Re: Complications from Retro Perineal Prostatectomy!

[Guest guest]

, in pertinent part:

> If our Dr.s suggestion is also re-affirmed by another expert... we will

> go ahead with whatever they decide, and most likely back with our

> original Dr. Our concern is that our Dr. said he only sees 1 or 2 cases

> like my husbands a year. My husband is 56, was great shape, and had no

> other problems besides a rising PSA that was only a 2 at surgery time!

> His cancer is gone...so we are SO grateful for that. But our anxiety has

> risen just thinking of all the OTHER problems he could now have!

Consultation with another medic is almost always a prudent idea.

Do not be concerned with what anyone else thinks. This is

Husband’s concern, and HE is in charge.

Regards,

Steve J

[Guest guest]

Steve Jordan >

>> , in pertinent part:

>> If our Dr.s suggestion is also re-affirmed by another

>> expert... we will go ahead with whatever they decide, and

>> most likely back with our original Dr. Our concern is that

>> our Dr. said he only sees 1 or 2 cases like my husbands a

>> year. My husband is 56, was great shape, and had no other

>> problems besides a rising PSA that was only a 2 at surgery

>> time! His cancer is gone...so we are SO grateful for that.

>> But our anxiety has risen just thinking of all the OTHER

>> problems he could now have!

> Consultation with another medic is almost always a prudent

> idea.

>

> Do not be concerned with what anyone else thinks. This is

> Husband’s concern, and HE is in charge.

>

> Regards,

>

> Steve J

I agree with Steve. A second opinion is warranted and even a

third if necessary.

Right now, I think the important thing is not to rush into

treatment, but to be sure that no more harm is done and to move

carefully. Clearly, the surgeon did not do a great job. It may

be that he was not experienced enough at performing this

operation. It may be that he made a mistake. Or it may be that

he just had bad luck. But whatever it is, that's all water under

the bridge at this point.

The surgeon may be eager to try to fix whatever went wrong, maybe

too eager. It may be that the problem will resolve itself. The

body is pretty good at healing wounds.

I'm not a doctor and not qualified to make any medical

recommendation, but if it were me, I would be careful from here

on. I'd try to find another good urologist, and get a second

opinion. It wouldn't hurt if it were someone who didn't know the

man who performed the operation and and wouldn't feel quite as

obliged to defend him.

I would ask what will happen if nothing is done. Will it get

worse or better? If the consensus is that the worst is over,

then I'd want to let some time pass and see what healing might

occur.

I know that your husband is suffering. Maybe he needs more

treatment. But if he can heal up without it, that seems like a

safer course. If treatment really is required, then the simplest

and least invasive treatment sounds like a preferable approach.

However, as I said, I'm not a doctor. If the doctors say that

your husband will get worse, or won't get better, without

corrective treatment, then you may not have a lot of choice.

If treatment is required, find the best, most experienced doctor

to do it. If that means a trip to Baltimore, Cleveland or

Minneapolis, and you can afford that, then consider it. However

there may be a very experienced and capable doctor in your own

area. The key is to find him or her.

Best of luck.

Alan

[Guest guest]

It sounds like the rectum may have been nicked during the surgery! In my case, The doctor had me on a cocktail of antibiotics some three days before the surgery date and after, and insisted that I perform a pre-surgical bowel cleansing pre-op in a manner like that preceding a colonoscopy. In particular, the doctor warned me that in very rare cases of perforation of the rectum occurs and proper pre-op prep would prevent the risk of having to have a temporary colostomy should this happen.

Your husband needs to get a second opinion pronto, preferable at the one of the specialty institution you listed below. If the operating doctor did not require any of the above pre-op procedures insistently, then you may have a case of possible malpractice. My surgeon, Dr. Hale of the West Florida Urological Group does at least several dozen of these procedure a year. The advantage of the old-fashioned perineal method is the risk of sphinctor damage is less and recovery time comparable to robotic LRP method. The only disadvantage is that limph node dissection cannot be done at the same time (very minor).

Louis. . . .

To: ProstateCancerSupport Sent: Sat, March 13, 2010 4:54:09 PMSubject: Complications from Retro Perineal Prostatectomy!

