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prostrate containment

Steve1961
Posts: 246
Joined: Dec 2017

started a small thread about containment...been seeing surgeons and radiologist,,,have had alot of opinions..2 out of 3 very qualified surgeon tell me i shouldnt have the prosatrate removed..looking at brachytherapy as well as cyberknife....my question is how can one tell if the cancer is really all contained...i know that if i choose cyberknife they will do a t3mri and a c scan as well i guess that will tell if it is contained....BUT the stanford surgeon told me an MRI is not necessary because if anythign did escape it would be so mi nute it would never show up on an MRI  the only way to know for sure is to get in there and see it up close  and even then there is a slight chanve some might have escaped if there are positive margins...sooo really how does one know if the cancer is truely contained....i am thinking no one will really know until what ever trratment was done   and hopefully keep having very low PSA scores ..i guess..maybe someone has better knowledge than me ..i will asking this of the next radiologist i see at UCSF  any opinion would ne apprciated...tough decsion that for sure..   i know surgery is rough but once u r done  and if the lab says no positive margines i mean u probably have nothign to worry about at all..with the other treatment PSA goes down soo slowly..another thing i quite dont understand  ...either  thanks

Steve1961
Posts: 246
Joined: Dec 2017

i dont mean to  waste anyone time...i think i found the answer to my question here on the forum..so i take it if after having a t3mri  there isnt anything really showing up that means the cancer or tumor is most likely deep inside but if something does show up then likely its close to the edge am i correct in assuming this thaanks

MK1965
Posts: 177
Joined: Jun 2016

Steve,

Stanford is worldwide known institution und runked high in urological specialty So it should be good choice if you decide to choose it.

You mentioned that with other treatments PSA goes down slowly but also SE are not hitting you straight in the face right away and not with same intensity as SE from surger. Surgery awarded every patient with unavoidable SE for long time and for some for ever.

Surgery is changing man for ever and that change is not good. Recovery is never ending if the guy is lucky to move from ground zero, if not stays there indefinitely.

What if you get unfavorable side of the coin? 

I made mistake and got one.

MK

Steve1961
Posts: 246
Joined: Dec 2017

i hear ytou brother soory to hear the side effects are still hurting you..hopefully the PC is gone for you at least...I am seeing one more surgeon at UCSF   i saw one surgeon at stanford a younger kinds hotshot who was adamen about surgery  and really nothing else...saw another surgeon 35 years experience told me not to have surgery...i saw a 26 year vet surgeon at UCSF and he said i should not have surgery he suggested either brachytherapy or cyberknife...i am seeing a 2nd surgeon at UCSF  there top dog if he says not to ahve surgey then i will have eithyer cyberknife or brachytherapy..i am not to thrulled about surgery and was told it should be the last resort...thanks for your input

Old Salt
Posts: 720
Joined: Aug 2014

You are not correct. An MRI is by no means definitive. It may (!) show areas that are worthy of further investigation; that's all. For instance, the results can be used to target a biopsy. And to get back to your original qustion, one can never be 100% certain that cancer cells have not escaped. But if the cancerous sites within a prostate are not close to the margins, combined with a low PSA score, it's a reasonable ASSUMPTION that the cancer has not escaped the prostate.

No certainties ever with prostate cancer! 

Steve1961
Posts: 246
Joined: Dec 2017

i am leaning cyberknife  but it percisely targets the prostarte only from what i am told....maybe brachytherapy maybe better  because i think it may take care of anything that maybe outside the prostarte..good question to ask the brachytheraoy dr when i see him...thanks again everyone..this will help me make the right decison..this forum is a god sent...but i will move on and get the T3 MRI done  and as much as i am not looking forward to the ERC part i read it is far more superior in imaging and staging of  the PC than using the apron o well been thru worse lol

hopeful and opt...
Posts: 2224
Joined: Apr 2009

With SBRT the perimeter of the treatment can adjusted to go outside the prostate....with intermediate as you have, the radiation onocologist will want to have a wider margin.

