newly diagnosed surgery next week

I am a wife of a 56 yr old man in good health, other than being newly diagnosed with PC. His PSA was creeping up for a few years and finally went from 3.2 to 5.8 in 4 months. We just recently had bloodwork done again and in 4 weeks it rose to 7.9.

Biopsy of 12 cores showed 2 cores at upper left leaning on the nerve at 3+4, with between 70% and 90% and the two under it 3+4 at 85% and 50% . 2 other cores had 3+3 and 10% . There is perineural invasion of the upper left nerve. Total of 6 cores affected. Bone scan and MRIs showed no metastases. Boy I hope that made sense.

We did lots of research (I am the online junky) and spoke with several people who also had PC, several docs, and decided that with how aggressive the cancer is, how young he is, and in generally good health, we would proceed with the robotic surgery. It is scheduled for 8/26. We have been told there will probably be a sural nerve graft as they will probably have to take the nerve on the left side.

We are starting to get very nervous. Both about the surgery and of course the side effects. Mostly we just want him to live a long life. At 56 he has many years ahead.

How do you deal with the fear? the information flying at you from all sides? We have read Walsh's book. I have read articles, and websites and found my way here (Thanks Fairwind). How do you handle this black hole of the unknown? And how the h*** did this happen so fast? I thought if you get tests yearly and it showed cancer it would be a watch and wait kind of thing? Sorry. I'm not naiive. just angry and scared.

Thanks in advance for any support.
Judy

Post Edited (TryingToStayCalm) : 8/22/2010 6:26:16 AM (GMT-6)

Judy, as one wife to another, I hear you loud and clear. How did this happen so fast? The answer is that it probably didn't since cancer usually takes years to grow to the point that it can be found through tests and scans.

Your husband is the same age mine was at diagnosis (see my signature). Your husband's situation warrants action and I'm glad that both of you have made a decision as to treatment. The biopsy results you posted made total sense - sounds like you know what you are talking about. If I read it correctly, 6 out of 12 cores were positive and your husband's Gleason is a solid 7. There is a fair amount of misleading information about AS. As you have learned (the hard way), there is no one size fits all formula. Your husband's case (and mine for that matter) proves that annual check-ups and regular PSA monitoring does not necessarily equate to being diagnosed with a low risk disease.

As far as the nerve graft and quality of life, do not assume that this will automatically equate to ED issues. My husband had both nerve bundles spared and still suffers from ED two years after surgery. You will be hearing from many soon and will find that the advice most will give you is sound. My personal opinion is that surgery seems to be the best treatment option for your husband. Did the surgeon mention whether or not it will be done using the robot or via the traditional "open" procedure?

Angry and scared is normal for both the patient and those who love them.

What part of the country do you live, Stay Calm?

For what it's worth, I threw myself into a seris of mystery novels [ James Lee Burke] It gave my mind a little rest.

The week before surgery is bad, filled with fear and what ifs, try to focus on the end of next week, by friday all the fear and anger will be gone, replaced with that was'nt that bad at all. Hang in there, your all most there.

                                                                       Good luck  Tim 

@ Fairwind - I am in NJ and the surgery is with Dr. Samadi at Mt. Sinai on 8/26. GL with your visit with the robo surgeon. My husband never had a day of symptoms either. PSA climbed from 2.0 to 2.5 to 3.2 in a year and a half with NO abnormal DRE and then shot to 5.8, 4 months later with prostate enlarged.

@Tatt2man - thanks for the research kudos and you may be right about stopping all reading at this point. It seems I have upped the reading and the level of anxiety! Hubby's nickname is "M" for this forum's purpose. We have been together for almsot 40 yrs (dating, & married) and feel like our world is coming apart. I know we are strong enough to get through anything but never thought the "anything" would be something like this. Congrats on being in the zero club!

@ Sephie - the only thing I know for sure Sephie is that if he didnt go get it checked when he did - three months later - it would have metastesized for sure. So thank god for checkups even though it didnt provide the best results. I envy people who have deep faith .. mine is not exactly shallow but it's not as deep as I would like. I am meditating for peace for him, an eas(ier) process, and quality of life. The surgery is Robotic and potentially "light" radiation after depending on what Dr. Samadi finds when he goes in. .

