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Biopsy results are in, joining the PC fight

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Posted 9/26/2014 1:22 AM (GMT 0)
Biopsy results on hubby are in today and are as follows (forgive me if I don't type them in the manner usually used in the forum) 6 of 12 cores positive as follows GS 3+3=6 (5%) 3+3=6 (5%) 3+3=6 (3%) 3+3 (10%) 3+3=6 (40%) 3+4=7 (40%) PSA 4.1 ...I understand the Gleason score but I am not exactly sure what the percentages mean. Amount of tissue effected? Anyway, doctor recommends prostate removal (robotic) he's only been doing them for a year. He is initially trained in open. Says hubby is not good candidate for radiation therapy because of his age (53). He said if it was him he would do the surgery. I am heading over to the newly diagnosed thread so I'm going to post a few more questions that may be answered there so thank you for your patience. We are in such shock it's like I want immediate answers. I live in Arkansas, the doctor is in Texarkana Tx, is there somewhere on here listing best doctors in Arkansas to use? I feel more comfortable w/ a urologist oncologist doing procedure (which would be a 2 hour trip one way in Little Rock) hubby is perfectly fine using the regular urologist. Thoughts on oncologist vs. regular urologist? Best doctors in Arkansas? Also hubby is sole source of income. Doc. says can return to work in 6 weeks. Is this about right in your opinion? Can you go back in 6 weeks. Is hubby going to leak forever? Never get an erection? Ohhh so many questions, any insight, words of wisdom, prayers, whatever you ladies or gentlemen have to offer I'm here eagerly awaiting just to know someone understands where we are right now and how scared we are. Thanks you all.

Post Edited (ARangel14) : 9/25/2014 7:27:20 PM (GMT-6)

Posted 9/26/2014 1:39 AM (GMT 0)
Not a candidate for RT at 53? That's silly. You need opinions from more experienced surgeons and radiation oncologists. The % is the amount of core with tumor. He should get a second opinion of biopsy slides from Epstein at Johns Hopkins. I would think all options are open to him. Quickest recovery would be from brachytherapy or surgery, as External radiation takes like six weeks, 15 minutes a day, 5 days a week , not including commute time but he can work during the entire time he's in treatment. Surgery means taking a couple or three weeks off . Do not limit yourself to local geography : go to the best most experienced practitioners unless you find experts close by. Frankly he may be a candidate for Active Surveillance if no Gleason 7s were found which is why the 2nd opinion is necessary.
Best to you!
Posted 9/26/2014 1:43 AM (GMT 0)
Don't rush into surgery.

You have time to explore all our options and may even be a candidate for pro Active Surveillance with the one G7 (3+4) being the only one that may work against Active Surveillance but you should check it out just to be sure.

Since Gleaosn score drives all choices of tratments, have your biopsy rescored at John Hopkins

pathology.jhu.edu/department/services/secondopinion.cfm

I just attended a conference PCRI (Prostate Cancer Research Insdtitute) the frst weekend of Sept where sex therapist Dr. John P Mulhall stated the only penis freindly treatment is Active Surveillance and all the other treatments will affect your sex life to varying degrees.

www.mskcc.org/cancer-care/doctor/john-mulhall

Form a team of a second urologist/surgeon, a radiation oncologist and a medical oncologist to make sure all opinions are considered before you make your final decision. Virtually all the remdies will work for you and you just have to pick the one you are most comfortable with.