The T3 MRI may show extracapsular extention; if not, the cancer may still exist, but you will have a better idea of where you stand

With  SBRT, a ct scan is used to place the markers for treatment; the primary use is not to dectect cancer.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

I attended a support group with my husband last week that included 3 radiation oncologists from UC San Diego. One guy has been using both external radiation with what he called a “boost” of brachytherapy. I didn’t get a chance to ask if this was a clinical trial. He was very positive about that approach so you might ask about that in one of your consults. My husband is very early in the process and so far only knows he’s at high risk. I know how overwhelming all of the information is. I wish you all the best as you walk the PCa road. You have some veteran warriors advising you. We’re lucky to have found this board.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi, 

From what I understand the T3 MRI is the best to offer at this point in time.  Pca starts inside the Prostate, that's why they call it Pca.  With the MRI it should show you the location(s) of the cancer.  If it's close to the edge of the gland then maybe some form of radiation teatment would be better.  If it's deep inside then surgery could be a good option.  Don't know how much tissue brachy kills surrounding the treatment site.  I feel you need to get the best treament to kill the cancer as your first priority, side effects should come second, but that's just me.  Don't be afraid to see other doctors if you still need more definition on the location of your cancer.  Ask lots of questions, study, study, study.

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Steve,

Most of what you wrote above in your first post seems logically contradictory.  You state that "2 0f 3 surgeons recommend against surgery," but then speak at length about being unable to know whether there is extracapsular escape.  And you mention the well-known limitations of 3T MRI.  If the surgeons know that certitude about escape is your foremost concern (and it seems to be), why would they ever speak against surgery, since it absolutely yields the greatest certitude ?  (Note carefully:  I am in no way here discussing side-effects. Side-effects are very important, but they are not what I am writing about at this time.)

There is one way to prove or disprove extracapsular escape: cut the gland out.  When a pathologist has the gland in a labratory setting, and can study the gland and its interior tumors under a microscope, he will know "yes" or "no" if there was escape.   

ALL avenues of escape will be studied:  Positive margins ("eating" through the wall of the prostate gland itself); Perineural escape (escape under the sheathing of the nerve bundles that run in and out of the gland); and escape to adjacent urinary tract structures (mostly the seminal vesicles, which are also cut out and analyzed).  In addition to this, adjacent lymph nodes are removed and studied for disease.  While nothing in medical science is 100%, if ALL of these studies are negative, then the liklihood that there was no escape is astronomically high, and more certain than via any other technology.  There are men here who tested negative in all of these tests post RP pathology tests, but relapsed, for reasons medicine does not yet really understand.  But MOST men who relapse following RP were known to have had capsular escape, determined via the pathology report.  And most or all of these will have then begun secondary therapy, almost always IMRT/IGRT.

That is, no other set of technologies currently in existence can compare with this level of certitude as to whether or not extracapsular escape occured. Not MRIs, not PET or CT scans  (regardless of contrasting agents used), not bone marrow scans -- nothing.

I am not "recommending" surgery for you; neither for nor against.  I am just making a point regarding how to besk know if PCa has escaped from your gland.  My mentality and concerns were very similiar to yours, and I chose surgery with excellent results, similiar to what most men achieve and report in recent years. Using antiquated statiistics from decades ago regarding RP is unfair to you or anyone else.

Use my comments as you see fit, and bless your decisions,

max

Steve1961
Posts: 246
Joined: Dec 2017

maybe a slight misunderstanding..yes 2 out of 3 surgeons recommended that i dont need surgery..they said nothing sbout escape in fact seemed confident it was still contained becasue of low psa gleason tumor size etc...even they say that surgery is very inavsive  with major side effects..and at my stage i have other options all with similar results I appreciate them giving me their honest opinion and not jsut saying surgery becasue they are surgeons

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RobLee
Posts: 259
Joined: Feb 2017

 

The ONLY way to know what is going on in and around your prostate is to cut it out and examine it in the lab. External imaging can only give you limited information. So too is therapy which is based upon scans. It is like shooting in the dark. My MRI and biopsy indicated that my G8 tumor was close to the capsule wall. After everything was removed and examined it turned out that the cancer had escaped and invaded surrounding tissues. Over the past 18 months I've had follow up hormone therapy and radiation to the pelvic floor, and now my PSA is zero (0.00)

 

There were some bumps along the way, and while some guys will tend to dwell on side effects, one needs to realize that there are thousands of prostatecomies performed worldwide (I do not have specific statistics) but I would assume that there will be a percentage with less than optimum outcomes. I am personally familiar with most of the stats regarding long term SE's and have had most of them myself. But as a result I am looking forward to many years of continued *LIFE* with minimal concerns.

