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Posted 12/18/2010 8:19 PM (GMT 0)
Hi everyone, as of Tuesday (it is Saturday) this past week, my husband - he is 39 years old, has been diagnosed with prostate cancer. He is active Army, but in the process of retiring, which complicates things. He has been referred to have the Da Vinci procedure at a small country surgical facility, with a poor rating. We go for his consultation on Monday. I have found a list of questions to ask the surgeon, but think they are pretty standard would love some input from those who know. Questions you may have wished you would have asked beforehand. Since he is not going to go to "the best" for this surgery, what would be the minumum amount of surgeries the Dr should have performed? I am an information junkie, so would greatly appreciate any info you are all willing to share. A bit more info on him. He had 3 PSAs, all high....18, 12, 10.6 His biopsy came back "ATYPICAL' with one of 10 specimens, the URO at the Army hospital didnt think that was acceptable so he sent it off to a pathologist friend of his in DC. She then reported he has cancer and a GLEASON of 3+3=6 (guess that is how it is reported) He has just gone in for a bone scan - the DR called us in and said, "see how this hip is darker than the other?" not really, but ok will take his word. He said it may be due to the way he was laying, but wanted a repeat in 3 months. He had his Abdominal CT that evening as well, but we havent heard those results. So we dont yet know if it has spread. I know it is silly, but I am concentrating on things I have control over, such as.....what should we bring to the hospital with us, what type of pants work best to come home and recover before the Cath is removed.

As I reread this I feel it is confusing and not organized, but the best way I can explain. I would so appreciate your time and effort to help explain what we should expect.

God Bless.
Posted 12/18/2010 8:32 PM (GMT 0)
Susan, sorry to hear the bad news. Your husband's age would make him one of the youngest or perhaps youngest of the gang here. Time to slow things down, so that the shock of the news doesn't cloud your thinking, or decisions.

I assume that his 3 PSA scores were in this order: 10.6 - 12 - 18, in that order? Not the way you listed them.

Did they check him first for any signs of prostate infection which could raise the PSA numbers?

Did he have any DRE's (Digital Rectal Exams) along the way? And if so, any of them positive?

So it looks like he had a 10 core prostate biopsy done, correct? And a second opinion said that 1 core of 10 was prostate cancer,
and it was a Gleason 6?

If so, that is generally better news when dealing with PC, as that is the lowest level of the cancer. Did they say what % of cancer was present in the one core?

There is no way you would want your husban to have a robotic or any other prostate surgery done at a small hopsital with a bad reputation. What other options do you have?

Most would agree, the surgeon, whether it be robotic or open, or a combination of both, should have experience in the several hundreds at least.

Good luck, and keep ups posted

David in SC
Posted 12/18/2010 9:05 PM (GMT 0)
Susan I'll put my 2 cents in here. I am new to the forum. 57 years old and diagnosed in October Gleason 3+3.

This site is great and will help you a lot.

I knew from day one I wanted this problem gone the sooner the better. I had the Da-Vinci done last Thursday. I did not ask the Dr. how many he has done. I didn't care. Someone has to be in the first 200 he does. I do know that I liked him and trusted him.

I was home the next day and went out for supper last night. I'm a little sore but not bad.

I don't post, I am a lurker. So thank you all that do post on here. It has calmed me down and made me realize that I am just one of many who have to deal with this.  I should also add that you have plenty of time to work with this and you have alot more choices than surgery. That was just my decision.

Joe

Posted 12/18/2010 9:07 PM (GMT 0)
If there's any any possibility that there has been a spread of cancer to the hip, wouldn't it make sense to hold off on any discussion of surgery until that question has been answered?

Also, with one core showing Gleason 3 + 3, why not wait until after his retirement, when you will probably have access to better treatment facilities? His military retirement benefits will still cover the treatment under TRICARE, would they not?

What part of the world are you in? When you say "small country surgical facillity" do you mean that it's in the States, but out in the boondocks, or do you mean in some small third world country?

It just sounds to me as if the whole process is being rushed, and moving way too fast. Take a deep breath and slow the pace down a bit. You can get a lot of questions answered here, but please take the time and don't panic.
Posted 12/18/2010 9:12 PM (GMT 0)
The PSA results are in the order listed, highest to lowest. The 18, then they put him on antibiotic, and it lowered to 12 a week later, then once off the antibiotic and waiting a month took the last at a 10.6. He has had a DRE, only one with his primary care DR., and he didnt say anything at all to my husband, although he stated it didnt hurt at all.

I too feel as if we shouldnt be going to a small surgical center, but that is where the Army has sent us, and as I said the Army part complicates things. He is scheduled to have his retirement ceremony Feb 24th, so he is needing to have treatment before he gets out. He has just decided to try to extend that retirement due to medical issues, and am hoping they will approve it so that he can have time to heal.