LupronJim
Posted 9/26/2014 1:48 AM (GMT 0)
Hi ARangel - I know exactly how you are feeling right now, and you need to believe that this shall pass.  When we were faced with this situation at the beginning of 2013, my husband and I met with two urological surgeons who both had years of experience in robotic surgery.  We decided on the one surgeon that was also an oncologist.  If you have any questions, feel free to ask.  Take care.
Posted 9/26/2014 1:55 AM (GMT 0)
Oh I also forgot to mention that he also has perineural invasion on left middle and left lateral apex. I'm just now getting to the PNI section so everything is sounding worse to me!!!
Posted 9/26/2014 2:42 AM (GMT 0)
Hear what others have said here. Surgery may be where you end up going, or maybe something else. Consider all treatment options, I doubt that surgery is your only choice. I was 55 at diagnosis, am now 68 and doing very well after open surgery in 2002 and salvage radiation in 2010, I have a PSA of 0.00. However in the years since my original treatment, treatments other than surgery have been shown to be very effective. One downside of surgery is a high risk of ED, speaking from personal experience. That said, even if your husband's best treatment option has a high risk of E.D., there are worse things. Just saying... I'm writing right now from my Kindle in our RV as my wife and I are doing a three week tour of Nashville, Memphis, and the Missippi delta before heading home for another New England winter. Life is still going well for us.
Jim
Posted 9/26/2014 2:42 AM (GMT 0)
Don't let the report scary you by reading too much into it. Yes, your husband will need some treatment but he'll do fine on almost any kind of treatment. Surgery isn't his only option. Even at his age radiation (beam or seed) would work with no real long term problems.

You really need to get a second opinion from a radiation oncologist (RO) to see what his options are there. Sounds a bit like your doc is trying to sell surgery - that's always red flag to me.

If you do decided to go the surgery route, don't panic. He might not need six weeks to recover but many of our guys get back to work just fine.

Hang in there and check everything out.
Andrew
Posted 9/26/2014 3:01 AM (GMT 0)
Hi ARangel,

I'm in AR also, about the same age as your husband and recently diagnosed. My urologist in TX recommended surgery and for similar reasons.

The folks here offer great advice and support. Your husband will need to make his own choice but encourage him to investigate all of the options. There are many resources here, elsewhere online and with physicians in distant cities that will consult over the phone.

Best of luck to you both.

Walt
Posted 9/26/2014 3:08 AM (GMT 0)
Sorry you get to join the club as a full member. I know how frightening it is.

Given his biopsy results he will almost certainly want to seek treatment. He's a good candidate for surgery, just like the surgeon-cadet said, but he's also a good candidate for almost everything else too. You'll want to talk to doctors from several specialties -- be sure to include a radio oncologist with experience with brachytherapy; that is increasingly seen as a form of radiation that works well for younger men.

If he still decides to do surgery it doesn't sound like your current surgeon has enough experience to perform as well as one of the high-volume "rock star" surgeons. Multiple studies have shown the experience of the surgeon to be the single biggest factor in all of the outcome metrics. Let the nice young doctor practice on someone else.
Posted 9/26/2014 3:19 AM (GMT 0)
ARangel,

Scary huh? Well, it will pass. Take a deep breath and explore all the options. Start with getting a second opinion on the biopsy sample. Your hubby is still a young fella at 53 and the options for intervention are plenty.

I had a smidgen of cancer in one of 16 cores, except my smidgen was a Gleason 9. Personally I did not know of all the other options available.

So - deep breath -- consider the options, then make a decision!

Take care!
.
Posted 9/26/2014 7:51 PM (GMT 0)
Day 2 after diagnosis. Shock is wearing off and warrior mode is kicking in. Hubby and I discussed and decided we're just not comfortable with one doctor's opinion so we are pursuing a second opinion in a larger city (Little Rock) and even just talking to them on the phone I feel better. The clinic in Little Rock was appalled that our current urologist immediately said surgery based only on biopsy results and asked why hadn't they done MRI etc (forget other test she mentioned). They were also appalled (and forgot to mention this in above post) current urologist told us point blank "If you decide to see another doctor on this matter I will not see you for 3 months if you decide to come back". Little Rock clinic said they had NEVER heard of this. Has anything like that happened to anyone else? Also I don't know if I need to start a new thread but main concern now after rereading path report is the PNI and the risk that the cancer is outside of the prostate. From what I am reading it is usually always an indicator that the cancer is not contained. Anyone with any experience with this? Current doctor had stated with current PSA number of 4.1 that it is unlikely the cancer is outside of the prostate.
Posted 9/26/2014 8:56 PM (GMT 0)
Welcome from another 53-year old that's a member of the club.

