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Posted 7/17/2011 6:30 PM (GMT 0)
Hi, We are needing help. I'm 51 and my husband is 54 thin and in good health except for the cancer. He was diagnosed with prostate cancer a week and a half ago. His PSA is 5.3, Gleason score is 3+3=6 and his clinical stage is T1c. the urologist said that he had 2 cores with cancer on left and one on right. He suggested radical prostatectomy would be his best option. Because of his age and heath. He says he will take the prostate, limp nobs and left nerve. My husband does not want this because of the side effects. Incontinence and Impotence. And what I have read these are temporary, Has any one suffered from these for more then a year. He is thinking radiation. I have read this is a husband and wife decision. I don't think that is true. Every think I read says that surgery is best chance of cure for a man his age and weight and health. And I can live with the side effects as long as he is still around, But if I force him in to it and he can't live with the side effect he will hold it against me. So the best that I feel I can do is get info and pass in on. So if any one can help. What is the rate of cure with radiation and what are the side effect.
Posted 7/17/2011 6:59 PM (GMT 0)
Welcome to HW and as we say, "hate that you have to be here." It seems like your husband has a number of options and hopefully he will get 2 or three opinions before making his choice. His gleason score is low and his PSA is not too bad. There is a theory that the younger you are when diagnosed the best option would be the most prolofic, which would be surgery to remoce the prostate.

In a perfect world it would be a husband and wife decision but I did my research and kept my wife informed and then made the choice of surgery. Then later I had to have radiation after a reocurrence. Hopefully he will listen to your feelings on the matter and take those into consideration. There are some good links listed on here so both of you have time to do lots of homework. Please keep us posted.

Michael

Posted 7/17/2011 7:02 PM (GMT 0)
Hi. Sorry to hear about diagnosis.  Incontinence is a common problem after surgery. It often improves and becomes minor. Sometimes it does not improve much in a minority of patient. ED is also common and is not always temporary. It varies.

Radiation might be another option. The radiation equipment and choices have improved.

Urologists do not always fully explain the side effects a patient might encounter. Some patients are surprised at the severity of post-treatment symptoms. These vary a lot.

Good luck to you both.

Posted 7/17/2011 7:02 PM (GMT 0)
Seems to me that he may have time to study prostate cancer and then make a decision. Look at the top of this site to see prostate resources. There are some great ladies here that can aid in your part of the process. Hearing the word "cancer" is very scarey and requires a period of adjustment and then going after the best course of action through knowledge. Glad you are here.
Posted 7/17/2011 7:14 PM (GMT 0)
I had a very similar diagnosis and just had on open prostatectomy done last Tuesday. I would be very surprised if a good surgeon couldn't save both nerves. I don't know where you live but I had my procedure done by Dr. Catalona in Chicago. He has done more open RPs than anyone. If possible, I would suggest a consultation.
Posted 7/17/2011 7:44 PM (GMT 0)
Thanks all. We are going to check with insurance and see if we can get second option. This surgeon has come up with a way to replace the nerve with one from your foot. Insurance does not cover this procedure. I almost fell he is wanting to remove it to sell his procedure. Could be wrong but would sure like a second option on the removal of the nerve.
Posted 7/17/2011 7:53 PM (GMT 0)
1st time I have ever read about that nerve replacement thing. Research replaces fear and allows better questions to any Dr. Get through the shock, fear thing and then attack the problem. Great group of supportive folk here IMO.
Posted 7/17/2011 8:10 PM (GMT 0)
First of all, don't panic. With your husband's diagnosis, you have time to figure out what is best for the two of you. Yes, as his spouse you should be involved in the decision-making process. I am in a similar situation and my wife has been involved the entire way. In my case, she is the one most insistent on NOT having surgery.

You definitely need to talk to a radiation oncologist to hear about the various radiation options (there are several). Statistically most doctors will say the effective cure rate is about the same, regardless of the procedure he would undergo.

I am going to have radiation (proton) but there are other good radiation options out there: brachytherapy, both ldr and hdr, and the various forms of imrt. You should study each of these options as well.

