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Husband's Test Results; Dr's Experience with Robotic Surgery and His Comments

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Posted 8/20/2007 6:39 PM (GMT -6)
Hi Everyone,

My husband met with the urologist today. Good News: His CT scans and Bone Scan were normal. The extra xrays they took show arthritis in his back.

Troublesome News: The urologist has only performed five robotic surgeries and he's doing his sixth one tomorrow. The urologist said he has to take the nerves because the nerves are a mechanism for the cancer to spread. The urologist didn't say anything about incontinence. The urologist also said that my husband might need radiation, too.

Does this all sound right to you? I thought the nerves could be spared? And I thought if the prostate was removed, then radiation wasn't necessary?

Thank you so much everyone!

Maria Teresa
Posted 8/20/2007 7:01 PM (GMT -6)

Mariateresa:

First of all, what wonderful news about the CT scans - what a load off your hearts and minds.

As for the surgery, I cannot comment on that as I had proton, but all I have read from the guys who have had surgery is that it's very important to find a surgeon who has done alot of these procedures.  I'm sure they will give you their suggestions on this.

Again, glad to hear the CT scans gave you good news and thoughts will continue to be with you.

Dutch

Posted 8/20/2007 7:11 PM (GMT -6)

Hi Maria Teresa,

Wounderful news on the scans! Congratulations!

On the doctor topic, I fully agree with Dutch that one would like to have a surgeon with much more experience for your husband's situation. 

Do you know if he'll have an experienced surgeon assisting him?  Often they do this and everyone in the room, from what I heard, can see with the surgeon sees (except not in 3D).

In addition, I have heard that some folks in your husband's situation have had seeds plus some kind of radiation therapy (but I'm not an expert at all).

Just some thoughts.  Also, I forgot if you said you sought a second opinion.

Our prayers will be with you in your decision-making.

All the best,

Idaho

Posted 8/20/2007 7:24 PM (GMT -6)
I just went to the Henry Ford Health System website and completed a Urology Consult Request Form. Henry Ford Health System's Vattikuti Urology Institute has performed more than 3,300 robotic prostatectomy operations. They say on their website that thousands of patients from around the world have come to the Vattikuti Institiute for their robotic prostatectomy surgery. Now I'm just kicking myself for not requesting a consult back in May when my husband's PSA first alerted us to a problem!

Yes, please keep praying! Prayer is the greatest untapped power in this world! I pray for all of you, too!

Maria Teresa
Posted 8/20/2007 7:25 PM (GMT -6)
Maria Theresa,

Glad to see Rod's test results were what you hoped for.

You definately need another opinion and quite possibly another surgeon. The idea of someone with SO little experience doing this type of surgery - you want to be the 1000th person, not the 7th.

You need more information about what to expect if surgery is your treatment or perhaps Rod might be a candidate for another treatment.
Could you post more information on him...his biopsy results, his Gleason grade, his PSA? If you already did, I'm sorry I must've missed it.

Remember - there's strength in numbers,
Susan
Posted 8/20/2007 8:17 PM (GMT -6)
Hi Maria Teresa,
It sounds positive all the way up until your surgeons sugestions. But my biggest stopper is his six robotic surgeries. I always had the notion that doctors understandably have to start somwhere, but, not on my body. Espeacially now that I need the best skill and experience available in my medical staff. Don't write the sex life off yet. I don't agree for his reason's why to remove the nerve bundles without first inspecting them. I'd get a second opinion.

Tony
Posted 8/21/2007 4:39 AM (GMT -6)

Maria Teresa,

We here of course don't know everything your physician knows about your husband.
But we do know many,many physicians!

DO NOT AGREE TO ANY TYPE OF SURGERY WITHOUT A SECOND OPINION.  PERIOD.

Your latest news indicates you have some time to see another physician and get in line for surgery with him or her if you so choose. 

I, like Tony, am suspicious of a physician making such a statement about the nerve bundle?
Maybe there is some information we do not know. 
Considering only what you have said, Perhaps the physician is just giving you "worst-case-scenario" - at worst giving you some insight at the physician's historical success at avoiding severing the nerves.....

Regardless, the second opinion is absolutely necessary.
After you make the appointment, your slides & data will be sent & faxed to the second physician.
I don't remember where you live or where you are seeing this first surgeon.
But, if Henry Ford is at all accessible to you for the surgery and follow-up visits, I personally would not hesitate to switch to a major facility such as this and its team of physicians.

Even if you stay with the first physician, the second opinion is more than an exercise.
It is your right  and you need to KNOW what you are choosing,  especially if you decide to go with the first surgeon.