I'm glad you're shifting into warrior mode since you really need to be your own advocate here. I do urge you to take your time and get as much information as you can before making a decision. You do have lots of options, despite what your urologist told you. (You may still choose to go the surgery route, but I had brachy and IMRT and I was the same age.)

As to what the guy said about not seeing you for three months if you come back, it sounds like he needs to brush up on his Hippocratic oath. (On the plus side, it means you've already eliminate one doctor you need to deal with!)

BTW, you should also be getting a second read on the biopsy slides. Very important and shockingly easy to do. Info on how to do that is in the Newly Diagnosed thread.

Good luck and do keep us posted!
Posted 9/26/2014 10:36 PM (GMT 0)
ARangel14,

Sorry about your husband's diagnosis. My statistics are close to your husbands. I had robotic surgery 10 months ago at the age of 60 by my oncology urologists trained at M.D. Anderson Cancer Center in Texas. Surgery wasn't to bad, but the first couple of days I was sore whenever I tried to get up or down from a chair. I could have returned to work after 10 days when the catheter was removed, but I had plenty of time so I stayed out three weeks. I am probably not typical, but I experience zero incontinence and zero ED problems.

Knowledge is the most important way to cope with prostate cancer. Your husband is a candidate for any of the treatment options for prostate cancer. I first opted for low dose brachytherapy, but after talking to my urologist I decided for the robotic surgery. And if you select a doctor for robotic surgery make sure he has done at least 500 or 600 robotic prostatectomies.

Bottom line, would I do it again? YES!
Posted 9/30/2014 12:07 AM (GMT 0)
Well, we got an appointment in Little Rock on Oct 16th which makes me nervous even having to wait another two weeks since this whole thing started on Aug. 15, that's two months of wasted time (in my mind all I can see is cancer growing and spreading every day the longer the wait is). That's the reality of living in a small state without a lot of resources. The clinic he is using is the first in the state that used the robotic surgery and he will being seeing Doctor Keith Mooney. Anyone ever heard of him? There are no "superstar" physicians anywhere near us and with a small child and no income will be coming in it's not feasible to travel. The more I read the worse it seems and I'm almost convinced this has been growing since at least 2008 (maybe 2007). Still no clear answers in our minds what our best option would be. Surgery sounds best to me because I just want it OUT. Even if it's spread get it out then nuke the rest of it but that's all me in fear and reading the internet which I have to stop doing because the more I read the worse it seems :( Just a bad, bad, bad day here.
Posted 9/30/2014 1:37 AM (GMT 0)
Hi -

Sorry about your situation, but take a deep breath and don't panic. First, you should know that some research was done on the effect of waiting for treatment, for folks with not very aggressive cancer like your husband's. The answer is that a few months makes no difference. It's not advisable to operate less than 2 months after the biopsy, because the tissues need time to heal. So don't feel that you have to jump immediately, and don't beat yourself up for not having decided already. Your first doc is a total jerk, and at the border of malpractice, and I would run -- not walk -- away from him.

This board, like many boards, is over-represented by advanced cases and people who are having a recurrence, so keep that in mind as you browse. People with statistics like your husband have an excellent change of being treated once, and having that solve the problem for the rest of their lives.

MD Anderson in Houston is world-class and not too terribly far away. You could possibly make a day trip there and line up a consultation with both a surgeon (all urologists are technically surgeons) and a radiation oncologist so you get to hear both options.

I'll underscore what others have said in that the experience level of the doctor doing the treatment is extremely important, more important that the choice of treatment itself. In other words, if you can't afford to travel beyond Little Rock, and that city had a radiologist with a lot of experience treating PC but a surgeon who was just starting out on DaVinci robotic surgery, there's no question I'd choose the more experienced guy. Same applies to robotic surgery vs. conventional open surgery.

Good luck.
Posted 9/30/2014 1:57 AM (GMT 0)
Hi and I hope I can help with a few thoughts.

First of all, you do have time. Really. Prostate cancer is a very slow growing cancer and there's nothing about your husband's stats that suggest you need to be in a hurry. (That said, I know how you feel. Before my treatment I kept thinking that every time I sneezed I was spraying cancer cells around my body!)