In the end, make the choice you are most comfortable with, as it is the one you will have to live with, regardless of the results.

Steve
Posted 7/17/2011 10:33 PM (GMT 0)
With low risk PC, which by all indications your husband has, all treatment options have similar cure rates. Brachytherapy, External radiation, and surgery. The main differences is the side effects and treatment recovery time. The recovery time for surgery is a few weeks and normal side effects are about 50% ED (more if a nerve is removed) and about 11% incontinence; these are permanent and ED and incontinance are 100% for a period of time, weeks or months.
There is no recovery time for external radiation, but the treatments are for a 9 week period, for about 30 min/day. Incontinence is very rare and ED is about 30-40%. There is about a 5% chance of bowel issues. Brachytherapy has about a 1 day recovery time, 35% chance of ED and incontinence and bowel issues are rare.
Most of the Brachy guys on this forum have had no permanent side effects; in contrast about 50% of this forum posts deal with the side effects of surgery.
Research as much as you can and whatever option you choose insure that you get the most experienced doctor that has done 1000s of procedures. In you husband's situation the skill of the doctor will have much more impact on his cancer control and his side effects than the treatment you choose.
JohnT
Posted 7/18/2011 1:32 AM (GMT 0)
Welcome to HW but sorry you have to be here.  You just got some very good advice from JohnT...please listen.  I chose brachytherapy because the cure rates were just as good as surgery but the side effects, on average, were considerably less onerous.  If you or hubby want to read my first person story that is almost 3 years old now, feel free to copy and paste this "journey" at the bottom of my signature.  It is not surprising that your urologist suggested surgery as he is most likely a surgeon.  His suggestion does not make him a bad person but that is just likely what he is most comfortable with.  However, you should definitely consult with an experienced radiation oncologist to explore your options.

Interestingly enough my wife also first favored surgery...she was of the "get it out" mindset.  My mindset was "get it cured" and, by the way, give myself the best chance for good quality of life.  We are now both very pleased with my decision.

Good luck,

Tudpock (Jim)

Posted 7/18/2011 1:58 AM (GMT 0)
wife and husband:
glad you found this place - it is a good source of patient to patient support and information -
-his stats look good for taking time to get the best decision for him - the best treatment/doctor/hospital - we are all different and have different reactions to surgery and radiation, etc -
-your mention of replacing the nerve bundle intrigued me - so I took a walk on the internet superhighway and found this article - very interesting -
www.harvardprostateknowledge.org/can-nerve-grafts-restore-erectile-function

-wishing you best on your search - it can be a complex situation or a simple balance between Quality of Life ( regarding ED , incontinence, side effects) and Quantity of Life ( being on this side of the daisies).

hugs to you both,
Bronson
Posted 7/18/2011 4:21 AM (GMT 0)
You need to get copies of some books - check the library, or bookstores.
Some useful books that I found (and consider worth reading): Guide to Surviving Prostate Cancer (Dr. Patrick Walsh, 2nd ed.) – this is a textbook-like reference. My urologist thinks it is too much information, but the first question you will get signing into HW (healing well) is “have you got Walsh’s book?Dr.

Dr. Peter Scardino’s Prostate Book 2nd Ed. (2010) – Same size, but slightly less detailed. A good alternative if you can’t find Walsh’s book.The second edition is much improved.

The Cleveland Clinic Guide to Prostate Cancer (Eric Klein,MD, 2009) – Very short and concise paperback. Interestingly enough, it does have some useful tables that Walsh does not have in his book.

I would be most surprised if your insurance did not cover a second opinion (mine actually requires one for any major surgery such as this). You should talk to both a surgeon and a radiation oncologist.

The replacement of nerves with one taken from the ankle is known and accepted, but as you have seen, insurance may not cover it. My surgeon agreed that it was possible, but did not suggest it.

There have been a number of comments about side effects. Some residual incontinence and total ED remain with me almost two years out, so I will insist that you do not discount them.