 

To paraphrase another fellow who posted here recently,

 

  "I may be impotent and incontinent since my surgery, but all the guys I knew who had seeds are gone now".

 

 

 

 

 

Steve1961
Posts: 246
Joined: Dec 2017

what does that last phrase mean..all the guys u knew with seeds are gone...are you saying seeds dont work  and many guys someone ot you knew passed away from prostarte cancer because of seeds... my wifes uncle had seeds put in at stanford 34 years ago and he is 74 now and doing great...i mean u had yours out andstill needed radiation and hormone treatments..so why didnt u just have radiations first it may have taken care of it without surgery...sorry dont mean to sound mean..but i didnt apprecaite that last comment...i am strongly thinking about brachytherapy or cyberkife  and dont need to hear that all that had seeds are gone....

MK1965
Posts: 177
Joined: Jun 2016

Steve, 

stay by your choice. Do not let other change your mind. Conclusion from Rob was not good one and was promoting fear of death for those who selected seeds route. I had surgery and regretted it 100 %. Worst what I could choose. Surgical SE are devils circle, once your in , your locket for ever.

Good luck with your choice.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

Mk1965,

I agree with you: ANY man should stand by his choice in treating his PCa. Making the decision is hard enough in any circumstances.

But Rob did not "make ANY conclusions," as I read his post. What he did instead was relate personal experiences and what happened to others whom he knew.  That is not the same thing as drawing a conclusion.  Also, he did not fearmonger.   Saying that I knew x number of men who used a therapy, and all of them died, is not fearmongering; it is relating a fact.   And it does not imply that a given treatment never works.  It just didn't work for the men he knew who used it.

In my personal circle of experience with PCa, I have known of 9 men with the disease. NONE writes, or ever wrote, at this Board, just as the overwhelming majority of men with PCa never write to any Board or blog.   Six of the 9 had RP as their initial (first-line) treatment.   Of those, two are now dead from PCa, although they both lived over a dozen years, and had every subsequent treatment known to medicine.  The other 4 are still well, with no relapses thus far (I myself am one of these 4). 

One of the nine had IMRT first line, and died within a few years. He was only 40 something at diagnosis, and had aggressive, Stage 4 disease at diagnosis.  Another guy, a cousin of mine, used Brachytherapy as first-line.  He relapsed, and later had IMRT and then years of HT before passing.  And the last of the nine uses A/S.  Ten years out, he has never required curative treatment, and is completely well today.

So the results drawn just from what I have seen among personal aquaintences is scattered, all over the board.  In relating such, I have no desire or objective to frighten anyone; to do so would be sick.

If that causes fear in a reader, then the reader needs to think a bit more deeply,

max

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

My final line was not anything I said about anyone I knew.  It was someone else here who posted that and I merely remembered reading it and passed it along.

But there are a few things to consider. Seed implantation is often chosen by older gentlemen who have other medical problems and may fear not surviving surgery, so if there's another way to do it they choose that.  I live in a seniors community and know several men who had seeds, and they are in in fact relatively poorer health. I never said that seeds don't work. But I also know men who had radiation and later developed bowel problems or blood disorders and there's no way of knowing whether or not radiation had anything to do with that. Some people develop these problems who never had radiation. Stuff just happens.

But my point was, once you choose radiation as your primary treatment, there's really not a whole lot of other options. Some mention HIFU and cryo and a lot of weird third line therapies, but for most men, prostatectomy is their first approach and a percentage of them require further treatment. It's about having options. If one route fails you have another route available, rather than a dead end.

