Have written biopsy results for husband

Met with URO yesterday for consult.  I taped the meeting since I knew we could never remember everything.

He tested 10 cores, and 2 came back prositive, occupying 40%.  It's left mid and apex; it was the left side that was hard on exam.  He called it low to moderate agressive, and recommended surgery, with seed implants a close second.

Said there's a 65% chance hubby would have ED after surgery.  Since he has no problems now with his urine stream, the doc said there's a low chance of incontinence with surgery.  Also, he stated that there's a 35% chance that the post surg biopsy may have more cancer.  At least he's honest.

Haven't read up much on the seeds, but he referred us to oncol radiologist.  Haven't heard back from his office yet re the appt., so I'll call personally tomorrow.  If he went for the seeds, Uro said in 2 yrs. hubby would be impotent (I'll have to listen to the tape again re incontinence).  Plus his chances of reoccurence would increase in 15-20 yrs. 

I was wondering if anyone here had seed implants who can tell me his experience.

The Uro seemed knowledgeable, but really pushed surgery.  He's done 200 da vinci's over the last 4-5 years, and doesn't keep stats.  Is 200 procedures  a lot?

Upon the advice of a couple of posters here, I made an appt with Dr. Joseph at Strong (who has done many many more).  Luckily he had a cancellation for Monday, otherwise we wouldn't have gotten in til December. 

Neither doctor has heard of the color doppler that has been mentioned here. So that's it in a nutshell.  Does surgery sound the way to go? 

You have all been so helpful to me.  I'm trying to do the best thing for my husband.  If it were him alone, he would have signed up yesterday for surgery.  I guess I'm just another nagging wife.   

Bedelia, thanks for posting the results.

Of course, most urologists are surgeons, and of course they would be biased toward surgery. Though that doesnt make it a bad things. Soem of the remarks he made to you sound honest at least, the percentages with the side effects sound believable to me.

Seeding can be a good alternative, you owe it to yourself and your husband to talk to a good Radiation Oncoligist, and see if they feel he meets the correct criteria for seeding. JohnT here, and Tudpock, both had it done and all well versed in the particulars about seeding. I am sure they will reply when they see your post here.

I am an open surgery guy, and be happy to talk to you about that option. Plenty of men here have had robotic surgery, so there will be many opinions on that path.

With your husband's biopsy report, and his age, and assuming he doesnt have any major underlying medical conditions, he should still have a full range of choices ahead.

Please keep us posted.

David in SC

Hi Bedelia, not the news anyone wants to hear.

Others here far more knowledgeable than I will be of more help than I can be, but I'll make two comments,

First, as you can see from my signature below, my PSA was 1.5 and there was some concern that the cancer might be more aggressive than it appeared to be from the biopsy. This was raised with me by a Uro from Mayo and my surgeon. Neither made a big deal of it, but I could tell they were concerned. I don't know if 1.84 would cause the same concern, but it would be worth asking about.

My second comment is a request: Please get the slides reread by a different pathologist. Pathology is an art as well as a science. The first pathology I had said 3 +3, the second said 3 + 4. That's a significant difference. If all your husband has is 3 + 3 it's still cancer, but anything less than a 3 is considered (I was told by a urologist) to be abnormal cells, but not abnormal enough to be called cancer. A "4" is a more aggressive cell. If you get two pathologists agreeing he is 3 + 3, and they have no concern about the tumor volume relative to the PSA, then that's one thing ---- and a good thing as Martha would say. If he has a possible "4" in the mix, and/or there is a concern about the low PSA, then that's another, but that's the same as I am, and I am 100% happy four months after surgery and making plans for my 100th birthday party 33 years from now.

Keep us posted,

Sheldon AKA Sleepless

Dear Bedelia:

As JohnT said, with your hubby's stats, it is likely that either seeds or surgery will result in equal cure rates.  I am not surprised that your uro surgeon was promoting surgery and you should not be surprised either.  However, 200 robotic surgeries is on the low side of experienced and I would recommend a more experienced guy if surgery is what you choose.