@Dave - thanks for the comments. I can certainly understand your anger at not having been told sooner. Sounds like you are on your way to gaining good control and things are looking up for you! M has been out of work for over 6 months and now this. I want him to feel like the man I know he is - and this does not help.

Thanks again to all. I never realized how much sharing and hearing others stories could help. With deep appreciation,
Judy

Hi Judy, welcome and I'm sorry that this PCa is giving you such stress as I well remember my stress 14 months ago.

My sister, who had had cancer surgery a number of years ago said to me a few days before I was eviscerated, "in a couple of years this will all just be a blip in your past." I couldn't imagine it being a blip. I was in major panic overload. But, here I am, and the surgery as well as the pain, anguish and agony which followed the diagnosis and filled panic time to surgery is really just a blip on my backward radar. Oh sure, every 90 days I get a bit fussed for a few hours while waiting for my latest PSA, but with each test that becomes less.

I do, however, have one major side effect which is rarely discussed here but which, in all openness and honesty should be fessed up to and acknowledged: I'm alive! And, the cancer that's likely to kill me isn't PCa ---- it's the one I don't know about. The PCa one is being monitored and if it pops back up ( I had dinner two nights ago with a friend whose PSA suddenly went up 8 years after surgery) there are many treatments I can do to keep the beast at bay.

Now, as for getting on top of your stress, pain, anguish and agony here's some advice from the old fart department:

* Before treatment, which you'll be finished with come Thursday, the critical thing is pathology and the reason it is critical is that it is the key to making the treatment decision. The good news is you've got your pathology, the decision for surgery has been made (and it's an excellent decision, I'm sure) you've got the surgeon, the OR is booked, and, as my surgeon said to me, "the most dangerous part of surgery day for you is the trip to the hospital. Once I've got you in my OR you're safe." At 56 your husband will be even safer in the OR than I was. So, you can reasonably and realistically cross pathology, treatment decision, and surgery off your worry list. "Easy for you to say!" you're saying --- and you're right, it is easy for me to say. I've been there, done that, and frankly it was a piece of cake. I've had more stress having my teeth worked on than the surgery was. They've got drugs in the OR he's going to love. You've not been there, done that, yet. However, if you take a deep breath, and let reason take over from emotion (granted, not easy when you think there are monsters under the bed going to jump out and bite you) then you really can cross pathology, treatment decision, and surgery off the list.

* The next thing to worry about is recovery. I was able to minimze my recovery concerns by telling myself that every day across North America there were thousands of surgeries more miserable than mine --- new hips, new valves, bowel cancers, etc. --- and all those people were coping with recovery; I would too. And your husband will. Once he's rolled out of the OR and says 'hello' to you you'll both feel 1,000% better and each day will get better and better. So, I think you can in all good conscience cross recovery concerns off your list.

*So, we're pretty much left with incontinence and ED. Pretty much worst case is he dribbles when he sneezes and injects whoopie juice to get a woodie. Can you and he live with that? Is having him alive, laughing, and sneezing worth worst case? Yes, right? So, in all good conscience you can cross this off your list. Whatever changes there are in life style are ones you'll learn to live with --- and the operative word is 'live.'

What it boils down to, Judy, is you've got yourself worked up into a state (and I've been there so I have total sympathy for you) and that state is far, far more based on emotions grinding on emotions than it is on realistic, statistical, worries.  Whatever issues M and you may have, need for radiation, or whatever, you'll deal with. 

You ask how do you deal with the fear? You'll deal with it when you put it into perspective. And, when you do, you'll start to worry about the real risks --- the dangers of that drive to the hospital, for example. I don't ask you to minimize the risks. Just put them into perspective. 

I'll be watching for a post from you at the end of the week.

Sheldon AKA Sleepless

"I am in NJ and the surgery is with Dr. Samadi at Mt. Sinai on 8/26"

That's great. You are in good hands. There is no right or wrong choice. You made a GOOD choice, that part is done, now move on.. Concentrate on the pre-surgery prep work, getting some post-surgery supplies ready and then just wrap it up and put it away. You have done all you can do.. Take a couple of days off and have some fun...

Judy - My situation was very similar. I chose the surgery, which was done about 6 months ago and it went well. Once the surgery is done and you have the pathology report you will have a lot more information to go on; if you are on the good end of outcomes in terms of margin status, capsule-confined, etc. you will have confidence that your husband has better than 90% chance of never having to deal with PC again. If not so good, you will have a much better idea of the appropriate next steps.

