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Posted 9/8/2018 3:28 PM (GMT 0)
Good day, I'm new here. I got the word after testing for the cause of my poor urine flow. Been seeing doctors, gathering information and trying to put a game plan together. Based on findings, I have plenty of time to think about it. (pos in 6/12 at a 3+3)
Any actual treatment reluctance comes due to a colon resection at the rectum this past march. Said that if I wanted surgery they think I'd be better off somewhere they have better capabilities. Offered surgery or radiation as options and set me up with a radiator shop here. He feels good about planting seeds in my case, but warned there may be repaired tissue issues.
I did some poking around and found a surgeon at Barnes/Wash U in St.Louis. He is concerned the scar tissues from the past surgery may create issues if it's decided to remove the prostate. He said once inside with the robot he can look to see just what's up; proceed, go to open surgery or abandon ship all together.
It all leads me to ask if any of you had lower end surgery prior to PC treatment. I'd probably be willing to wait on treatment if I could pee.
Posted 9/8/2018 3:51 PM (GMT 0)
Pontiac, welcome. Sorry for your diagnosis, but as you apparently know, with a G6, you’ve got the luxury of time. With that said, you might want to think about getting a second opinion on the slides, most of us have used Dr Jonathan Epstien, at Johns Hopkins who is considered the gold standard in PC pathology. I think it’s worth the effort Nd the $250 cost, especially considering you had 50% of your cores positive,

I don’t have experience with your problem. Have you discussed this with your surgeon who did the colon surgery? Maybe you can get a surgeon to get on the phone with him and discuss. Or a radiation Onc, if you decide to go that route
Posted 9/8/2018 4:06 PM (GMT 0)
Welcome to HW.

What is your PSA? Likely you'd be fine with either surgery or brachy (seeds) or even AS (active surveillance). Not all PC needs to be treated right away and G6 is in that range.

You need to find a surgeon with tons (hundreds or thousands) of RALP surgeries. Still the LDR or HDR brachy routes could avoid colon area all together and would be curative and would avoid some of the possible complications of surgery in your case. Likely you'd want to avoid beam radiation. Still, I think you should consider getting evaluated for AS. No treatment or delaying treatment could be an option.

Others in your area will be along shortly with recommendations for treatment centers/doctors shortly.
Andrew
Posted 9/8/2018 4:47 PM (GMT 0)
Thanks for the replies. I do have a 2nd opinion outfit through the insurance company working on my case. After the recommendations in so many posts I've seen here about the slideshow at JH, I'll do that. The seed planter had spoke with the gut surgeon prior to speaking with me so they are on that same page. I have two problems with seeds. First and foremost for me is the pee factor. I can't help but think that will
get things riled up to the point I wont be able to pee. Aside from that I feel like if I start with that and for whatever reason it comes back on me, I'll have no option except the heavy duty radiator. InTheShop, I did mean to post my 3.71 PSA in July and that it was up from 2.7 in November. Not remarkable and from what I've read, and may have been elevated to to activities a day or two prior to the test. As far as AS, I don't have a problem with that at this point, but the Dr's don't come across as pro-AS. I have asked the 2nd opinion group about possibly green lighting and AS. My next URO conversation will also include checking to see if it is the prostate causing the blockage, In my opinion that too could be scar tissue in itself. My deal is wanting to have a backup plan.
BTW, I'll be 'in the shop' as well. I deal with automotive maintenence and repair.
Posted 9/8/2018 4:50 PM (GMT 0)
Take some time...you got it....surgery is not your only option...look at sticky notes they have a closed lock to the left at the top of the page after you hit prostate options\....the options are AS....all kind of radiation TX...and more...also at the top to the left with the closed lock are acronym meaning...they define acronyms/abreviations...such as TX,,,AS...welcome do do the the second opinon on your slides...Its not a another biopsy...just a second opinion...Epstien is one of the bes...welcome ...any question just ask us...we bark a lot...but seldom bite...like any family...we can be dysfunctional at times...and as in any family we also forgive and forget offences...the journey you are on will be rough at times also...we are a microcosm of the big sky theory...sometimes we think for you sometimes...a sort of primer fpr whats coming...till you get the training wheels off then you graduate to yourself with us riding the yellow line closely for protection and comfort...regards logo...again get the second opinion
and and there are no stupid questions...you know that phrase...it was true then and still is