Your husband will likley have incontinence for up to 12 to 16 weeks post surgery.  Some have almost none.  Some have more.  Your physician dismissing Erectile Dysfunction to injections and not mentioning incontinence seems another sign of where he or she is on the learning curve.
As for the possibility of the need for radiation, until the post-surgery biopsy, you will not know.
If there is verfication of capsular penetration, I would assume a physician would FIRST consider Hormone Therapy before post-surgery radiation.

Perhaps the physician is telling your husband all of these things and not you.
We don't know everything about his case.
Regardless, make the second opinion appointment ASAP.
If your physician is worth his salt, he will welcome a second opinion.

Your Friend,

CCedar
ICTHUS!

Posted 8/21/2007 6:20 AM (GMT 0)

mariateresa,

What onderful news on your husband's scans!!  This calls for a celebration!

I am bzup's wife and while I have read hundreds of posts on this forum, I have not commented up until now.  PLEASE consider a 2nd opinion as to treatment, specifically surgery in your husband's situation.  When my husband was diagnosed, we spent a couple of months researching and consulting with physicians.  We spoke to 3 doctors in person and consulted with 2 by telephone before settling on Dr. Vipul Patel in Columbus.  Our local urologist was qualified and willing to perform a radical surgery, but did not have a lot of experience with the robot.  He suggested we consult with one of his partners OR with a doctor from one of the major hospitals in the area.  Next, we consulted with a radiologist to discuss seed implants (our first choice of treatment).  The radiologist was very qualified to perform the implants, but after learning more about the potential difficulties, we reconsidered our thought on surgery.  Third, we consulted a highly regarded surgeon at Duke.  He was VERY qualified to perform radical surgery, and we really liked him, but if we were to opt for surgery, we prefered the robotic.  Next, I emailed the Cleveland Clinic and asked about Dr. Gong.  Dr. Gong graciously called us to discuss our particular situation.  He was very well trained, but agreed that Dr. Patel at OSU was an excellent choice for a surgeon to perform a robotic surgery.  

My point in offering this information is that seeking multiple opinions is a great way to get comfortable with the terminology, the procedures, the options, the variable success rates and outcomes.  Please consider getting at least one other opinion.  I have read wonderful things about Dr. Menon (sp?) at Michigan.  You only get one chance at the operation and you have every right to expect the best outcome for your dear hubby.

As for sparing the nerve bundles - this is an excellent reason to seek out another opinion.  I don't think I'd feel comfortable hearing that news from one doctor.  If you seek other opinions, and those docs concur, you will rest easier knowing that you have double-checked his theory.

Here is an excellent article that our son forwarded to us, yesterday. http://www.cnn.com/2007/HEALTH/conditions/07/24/cancer.prostate.reut/index.html

Best wishes. Our thoughts are with you as you work through the decision-making phase of your journey.

This site has been a blessing to those of us who have personally traveled on the road to Pca recovery and cure.

Posted 8/21/2007 1:08 PM (GMT 0)
Hi, MariaTeresa (and BZup's wife, too). Just want to say a big ditto to all above along with congrats for the clear scans. We spent a few frantic days fearful of those "hot spots" before hearing we were all clear. Totally frightening.

Prostate cancer is not only NOT a death sentence, it's NOT a death sentence for continence or future sex.

Everything we've read to date is to get a doc who has done at least 100 robot procedures. That's the curve where a good surgeon becomes truly proficient with this machine (with my apologies to those out there with less than that number under their belts).
Posted 8/21/2007 7:27 AM (GMT -6)
Maria Teresa

First great news on the bone scans that's wonderful news. As for the rest I agree with what has been stated by the others about getting a second opinion. When first diagnosed I was told by the surgeon that he would be taking at least one nerve bundle and the biggest reason I was given by him was that was the way he did it, he too felt it needed to be taked out to be more sure of getting everything. He also only did about 20 to 25 PC surgery a year. I found a doctor at a state university hospital in the cancer research center and this was all he did was study the prostate. Although he had only preformed about 100 robotic procedures before me I felt comfortable after meetig with him and he told me based on the biopsy reports that he should be able to save the nerves and take just the prostate. It has now been 7 months since my surgery and so far so good and everything is working pretty well, not that one does not go through ups and downs and it's the same as before. I have been happy with the results to date keeping it all in prespective. I would highly recommend a second opinion and another view I am glad I did, at least then you can validate if there is something more to your husbands situation that requires the type of surgery that your first surgeon has detailed. At any rate good luck and our prayers are with you.

norskie
Posted 8/21/2007 7:53 AM (GMT -6)

Maria Teresa,

PLEASE listen to what everyone else has suggested.  Get a second opinion!!  In most cases a robotic surgeon that feels both nerves need to be removed due to the extension of the cancer will recommend a good open surgeon because this situation is when the "feel" is important.  Your contact with Menon's group was the right move.  Follow that up with an appointment.

Praying for you.