If you reported the conversation correctly, a couple of the things the doctor said are incorrect.  A claim that in 2 years your husband would be impotent is not necessarily true.  The ED rate for seeds is slightly LESS than surgery, according to many studies.  If your husband is performing satisfactorily today, the chances are good that his post-seeding performance will still be good...even in the long term.  If not, Viagra, Cialis or Levitra are generally effective.  Also, the statement that his chances of recurrance are higher with seeds cannot be proven by research...in fact the long term studies show equal cure rates with surgery...as I said previously.  Of course, each patient is different.

I am personally an advocate of brachytherapy (seeds) based on my personal experience, my personal research and my reading of many heartbreaking stories of the aftermath of surgery.  So...I am admitedly biased but I do not believe any of my comments on this thread or the ones I provided on your original thread are incorrect.  Please feel free to click the link at the bottom of my signature and you will get a good idea of my experience with seeds.

I know this is a difficult time for you...the most stressful time for my wife and I was when we were doing our research, seeing multiple doctors and trying to make an informed decision.  But, if you do your homework, you will be able to reach a decision with confidence.  Yes, you absolutely should listen to your doctors but you must realize that you have multiple choices and, at the end of the day, it is YOU and your husband that must make the call....not a doc no matter how well meaning he or she is...

Tudpock

 

Bedelia, the advice your are getting - as always, is right on target. I can only add my own personal experience as the wife of a PCa patient.

Like your husband, my John's biopsy showed 2 out of 10 cores positive, with one core being Gleason 3+3 and the other 3+4 occupying 30%. The cancer was only in the right side of the prostate and perineural invasion was identified in the 3+4 core. His clinical stage was T1c.

At diagnosis, John was 58 years old, in excellent health with no other medical conditions. Urologist told us he was a candidate for surgery (robotic as well as open) or radiation. In our case, John wanted the cancer out of him and had decided that surgery would be his treatment choice right in the doctor's office.

John had robotic surgery about 7 weeks after the biopsy. We received the surgical pathology report when we went back to have the staples and catheter removed (9 days after surgery). The final report upgraded John to stage III - PT3a: margins clean, seminal vesicles clean, bladder neck clean but there was a single miniscule extraprostectic extension (EPE) noted which changed the playing field at bit. EPE means that the cancer has invaded tissues surrounding the gland. Fortunately, the surgeon expected this and cut a wider margin than he needed to to obtain a clean margin. The cancer had also invaded the capsule in a few areas but had broken through in only one small area.

A radical prostatectomy is a major operation and, as with any surgery, has its risks. The pluses are that you have a definitive pathology report vs. a biopsy which is a estimate of the disease. The minuses are incontinence and ED for most men, although the duration and severity of these differ greatly among patients.

Our surgeon has performed hundreds of robotic surgeries and even more of the traditional open. He is the head of the prostate cancer division at our local hospital, which is considered a major medical center in Westchester County, NY. He proctors other doctors learning the robot and was trained at Johns Hopkins in Baltimore. We could have gone into NYC to a world-class hospital but the distance and the cost would not have worked for us. We were able to speak with men who had surgery with this doctor and a couple who went with radiation treatment including one who had seeds. The seed guy had no problems with his treatment except that he was told to stay away from small children and pregnant women for a while since the seeds were radioactive. The radiation guys had no major issues.

With any PCa treatment, there is simply no way to know which is going to work the best since the only way we have of knowing whether treatment was successful is through post treatment follow-up. No matter what treatment your husband chooses, he will need to continue PSA testing and regular doctor visits to monitor the situation.

I know that you are getting alot of information and that your brain must be full by now (mine certainly was). I wish you the best, and please keep us posted.