Again, read the last line above... "To paraphrase ANOTHER fellow who posted here recently".  I did not bookmark his post and it's not easy to search for specific posts on this forum. But I do remember vividly what he said. And I said paraphrase because what I did was convey something that was written by someone else, NOT ME. But I felt it was a poignant observation, and relevent to the discussion.

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

The ONLY way to know what is going on in and around your prostate is to cut it out and examine it in the lab. External imaging can only give you limited information. So too is therapy which is based upon scans. It is like shooting in the dark. My MRI and biopsy indicated that my G8 tumor was close to the capsule wall. After everything was removed and examined it turned out that the cancer had escaped and invaded surrounding tissues. Over the past 18 months I've had follow up hormone therapy and radiation to the pelvic floor, and now my PSA is zero (0.00)

There were some bumps along the way, and while some guys will tend to dwell on side effects, one needs to realize that there are thousands of prostatecomies performed worldwide (I do not have specific statistics) but I would assume that there will be a percentage with less than optimum outcomes. I am personally familiar with most of the stats regarding long term SE's and have had most of them myself. But as a result I am looking forward to many years of continued *LIFE* with minimal concerns.

  To paraphrase another fellow who posted here recently, "I may be impotent and incontinent since my surgery, but all the guys I knew who had seeds are gone now".

 

 

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

I went back and edited my post to underine the phrase "another fellow" and now it has disappeared.  Sorry if that offended you so much, it was intended only to make you aware of the fact that radiation is not a guarantee of cure nor that there will be no side effects.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I am surprised that you repeated the misleading and inappropriate phrase from the "other fellow". I and others would like to know who this "other fellow" is?

I wonder, if  you "repeated" in order to persuade others to follow the tretment that you pursued. I suggest that you would do better by providing facts , if this can be found, that show that surgery is a better choice. ...

 

 

ASAdvocate
Posts: 116
Joined: Apr 2017

RobLee,  I am very glad to read that you believe that you are in good enough shape to suggest surgery to others and to mention possible downsides to other therapies. But, I very clearly recall your posts a year or two ago on other PCa forums where your surgery caused you such grief that I almost cried when reading your posts, and wondered if you would possibly take your own life. You went through the torments of Hell from your surgery, and anyone who read those posts had to feel deep sympathy for you.

 

But, here you are now, defending surgery???  You who suffered so much!  Sorry, but I can't help but think thare is a bit of "misery likes company" thinking going on.

 

You may not enjoy reading this, but I am confounded by your recommending for others that which you suffered with.

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

ASA - Thank you for your sympthetic post and your understanding. Yes, I was an emotional mess last spring. It had been six months since my surgery and I was not regaining continence.  I was put on HT knowing nothing about the side effects. My wife was disgnosed with lymphoma with several tumors up and down her spinal column and I had to be her caregiver. Plus I had to decide on getting the AUS implant in order to be able to undergo the adjuvant radiation which was already past the recommended timeline. Yes, I was a mess, but not because of the surgery. The prostatectomy was one of the more straightforward procedures I've undergone and had an easier recovery than most of my others... well, except for the incontinence. At that, I was merely a statistic, one of the 5% who don't regain full control.

No, I was not upset about the surgery. That surgeon saved my life. I did speak with two RO's and learned that I did not qualify some procedures due to adverse pathology and others required a substantial time committment, something I did not have at the time. The surgery was most expedient in my situatoin and was entirely successful IMO. It would have been nice if my previous urologist might have considered doing so a year or two earlier, when I might have only had a G6 or G7, things probably would have been much cleaner. But at my stage, the surgeron used a broad cut and took out a lot of nerve tissue, but left me with negetive margins and negative nodes. I can't complain about that.

The IMRT was necessary because the EPE had invaded the pelvic floor via the SV. The surgeon did all he could about that. ART was delayed because of the time I had to devote to my wife, the indecision and healing time of the AUS and going thru PT in an attempt to avoid getting the AUS. And no one on that other board where we met could tell me anything about AUS's. I was pretty much on my own. But now that is all in the past. The radiation proctitis is now healing and in just a few more months I'll be able to get a coloscopy to check things out in there. The HT was cut back to 18 months, so a year from now my T will begin to return. I have seen a therapist and have some medications that really helped me get through the crisis. And getting a big fat 0.00 on my latest PSA was a nice pat on the back for all my trials.