Radiation (yes, I've had that too), can have side effects months or years later, so consider that as well.

You might want to look at our list of "various" information -

Prostate Cancer: The Really Useful List made by HW people for HW people.
https://www.healingwell.com/community/default.aspx?f=35&m=1717641
Posted 7/18/2011 5:42 AM (GMT 0)
Hi
My situation was almost identical to your husbands in every respect except one: my PSA was much higher. No matter: i qualified for the treatment i received, which is not easy to get and i believe in such case as his and mine is the best option.

Its called Cyberknife.

But lets not get ahead of ourselves. First of all, you just found out. That is the most difficult period.

Breathe. Nobody is dying. In fact, you have a 97% chance of complete remission, so, honestly, don't panic.

Here is what i would do: talk to as many folk as you can about your options, which are NUMEROUS. With these numbers your cancer has no way of hurting you yet, and you can get rid of it permanently, in a number of ways. Research thoroughly. Get 1st, 2nd an 15th opinions. Double check. Weed out people who are pushing a certain form of treatment on you because THEY are the ones that happen to perform the particular procedure. Talk to doctors that will NOT be treating you. Trust NO ONE. Whatever decision you make, you will have to live with the results (notice i say "live"). Thats right: most of us PCa sufferers get rid of the disease and go on with our lives.

Ok: to the meat of the problem. Please, remember, this is just an opinion, but I just went through the same thing, and pulled the trigger on Cyberknife last week. The research shows clearly, that most forms of PCa treatment these days offer a similar chance of success (surgery, various form of radiation). Forget watchful waiting: your husband is too young: you need to kill this thing. So, if all these treatments offer such great chances of survival, might as well go for the one that offers the least likelihood of side effects (my opinion). That is radiation. Now lets look at long term effects, as research shows. We are left with brachytherapy (high dose), or cyberknife. Both excellent options.
Long story short: I just went through a 4 day radiation regimen. Went straight back to work. I HAVE NO SIDE EFFECTS: everything works! ( a little discomfort when peeing which is already better and is supposed to pass in one week), Granted, if the RO screwed it up i will have problems later in life with damaged urethra or bladder or whatever: a real concern, but stats are good in that regard. Surgery? yes it is clean and many return to their lives as they were in a year or two (you can wait, right?), but there are many more potential problems that can change your life RIGHT NOW if that is what you choose.

Best of luck with your decision, and don't forget: unlike many others on this forum, you have ALL option open to you, with your results. So don't worry, it will all work out (97%)
Posted 7/18/2011 6:21 AM (GMT 0)
Definitely get a second opinion, particularly on whether the nerve needs to be be taken. If he is having conventional surgery (not robotic) that decision might be made during the operation; if he is having robotic surgery there are other studies (such as color doppler ultrasound) that can shed some light in advance on whether the nerve really needs to go. Take your time, educate yourselves; there is no need to rush this.
Posted 7/18/2011 9:53 AM (GMT 0)
We all know exactly what you are going through so firstly, sending you a huge hug from the UK.
When my husband Jeff was diagnosed following a routine health check it was like the rug had been pulled from under us.  Jeff refused surgery point blank – said he’d rather be dead than incontinent/impotent (and he meant it) I said I’d rather have him incontinent/impotent than not at all!
And so our journey began – reading everything we could lay our hands on, met with a surgeon, a radiologist and an oncologist and with Prof Langley at St Luke’s Cancer Centre to discuss Brachytherapy.
For us when we had digested all the information on the treatments vs all the possible side effects it was a no brainer – Brachytherapy.
Your husband will have to make his own choice in his own time but please do read everything you can on Brachytherapy before ruling it out. 
Jeff had his implant 5 months ago and life continues as normal for us.  Who knows if we made the right choice, time will tell, but for quality of life and side effects, I know in my heart that we made the right choice for Jeff.
Try to stay calm and take your time, don’t let anyone rush you into a quick decision.
x
Posted 7/18/2011 11:08 AM (GMT 0)
"I chose brachytherapy because the cure rates were just as good as surgery but the side effects, on average, were considerably less onerous. "

 

Same reasons I chose brachy. No disappointments whatsoever. I highly recommend it. It is truly like I was never diagnosed at all. Please give this option some consideration.