ge
Posted 9/8/2018 5:21 PM (GMT 0)
I truly appreciate all concerns and comments. No doubt, this group does have a lot of experience under it's belt. I've learned much in the short time I've lurked through a number of posts. I have said since finding out that if you want to use my name and cancer in the same sentence, I'm more comfortable with prostate than most any other part of me. That comment is certainly not meant to downplay PC. I'm not the least bit happy about it. I also feel most fortunate that it came about the way it did. They could have played the enlarged card for months prior to the biopsy, but we found it nice and early. Based on the success of my colon surgery and as much as I kind of hate to admit it, I'm probably less afraid of surgery than I am even LD radiation. Again I do plan to take advantage of, if you will, the knowledge and experience of the group.
Posted 9/8/2018 5:52 PM (GMT 0)
If there are urinary issues, surgery might be a better option, but you're going to need a top notch surgeon for that. They're out there.

Andrew
Posted 9/8/2018 6:17 PM (GMT 0)
That is my thought as well. The surgeon I visited at Barnes is Sam Bhayani and just looking at what I have, I believe he is very well versed in robotics. At the same time, he leaned toward the seeds.
Posted 9/8/2018 6:35 PM (GMT 0)
Pontiac, As you will see in my signature, I had RALP at Barnes/Jewish with Dr. Figenshau, and I couldn't have had better care, or a better outcome. He, or any of his team-mates will do a great job with you. Good move to have them all talking to each other about what is going on down there.

With your urinary issues, treatment is likely in your future, usually with a small amount of G6, active surveillance is an option--but the urinary issues may indicate that something needs to happen.

I'll reiterate: BJC/Siteman is as good a place to go for consults and eventual treatment as there is. Make sure you ask the radiation team about your urinary issues.
Posted 9/8/2018 7:37 PM (GMT 0)
Thanks for chiming in halbert. When I asked at BJC about seed planters, Dr.B thought if that was in fact the way I went, he suggested I stay closer to home based on the follow ups an such. The one RO I talked to was here and while he noted the seeds would be less apt to create the long term incontinence possibilities, he affirmed the potential for additional blockage. I may just have to decide whether I want to wear a catheter or pads. I guess it just all depends!
Posted 9/8/2018 8:31 PM (GMT 0)
Time for me to get out of the shop for now. I don't have a computer at home, and for whatever reason, my ipad doesn't work well from a posting standpoint. I can't thank you folks enough for your help and support. In closing for the day I'll say I have a cousin with gut issues as well and told said cousin if they have surgery for that, it would be nice to know in advance about the potential for PC and to have the Dr. check. She assured me she would. Peace.
Posted 9/8/2018 8:48 PM (GMT 0)
You've already got some good advice, so I just want to add my welcome. Keep us posted and I hope we can help!
Posted 9/9/2018 12:28 AM (GMT 0)
Pontiac - I imagine you won't see this until some later date, when you get back to a computer (although I can read and post very well from my iPad), but I wanted to add a comment.

You've gotten some sound advice so far, regarding surgery or seeds, but is there any reason why you haven't explored any of the external beam radiation therapies? These can, in the hands of a good to great practitioner, have the same (or maybe even better) cure rates for PCa. I especially suggest that you look into SBRT (such as CyberKnife) radiation therapy. SBRT is typically done in only 5 fractions (treatments) over a two-week period, and is completely non-invasive. The only implants needed are the markers implanted into the prostate for aiming the radiation beams. The 10-year efficacy results are very good - especially for low-risk PCa like yours. The urinary toxicity results are also excellent. Do not expect that your seed-planter will be able to properly discuss SBRT with you. You will have to seek an RO who specializes in SBRT to get the full picture of how applicable it would be for you and what side effects you might expect.

