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husband age 43 diagnosed last week

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Posted 9/5/2014 2:49 PM (GMT 0)
Hello. My husband has just was recently diagnosed with prostate cancer. He was being tracked for 15 months due to having and enlarged prostate and daily urinary issues. Also, his father had prostate cancer in his 50's and his grandpa died of prostate cancer in his 70's. His PSA started 15 months ago at 2.3 (which the doc said was higher than normal for someone in his 40's) and was 3.4 in August. The doctor was feeling that he needed to do a biopsy due to the change and the fact that he is enlarged with urinary symptoms for so long. After the biopsy (and the infection ;-( ) it came back with 2 cores positive of 12. 2% and 5%. The doctor feels that surgery is the best option due to him being so young with a life expectancy greater than 10 years. He prefers the open surgery, but it seems that I only hear about robotic. We have scheduled the surgery, but we are trying to hear from as many people as possible and their experiences. It would also be nice to hear from other 40 year olds as well - but of course we would love to hear from anyone. THANKS so much in advance!

Sorry -His gleason score is a 6

Post Edited (jshill) : 9/5/2014 11:55:45 AM (GMT-6)

Posted 9/5/2014 3:03 PM (GMT 0)
You will soon hear from the too-many 40 yr olds we have on this site, but I am concerned as to why your hubby prefers an open surgical procedure over robotic. The DaVince procedure, when done by a highly experienced md, offers lots less pain, less bleeding and a much shorter recovery period. If you cannot find one who has completed several hundred surgeries......keep looking! Don't settle for a doctor who is nearby. I did and it nearly killed me on my first attempt at the operation.

Also, pls post his Gleason score. If he is a six (3+3), he and you really ought to consider active surveillance. There are real and consequential sex life issues you will face after any type of surgery.

Good luck!
Posted 9/5/2014 3:10 PM (GMT 0)
Hello jshill,

Welcome to HW where nobody wants to hang out!! But, finding this wonderful group of people dealing with PC has been the life-line for myself and many others as well.

So sorry to hear of you husband's recently diagnosed.

Because I wasn't tracking my PSA (didn't even know what PSA was until my doctor said something about being tested in one of my annual check-ups two years ago on Sept. 10th. I was diagnosed WAY TOO LATE for any surgery. Dr. gave me 4-5 years at most to live, but, I'm in Gods care and taking it one day at a time! I don't have much to comment on about the type (types) of surgery your husband is facing. However, I know in time, there will be a few guys/gals that will chime in with their experiences.

There are a few guys in their 40's here that have been diagnosed with PC and hopefully they will add their thoughts!

A great PC book that a lot of people suggest getting is: by DR. Patrick Walsh's, "Guide to Surviving Prostate Cancer," third edition. I got mine via amazon.com for under $20.00 (I think).

Take care and you guys will be in my thoughts and prayers.

Dave in Bartlett, TN
Posted 9/5/2014 3:18 PM (GMT 0)

Sorry to hear about your stressful time.  My husband was diagnosed in June and just underwent surgery 18 days ago.  He is 62.  I expect you will get lots of feedback about looking at all of your options as to treatment and whether treatment is even necessary right now given his biopsy results.  That is certainly not something that I feel in any way able to weigh in on.

What I can tell you however is that my husband had open surgery so I do have experience from that standpoint as I realize the most of the surgery these days is robotic and particularly it seems to be the case on this forum.  The most important thing is that you find a surgeon (if he is going to have surgery) that is very experienced in the surgery method being performed.  Surgeon skill, rather than the method of surgery, is the most important variable.  I have heard and read that everywhere.   We chose a surgeon who only did prostate cancer surgery and had done thousands of them as the Chair of the Dept of Urology at the Medical School where we live.  His method of surgery just  happened to be open.   My husband was home from the hospital 30 hours after admitted. He was walking up and down the floors about 7 hours after his surgery began.  This morning and yesterday morning he took a 4 mile walk each day.  I just talked to him on the phone and he is driving into his office to pick up his mail, although he is not back at work yet.  He still has some incision discomfort - I don't know how that compares with the robotic people as to how long they have discomfort (although I think all individuals manage pain differently no matter the method of surgery) and he wore a catheter longer with open than they seem to with the robotic.    Other than that, I can't imagine that the method of surgery matters as long as it is done by a highly skilled and experienced surgeon.    If you feel the best surgeon is the surgeon who does it via the open procedure, don't be afraid of that method at all.

Good luck to you.  It is definitely is a journey.

Posted 9/5/2014 3:20 PM (GMT 0)
jshill-

I was diagnosed last year at age 41. I had robotic surgery, which went very well. More about me, my surgery, and my outcome in the links below.

What is your husband's Gleason score (a number either 6, 7, 8 or 9 most likely)?

Is the doctor who is recommending treatment/surgery his regular Urologist, or a specialist in prostate cancer?

I strongly recommend that you visit the links in my signature below, to get more info on prostate cancer/treatment, important questions to ask when you are interviewing surgeons, and Dr. Mulhall's book on sexual health issues/rehab/recovery that you and your husband will have to deal with. Read the book now, not after treatment (trust me).