I don't think that I actually recommend surgery to anyone, but I do point out that surgery is the only way to have one's prostate thoroughly examined by a pathologist. And I usually point out that even if there is no radiation toxicity, one may forever be hounded by doubt and uncertainty regarding the safety and thoroughness of radiation as a primary therapy... especially for any young man, who must live for 20-30 years "hoping" that the RT got all the cancer and didn't damage anything else.

If I ever run across that post that I quoted, I will bookmark it. I don't remember anyone making such a big fuss about it when it was frst posted. I don't even remember the guy's name. But I thought it was clever and happened to remember it.

ASAdvocate
Posts: 116
Joined: Apr 2017

RobLee, Thank you for your detailed and thoughtful reply. My post was intended to provoke an explanation of your thinking, and you were kind enough to answer that.

I truly hope that you and your wife will be able to enjoy many years of relative comfort and happiness.

As you know, pro-surgery talkng points would be quickly challenged on some boards by pro-radiation advocates. You have even mentioned folks like me opining on surgery and radiation without having experienced either.  Certainly, there is some weight to that argument.  But, IMHO, neither experience nor extensive research makes anyone omniscient, nor able to appreciate all the depths and breadths of this type of cancer.

 So, we try to talk with each other and maybe learn something. Be well.

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RobLee
Posts: 259
Joined: Feb 2017

Thank you, you are most gracious. I really do appreciate your kind and thoughtful reply. And I know that you have not had an easy path yourself, having suffered thru several biopsies, some of which had complications and some serious SE's. And the reference to calling you out, though not by name, as presenting options which you have not personally experienced... I apologize for that, and do appreciate the depth of knowldge that you bring forward in each of these forums. I tend to be blunt, lacking tact and be overly verbose, also cynical at times. I sometimes write things that I later regret, but I suspect there are many of us who do so. To risk a cliche, we are all only human.

Admittedly I do tend to be old school in my thinking, and so am reluctant to recommend radiation to young men who - as I had said, may live 20-30 years not knowing exactly what happened inside them. For men 60-70 it's a toss up. I was told if I had been five years older I would not have been a candidate for surgery. And I have known some men who had less than favorable outcomes from radiation. We never know enough going in and we never stop learning. So far, 2018 is looking spectacular for my wife and for myself. Wishing you the best also, and thanks again for your understanding.

Steve1961
Posts: 246
Joined: Dec 2017

didnt mean to get bent out of shape and have so many people get involved as well.  Just that reading things  and so called sayings that are negative may have some meaning behind them..trying to make this insanely tough decidion is gut wrenching ..I am thankful In such a lost ion that I have iptiles and am being told that any treatment I choose will most likely all produce the same great outcome ...I should have took what I read with a grain of salt but sometimes it’s hard ...sorry once again .

Steve1961
Posts: 246
Joined: Dec 2017

if one chooses surgery and then has to have radiation as well do they regret having surgery when they could have just done done type of radiation just wondering that’s all thanks all this will help me make the right decision

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RobLee
Posts: 259
Joined: Feb 2017

I was told soon after surgery that I would need radiation. In fact, I was told before surgery that if the operation didn't get all the cancer that I might need salvage radiation. My prostatectomy went even better than I had expected. From the MRI it appeared that the cancer was contained. The surgeon removed as much tissue as possible and found that there was far more cancer than the MRI had indicated. Because the radiation oncologist later knew exactly where to target, I now have zero PSA.

If I had received radiation based on the MRI they would have missed a lot of cancer. I'm guessing there would have other scans prior to radiation, but I doubt they would have provided as much detail regarding just where the cancer had spread outside the prostate. I do not regret surgery in any way. it halted the cancer and nailed it down. Granted I lost a few other things in the process, but that's just the cost of having advanced high risk cancer.

I would not feel comfortable if I had gone with radiation at first and know there was this half baked organ still inside. What is done is done and though I wish a few things had gone differently, my choice of surgery was appropriate in my circumstances.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi All,

With both surgery or radiation there likely will be conseqences(damage).  Not saying surgery is the right choice or radiation but Rob hit it on the head.

