Unbelievable!!!!!

Opinions wanted!!!

My 39 year old husband was dx right before Christmas with PC. This dx was based on 1 core being positive from his biopsy. His films were viewed and then send off to the Armed Forces Pathology Institute for 2nd opinion. He was given a Gleason of 6. Based on the dx, we have talked to the URO, a surgical DR and a radiation oncologist to make the best decision. We have decided to have the Da Vinci and this is scheduled for Feb 2, 2011. OK, so what do I need your help with if the decision has been made????? Based on bone scan, CT and chest Xray, cancer has not spread.

Michael (husband) took another PSA on Friday along with a bunch of other blood tests for the military....the URO called today with the results of the PSA. Take a deep breath......his PSA was a 2.74. To give you an idea.....his last PSA before the biopsy was a 10.

So, we know the cancer is there, albeit caught in the very first stages and very slow growing. Do we stick to the surgery, or what? I have had lumps in my breasts and had them removed and they were "pre-cancerous", why in the world would we leave the mass that we KNOW is cancer in my husbands body??? But.....with the severity of the surgery and the possible long term effects, maybe we should just watch it. But....as his URO said today, if we could give you a definate of when the cancer would grow, then I would wait. But since we cant leaving it in is risky. I know there is a bunch of people who believe that "watchful waiting" is right for them, but it hasnt really made sense to us. I think we are probably going to stick to the plan, but wanted some input and thoughts from other people....we may be missing some train of thought that we should address.

Thank you for your time
Susan

Hi Susan........I don't have the broad knowledge of some of the guys here, but you should probably send your biopsy results for a 2nd opinon to an Epstein at Johns Hopkins or another reputable lab. You want to make sure that the one core is indeed one core, and that it is definitely a Gleason 6. Another consideration for a watchful waiting approach is age. As a general rule of thumb, the older you are, the more appropriate it becomes. At 39, there are a lot of years to watch and wait. If you do opt for treatment, make sure you're not planning on children in the future, because your husband will be rendered sterile if he opts for surgery. You of course can have semen frozen..........the drop in PSA after biopsy is not uncommon. He could have had a small infection, you may have had sex close to the time he was biopsied, etc.---and, PSA's come down for no apparent reason. I was diagnosed with a PSA of 3.9, and 3 months after the biopsy, and right about the time I was pulling the trigger on treatment option, my PSA came back at 2.4......bottom line is you have plenty of time to make a decision on treatment/no treatment, and if treatment, what kind of treatment. Take the time and educate and research as much as you can in order to make the most informed decision possible.

Arnie in DE

my initial patient-to-patient response would be - no need to rush

- time to do a lot more research - to seek out the BEST treatment for your husband.
1 out of _______ cores - _____% of core cancerous - gleason __6__
first PSA __10__ -second PSA ___2.74 ... -third PSA _____

-would recommend another PSA bloodwork - any possibility of an UTI ?
REMINDER- for 2-3 days prior no activity involving the prostate - no sex - with you or by himself - horseback riding - motorcycling - or a doctor's finger up his butt ..just to name a few ... . that can all elevate a PSA and give a false reading...

-check out the links at the top of the page - they can help direct you, your husband and your medical care to the BEST treatment for him - whether that be AS, RT, RP.... just to name a few in this confusing alphabet.

-wishing you all the best.
hugs
BRONSON

Hi Susan,   Welcome to the club that no one wants to join. I imagine that you would be shocked by your husband’s diagnosis – 39 is a very young age for this type of cancer. But you are very lucky that he tested for it so early in his life, many men don’t start testing till a decade later.   There are a few things I would do before making a final decision as the consequences of your choices are long lasting.   1)     Get a expert to review your biopsy slides. This may seem like a time wasting exercise but what I have learnt pretty early is that you really want someone who has looked at 1000s or 10000s of prostate cancers to look at your biopsy slides. You garden variety pathologist deals with hundreds of diseases and cancers and therefore tends to be tentative with his/her diagnosis. I suggest you look up Epstein or Bostwick laboratories and get a second opinion. 2)     Read, read and read some more. Two good books are written by Patrick Walsh (Guide to surviving prostate cancer) and Dr Stephan Strum (a primer on prostate cancer). 3)     We are not doctors here but a PSA of 10 seems high for someone with such a small amount of cancer. The vast majority of people without prostate issues would have a PSA of less than 2. I would try to find out whether this high PSA is caused by infection, by BPH or by cancer not seen by the biopsy. A good first step would be to get a free PSA test which can help you work this out.   People with BPH tend to have a high free % PSA. A course of antibiotics may help determine whether the PSA is caused by prostatitis (if it is the PSA should drop). In your husband’s case it would seem prostatitis was a factor as the PSA did drop so dramatically. 4)     There are broadly three options available to you, surgery, radiation (including seeds) or active surveillance. My personal view is that at age 39 I would considering the first two following confirmation of your status. Some people are lucky enough to have an indolent version of the disease and there have been studies showing that if you fit a set of criteria and follow strict guidelines on monitoring that you would not have a worse outcome than if you went into definitive treatment. However in the case of your husband, who is probably not halfway through his life so even slow growing disease would probably affect him at some stage.     Regards, An