-Gedman
Posted 9/5/2014 4:34 PM (GMT 0)
js:

I was diagnosed at 42.

My Uro recommended surgery, and he recommended going out of town to travel to one of the major cancer centers where they perform thousands of these operations. I think he was concerned with me going to a place that had the most experienced surgeons so that I would be more likely to maintain my continence and sexual function.

I read Patrick Walsh's book (mentioned earlier), and I cannot recommend it highly enough. It is very well written, informative, and reassuring.

After reading the book and doing some research, I decided open surgery was for me. Robotic surgery definitely has some advantages, but it's been said that it doesn't have the track record of the open surgery..and hasn't had the opportunity to demonstrate the same long term success rate yet, simply because it's newer.

I ended up going to Johns Hopkins, where the nerve sparing open surgery was really perfected, and picked a surgeon with thousands of surgeries under his belt.

The recovery did take a bit of time, but it wasn't intolerable. The worst part was definitely the catheter, which I think you need with either technique (not sure).

Anyway, 2.5 years later, my PSA level is still in the undetectable range, I am fully continent, and my sexual function is about 80% without meds, better with meds.

I would recommend doing regular kegel excercises leading up to the surgery. I am convinced that this helped me with recovering full continence very shortly after the catheter was removed.

Good luck with this decision.
Posted 9/5/2014 4:47 PM (GMT 0)
JS
I too had open surgery at Johns Hopkins to which I traveled based on level of excellence and reputation. In hospital two nights. No complications and quick recovery. Played golf in three weeks. I was Gleason 9 and still had nerve sparing which is why I had open RP instead of Robotic. My surgeon wanted to be able to feel the boundaries of the tumor which he can't with robotic surgery. Good luck with whatever you choose!
Bob
Posted 9/5/2014 5:23 PM (GMT 0)
Welcome aboard jshill, sorry you are joining us.

Pretty scary getting the news, especially at a young age. I was about your husband's age when I started realizing I had a prostate with signs, at that time, of an enlarged prostate. Then at 49 I had my first negative biopsy. I had 2 more biopsies before the cancer was found, 10 positive out of 12 core. But enough about me.

With your husband's numbers, he doesn't need to rush out and do anything permanent just yet. Every treatment plan has side effects that will change your life. I am a surgery guy and had the robotic surgery but if I was your husband, I would take some time before deciding on his treatment option. Nothing is going to change much in a month or 2.

Let us know what area you live in, we can give you recommendations from all over the US and in some other countries as well. Also what is his Gleason score? That is a number like 3+3=6 or 3+4=7. If you don't have a copy of the biopsy, ask for one. I keep EVERYTHING! Ex. All PSA results pathology reports, operative reports, etc. The doctor's have to give them to you if you ask but they don't always offer.

Create a book to keep them in and go with your husband to his appointments, if you can. When you have been told you have cancer, you sometimes are not always listening as intently as you should when talking to a doctor. If my wife wasn't there, I wrote everything down after the visit before I forgot. Smart phones are good also to record with if the doctor approves.

Good luck in the coming weeks and months. The only stupid question is the one you didn't ask so ask away.

Bill from Florida cool
Posted 9/5/2014 10:53 PM (GMT 0)
Sorry about the shocking news. I was 54 at dx that was discovered after TURP surgery to relieve urinary tract symptoms. If your husband is already having urinary tract symptoms they likely will just get worse. In my case, the urinary tract symptoms that could not be relieved with meds or TURP made my decision a lot easier relative to my treatment of the cancer and I decided on robotic surgery. I also travelled to Johns Hopkins due to their overall reputation. The surgery was not bad for me. I am 4 months out and doing fine. You can read all about ED issues on this forum and the doc will tell you that ED is highly likely in the short term but also it is likely that some function will return over the long term.

I would find the best surgeon you can and pray for the best.

Good luck in your journey.
Posted 9/6/2014 12:15 AM (GMT 0)
JSHill:

I was diagnosed 7 months ago at age 44, so all the things that you and your husband are going through are very fresh in my (and my wife's) mind. My best advice is to take the time to fully research all of the available options for you. I know that the urge to act quickly is very strong, but you do have time to get educated and make a calculated decision based on facts from all angles. As I think someone else mentioned above, I would recommend that in addition to a second opinion from another Urologist, you should seek out opinions from a Medical Oncologist and Radiation Oncologist to ensure that you get viewpoints from various professionals in different treatment modalities. When I was diagnosed, I sought out quite a few opinions, and while there were multiple options from which to choose (surgery, radiation, surveillance), all of my secondary opinions matched those of my Urologist -- surgery was the best option to provide a highest chance of cure with the primary treatment, and left me with multiple follow-on treatment options should I have a recurrence.

You and your husband will ultimately come to a conclusion as to the best course of action for his situation. You have found a great support resource here that you both can use, and, hopefully, you have great support from family and friends on which to lean.

