonder if my body can handle that all at once ..ohh I must continue my physical job as well .....UCSF radiologist is on fu....Ing vacation the next 2 weeks and won’t answer ant questions and I can get an appt to se him until may 24 and I cane stsrt radition until damn June 24th almost 2 more months ...I can’t wait this long .rob Lee is right this cancer could be growing faster i will meet with surgeon Tuesday and then decide ....looks like god is making all this happen fir a reason I think he may want me to do surgury ..we shall see thanks everyone 

ASAdvocate
Posts: 117
Joined: Apr 2017

The more time you deliberate, the more confused and conflicted you are becoming. RobLee and I watched a very intelligent and methodical man with a similar case as yours, spend six months interviewing every expert, and reading just about everything written, in his exhaustive quest to find a treatment that was best for him. For months, he seemed sold on surgery. Suddenly, after meeting an expert in that treatment, he decided on High Dose Brachytherapy, and had that treatment, and is very satisfied. So, while several options could cure you, you need to roll the dice on one.

Personally, with the G4 with Cribriform. I would consider a strong regimen, such as IMRT with brachy boost, or HDR-BT as a monotherapy.

https://www.ncbi.nlm.nih.gov/pubmed/28341241

Good luck.

 

Steve1961
Posts: 250
Joined: Dec 2017

Most definitely 

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RobLee
Posts: 259
Joined: Feb 2017

A new forum brother has posted on page one of this thread that he is having RP on Thursday May 10th. As threaded replies are not easy to find in this forum, I thougt I'd post a link to his story. Let's wish user "HotStox" a successful surgery!

https://csn.cancer.org/comment/1627498#comment-1627498

graycloud
Posts: 39
Joined: Jan 2018

I thought I would just throw this in.  My husband is 3 months post robotic, nerve sparing surgery to remove his prostate.  We were gleason 9 going in.  Caugh it early.  Downgraded to a 7 post surgery.  Lymph nodes - clean.  Bladder neck and seminal vessels - clean.  We went to one of the top prostate cancer centers in the country/world.  My husband is doing fantastic.  Was it a piece of cake?  No, but for him to be feeling great and doing great at this point 3 months post surgery is incredible.  His side affects are getting better every day.  No pad at night - can sleep in his old sleeping shorts. A victory last week!   I'm confident he will be out of pads during the day(other than for exercising) within the next 60-90 days.  From an ED standpoint, very minimal side affects.  The doctors have put him in the top 15% for recovery because he listened to his doctors, spent 3 months pre-surgery getting healthy, did what they told him to do, and worked hard.  Put your emotions now in to getting in the best physical shape of your life.  Start walking.  If you decide to go the surgery route - tell your doctor your want physical therapy before surgery to get a baseline on your pelvic floor strength, and get them to agree to start PT 3 weeks post surgery.  You've got this! 

 

Steve1961
Posts: 250
Joined: Dec 2017

Was surgury a success what’s his PSA level

Steve1961
Posts: 250
Joined: Dec 2017

I know what positive margins are ...but do u have to wait until after surgery to find out if there were any according to path report and if so hope for the best or does the surgeon find out in real time during the surgery so he can fix things if there were positive margins 

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RobLee
Posts: 259
Joined: Feb 2017

Positive margins aappear during the course of surgery. Depending on the location of the tumor on the prostate the PSM may be correctable. If the extracapsular extension is at the base, the surgeon squirts dye on the surrounding tissue that can identify cancerous tissue that can usually be cut away. If the tumor is at the apex it becomes more difficult to differentiate between healthy and cancerous tissue. Samples of tissue may be excised and sent to the pathology lab for examination during the course of surgery to determine if the tissue contains any cancerous cells.

As is usually the case when cancer is involved, it is not a simple matter. Nothing ever is. When there is knowledge upon the conclusion of surgery that surgical margins remain the patient may be advised to undergo adjuvant radiation as soon as continence is regained. Sometimes it is preferred to "wait and see" if PSA rises over the months or years following surgery before commencing salvage radiation. The hope being that the cancer is still confined to the prostate bed or pelvic floor.

The advntage of surgery is that the surgeon is actually "in there" looking around for cancer, whereas radiation just bakes the entire area. Radiation damages all the cells it hits. Healthy cells are able to recover but cancerous cells are not and eventually die. Hormone deprivation weakens the cancerous cells and makes them more susceptible to the effects of radiation, but does not kill them. It's an imperfect process but usually gets the job done.

Steve1961
Posts: 250
Joined: Dec 2017

I will be honest will all of you wonderful people that have helped me ...I know I am being tooo thourough but I have all these great hospitals near me and drs at Stanford and UCSF  so why not f getbopinions  glad I did  now we know exactly what type of cancer it is but now dont Want to wait much longer...I kinda Want to have this thing taken out and be done with it ..but to be honest with all of you . I am sooo afraid of being put under ..I never have been and when I start thinking about it I get all worked up, I mean worked up. Like anxiety ridden ...I would hate to not do the right thing just because I am afraid to be put under the surgUrey side affects don’t worry me at all  the ED. Incontinance losing. Length the catheter just the anesthesia part frightens me ...I should thank god I have my dr gave me a choices.  He saying both have same overall outcomes and the radiologist seems to think he can cure me he is very confident . Well I guess ebryone has their reasons for not wanting surgury I hope mine isn’t a cowardly one .wouldnt want to,regret the choice I made bit I guesss this is a legitimate reason ....I just want to feel good about making my decision because Im pretty sure it going to be radiation...thanks everyone for all your help

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