Susan, I remember your earlier posts from last December. What's your husband's current status regarding Army retirement? Has he set a date? Is his military retirement driving the February date for surgery?

Is the Army limiting his options in any way? Will they let him retire without getting the PCa treated?

In December, you were concerned that the military wanted him to have the surgery performed at a smalll facility with a not-so-good reputation. Has that changed?

At age 39, I think I would like to get a second or third opinon regarding the biopsy results before proceeding to surgery, but pleae remember that I'm not a doctor.....just a guy who has had a run-in with PCa.

zoph3388 said...
Its your decision and whatever it is you live with it. Nobody here should be telling you what to do. We all made our decisions based on what was best for us. Whatever you choose- just make sure your decision is done together so no one gets blamed if things go wrong.

An interesting response to somebody asking for an opinion

Susan,
The general consensus here I feel would be to tread warily. Your husband's biopsy showed very little tumour (1 out of 12) and Gleason 6 (currently the lowest rating). Do you know the percentage of tumour in that core. Alarm bells should probably sound concerning the drastic fall in PSA ------- that is more indicative of prostatitis and its response to antibiotics (which I assume were given post biopsy). My inclination would be to have the slides looked at by one of the specialist pathologists mentioned to confirm the diagnosis and then decide the next course of action. Even if tumour is confirmed prostate cancer can be somewhat different to most other tumours in that it may or may not progress. 39 is young to have to make a decision such as this ---------- treatment does come at a physical cost so it's important that you learn all you can about the disease before making such a profound decision. Even if tumour was confirmed active surveillance over the next couple of years is not out of the question.
Here is a list of the journey of others in the same age bracket ------- click on their names for their personal story:

www.yananow.org/Chart-Ageu50.htm#40

Bill

Post Edited (BillyMac) : 1/12/2011 5:12:36 PM (GMT-7)

Susan,

I don't think its is the size of the facility but the experience and skill of the surgeon that is the issue.
The surgeon needs to have had a good reputation and done more than 500 surgeries (preferable more than a 1000). Just having a good reputation is not enough as the rate of incontinance varies from 3% to 50% depending on the skill of the surgeon.

If the surgeon you are looking at does not have the experience required I would find another. Your husband needs the best possible surgeon you can afford - he will need the smallest amount of side effects possible as at 39 he has a long time to live.

Regards,
An

I have tremendous respect for An38 and the others posting here, but allow me to represent a minority opinion.

You have said that you have talked to other medical people who have had good things to say about your surgeon.  It's common on this site for people to say "find someone who has done a thousand of these surgeries."

If a guy performs two of these a day, five days a week (but most only do surgeries a couple of days each week and have office calls the other days), it would take five years to approach a thousand surgeries.  If they're doing three a day, I would not want to be their third four-hour surgery of the day.  We all know this is an extremely precise surgery, and I simply would refuse to be the third, or especially the fourth surgery of the day.  The numbers assume he never takes a vacation, doesn't observe holidays, and so forth. 

My surgeon has done about 50.  He's in his 60's and has had a strong reputation for many years as a uro-surgeon, having done God knows how many open prostatectomies before adding the DaVinci procedure to his repertoire about four years ago.  He would have done my surgery either way and the decision for DaVinci was entirely mine.  His excellent reputation continues undiminished.  He's good, and everyone in the area knows it.  I don't see how I could have had a better outcome at Johns Hopkins.