He did have a core biopsy. And yes, you understood correctly. Although I am not sure I am explaining it correctly.

Joe - My husband feels the same, have cancer - want it OUT! He is really not concerned about all the other details, just wants it out. So, I am the one who gets the info. I know you might not write back, but would love to hear how it went with you and what you are going through now, since you just had it done.
Posted 12/18/2010 9:19 PM (GMT 0)
Small country facility = small town in NC.
Posted 12/18/2010 9:38 PM (GMT 0)
Susan,

My uro/surgeon had done between 40 and 50 DaVinci's prior to mine, but he has done hundreds of traditional surgeries over his career.  He's in his early 60's and highly regarded here in the area.  He told me he would do it traditionally, if that was my preference, or by DaVinci, and I chose the DaVinci.  My brother, who is an OB/GYN, spoke to a number of his urologist associates, who told him that in their opinion, after a dozen DaVinci's, you're probably about as good as you're apt to get.  I know that's not a popular opinion on the site, but all I can say is that my guy did great work.

I talked with him frankly prior to surgery and asked him how many DaVinci proedures he had performed, whether he had any bad results (answer: once nicked a bowel and repaired it); and whether he would choose traditional open surgery or DaVinci, and he said that all things being equal, he would opt for the DaVinci procedure. 

A good doctor will not be offended by even the frankest of questions.  Ask them whatever is on your mind.  If they seem reluctant to answer or offended, then I would be worried.

I worked for the Navy for 30 years, and have seen a lot of people retire from the service. I still wonder if your husband couldn't make a case that PCa surgery is not something to be rushed into in order to meet a retirement deadline.  If they refuse to let him retire until he is treated, then I would see if I couldn't take leave and have it performed at the hospital of your choosing, maybe one of the larger military medical centers. The condition has been noted, and I would think he could conclude treatment of it after retirement.  Haste is not advisable. 

Posted 12/18/2010 9:44 PM (GMT 0)
Susan,
Take your time, research, learn all you can, then make the decision. NO HUGE HURRY JUST YET. Hang around here. So many guys are so helpful.
steve
Posted 12/18/2010 9:51 PM (GMT 0)
Susan

You need to get your husband in a REASONABLE amount of time to a recognized center that is noted for cancer treatment…specifically prostate. Your stated numbers for the PSA and his pathology don’t quite mix. I’m not saying that it is imposable however the numbers don’t work for me. I would recommend that you’all do a bunch of reading, get a new consult with a second urologist which may involve re-biopsy and then compare notes with oncology, radiology, and your current physician who must be suspecting that something is off. Then make an informed decision. The "get it out option" which is what I did isn’t a walk in the park procedure. This is a life changing event. You need to spend some time completing due diligence on this…I really wish you nothing but the best. Oh, I’d also recommend establishing contact with one of the other wife type persons on this site…your going to need someone to vent with and we really have some classy women here.

Hero

Posted 12/18/2010 9:55 PM (GMT 0)
First, SLOW DOWN!! With Gleason 6 that borders on being "Atypical", there is no need to rush into anything!! Especially robotic surgery performed by an amateur!! Almost nobody dies of Gleason 6 prostate cancer...YES, get out of the Army FIRST..Army doctors don't see very much PC, they have little expertise in this field..The doctors in Tricare see much more of it and are better prepared to treat it..You want any robotic surgeon to have performed at least 300 radical prostatectomies before you let him work on you...They all lie about the side effects, especially the risk of impotence, a major issue for a 39 year old man..

Obtain a copy of Dr. Pat Walsh's book: "A Guide to Surviving Prostate Cancer"..Read it cover to cover. The information it contains is invaluable. But since Walsh is a surgeon, (one of the best) the book leans in that direction slightly..To get the opposing view, "Invasion of the Prostate Snatchers" by Blum / Scholz presents a viewpoint you should be aware of..."A primer on Prostate Cancer", now somewhat dated, by Dr. Steven Strum is still a good read...Now, armed with this knowledge, you can talk with doctors and have much greater understanding about what they are talking about and have some educated questions to ask them...

The fact that his PSA dropped dramatically with antibiotic treatment is a good sign and perhaps those biopsy slides need to be read by a REAL expert, Epstein at Johns-Hopkins is one, to be SURE that Gleason 6 is really Gleason 6....When you are 39 years old and about to undergo MAJOR medical treatment that can have SERIOUS side effects, you must be SURE that your husband really has cancer....In your case, a second biopsy focused on the area where they found the abnormal cells might be advisable just to verify the existence and or the extent of his cancer.. By focusing on prostatitus (infection) which was causing a large part of his PSA, a further reduction in PSA might be possible which would greatly alter his treatment options in a positive way...Usually, PC will not show up on bone scans and MRI's until the PSA is over 50....