Second, try not to work from a perspective of fear. Again, easier said then done, but your husband's cancer is VERY treatable and he is extremely likely to do fine. Instead, try and take control of your decision. When I was young my father used to tell me that it was impossible to make a good decision when I was upset. He obviously wasn't talking about PCa, but it sure applies.

Keep in mind that the tough part is not going to be a cure, it's going to be the side effects. And unfortunately all of the treatment options come with their fair share of side effects. That's really what you and your husband need to weigh in your mind.

You and your husband have been dealt a crummy hand, but your ace in the hole is that prostate cancer offers you time to make a decision. Don't throw away your trump card without making as informed a decision as you can.

Good luck. You know where to find us.
Posted 9/30/2014 2:12 AM (GMT 0)
I had Cyberknife therapy in Denver CO and would strongly suggest you contact them or Dr Medbury or Katz to discuss this modality before surgery.
Posted 9/30/2014 2:27 AM (GMT 0)
Hi

My stats were similar to your husband. I ended up with RALP but that was my choice after exploring my options. In spite of a positive biopsy, don't make a decision until your are comfortable with your choice. You should know that I am doing fine after 10 months. Still have some side effects but I am also still improving. You and your husband have a journey in front of you but as long as you make it together, you will get where you need to go.
Posted 9/30/2014 9:25 PM (GMT 0)
Thanks for the replies. Sounds less scary when you guys put it in perspective the way you have. I'm not really scared when I read the posts in this forum just when I go beyond and go out into cyberspace to other websites w/ scientific studies. At least listening to you guys I don't feel as hopeless. I feel like we did the right thing changing doctors even though we have to wait the two weeks. Hubby is not doing well with the news and it almost seems like he's given up and fate is sealed. I believe attitude is a big part in battling this disease. I've started both of us and drinking tons of green tea, every study I read on that is positive and it won't hurt and I feel like there must be some truth to those studies. Anyone have any suggestions on dietary changes, supplements etc. that have helped? We're willing to try anything (not as a cure but to slow down progression at the very least). I have read good studies about selenium also. Anyone tried that?
Posted 10/3/2014 3:18 AM (GMT 0)
Sorry I am late to your thread but I was on a cruise the last week in Sept. so I was off the forum, Internet on a ship is slow and expensive.

You posted on my thread about the PCa song "Superman". I saw you were new so I back tracked and found this thread.

First off, welcome to our corner of the world. My first suggestion would be stay off the other web sites about prostate cancer and stay with us here. Reading too much can drive you crazy. The people here can tell you more than you can find in books because we have lived it.

Secondly, as others said, PCa is very slow growing. My surgeon said judging by the size of my tumor, I had cancer for at least 10 years with no symptoms. Very typical here! A couple of months will not change too much at all. As someone said, your husband has to heal from the biopsy 6-8 weeks any way, even if you had a surgery date.

Third - I don't like to preach to someone about which treatment option is best for your husband. He needs to decide. My wife and 2 Breast cancer surviving sisters all said "Get it out" the same day I was diagnosed. I told them slow down, I need to check things out. The side effects will be affecting ME! Well, I chose DaVinci but that was my
choice. IF your husband chooses surgery, get the best doctor you can
even if you have to drive to Dallas or Houston. There are no do overs!
I found a "rock star" surgeon who had done over 5,000 surgeries 140 miles away and he was on my insurance plan.

I could have gone back to work in 2 weeks but things were slow at work so I took 3 weeks off.

Side effects, well I'll tell you what my urologist said after he told me "you have prostate cancer", he said "from this point on, your life is going to change" and it has! I was one of the small percentage of guys who could not get continent after a zillion Kegels! But I had surgery this year to correct it and now I am about 95% of what I was like before surgery. ED, yes I have it, but what the doctors and books don't tell you is you can have an orgasim without a hard erection. Yep, it is true! I never would have believed it, and it actually feels better than before. And there is no semen coming out which my wife likes a lot.
*results may vary*

Glad you both fired his doctor, he was not helping. Sounds like you are on the right track now.