Bedelia. You're getting good advice from the professionals and from the forum. Remeber no two PCa situations are ever really the same, there are merely similarities here and there. You have to build up a picture of what your husband's overall situation is. Information from the forum is just one part of that process. I hope may experience too can help guide the pair of you. On the day I was told I had PCa my urologist gave me lots of advice even though he later handed me over to someone else for surgery as he didn't do the Da Vinci. But he recommended surgery of some sort as opposed to radiotherapy and his reasoning was this: If I started with surgery and the cancer returned at a later date, then radiotherapy would still be possible. BUT if I started with radiotherapy and the cancer returned then additional radiotherapy would not be possible as I would have already had my maximum permitted dose, AND any surgery after radiotherapy would be very much more complicated, as there would be a lot of scar tissue in the area that would make it very difficult to remove anything with ease. An additional aspect regarding the order of treatments is your age. If the cancer returns after say 10 years then it will have been less complicated to have had the surgery when you are younger and fitter and the radiotherapy when you are older than to have the surgery when you are older. I am also suprised that you have been told that 2 years after seeds there will be impotence, as thought he is guaranteeing it rather than warning that it may be very likely. (But, as so many otgher threads in this forum show elsewhere, impotence is a very complex issue and not as clear cut as it may seem when it first rears its head. Impotence among PCa guys does not seem to be anything like the same conditon as it is with guys who are impotent without having had PCa.) Take time to absorb the facts and weigh things up. But also remember to take a break from all this complex stuff and fit in some kind of enjoyable treat (My wife and I had a week in the Champagne region of France - thankfully it is only a few hours by road from where we live! But we also enjoyed all kinds of simpler shorter moments in the days and weeks leading up to surgery.)  Even a long journey begins with a single step. Best Wishes Alfred  

Thanks everyone! We need encourgement now, as hubby is pissed off at the world. Hopefully, the anger phase will pass soon.

We'll have the 2nd surg opinion on Monday, and we meet with a onco rad on Thursday. He's pretty sure he wants surgery, but I'm insisting he gets more info on the seeds. He really just wants to get the cancer out, and is ready to deal with the side effects. I'm not sure he realizes how bothersome they can be, as he avoids reading about it. He already talked with someone who went through surgery, and it depressed him.


Hopefully, by end of next week, we'll have a made decision. I'll keep researching in the meantime.

Hi Bedelia,

Unfortunately, seeds in Jan 08 did not work for me.  So, on to hormone therapy - Lupron.  Even worse, radiation proctitis with burning in rectum and occasional bleeding (minor for the most part)  showed up in Apr / May 09.  Forty hyperbaric oxygen treatments for the proctitis apparently have not helped - per sigmoid exam yesterday Nov. 5.  Will talk to hyperbaric doc on Monday about alternative treatment. Metamucil and lots of water help somewhat.

So, be aware that radiation proctitis is a possible side effect of the seeds and may occur many months after treatment. 

Having said that, I would still choose the seeds because they reportedly can be as effective as surgery and are far less involved. You will note in my signature that I am 70, so ED was not a major concern.  I wish that I did not still have the cancer, but I would most certainly have had great difficulty with the side effects from removal of the prostate ( I am not a good patient ).

Wishing all that's good for you.

Gene in Md

Another possible option that is usually overlooked and not endorsed by most of the mainstream whom make it seem perhaps worthless, and there are still others protocols and choices that can do wonders, too.:

ADT3 combo hormone therapy(lupron+casodex+proscar) drugs for 13 months (approx.), go off these and take only proscar or avodart or similar family of drugs as maintenance. What??? That sounds insane and have not heard that from my doc?????  Well here is how insane it has been for a guy I know about in Michigan (Rick K.), had similar low stats like you do herein (psa near 11.0 and 2 positive cores).  Did these drugs way back when this even more experimental (around  1995 era). You can google or research Dr. Leibowitz and some others to read all about this concept/protocol. Also, about the numbers of patients that have done this protocol.

Rick had rebiopsies taken two times years afterwards and nothing found in those biopsies  (cured? no- unlikely). Here's the news:  normalcy as manhood and body functions, still can choose most any treatment he may wish to take (surgery still possible although more difficult on a shrunken gland-fyi). His psa finally went up some last year (12-13 yrs. later) he decided to resume another round of ADT3 and then quit and take proscar for maintenance like in the first round. Rick is no hurry to get a major invasive modality at this time, which is his right as any kind of patient and his choice as it should be with any kind of patient. So, currently Rick has kept PCa at bay for around 14 yrs. and counting.....this is not a sane possibility for others????  Is their anyone whom should look at this and decide for themselves???  Is it more profittable to subject a patient to surgeries, radiations and other major modalities that in fact cost 10's of thousands of dollars?  Is their alot of profits in any treatment on PCa (usually) but not necessarily every scenario or every drug therapy that you might be able to find about out. Is everything on PCa easily laid out in front of patients for them to 'see' like all or the majority of options that could be available.....NO-NO-NO. I got many opinions and discussions with various treatment centers, various types of docs, experts, many forums, books...etc.  Was it easy to find anything other than what is called normal treatments?  As patients looking for "all" possible scenarios we are not given that kind of information. Why not??  It could not be in our own interests...whom is messenger???