I wrote before, explaining that my husband had surgery Feb. 15, 2010.It appeared all went well, only a 90 min. surgery, and home the next day.However, the pain was way more than my husband expected. Not a whole lot of drainage the first day...just what one might think. However, by Friday the incision site was unbelievable black and blue, swollen and causing lots of pain, but not a LOT of drainage or bleeding. Saturday,(5 days post op) clots started to come from the site, and then with the clots drainage. Sunday violent diarehha, and the Monday husband called to see the Dr and asked if the clots, pain and swelling and NOW drainage was normal for so late after the surgery. Doc told us at the hospital, that often patient don't take much pain meds. My husband almost took 35 pills. Anyway, doc saw him that day and said he had developed a huge hematoma between the days he last saw him and this day. He tried to drain the clot in the office, but some

remained. Husband went home and had lots of drainage from site, seemed like urine, but at that time, we did not know. He still had catheter in.Long story short, catheter removed the next day, and husband had only a little urine (1/4 cp) come out, but could also stop flow. Sent him home. Got home and had to pee...but it came streaming out incision site. Back to office, catheter put back in. It was determined he must have had a leak in urethra...and possibly another that led to drainage out of incision site...and why it swelled and drained so.Also husband is having problems holding bowel movements. Catheter is the least of his problems at this point.Now the catheter has been in for almost 3 more weeks, and he is supposed to have a cystogram on Tuesday March 16 to see if catheter can be removed...and if there is any leakage into incision. They may even do a cystascope! A friend who is a dr, said they should also do a ultra sound.

OUR BIG QUESTION. Since the catheter was put back in, my husband has still had quite a bit of pain at the incision site when it still swells. He has lots of thick skin that has developed there! Actual incision site seems healed. We are both surprised that one month after surgery, he cannot sit on a soft donut or walk or stand for more than a half hour. IS THIS NORMAL? Also... We are nervous that if the Dr.finds a problem this coming March 16th he may want to go in and do something... and then we will want to get a second opinion! We have lost some confidence in him. Any suggestions on how to handle this? Should we just come out and say we would like to get a second opinion from U of M Hospital, Hopkins, Cleveland Clinic, or Mayo...since we know this is a very uncommon complication? Any suggestions on this?!If our Dr.s suggestion is also re-affirmed by another expert... we will go ahead with whatever they decide, and most

likely back with our original Dr. Our concern is that our Dr. said he only sees 1 or 2 cases like my husbands a year. My husband is 56, was great shape, and had no other problems besides a rising PSA that was only a 2 at surgery time!His cancer is gone...so we are SO grateful for that. But our anxiety has risen just thinking of all the OTHER problems he could now have!

[Guest guest]

To get to the key points:

>

>

> OUR BIG QUESTION. Since the catheter was put back in, my husband has still had

quite a bit of pain at the incision site when it still swells. He has lots of

thick skin that has developed there! Actual incision site seems healed. We are

both surprised that one month after surgery, he cannot sit on a soft donut or

walk or stand for more than a half hour. IS THIS NORMAL?

>

No -- it's not normal. Compare what he _actually experienced_ to what your

surgeon told you he _should_ experience! Or compare it to the experience of

other men who have had retro-perineal prostatectomy (there are some on YanaNow

website, and some in this group).

> Also... We are nervous that if the Dr.finds a problem this coming March 16th

he may want to go in and do something...and then we will want to get a second

opinion! We have lost some confidence in him. Any suggestions on how to handle

this? Should we just come out and say we would like to get a second opinion

from U of M Hospital, Hopkins, Cleveland Clinic, or Mayo...since we know

this is a very uncommon complication? Any suggestions on this?!

>

Gee -- after things he never warned you about, happened, and after his initial

attempts at repair didn't work -- why would you lose confidence? <g>

Yes, get a second opinion. The surgeon (and his hospital team) has a bias -- he

won't want to say:

.. . . I botched the job.

And (if he botched the job), his skills may not be adequate to fix it.

Find someone independent, and have him/her evaluate the situation.

[Guest guest]

Thanks ....and all.It seems to us, that my husbands surgery was definately not the outcome 95 % of the RPP experience. Just for those who were asking...All the pre-op bowel preps were done, and the surgery site looked good upon leaving the hospital...as I saw it too. However, between that second day leaving, and about 5 days later...the huge hematoma occurred. From straining or what ever - we do not know how or why. From what we are reading less than 5 or 6% have this complication....and the stats do not say why they occur.Husband is now getting better every day...but so slowly. We feel less anxius, and will for sure just get a second opinion before doing any other invasive procedure.We realize now his complication is a rare

occurence! We have spoken to about 5 men in our area who have had this surgeon, and they did fine, with the same surgery, and this surgeon is good and experienced! What we are realizing, and I guess our biggest issue, is when you are in the less than 5% that get this problem...not much is out there on what to expect or do to work with it.Thank you all for all your input. Let's pray for a good outcome on Tuesday.To:

ProstateCancerSupport Sent: Sun, March 14, 2010 3:14:56 PMSubject: Re: Complications from Retro Perineal Prostatectomy!

To get to the key points:

>

>

> OUR BIG QUESTION. Since the catheter was put back in, my husband has still had quite a bit of pain at the incision site when it still swells. He has lots of thick skin that has developed there! Actual incision site seems healed. We are both surprised that one month after surgery, he cannot sit on a soft donut or walk or stand for more than a half hour. IS THIS NORMAL?

