HealingWell
Search Close Search
☰

"Get it OUT" Syndrome

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/19/2019 1:09 PM (GMT 0)
I have a new 'friend' I met on another support site whose husband was diagnosed about 3 months ago with Gleason 9 PCa. His initial PSA was 26. MRI showed seminal vesicle involvement and a couple of suspicious lymph nodes. Bone scans were clear. No CT was done. I encouraged her to get a second opinion from a radiation onc. But her husband just wanted to GET IT OUT. He was scheduled for surgery yesterday. After about an hour, the surgeon came out and told her that the prostate was "stuck" to the rectum, which was almost certainly involved and that they could not remove the prostate.

Now, her husband wants to find another surgeon who could do the job. Once again, I've encouraged her to find a radiation oncologist, but her husband is dead-set on finding another surgeon. I have also encouraged here to come here, but so far she hasn't. She is now asking for recommendations for a surgeon in the Boston area. So, I'm reaching out on her behalf. Can you guys recommend a reputable surgeon in or around Boston?

Thanks, Donna
Posted 6/19/2019 3:04 PM (GMT 0)
It's possible he has mets and surgery won't benefit. any reputable surgeon would refuse to go in a second time.

Radiation and ADT would be more appropriate treatments.

Sadly some people won't listen to reason.
Andrew
Posted 6/19/2019 3:08 PM (GMT 0)
I know, Andrew. I told her I didn't think any reputable surgeon would touch this. I'm hoping that if they hear it from an actual surgeon, they'll move forward with a more appropriate treatment. I couldn't believe how hard their Uro was pushing for surgery, considering the fact that there was already evidence of spread prior to surgery.

Thanks, Donna
Posted 6/19/2019 3:20 PM (GMT 0)
Surgery is seldom the best choice for Gleason 9 PC unless you catch it VERY early. In most cases, it's out of the barn before it's diagnosed..This person needs to visit with both an RO and an MO to get the complete picture. Obtaining a copy of the original surgeons notes might be enlightening...People read things about Gleason 6 and 3+4=7 and think that applies to Gleason 8,9 & 10. Unfortunately it does not..

For cancer treatment in Boston, Dana-Farber is hard to beat...They will provide a "second opinion" evaluation..
Posted 6/19/2019 3:22 PM (GMT 0)
She's now asking for recommendations for someone at UMass. She says Dana Farber is out of network. Do any of you know some knowledgeable ROs there?
Posted 6/19/2019 3:31 PM (GMT 0)
Just my take on it.. If they find a surgeon that would do the surgery they should run as fast as they can. But before they go any farther they better check with insurance co. as I can't believe they would pay for another surgery under these circumstances. And I'm sure if they did find a doctor he would run into problems when checking out insurance. Here's what I always tell new people when they are starting down the PCA journey. Get yourself a great team and a great facility become your own advocate then you and your team need to plan your treatment. If there was ever a better example of this it is your friend and her husband. The guy really needs a good team after these statistics. Wish you the best as you communicate with her.

Larry
Posted 6/19/2019 4:36 PM (GMT 0)
It's surprising that the initial surgeon even tried based on the initial info. Really. This is the kind of thing (along with surgeons who insist on operating on low volume G6) that makes all of them look bad.

Let's hope that someone at Mass General sets them straight. Promptly.
Posted 6/19/2019 10:06 PM (GMT 0)
when it comes to prostate snatchers it's the 90% that make the 10% look bad. i'm extremely fortunate my uro was a 10%er.
Posted 6/20/2019 12:28 AM (GMT 0)

F8 said...
when it comes to prostate snatchers it's the 90% that make the 10% look bad. i'm extremely fortunate my uro was a 10%er.

It's those prostate zappers who are wonderful, but not when they, without much basis, insist on "throwing the kitchen sink at it", and us, with nary a word about the life altering side effects.Same 90-10 balance.

Caveat Emptor everyone!
Posted 6/20/2019 12:54 AM (GMT 0)
"Same 90-10 balance."

nope. show me the cases on this board. the prostate snatcher has mangled so many men that they didn't want to test PSA until you're in your 50s because of overtreatment.

incontinence. ED. BCR. penile implants. peyronies. artificial sphincters.

"I can get it all and if I don't you will have radiation as a back-up plan"
Posted 6/20/2019 1:23 AM (GMT 0)
Please tell us that at least the urologist started him on ADT.
Posted 6/20/2019 11:59 AM (GMT 0)
This is a very personal choice. If it is not extended to other organs, as it seems in this particular case, surgery with removal of nodes is one of the options even for clinical stages T3a or T3b or possible node involvement. With the understanding that adjuvant or early ADT and radiation are almost sure to follow and the possibility of worse secondary effects. It also depend on clinical details that may be different for each individual. The important point is that every patient should know his options and what he can expect from each one of them.
Posted 6/20/2019 12:48 PM (GMT 0)
This situation is probably much more common than we imagine. Obviously, very few of us on this forum operate like this couple--and we do occasionally manage to talk someone down off that particular ledge. However, for everyone we talk down, there are likely dozens (or hundreds?) of people who do exactly what this couple did: Get the diagnosis, and then go right into what the diagnosing doctor recommends. They are the experts, after all.