Posted 7/18/2011 2:25 PM (GMT 0)
Here's one more recommenation to seriously consider BT (or a combo of BT/IGRT) for all of the reasons given above by others.

And this is from one who started out thinking I should have surgery....as did my wife. We are both happy with my choice.

 

Posted 7/18/2011 6:00 PM (GMT 0)

wife51 husband54 said...
Hi, We are needing help. I'm 51 and my husband is 54 thin and in good health except for the cancer. He was diagnosed with prostate cancer a week and a half ago. His PSA is 5.3, Gleason score is 3+3=6 and his clinical stage is T1c. the urologist said that he had 2 cores with cancer on left and one on right. He suggested radical prostatectomy would be his best option. Because of his age and heath. He says he will take the prostate, limp nobs and left nerve. My husband does not want this because of the side effects. Incontinence and Impotence. And what I have read these are temporary, Has any one suffered from these for more then a year. He is thinking radiation. I have read this is a husband and wife decision. I don't think that is true. Every think I read says that surgery is best chance of cure for a man his age and weight and health. And I can live with the side effects as long as he is still around, But if I force him in to it and he can't live with the side effect he will hold it against me. So the best that I feel I can do is get info and pass in on. So if any one can help. What is the rate of cure with radiation and what are the side effect.

I am pretty happy with the results of my radiation treatments. As far as rate of cure goes it depends all upon who you talk to.

If you are in the Chicagoland area there is a support group meeting on Aug 3. I will post more as it gets closer to the date.
Posted 7/18/2011 9:43 PM (GMT 0)
I once had strong feelings that surgery was the way to go...When performed by an expert, it is still a good, solid choice. But the side-effects can be life-changing. JohnT gave sound advise.. Todays advanced radiation treatment techniques have come a long way. You should a least talk to a Radiation Oncologist about both beam and seed treatment options.
Posted 7/19/2011 12:29 AM (GMT 0)
Thanks again to all. We're in east Tennessee. He is seeing a Dr. Edward Kim. At UT hospital. My Dr. said he is a great Dr. Is it good to get a second opion in the same group. Are is it best to go to another group. And should he get a second biopys are just use the first doctors labs? If any one knows of a support group in knoxville tennessee area please let me know. Thank you all for the help. I don't fell in such of a panic any more. My husband does listen to my suggesions it's my feeling that I would not want to push him into what I want. Also we do got the book Dr. Walsh's Guide to Surviving Prostate 2nd Edition. Been great help but hard to find time to read work 40 hours a week and nether of us are good readers. Plus have not told are kids yet age 33, 25 ,24,and 20. Still have one in collage summer classes and don't want any more stress on here this is here 6th year having a hard time pass this summer classes got to wait 3 more week and then she will be done. 20 year old at home so can read when she is around. But again Thanks for all the help please keep it coming go back to Dr. wendesday. Wish us luck. God Bless You All! I just keep thinking this has to be a bad dream!!!! PLEASE LET ME WAKE UP!!!!
Posted 7/19/2011 12:51 AM (GMT 0)
If you go to another group for the second opinion (which I recommend) they will probably want to have the biopsy slides looked at by another pathologist as well. I know that my radiation oncologist at IU proton therapy center insisted on a second biopsy opinion (as well as a bunch of other things). It is a good idea just to be sure. By the way, although it is a long way from being completed, UT is building a proton therapy treatment center.

Steve
Posted 7/19/2011 1:02 AM (GMT 0)
WAKE UP !

There, glad to help.

Don't mean to make light (too much) of your panic. There's a reason my 'handle' is Sleepless. But, you need to put this into perspective and one of the best ways to do that is through education --- learning something about this disease.