So, I tend to place an asterisk over the requirement for a thousand surgeries.  Obviously there are exceptions to that rule.  I suspect that the surgeons with national reputations were as good after 20 or 30 Da Vinci surgeries as they are after hundreds.  I would ask him, though, what his success rates are with ED and with continence, and I would insist on honest answers to both questions, as well as how he defines continence and how he defines return to potency.

I know my opinion is a minority opinion, but you asked for a variety of opinions, and this is mine.

 

If you choose surgery, please read Dr. Patrick Welch's book. Surgery side effects critically depend on the surgeon's skills. The difference could be very dramatic. My surgeon does 4 to 5 surgeries a week. I met three other patients who had surgery around the same time I did mine, non of us has any incontinence after surgery (I did not ask them about ED).

A good surgeon should be willing to answer questions regarding his statistics and success rates:

1. Total number of surgeries done, number done in a year, a month, a week and in the last three months
2. Percentage of cases having a positive margin
3. Percentage of cases having incontinence
4. Percentage of cases having ED
5. Percentage of cases having Bio-Chemical Recurrence

Good luck to you and your spouse.

It appears that you have plenty of time to make decisions and to get multiple opinions. The fact that you are leaving the military should not force a decision. After the military he should still have VA access. I assume that he may pursue another career. If that is correct, and many major employers welcome the retired military, he may be covered by very good group medical insurance. Thus, making a decision based on current medical insurance may not be well advised.

Please do not make a decision on treatment until you have consulted with a medical oncologist, an urologist and a radiation oncologsit....and read a few books.....and listened to people on this board.

Best wishes and please thank your husband for his service to our country. We very much appreciate it.

Use the internet (this board is a good place to start) and determine the the top five Da Vinci surgeons, the big guns at the big cancer centers. Write them a short handwritten letter explaining your situation and wishes.

You might be AMAZED at the responses you will receive..I could be wrong, but I think it would be worth the effort..

Susan, my diagnosis in 08 was similar to your husband....actually, it appears that mine may have been a bit further advanced. Even at that, it was labeled an 'insignificant cancer'. It wasn't hurting anything, and it wasn't going anywhere at that time. My doctor said I could have it removed or 'watch' it until it became 'significant'. He also said that some people cannot deal with that...knowing that they have cancer. I had no problem with it. It actually made me appreciate life much more. At any rate, I was able to watch for 2 years before there was a bit of a change. My doctor wanted to do surgery. I did not. I have done a lot of research as everyone here has, and I found few post surgery patients whom I envied. All I wanted was an 'objective' professional opinion, but that is very difficult to find: cutters cut, bakers bake, seeders seed. Through it all, I chose to have brachy, and have no regrets, but most importantly, I discovered that each of us must make our own decision. I have a friend who has a very similar diagnosis as your husband. I have talked to him about brachy, but his doctor has him so terrified that he feels open surgery is the only answer. I have tried to suggest that he at least consider other options, but this guy has him convinced that surgery is necessary..and soon. He is scheduled for the radical open prostatectomy on Feb 11.
No one has 'your' answer, but many have echoed that at this point, time is on your side. Use it to make a decision based on medical fact and quality of life post surgery. Just don't let anyone scare you into a decision because I'm afraid that many professionals do just that.
God bless.

The amount of information from you all is so wonderful, and know that I have read and reread each posting. The differing opinions are wonderful and you have sparked some good conversations between me and my husband (always a good thing) Almost all of you agree that there should be another film opinion, everyone feels research needs to be done, and that everyones situation is different. We are checking them off as we do these things. The research part....well, it will never be done (in my eyes you can NEVER learn enough) We are talking to Drs, specialists, oncologists, surgeons, Uro, patients (such as yourselves) friends and family. We are getting books sent to us from around the US, which I read obsessively and immediately. We are working on making positive changes to nutrition. Being in the Army, my husband is in pretty good shape, so we have that on our side. I think we are doing part of what everyone here has suggested, and having you all give your input, just solidifies that we are taking the right baby steps. Since you have all been through the process, the thoughts, the fears, the effects of treatment choice - who better to get ideas and info from than you all. We greatly appreciate all the advice, input and thoughts. If you think of anything else you wish you would have thought about, please dont hesitate to get in touch. The more info and the more we plan and think about the better prepared we are. No info is trivial or simplistic....thank you all, and God bless you all and your families on your journey!!!