Your lives are going to change, but it is highly unlikely your husband will die of prostate cancer. This is just a bad bump in the road that you will both go through and then he will be a prostate cancer survivor like the rest of us, eating healthier, exercising more and your marriage will be stronger for it.

Remember, "You're not Superman!" We are here for you both, 24/7!

Bill from Florida previously from Dallas cool
Posted 10/3/2014 11:08 AM (GMT 0)
Doc. says can return to work in 6 weeks. Is this about right in your opinion? Can you go back in 6 weeks. Is hubby going to leak forever? Never get an erection?

Angel,
These were some of my major concerns with surgery as well. That is why I sought other alternatives. Please do yourselves a favor and check with a radiation oncologist before you accept that your hubby is not a good candidate for RT.
As for your concerns, after my LDR brachy, I returned to work after 3 days, to the gym after 1 week. I do not leak, and my erections are just fine. Please consider your options.
Posted 10/3/2014 3:23 PM (GMT 0)
Angel
I'm retired but I was playing golf three weeks after open surgery. My cath was out after 13 days so I could have gone to work at a desk job in two weeks. No heavy lifting for a while. Walking is good. Nobody notices the depends or pads for incontinence so they don't prevent working. Frankly the treatment that takes the most time is External beam radiation although it's only 15 minutes a day for like 40 days. Commuting of course is extra. Good luck and choose the best practicioner you can. Your first doc was a jerk!
Bob
Posted 10/4/2014 2:04 AM (GMT 0)
Thanks again, you all, for the replies. I am steadily researching and reading the forum and writing down all questions and concerns for our visit on the 16th. You know when your spouse gets cancer HE doesn't have cancer, WE have cancer. I have two step children in their 20's and we have one child together (age 6) it's been very hard giving him "just enough" information but he knows something is going on and his behavior is showing it. I don't know if brachy is even an option since I read somewhere (I think it was in the book the urologist gave us) that said you can't do that if you have a small child. I don't know if they were talking about an infant or a child our son's age. Bill, you are a wealth of knowledge as well as all the nice people here on this forum. Called today to get medical records faxed to new doctor and they won't even return my call. I still think he's had this since at least 2007, I know he's had the ED and nocturia has been happening since 2007, the doctor always wrote off his ED as low testosterone (which he tested for but not PSA) and he wrote of the nocturia to the fact that he doesn't get in until 10 pm and drinks w/ his meal before bedtime. In fact, it was just a fluke that his PSA was tested at all. Our regular doctor was out that day so we saw a different doctor because hubby had a staph infection and when he ran blood work he ran a PSA. Our regular gp does not even test PSA and I quote from our gp "Most men if they live long enough will have prostate cancer but they don't die of it they die of something else" Yes, seriously, won't be seeing him anymore either!!! We're keeping our heads up, now hubby is afraid if he has to wear pads he'll smell of urine and "will smell like the nursing home", oh goodness the stuff he comes up with to worry about. I just want him here with me and our child and get rid of this hell demon cancer.
Posted 10/4/2014 2:32 AM (GMT 0)
.
get a second opinion; and if RRP is still an option find a Doctor with lots of experience. My (then) URO said, " we have a brand new Da Vinci machine"; which translates "None of us have experience on the new Da Vinci machine" so I looked elsewhere.

I found myself a Urologist with years of Da Vinci machine experience who had strong links with cancer research.

Resolving ED issues 12 months post RRP and the prospects look good

.
Posted 10/4/2014 11:59 AM (GMT 0)
Angel, no one here can tell you which treatment that your husband is or is not a good candidate for. I am just asking you to please not let a surgeon tell you that you are not a candidate for brachy. As to the small child situation, I think that is such a small issue that is easily resolved, but again, a radiation oncologist can tell you exactly what the risks are if any. In my case, the radioactive seeds were left in place. That is called LDR brachy, so they did mention some very minute precautions that I don't even remember. However, with HDR brachy, even that small risk is not present.
Please give yourselves every chance to continue a high quality of life. Choosing brachy was truly the best decision that I ever made.
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