One thing you do need to do is get your husband's slides read by a second pathologist and someone who does lots of prostate tissue work. An expert. Even if the doctor who first read the slides was the best in the world, you still want to get a second read. This pathology reading is as an art as well as a science. If the second pathologist agrees with the first, then you're in great shape and you have lots of options open to you. If the second pathologist upgrades the Gleason (that's what happened with me) you go with the less good read as base line and make your plan from there. While you may feel you have fewer options (you probably really don't but if a second pathologist suggests the cancer is more aggressive than the first has, you may feel more inclided to a more aggressive treatment --- at least I did) as I was saying, while you may feel you have fewer options you'll also be glad to know you're making informed decisions.

All in all, if the second pathologist agrees with the first, your husband likely has an excellent future and a long, long life ahead.

I wish you well and I look forward to more reports from you.

Sheldon AKA Sleepless
Posted 7/19/2011 1:57 AM (GMT 0)
With a similar daignosis I had brachytherpy 4 weeks ago. Practically no side effect.
Posted 7/19/2011 2:21 AM (GMT 0)
I got my second opinion from a uro who didn't know my primary uro, and other opinions on radiation as well. All had the same opinions, even though I had to "read between the lines". Generally, the radiation oncologists ("RO") quoted a 60-70% success prospect, which I took as poor (I was 56, and expect to be around a while yet), so I went surgery. I sent my file to MD Anderson, and they did no better.

A second biopsy opinion can be had using the same sample slides (they are kept by the first laboratory). You need to arrange with the second lab (Bostwick Laboratories is well respected), and advise your uro that they will be asking for the slides (only as a courtesy to the uro, once the patient signs for the next opinion, they have to send them). A second biopsy should not be required.

Also, I did investigate, and want to use, seeds before I was turned down as too advanced. Consider all treatments. 

Please look at www.ustoo.org, and look for "a chapter near you". I've pasted in those in TN (as of 7/2011). You should also call the largest local hospital that handles cancer patients in general. They should have a cancer co-ordinator who might help with other support groups. You can also check the American Cancer society for local chapters who might have survivor meetings, even if not prostate cancer.

Cookeville Us TOO Upper Cumberland Cookeville Reg Med Ctr., Education Room #2 meet quarterly 7 pm 2nd Thursday of Feb May Aug Nov Brian O’Connor [email protected] 931 537 6786
Kingsport Us TOO Greater Kingsport Prostate Cancer Support Wellmont Hosp (underground parking, elevator to 4th fl) Wellmont Heritage Conf Rm 3rd Tues. 6:30 - 8 pm Kathy Visneski RN OCN [email protected] 423 224 4000
Nashville Us TOO Meharry of Nashville Meharry Medical College Dept of Surgery 4th Floor conference room 1055 D B Todd 1st Friday of each Month at 5 pm Flora Ukoli ***[email protected] 615-327-5653
Posted 7/19/2011 5:56 AM (GMT 0)
Dear Wife,

There have been some excellent responses here.  I know how frightening this can be; we went through this 15 months ago.  Each case involves a personal decision, and as wives, we are the main support system.  It is a decision that partners need to discuss, and research is absolutely necessary.

My husband was given about 4 months to decide, so it gave us lots of time to think and talk things over.  He then went to the hospital to meet with a variety of doctors to determine which procedure was the best.   So, he actually had the opinion of four doctors.  All doctors will look at the biopsy results.  The radiologist steered him away from radiation.  Because he wasn't overweight and in good shape, we went with the DaVinci prostatectomy. It is important to have a highly experienced surgeon should you choose to go with surgery.

Incontinence was an issue for awhile, but now my husband almost never has a problem except if he walks too long.  Sadly, impotence is still a major issue; however, we have worked around this.  That is like the second part of the story.  For some men, it isn't an issue.  Your DH is younger than mine, so you may have other options.  A second opinion does help.  Our goal was to get the PCa out before it spread.  However, many here have had great success with other methods.

I wish your husband the very best in whatever decision he makes.  It is a journey together.

Many blessings,

Aimzee

 

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