You have to study your case and determine your course of action even if the results might not be optimal.  It seems like people tend to pick a treatment plan and then are very dissapointed if the results don't go textbook perfect.  Sometimes once the surgeon or ocnco guys get inside your body it can either go good for you or maybe not so good, that's the chance we all face.  My MRI said that the cancer was contained inside the prostate but when they removed it they found it was very close to the outside of the gland, if I would have waited several more months it might have been outside the prostate. So far so good, almost 4 yrs. with no detectable PSA.  Life is a crap shoot, hopefully you win the majority of the time.  Continued success RobLee and all other walking wounded as we all need a little luck in our journey.

Dave 3+4

scout10's picture
scout10
Posts: 2
Joined: May 2018

Is there pain asociated with the foley catheter in for one week after prostate robotic surgery? I will be asleep when they insert it. Is there pain when they take it out? Thank you

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

I had no cath issues at all following my DaVinci Rp in 2015. None.

The cath is inserted as part of the surgery, since the surgeon must test the cath for proper operation before closing. He will fill the bladder with pressurized fluid and then watch it drain to ensure that there is easy flow outward. This ensures that the urethera reconnection is properly sealed.  In many ways urologists are basically plumbers !

I experienced no pain with the cath, and none in the brief removal proceedure.  Having the bag IS an inconvenience, however, especially for me when sleeping.  Request a "walk around" bag to strap to your leg, and a larger overnight bag for sleeping...these are what I had.

Also, because of when the weekend fell, I had my cath in for under a week's time.

max

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi Scout,

 No pain when they pull it out, just a little mild discomfort. Having the cath in for around 10 days after surgery is unpleasant but not anything you can't tolerate, when they pull it out it will be a big relief, trust me.

Dave 3+4

Grinder
Posts: 441
Joined: Mar 2017

Be sure to be absolutely meticulous about your care of the catheter tubing and bag to avoid infection.. An anchor that keeps the tube from pulling on your business us helpful. Amazon sells Foley catheter peripherals you may want to check out.

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

First, the easy answer to your question is "no". There is no pain at all. It actually tickles a little when they pull it out.  I was apprehensive at first but then it was over in a second. It feels sort of like when you were a kid and maybe on a rollercoaster or hill hopping in a car and a little urine squirted out. Don't worry about it. You will feel silly just realizing that you were worried about it.

Since you've probably never had one before, the whole thing will look and feel wierd at first... just some sort of "contraption".  You won't be aware of it at first when you wake up, but as reality returns you will get to know how to wrestle the snake.  The tubing will be anchored to your thigh with a stick-on clip called a Stat-lock. It lets your leg move around without tugging on you penis, at least not very much anyway.

There will be occasional pink discharge around the tubing at the tip of your penis. Wipe it with a damp gauze or cotton ball and a little alcohol. Then apply some polysporin/bacitracin ointment at the tip to keep it from drying out and becoming even more uncomfortable, or possibly even infected.  The nursing staff will give you some supplies and go over the necessary maintenance procedures when you are discharged from the hospital.

I did not change bags during the week following surgery. The more often you disconnect the tubing the more chance of introducing bacteria. You can carry the large "overnight" bag around with you the daytime in a shopping bag.  I cut the bottom out of the pocket on a couple pairs of pajama bottoms to pass the tubing thru. At night, put the bag in an empty bucket by your bed (sometimes the bag might leak).  In the morning you just empty the bag into the toilet.

I should mention that I've had a Foley several times in my life. I was confined to a hospital bed once for three months.  Then I had a couple other surgeries after the prostatectomy which required a Foley. Also I was near fully incontinent for a year and used a leg bag during that period... even slept with it.  People who are destined to living with a cath become quite clever in ways to deal with all the plumbing.

Good luck with your surgery. I should let you know that of all the surgeries I've had in my life, the prostatectomy was the most straightforward and uncomplicated procedure from beginning to end. The short time you will be sharing with Mr Foley will quickly become a distant memory.

Jerry Mac
Posts: 21
Joined: Dec 2017

No pain at all.

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