As the others said, you do have some time to think before you need to treat. Use it wisely.
Posted 9/9/2018 10:07 AM (GMT 0)
Pontiac, SBRT would be a good option for you, I know that BJC/Siteman does it, it would be a good question to ask.
Posted 9/9/2018 1:04 PM (GMT 0)
Pontiac:

There have been many discussions/arguments about surgery vs. radiation.
In my case, I opted for surgery.
One of the many reasons for me was BPH. I had it for years and after a decade flomax had stopped working. I was having HUGE issues with urination. Twice I had my coat on ready to hit the ER to get catheterized.
Both times I finally managed to urinate, with great difficulty.

The surgery totally cured that issue (fortunately for me, incontinence only lasted 2-3 weeks!).

It sounds like you are in that same boat

Mel
Posted 9/10/2018 4:51 PM (GMT 0)
I'm back in the shop now and after some time, our internet is back. Thank for the additional posts and Paxton, I will check deeper into the SBRT. I assumed it would be more harsh and really hadn't considered
that route.
Compiler, My thought from the start has been surgery and that is due to the urination issue, similar if not the same as yours. The questions come in to play due to the past colon resection in March and the potential for scar tissue left behind. They use the term "adhesion" often. My original intent in the post was to see if anyone out there in our HW community had been through anything similar.
You folks are a Godsend in that we can talk among ourselves for more perspectives. Thank You.
Posted 9/10/2018 4:59 PM (GMT 0)
It's rare that we run into someone here with your prior surgery, so I don't don't if you'll get much response there.

However the surgery vs. radiation conversation rages on. ;)

Adhesion is a risk factor for you doing surgery. I had gallbladder surgery years ago and am now having some adhesion issues, but I know lots of people who didn't get that. Very hard to predict what might happen if you chose surgery.

I think you should do a lot of talking to surgeons about you case. Just might be the right path for you.

Andrew
Posted 9/12/2018 12:48 PM (GMT 0)
I spoke with the gut cutter yesterday and he seemed to feel pretty comfortable it shouldn't be an issue.
I'd also re-read his & URO's report pertaining to my colon surgery. It all seems to have gone well with nothing to remark about. That surgery was all done above the area I expect they'll need to work in.
I also have another invite to speak with URO about a cystoscopy to better inspect my urinary tract for the blockage issue.
For now, it's back to business. In My Shop. Thanks again for the input.
Posted 9/12/2018 1:30 PM (GMT 0)

Pontiacwild said...
... due to the past colon resection in March and the potential for scar tissue left behind. They use the term "adhesion" often. My original intent in the post was to see if anyone out there in our HW community had been through anything similar.


Similar, yes, but I probably have no useful information for you. I had a bowel resection nearly forty years ago and the surgeon removed what he said were adhesions at the cecum, from a hernia repair that he had performed three months earlier. It was a terrible experience.

Now it appears I have a carcinoid tumor in the small bowel mesentery and must undergo another bowel resection to excise the tumor and the affected portion of bowel. I've been doing as much research as I can tolerate, and one of the possible causes of this type of mass is prior abdominal surgery.

So I have to ask myself, would that be the bowel resection from 1980? Most likely it has nothing to do with the robotic prostatectomy two years ago. There's a lot of territory between the two areas. At this point I know very little for sure. Surgery is Oct 1st, and I'm a bit scared due to my bad experience in 1980.

As I had mentioned, yes I've been through it, but that probably won't be any help in your situation.
Sorry if I hijacked your thread, and good luck with whatever is to come.
Posted 9/13/2018 1:32 PM (GMT 0)
I hope things work out well for you Rob. I gotta think surgery has advanced to the point it will be easier on you than in '80. Don't know the process they went through then, but mine was done laporascopic and went fine. I came out with a 4" scar from my bellybutton up and two more, lower and to the right. Had no stitches nor staples to deal with at all. Up and walking that evening; went back to work in just over two weeks! The only drag was I had a catheter to deal with for longer than I wanted to deal with it.
I like what you said about the amount of territory between the two areas. As I noted above, the gut cutter
said the same thing.
Think positive and keep up with your end of the bargain.
Posted 9/14/2018 11:14 AM (GMT 0)
Pontiac, It sounds like the answers are starting to come your way. Have you met with the radiation team at Siteman yet?
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