Tamu

Posted 8/21/2007 10:56 AM (GMT -6)
Maria Teresa,

While the choice of a rookie robotic surgeon is a bit uncomfortable to most, I assume he has a long track record for doing open prostatectomies? If so, and he's got data to back up his talent, stay with who Rod feels comfortable using. If he isn't (and Rod isn't), find a suitable surgeon. Rod's cancer isn't waiting for him. It should be treated sooner than later. I'd be making sure the surgeon of choice has exceptional urinary function outcomes and hope for the best on the prostate nerves bundles. Be ready for the same reaction from every surgeon you meet with Maria Teresa. Rod's surgeon is right... both nerve bundles have to go. The surgeon has to do a wide excision with a clinical pathololgy such as Rod's. To do anything else is irresponsible. So far, evertyhing this surgeon has told you has been right on the money

Swim
Posted 8/21/2007 1:25 PM (GMT -6)
Hi Swim,


I'm just leaving for the week to visit several of our growers in California.
I'm glad you remember what Rod's pathology is!

Maria Teresa, You will get better responses to your posts if you put a summary of information in your signature line.  (While signed on, look for the "Control Panel" button at the top left of the page.)

If Swim believes the pathology suggests hurry, then by all means hurry.
Still, I had my surgery scheduled with some very qualified surgeons and while waiting went for my second opinion - the week before surgery. 
If possible, I still think it is a good idea to get a second opinion - especially with a more complex pathology.
Bizup was much more eloquent about the reasons than I am being here.
I almost skipped mine for financial and scheduling reasons - and the 2nd opinion ulimately was to go along with the first physician's plan.  I'm still VERY glad I got a second opinion.  Do what you can. 

Swim's comment about the physician's success rate with urinary function recovery is so very important.  However, that information might be a little anectdotal - especially if supplied by the physician!  I do agree that if the physician has a lot of experience off the da Vinci machine - both laperascopy and open, it could be a good fit.

I also encourage you not to wait.  My Gleeson scores suggested I could wait months.  My pathology after surgery showd the tumor larger than expected and touching the edge of the gland.

Godspeed!

CCedar
ICTHUS!

Posted 8/21/2007 2:21 PM (GMT -6)
Swimom and Cedar Chopper make some great points. I agree that an open procedure by an experienced surgeon (who Rob feels comfortable with) would offer the same high level of treatment as that of an experienced robotic doctor. That said, if time allows, I would still seek out at least one other opinion. Maybe your husband can get on the surgery schedule and during that time he can try and get another opinion.
Posted 8/21/2007 2:26 PM (GMT -6)
Have a good time in CA Cedar!

I am not trying to firghten Rod into a huge hurry. I'm suggesting his clinical stage says "hey, lets get to a good surgeon (or whatever) and get this prostate cancer treated. A Gleason of 3+4+5 in several cores and in high percentages, isn't an indolent cancer. Perhaps having Epstein (or one of the other pathologists) review his slides would bring a different response but, I wouldn't delay seeing another surgeon waitng for that second biopsy opinon to arrive in the mail. Whatever his choice is and whom ever he chooses, should be a Physcian with whom Rod holds great confidence. If that means shopping around, he still has a little time in which to do so. Most Doc's want 8 weeks from biopsy to surgery anyway.

I am also curious as to how many open prostatectomies his current surgeon does annually? If he's good and experienced, and Rod is comfortable, consider sticking with a man who so far, has been pretty darned open with his opinion of Rod's situation.

Maria Teresa and Rod...make a confident decision and we'll help you through it from this end. Good Luck!!

Swim
Posted 8/21/2007 6:45 PM (GMT -6)
Bzup's wife mentioned Dr. Vipul Patel at The Ohio State University. That is where my husband's urologist said he received his Da Vinci Robotic Surgery Training.

Maria Teresa
Posted 8/21/2007 7:24 PM (GMT -6)
My husband's urologist is on staff at Providence Hospital; Garden City Hospital; and William Beaumont Hospital.

Years In Practice:
36

Board Certification:
American Board of Urology

I checked RateMDs and there was one review and it was positive.
Posted 8/21/2007 7:43 PM (GMT -6)
My thoughts are scattered all over the place this evening.... I asked my husband about the open prostatectomies, but it wasn't discussed. I read swimom's, "isn't an indolent cancer". I looked up the word "indolent" and that is what I've been thinking, too, that we're not dealing with a slow growing cancer. I feel like we have to hurry up and get this thing out! The original urologist said the robotic surgery is booked until October, but he told my husband that this wouldn't put him at risk.

I have another question: Is the nerve sparing done just for sexual function or is it done to also preserve urinary continence?


Maria Teresa
Posted 8/21/2007 8:32 PM (GMT -6)
Maria,

We have to be neighbors!!! You mention Beaumont, Prov and Garden City! Hello neighbor!!!