On the bright side, surgery offers a virtual 100% cure for men with Gleason 6 detected very early...But don't go under the knife until you know for sure what you are dealing with....

Post Edited (Fairwind) : 12/18/2010 5:54:47 PM (GMT-7)

Posted 12/18/2010 9:56 PM (GMT 0)
I appreciate all and everyone who is taking the time to write!!! The more I know the better off we will be.

Hero-What do you mean that the numbers dont make sense? Explain more, please.

We do have a referral to see the radiologist and I am hoping to get him a second opinion referral.
Posted 12/18/2010 9:57 PM (GMT 0)
In your research you should also consider radiation brachytherapy. Low dose permanent and High Dose temporary both show the same long term results as surgery. But radiation is less invasive and the side effects are potentially less. Down side is that it takes more time to confirm that it is working. However, if any of the cancer is out of the capsule and the margins are positive, he will then also have radiation.

Take your time to realy know what is going on. Get a DRE from a very experienced urologist and speak to urologists, radiation oncologists and medical oncologists that have a lot of experience specifically with prostate cancer. Since you are in North Carolina you are within a one day drive ranging from Atlanta to Baltimore and can find a lot of excellent practitioners in that range. A Gleason of 6 should indicate that you can take some time

I have just completed HDR and have my last external radiation on Monday. My urologist is a surgeon ,but suggestred against surgery as my stage and Gleason were in the intermediate range. He suggested the HDR. I am in Atlanta.
Posted 12/18/2010 10:07 PM (GMT 0)
This is from another currant thread..

www.hopkinsmedicine.org/hmn/F02/feature2.html
Posted 12/18/2010 10:09 PM (GMT 0)
We all need to bear in mind that her husband is retiring from military service.  For that reason, he is more or less constrained in his choices and in his timellines.  I would imagine the military does not want to let him retire until this health situation is resolved, and if he's to retire on time, he is probably in a rush to get it done.  At the same, time, the military may not want to extend his retirement date.  It's a situation unique to the military.

However, here I see a man with high PSA numbers, yet low Gleason score.  In fact, the initial reading of the biopsy seemed to indicate cells that are changing, but probably not yet cancerous.  He also has a shadow in the hip area on his bone scan that may or may not indicate metastasis.  My understanding is that surgery would be ruled out if there's already metastasis, and that nothing should be done until that question is answered definitively.  Yet, it sounds as if surgery is imminent.  And how does a small town rural hospital afford a DaVinci machine, and is the surgeon civilian or military?

I don't know if he's officer or enlisted, but he needs to go to his command and get an advocate on his side to slow things down so that the cart doesn't get in front of the horse.  It sounds as if he's going straight from bone scan and CT scan to surgery consult and surgery.  Way too fast for a Gleason 6 (if he's even that). 

A lot of us have felt the "get it out NOW" impulse, but this case seems to have a lot of question marks.

Posted 12/18/2010 10:17 PM (GMT 0)
The military poses a unique situation, as you have stated...and has to be kept in mind. You are correct that it is even more pressured due to the retirement status. If he were Active duty and not retiring soon, we could slow down and work it out. But since we are confined to a specific time period, we have to get all the info and make a decision a bit more quickly than I would like. The primary doctor and his Urologist are both Active Army, although as of this summer his URO will be a civilian in private practice. We are not seeing military dr. now. The radiologist is civilian and so is the surgeon. I can give you all the name of the surgical clinic and the DR we have the consult with. I have not been able to find much on him and his history, online. And the hospital the clinic is associated with is rated very poorly, nothing about the clinic itself.

This is fantastic, great insight and making me think about stuff I didnt even know to think about. Great!!!!
Posted 12/18/2010 10:26 PM (GMT 0)
Susan,
I'm also retired Army. Please don't go to a small surgical center; this is a very serious operation, that's why they call it radical. A doctor should have done at least 250 procedures and 1000 is better. After he gets out of the Army, Tricare with a supplement should pick up the entire costs at any of the best centers in the country. A few months won't matter.
A gleason 6 and only one posititive core does not make sense with a psa of 10. Make the doctors explain where the psa is coming from as a G6 small core won't put out that much psa. It looks like he has some sort of infection as well as PC.
There are many options for him to consider, please read "Invasion of the Prostate Snatchers" by Dr Mark Scholz and also "Brachytherapy and IMRT" by Michael Dattoli and you will get a good feel for all the optons that are available.
I would consider an MRIS or a color doppler ultrasound before I decided on any treatment and would have a consult with both a radiologist and a medical oncologist specializing in prostate cancer in order to get their opinions on treatment.
At 39 he may have to live the rest of his life with some pretty severe side affects from treatment and you want to take your time and get as many opinions that you can.
JohnT
Posted 12/18/2010 10:30 PM (GMT 0)
Susan as you can see, there are lots of options and opinions. They are all noteworthy. If you husband wants to talk to me, send me an email and I will give you my number. I am no expert on this. But if I can help he can call. I am just sitting around with a cathiter attached for the next 10 days. I am up and going for walks and trying to get some exersize. I am not a good sitter. I had surgery Thursday and went to the local bar Friday night LOL!
[email protected]
Posted 12/18/2010 10:37 PM (GMT 0)
Susan,