This is a potentially tragic situation that was completely preventable--but I don't blame the patient at all. Our task (and especially RandyJoe's task) is to find a way to be supportive without blaming. It's a mess, and going back over the could have/should haves is totally non-productive.
Posted 6/20/2019 2:40 PM (GMT 0)
From the information, the surgeon determined that the prostate cancer had invaded the rectum through the wall of the prostate, hence they were "stuck" together. This isn't altogether uncommon. Radiation is likely impossible or ineffective as well since the rectum would get an unacceptable dosage. The man shouldn't be seeing a radiation oncologist, but a medical oncologist.

I note the strong rush to bash urologist and surgeons here...
Posted 6/20/2019 3:37 PM (GMT 0)
Chiming in here because my husband, G9, was also adamant about "getting it Out" ! He refused to get a 2 nd opinion or listen to reason being a bullheaded 100% Irishman (no offense anyone) Recovery was awful, catheter in 10 wks etc but it s been 2 yrs and he maintains that he s glad he got the Prostate out , even thought lymph nodes pos. The point being, it is very much a personal decision and one made not necessarily from a rational place. Just a different perspective I wanted to share and I know it s frustrating for those involved as it was for me but I had to respect it anyways. Sincerely, JKO
Posted 6/20/2019 3:46 PM (GMT 0)
Sounds like Doc got in there and saw more to do than what he is willing or capable. Maybe also need a rectal surgeon at the same time. May have done OP a favor and backed out for better planning with new information. Don't want the Doc turning into a cowboy without a plan in there. Surgery's possible use going forward may be to de-bulk the tumor that could be effecting the colon or urethra.
Posted 6/20/2019 3:56 PM (GMT 0)
JkoroukeRN for Husband, it is, of course a personal decision. We went the surgery route. Our situation was a little different in that Randy's initial Gleason was 7 (4+3) and we were told that it was contained and that surgery would most likely be curative. Hindsight is 20/20, but nothing in the rear-view can be changed. I really do feel bad for these folks, because I vividly remember the 'hair on fire' terror of the original diagnosis. And now, it's just worse, since the surgery itself was a failure. My hope is that if they visit a (few) true experts, that they can get their feet under them and move forward with a good treatment plan.

JNF - Their docs prescribed Casodex at discharge from the hospital. I'm being told he gave them little to no information on what might be next.
Posted 6/20/2019 4:12 PM (GMT 0)

RandyJoe said...
She's now asking for recommendations for someone at UMass. She says Dana Farber is out of network. Do any of you know some knowledgeable ROs there?

Dr. Jesse Aronowitz. He did my salvage radiation in 2010 plus carefully targeting an enlarged lymph node. He was at the UMass Memorial campus in Worcester when I had my SRT. He is now at the new UMass cancer center that was built a couple of years ago at Marlborough hospital (which is part of the UMass system). When I saw him for a follow-up visit in Marlborough a few years ago he told me the new equipment installed when the Marlborough center opened was a big notch up from the equipment used on me in 2010.

As others here have said - I can't urge strongly enough for your friend's husband to se an RO and also an MO to discuss appropriate treatment. From what the initial surgeon described, I think any other surgeon willing to attempt the same operation would be showing very bad judgment on two fronts 1) the previous surgeon described a situation that means high risk of perforating the rectum and/or incompletely removing the prostate, and 2) with a Gleason 9 and PSA of 26, the chance that the cancer isn't already out of the prostate is vanishingly small. Radiation plus ADT might still offer a chance of cure if the cancer is still confined to the pelvic area.

I'm sorry to hear Dana-Farber is out of network for them. I'm with a medical oncologist at D-F now and I can't say enough good things about everyone in my treatment experience there, oncologist, case manager / scheduler, nurse practitioners, infusion nurses. Everyone friendly, supportive, and willing and able to answer questions.
Jim
Posted 6/20/2019 4:28 PM (GMT 0)
As touched on by Gear and RN, there is the idea that de-bulking the primary tumor - even when there is known systemic mets - may increase survival. This is a controversial theory but my gut tells me it makes sense.

However, in RJ’s friend’s husband’s case, if the prostate being “stuck” to the rectum means the cancer has infiltrated the rectum, then as another poster stated - I think it’s time to get to an MO ASAP for something more than Casodex.

I think the potential side-effects of removing the prostate AND part of the rectum could be devastating.
Posted 6/20/2019 5:50 PM (GMT 0)
Thank you Bohemond. I'll pass that on. I agree that they should run hard and fast from any surgeon willing to try to remove the prostate at this point. I also agree that an MO is in order. Not knowing this person very well, I can't push my own theories too hard. I'm simply making suggestions and passing on what the kind folks on here are saying. I'm also encouraging her and her husband to come here or other reputable sites.

Donna.
Posted 6/20/2019 9:14 PM (GMT 0)
I’m guessing if in fact, the rectum is involved, there is not going to be any easy treatment for this poor man. Any invasive (I.e. surgery) treatment is going to likely negative effect on QOL, and needless to say, ADT/Chemo won’t be fun.
RJ, I think the best you could do for them is help them ferret out the best MO possible, the MO will be the one to advise him not to do surgery (or that it’s feasable/plausible,

Rock and a hard place.
✚ New Topic ✚ Reply