Now..you relax. Not being indolent does not translate into run to the nearest hospital!! Rod has a bit

of time before he needs to make a decision. Being in this area you have choices, almost too many good places to go!! As long as your insurance is cooperative, you have so many great places to seek advise. St. Joes has the cyber knife they've been advertising. I am wondering how much they have done, if any prostate cancer treatment? St. Joes was sure good to Paul (DH) in 95. We prefer St. Joes ourselves. There's Beaument (awesome :-) ), DMC (fantastic :-) ) and U of M ( premier :-) ) and of course, Menon at Henry Ford  :-) . The only place I'd personally shy away from because of its size, is Garden City Hosp. Should they have a high volume urological surgery team, then consider the small community hospital. Maybe they do! Dr. Fred Lee came from Crittenton so anything is possible!!! He's one of the world's most famous PCa ultrasound specialists. I believe he's still in practice somewhere in this area doing color doppler ultrasounds.

Good Luck my dear. Take a day off :-) Take a breather and go see a good comedy or something. Sometimes its good to just do nothing for a day. Clears the mind.

God Bless,  Swim

Posted 8/24/2007 7:17 PM (GMT -6)

Maria Teresa,

I'm greatly relieved to read that you are in touch with Dr. Menon.  He is one of the most experienced da vinci surgeons in the world.  I considered having him perform my surgery. One of the main reasons I went with Dr. Vipul Patel at Ohio State was that my insurance would cover, in addition to the medical treatment costs, all the travel and lodging, etc.

Regarding the question posted above about how a surgeon could be over 1,000 surgeries, I can answer that. My surgeon is doing 5-6 surgeries a day, 3 days a week. He is now at 1,700+ surgeries. Menon is similar.  There are no more experienced da vinci surgeons anywhere in the world.

Regarding nerve sparing, DO NOT GO TO your current urologist who expressed doubts about being able to spare the nerves.  Let an expert like Menon or Patel or one of the other top guys make that judgement call. With da vinci, nerve sparing is the norm, not the exception.

I read your other thread in which you expressed (understandably) your frustration at your urologists slowness in attacking this disease.  It is regrettable but not necessarily a complete disaster.  This is a comparitively slow growing disease and you are in touch with a top Doc. If anyone can treat this disease, Menon can.

BTW, I'll just mention that you may want to confirm whether your insurance has any additional resources available to you, as a cancer patient. I found my ins (UHC) has a cancer resource center. When you're diagnosed, and you call them, they basically open another insurance policy on you that provides access to 20 "centers of excellence" for treatment.  Depending on who your insurance is with, you may have something similar.

Best regards and you will be in my prayers

Posted 8/25/2007 6:43 AM (GMT -6)
Maria,

I don't want to put you on information overload, but I think swimon has given you some excellent advice on non-neverspaing surgery and time being of the essence.

I interviewed Dr. Menon on the phone before my RP, and he suggested I do a non-nerve-sparring RP with him, but he wanted to waint an additional 6 weeks to let my prostate settle down. My PSA had risen for 24 to 39 in a month. I'm still puzzled that Menon was still proposing a nerve-sparing procedure.

My local urologist explained to me that most PCa cancer patients have time to wait, and MOST are candidates for nerve-spaing RP, but in my case, he said DON'T wait and don't risk leaving a lot of cancer behind --- we're looking for a CURE here.

I had my open RP 10 days after my biop --- and am glad I did....I still had to do radiation, which would have negated the nerve-sparing procedure.

We're all rooting for you!
Posted 8/25/2007 9:58 PM (GMT -6)
Hi sterd82,

I may be on information overload ... :-) Just for clarification...you wrote, "I'm still puzzled that Menon was still proposing a nerve-sparing procedure", is this in reference to my husband because he doesn't meet with Dr. Menon until next Wednesday so we won't know until then what Dr. Menon recommends. Maybe, he too, will say that the nerves have to go.

I feel like I carry all of you in my pocket and I've been telling people how kind, supportive, and knowledgeable everyone has been!

Love you guys!

Maria Teresa
Posted 8/25/2007 10:07 PM (GMT -6)
Hi naimnut,

That is a great suggestion about contacting the insurance company to see if they have additional resources available to my husband as a cancer patient. I will contact them.


Maria Teresa
Posted 8/26/2007 8:43 PM (GMT -6)

Maria,

I was puzzled that Dr. Menon suggested that I do the nerve-sparing procedue.  In all fairness, it was only a phone consultation, but he had my biopsy information.

I'll be intereted in how your meeting goes --- he's considered to be one of the best.......

Posted 8/26/2007 9:06 PM (GMT -6)
Maria Teresa ~

We're keeping you both c lose in thoughts and prayers as you continue to move forward…

In Friendship ~ Lee & Buddy

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