My email is accessible by clicking the link under my name to the left of this post if you or your husband would like to contact me. I'm happy to share what I know, and what I've gone through thus far.

Best of luck to you and your husband!

Rich G.
Posted 9/6/2014 12:18 AM (GMT 0)
I would get a second opinion on the pathology from an "expert" lab..Few if anyone ever died from Gleason 6 prostate cancer..So surgery and its associated risks and side-effects should be considered carefully...You are smart to find the best surgeon you can if you decide to go that way...Best of luck to you...
Posted 9/6/2014 1:55 AM (GMT 0)
We had same experience as Lovif and Rich. Can't add to it, but you have come to the right place. My husband had open Sx and made a good recovery. At 42 his PSA had been 2.1, then at 48 it was 3.5 but biopsy showed gleeson 7 rather than 6.

At the time, open surgery was our surgeon's preference. My husband did not have a family history, so this may be a factor in your decision-making of how to manage/treat. Lots of specialist opinions and seeking answers to your questions, taking time to make a decision, seeking support helps. It is best to be fully informed to have these consultations. People here can answer any questions with a variety of experience so feel free to ask away as you research options, and try to take care of yourself as well. It's a big shock but eases with time. Kind regards, Lana
Posted 9/6/2014 1:01 PM (GMT 0)
Hello
I was 48 when diagnosed with G6 PCA. I had options for radiation, open or robotic surgery and decided on robotic for a few reasons. Less invasive, lower blood loss and that the surgeon could better see the nerves that I desperately wanted spared. Make sure the surgeon has done many hundreds of surgeries. In both open and robotic you will want to know the continence and potency rates for the patients they have operated on.

Experience... I had robotic surgery on 11/11/2014and spent two nights in the hospital. The first few days with the catheter was rough, but not as bad as the biopsy. Getting the catheter removed was no big deal. I leaked moderately for a month (3 pads per day) and now only need them when I am active. Sexual function took a hit for 6 months, as expected. Post surgery PSA is 0

Best of luck

Pat
Posted 9/6/2014 5:02 PM (GMT 0)
I was diagnosed at 44. Anytime he has questions I'm open to talk to him. Love this site BTW.
Posted 9/9/2014 4:19 AM (GMT 0)
I was diagnosed last year at age 44. I don't intend to make this post about me, but I wanted to pass along some of my decision making process in case you might find it helpful. I also want to make it clear that I believe this a very personal decision based on each individual's priorities, tolerance for risk, etc. I don't mean to push any one choice.

After a lot of research, meeting with over 10 doctors, and many conversations with my wife, I decided on active surveillance. My biopsy numbers were "worse" than your husband's -- I had 4 of 10 positive cores, with the highest being 30% involved. All Gleason 6 (confirmed by a second opinion). Even though I don't technically meet most published criteria for AS (mostly due to over 33% cores being positive), I became comfortable with the fact that my amount of Gleason 6 was not immediately threatening, and with aggressive AS, I could identify if/when I needed to treat.

I understand that, at my age, I may need (many say likely will need) treatment at some point in the future, but I decided that every year I avoid treatment is another year I'm living side effect-free. That is very important to me. With respect to the side effects (particularly sexual), I was moved by some of the personal stories I read on this forum and others. I understand I shouldn't rely on anecdotal evidence to evaluate the likelihood of certain outcomes, and I didn't -- I looked at all the statistics I could find for that. However, it became important for me to understand, if I did end up on the "bad" side of those statistics (i.e., the x% who end up with ED from a particular procedure), what that actually could mean for me, my wife, and our life together. I think it's also important to understand what many of the studies define as a "positive" sexual outcome -- just the ability to have basic intercourse with OR without meds.

If/when I do need treatment, my choice right now would be HDR brachytherapy. Based on what I've seen, I believe it has essentially the same "success" rates as the other treatments and better side effect rates. In particular, when it comes to ED, if you look at studies that ask "are you like you were before" (in other words, return to pre-treatment baseline), it appears HDR brachytherapy has the best results.

Again, I don't want to suggest that this is the right course for anyone else. It's more just food for thought. In fact, during this process, I had scheduled robotic surgery and ended up canceling a couple of weeks beforehand. So, I've been to all ends of the spectrum.

I wish you and your husband the best in your decision making process. In this forum, you've found a great source of information and people who really care. It has been a huge help to me -- I only wish I could have contributed more to this point.
Posted 9/10/2014 2:55 PM (GMT 0)
Hello, I was 50 when diagnosed. I had robotic and would go that route again. It went well with no issues and I have no regrets. All my fears about urinary problems did not come true, in fact I have better flow now that before. As others mentioned, you do want someone who has done a couple of hundred robotic procedures. But also be sure he has also done several conventional methods as well. I am told that about 1% of the time some malfunction of the machine will require him to go in and do it conventional style. Chance is slight but you do want someone prepared for it. This website was a valuable resource for me prior to surgery and during recovery.

Pray for wisdom in your choices and all will be well.
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