>

No -- it's not normal. Compare what he _actually experienced_ to what your surgeon told you he _should_ experience! Or compare it to the experience of other men who have had retro-perineal prostatectomy (there are some on YanaNow website, and some in this group).

> Also... We are nervous that if the Dr.finds a problem this coming March 16th he may want to go in and do something... and then we will want to get a second opinion! We have lost some confidence in him. Any suggestions on how to handle this? Should we just come out and say we would like to get a second opinion from U of M Hospital, Hopkins, Cleveland Clinic, or Mayo...since we know this is a very uncommon complication? Any suggestions on this?!

>

Gee -- after things he never warned you about, happened, and after his initial attempts at repair didn't work -- why would you lose confidence? <g>

Yes, get a second opinion. The surgeon (and his hospital team) has a bias -- he won't want to say:

.. . . I botched the job.

And (if he botched the job), his skills may not be adequate to fix it.

Find someone independent, and have him/her evaluate the situation.

[Guest guest]

,

I don't know if this is helpful or not, but it may reassure you

a little.

I once injured my hand causing a big hematoma that made the whole

hand swell up. It looked pretty bad. I called my doctor and she

said it looks bad but isn't dangerous, let's just see what happens.

It took about three weeks for the swelling to subside and all the

blood to be reabsorbed, but gradually my hand returned completely

to normal. There was no permanent injury, no real harm of any

kind. The big swelling made it look much worse than it really was.

I'm hoping that the situation is similar for your husband. If

it's not getting worse, it's probably getting better.

Best of luck with it.

Alan

[Guest guest]

Guys,

I am considering going back to my original health provider at least for a while. Md is not going to do anything different to than Kelsey Bold(sp). I will recieve Lupron until it stops working in both cases and then I will re-evaluate my options then. Both will only do what my insurance will pay for anyway. And the USA health care is not directed by insurance companies. The one at KS would talk with me and the other althoug I am sure is very good was a smart as (excuse the unclinical terms please). I think MD s test were more thorough and the same conclusions. Md is much more expensive than the other clinic which has a oncology department unfortunately is not specialized. I would be with the head of this department who has treated many PCas before.

Suggestiona and thoughts.

Tom W.

To: ProstateCancerSupport Sent: Sat, March 13, 2010 5:45:42 PMSubject: Re: Complications from Retro Perineal Prostatectomy!

Steve Jordan <mycroftscj1@ cox.net>>>> , in pertinent part:>> If our Dr.s suggestion is also re-affirmed by another>> expert... we will go ahead with whatever they decide, and>> most likely back with our original Dr. Our concern is that>> our Dr. said he only sees 1 or 2 cases like my husbands a>> year. My husband is 56, was great shape, and had no other>> problems besides a rising PSA that was only a 2 at surgery>> time! His cancer is gone...so we are SO grateful for that.>> But our anxiety has risen just thinking of all the OTHER>> problems he could now have!> Consultation with another medic is almost always a prudent> idea.> > Do not be concerned with what

anyone else thinks. This is> Husband’s concern, and HE is in charge.> > Regards,> > Steve JI agree with Steve. A second opinion is warranted and even athird if necessary.Right now, I think the important thing is not to rush intotreatment, but to be sure that no more harm is done and to movecarefully. Clearly, the surgeon did not do a great job. It maybe that he was not experienced enough at performing thisoperation. It may be that he made a mistake. Or it may be thathe just had bad luck. But whatever it is, that's all water underthe bridge at this point.The surgeon may be eager to try to fix whatever went wrong, maybetoo eager. It may be that the problem will resolve itself. Thebody is pretty good at healing wounds.I'm not a doctor and not qualified to make any medicalrecommendation, but if it were me, I would be careful from hereon. I'd try

to find another good urologist, and get a secondopinion. It wouldn't hurt if it were someone who didn't know theman who performed the operation and and wouldn't feel quite asobliged to defend him.I would ask what will happen if nothing is done. Will it getworse or better? If the consensus is that the worst is over,then I'd want to let some time pass and see what healing mightoccur.I know that your husband is suffering. Maybe he needs moretreatment. But if he can heal up without it, that seems like asafer course. If treatment really is required, then the simplestand least invasive treatment sounds like a preferable approach.However, as I said, I'm not a doctor. If the doctors say thatyour husband will get worse, or won't get better, withoutcorrective treatment, then you may not have a lot of choice.If treatment is required, find the best, most experienced doctorto do it. If

that means a trip to Baltimore, Cleveland orMinneapolis, and you can afford that, then consider it. Howeverthere may be a very experienced and capable doctor in your ownarea. The key is to find him or her.Best of luck.Alan