If you would like to read a good professional article that will likely be of some comfort, please see:

Prostate Cancer–Specific Mortality After Radical Prostatectomy for Patients Treated in the Prostate-Specific Antigen Era
Andrew J. Stephenson, Michael W. Kattan, James A. Eastham, Fernando J. Bianco, Jr, Ofer Yossepowitch, Andrew J. Vickers, Eric A. Klein, David P. Wood, Peter T. Scardino

"Conclusion Few patients will die from prostate cancer within 15 years of radical prostatectomy, despite the presence of adverse clinical features. This favorable prognosis may be related to the effectiveness of radical prostatectomy (with or without secondary therapy) or the low lethality of screen-detected cancers. Given the limited ability to identify contemporary patients at substantially elevated risk of PCSM on the basis of clinical features alone, the need for novel markers specifically associated with the biology of lethal prostate cancer is evident."

http://jco.ascopubs.org/cgi/content/abstract/27/26/4300

Once you have the pathology report from surgery you may also be interested in the online Sloan Kettering nomogram calculator: http://www.mskcc.org/mskcc/html/10088.cfm

Everyone's psychology regarding the surgery and recovery process is different, but I agree with what people have said that the surgery is not such a big deal. I was helped by a pre-surgery meditation tape that they offered at the hospital. They are great with pain control nowadays. The most annoying thing was actually walking around with a catheter for a week or so, but you can easily put up with it since you know it's coming out soon. My best advice is to make sure your husband has plenty to take his mind off the situation: favorite music, books, DVD's, calls from friends etc. during recovery.

Good luck!!!!

Hi Judy,

i am sitting next to my husbands hospital bed, he has just had a RP. I know how angry scared and confused you are feeling and the information overload is something else!

All I can say is that the worst time in this whole situation was 1-4 weeks before the surgery. There were plenty of moments when I was stressing about whether we had made the right decision, whether we knew enough to make the right decision. The surgery and post-surgery period has been mentally easier.

There are many threads here on preparing for the surgery. This takes out a whole lot of stress relating to logistics and planning. I have added you to the august surgery thread and if you wish you can post your experiences there.

Wish you the best and enjoy your time away.

An

To Trying:
I'm a new member who found this site in one of my long, long, late-at-night online searches for any info to make all the grayness of prostate cancer more black and white for my beloved husband, diagnosed after a 6 core biopsy Aprils Fool Day. It's a miserable time, confusing and frightening with no clarity of path. This site is great for support and general info you don't find in the med lit. We are now 7 wks. post surg and waiting for his first psa reading (calling the office tomorrow). Don't stop talking with him, keep others well-meant but sometimes addle brained comments and advice in perspective and trust yourselves to know what's right after you ask the experts, get your second opinions, do your reading. And then don't look back. I still can't believe it's almost fall since we lost the spring and summer in the appointments, research and now slooooow healing. Enjoy the moments you can, take those deep breaths and if you tend towards being physically active, get out and walk/jog, play tennis, anything like that for your own peace of mind. Girls lunches with caring friends are the best therapy!

Folks:

I have an RP scheduled for 9/20.  I wanted to say that everyone's willingness to share their experience and perspective is an enormous help to those of us in the earlier stages of treatment.

I do believe the worst part of this disease is the psychological aspect.  The medical world is at a cross roads in the disease so there are few black and white decisions for patients.  We have to make decisions with incomplete information and face outcomes that are also somewhat uncertain.  The disease strikes at the core of what it means to be "men" in our culture and then drags in our family to share our anguish.

All of you contribute much to the world simply because of who you have become.

Retire1965

 

I wish you luck Retire .. you expressed yourself beautifully .. I so totally agree..

"We have to make decisions with incomplete information and face outcomes that are also somewhat uncertain. The disease strikes at the core of what it means to be "men" in our culture and then drags in our family to share our anguish."

Life is just not black and white and medicine is less science and more art .. combo therapies .. choices in terms of what types of surgeries .. one from column A and two from column B .. and we always wonder .. what if we chose the pu pu platter from column C ... always wondering ...

Sephie .. you made your peace with your struggle and now you are winning the war ..
At some point you have to know you made the right decision and go along for the ride.. that's where we are at for today.. with the help of the people here!

Judy