I suggest you google "veterans benefits network" and join the site. It's a free site, and you fill find a wealth of information concerning your husband's situation, for I'm sure there are a lot of veterans there who experienced a similar problem. Your husband will be "service connected" for Pca and possibly other medical conditions that are related to his military service. Veterans at this site will tell you what medical records he should secure before his discharge. Good luck!
Posted 12/18/2010 10:54 PM (GMT 0)
With Gleason 6 in one core there is no rush to do the surgery (or radiation) and you have time to consider your options. The surgery if performed poorly can have lifetime side effects of impotence and/or incontinence (the former being far more likely than the latter but both are possible.) At least 500 surgeries is good base of experience. I have no advice to offer on navigating the military health care system but please try to do whatever you can to get to a better surgeon and get a second opinion on the diagnosis. As others have said, the data that you have shared sounds a little fishy. I don't think you have a clear and accurate picture yet on what is wrong and what needs to be done.
Posted 12/18/2010 11:10 PM (GMT 0)
Susan,

I see Walter Reed Army Medical Center in Washington has been using the robot for prostate surgery since approved by the FDA in 2001. I think I would be asking somebody of higher authority why your husband can't travel to that Center for prostate surgery. It's not that far from NC.
Posted 12/18/2010 11:44 PM (GMT 0)
Joebed, you said:

"I knew from day one I wanted this problem gone the sooner the better. I had the Da-Vinci done last Thursday. I did not ask the Dr. how many he has done. I didn't care. Someone has to be in the first 200"

That may have been your choice, and you certainly had that right, but that is terrible advice to give to someone newly diagnosed with prostate cancer. You should have cared how much experience your surgeon had, as prostate surgery is among the most complex surgeries on the book, and with either robotic or open surgeries, you have to weigh in side effects and complications. Some may end up with no ED, others with ED for life, many men regain their continence quickly, while others are incontinent for life. Neither one are casual things.

Plus, surgery may not be the best choice, depending on a lot of circumstances. And someone had to in the first 200? Sorry, I didn't want to sacrifice my chances by being in the learning curve.

We try to teach here, not to hurry or rush a decision, that can very well effect you for the rest of your life.

David in SC
Posted 12/19/2010 12:29 AM (GMT 0)
Susan

I am sure that you have been impressed by the ginorous amount of info you have received from your original post. Do not let the sidebar post confuse you. Some of the members here tend to hijack post because of personalities. That is to say don’t worry about how many surgeries a potential future surgeon has done. At this time you need to worry only about becoming the most informed consumer that has ever been.

My comments about the numbers not completely being understood is that usually a cancerous prostate produces more PSA. Not always but usually. Also a big prostate or a prostate that has been traumatized (biopsies, some say that a DRE or having sex) or an infected/inflamed prostate may produce elevated PSA. But if you look at my stats I had a huge amount of cancer and yet my PSA was much less than your husband. I’m not the smartest person on this forum, we really have some significant scientific type persons here, but I really question the high PSA with low volume and low grade pathology. It could be accurate, however to me it begs to be explained. Particularly in a very, very young healthy man. To fully explain this may require additional examination by an objective qualified physician. Again sorry about this, and best of luck.

Hero
Posted 12/19/2010 12:38 AM (GMT 0)
John T

l had a P.S.A. reading of just under 10 with 2 cores positive on a 24 core biopsy (the first 12core was negative) the Gleason was 3+2=5 but was upgraded to 3+3=6 after open surgery
Posted 12/19/2010 12:46 AM (GMT 0)
Colin,

As I said in my post above that is not unheard of but, not the usual...out of curiosity what was your cancer volume in the post surgical pathology examination of your prostate ?

Hero

Posted 12/19/2010 3:08 AM (GMT 0)

Susan

I am in North Carolina too and I would suggest you and your husband check with Duke University Medical Center in Durham.  Dr.  Judd Moul is chief of Urology there and is my Dr.  He is retired Army and does open surgery.  They also have other type of treatments too.  They have a multidisiplary team there at the Duke Prostate Cancer Center and I would highly recommend them for your treatment.  I have had zero PSA's for the last 3 and a half years.  You can make your own appointment with them for your huband's treatment options.  I was, and still pleased with my treatment there.  If I can answer any other questions for you or help you in any way I would be glad to talk with you over the phone or in person.

Mika

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