I have talked to Rick a few times, he is personally pleased as heck with his journey and outcome. Yeah I guess he would be biased, he also is totally normal in all his functions and still has all those choices....that he supposedly had to choose asap(1995) from recommendations from the first few docs he saw, whom anxious to perform, whatever.

There are other patients whom never had major protocols on their PCa, a famous doctor whom is the father of inventing Cryo-therapy(decades ago) is a PCa patient. He went totally the drug therapy method with emcyt and is still practicing medicine and doing ok, and this is around 10 yrs.+ dealing with PCa.  I have not had the pleasure to interview him and ask questions, if he saw huge benefits in any modality don't you think he would have taken them????  I would not try pass judgement on this man or his motives or his expertise(s), you have not walked in his shoes, nor know comparitive 25% on PCa of what he most likely knows.  He is one of a handful of doppler color sonographers, considered pioneer in this field also.  Interesting he did not do what is widely sold to 'patients' from other doctors and institutions. 

Contemplation consideration- suppose you chose this(ADT3 or other drug methods) and bought 5-10 yrs., and during these future years, another breakthrough occurs that is better or enhances your long term chances (these things are in the pipeline and will become available sooner or later). Maybe you could be cured or further prolonged and remain totally intact maybe with normal body functions...which is in your best overall interests? Negative side maybe you can die of PCa...which can happen in all the other treatment-scenarios, also. Never a guarantee with any modality on PCa. Alot more choices out there, than we are given awareness of.  Now if you would like to call Rick and tell him how wrong his choice is or was.....I have his phone number and he is pretty well versed on PCa issues overall, also.

Is PCa a minefield, the twilight zone, the jungle?  Well you decide, especially after you know most all your options....in your best interests.

Post Edited (zufus) : 11/7/2009 7:17:28 AM (GMT-7)

Bedelia, I found this interesting article about ADT3 treatment. As you can see, there are significant side effects with this treatment, as there are with any other treatment.

http://www.lef.org/protocols/prtcl-138m.shtml

Zufus, do you have any idea what the cost of this treatment would be over 13 or so years? I agree that there is alot of information out there and that doctors don't always clearly set out the options. But, we must be careful to not mislead others into thinking that one treatment is preferable or less expensive than another.

Every man is different and can tolerate different side effects.

Zufus, sorry about the 13 years ... my head knew it was months but my fingers insisted on typing years!!!

Your post said it all - and very well indeed! You are a wealth of information about PCa treatment options and I am continuously amazed at your knowledge. Keep it coming!

Thanks Sephie for the link.  I checked it out - a lot to absorb.

My husband's main concern is to get rid of the cancer before it spreads.   I'll let you all know how our second consult goes tomorrow.  At least we both feel a little more positive today than we have all week. 

David (Purgatory),

Thank you for the well wishes.  You are an inspiration to us all.  My wife and I pray for you every night (and for ourselves as well ). 

My latest, just for the record, is that the hyperbaric oxygen treatments (40 so far) apparently aren't working. I see the hyperbaric center doc tomorrow and will get his views after he sees the report from my gastro.  My gastro told me after my sigmoid exam this past Thursday that the treatments were not working.  So, will see what the doc says on Monday.

I'm leaning toward adopting some of the protocol that Bob Wall (you can google him) used for rectal bleeding.  Will consult with my primary care doc, uro, radiologist, and the hyperbaric center doc before doing that.

In the meantime, I hope you can finish your rad treatments and get some relief from your constant battle with PCa.

Gene in Md