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Posted 10/13/2008 9:24 PM (GMT 0)
On Friday, my husband was diagnosed with prostate cancer. By Friday night, I was all over the internet trying to learn all that I could. This morning, I was on the phone with his urologist's office getting the information I thought we needed right now.

PSA: 5.0
Gleason: 3+4 = 7
Prostate size: 33 CCs

I now realize I still need to find out what his clinical stage is. My husband, of course, is floored. The cancer was detected after pre-op blood tests for a shoulder injury found a PSA that was high. That led to a biopsy. And now we've been told about the cancer. The doctor feels it's somewhat aggressive and wants to remove the prostate through the Da Vinci robotic procedure. (I've already done a check of the doctor and all that I've found is glowing.)

My husband is in shock. His first child, from his first marriage, died from testicular cancer some years ago. That event truly changed him. Now this. We also have a six year old who, thankfully, has no idea what's going on. However, I feel like someone with multiple personalities. I'm being strong and pro-active for my husband. I'm pretending to be my usual happy self for my child's sake. All I want to do is go sit in a corner and cry. I've cried all over this keyboard over the last few days.

It's not that I think my husband is going to die. I think they've caught it in time. However, I'm truly fearful of the after effects of the surgery. I don't know that he can and will handle it well. I guess I'm saying, "I'm scared and I want to get in the bed and pull the covers over my head!! darn it!"

There! I thought that vent would help me to feel better. Well, no. But at least I'm venting to folks who understand. Thank you for listening.
Posted 10/13/2008 9:49 PM (GMT 0)
SurfingSpouse,

I fully understand the shock your husband is feeling. Been there, done that.

As the caregiver, you have a whole set of emotions to work through as well. It is like the grieving process, and it will take time for you and your husband to work through each stage.

My PSA was 4.4 when detected, not that far from your husband's score. My Gleason turned out to be 3+4=7, same as his.

Today is exactly four weeks after my radical prostatectomy. (I was not a candidate for the Da Vinci). I am starting my second week back at work, pain free, almost 100% continent. I can drive myself to work, climb stairs (slowly), shower, shave and dress myself. With Da Vinci surgery, your husband should be up and around in less time than my experience.

While every case is different, and there are no guarantees, you WILL get through this if you take it a day at a time, and let your fellow travelers at HW provide encouragement and support. You came to the right place...take if from one who found unbelievable strength from my unseen friends at HW.

Bless you,
BillSD
Posted 10/13/2008 9:50 PM (GMT 0)

We are listening.  We do understand.  I am heading out the door right now, but very soon several more members of Healing Well will check in and share their experience with you and your husband.

I wish I could say that all the bad things will go away and you will happily go on with life.   You will need to deal with all sorts of indignities during the next few months, but you will, with help from the people here, get through it. Things will get better.

Good luck on this journey.

Posted 10/13/2008 9:59 PM (GMT 0)
SurfingSpouse,
Sorry that you had to come but welcome to this great site. You are now feeling what everyone of us here felt on receiving the news we have cancer, Shock, disbelief and fear of what the future holds. But what is absolutely the most important thing to do at this time is to take a deep breath, sit back and learn everything you can about what you are facing. It is sometimes said that if you have to get cancer then prostate cancer is probably the easiest to track and possibly overcome. Although I myself had surgery do not jump the gun with a decision to go that route. Likewise with robotic surgery.......many very good surgeons prefer open surgery as they prefer to have the feel of the prostate as they remove it ( in other words feel as they go). Surgeons want to operate, radiation docs want to radiate (external beam, seeds and proton) and there are other methods of treatment (HIFU, Cryosurgery) Yes there are side effects to all treatments with different impacts between treatments and from patient to patient. Make sure you come away from any consultation with a copy of any tests you have undergone including the original biospsy. Gleason score is a measure of the amount the prostate cells have changed and your score of 3+4=7 is about in the middle of intermediate. I have included a link which helps to explain Gleason and staging.
www.stjohn.org/InnerPage.aspx?Pageid=1446
Over the coming weeks study, study,study then research, research research till you're sick of it and will quite possibly know as much about the disease as most docs. Then the decision regarding the treatment you select will be based on sound information and understanding and with your particular needs and desired outcomes in mind rather than being driven by fear and panic. Others will chime in with more excellent views and suggestions and no matter what the question ask away and you will be swamped with answers form others who have already been down the same road.
Bill
Posted 10/13/2008 10:11 PM (GMT 0)
SurfingSpouse--Welcome to the forum.  My wife and I, too, were 'floored' to get the prostate cancer diagnosis over two years ago.  I understand how you and your husband feel right now.  Venting is good!   The prostate cancer journey is an emotional roller coaster and it helps to not do it alone.  A forum like this, with men and women members who have been exactly where you and your husband are, can be a life-saver.

It looks like you've probably caught it early based on the data you've posted here.  While it's devastating news to hear that your husband has been diagnosed with prostate cancer, the good news is that the earlier it's caught, the easier it is to treat and cure.  It's fortuitous that your husband was tested when he had the shoulder injury.

All three of the well-established treatments--radioactive seed implants, surgery  and external-beam radiation--have excellent cure rates and long-term survival.  The newer treatments look very promising but don't yet have an established track record.  It's your choice, so do the research (this web site is an excellent place for information and support) and make your decision.

 

After extensive research, my wife and I decided on surgery for reasons that were important to us:  (1) pathological staging where the extent of the tumor and margins can be accurately determined  (2) The PSA goes immediately to zero  (3) The availability of options like salvage radiation if the cancer recurs  (4) Incontinence and impotence tend to get better with time  (5) Less likely to get diarrhea and painful urination.

 

Take care and hang in there...Tim

Posted 10/13/2008 10:14 PM (GMT 0)
Thank you, one and all. I'm already feeling a bit better now that I've found this forum.

I seem to be a quick study about most things. When I spoke to the guy at the urologist's office today, he said he was impressed and that I already knew more than many of the people who worked in the office. I will continue to read and learn. Then I will slowly relay my information to my husband.

By the way, he's 54. He'll be getting a CT scan this week and a bone scan next week. Then we go back to talk to the doctor. That gives me time to keep reading and learning.

Thanks again!
Posted 10/13/2008 10:30 PM (GMT 0)
Dear Surfing,

I can understand your fear and stress at the moment. Our child was 6 too when hubby was diagnosed. The worse thing I did was not tell him and try to cover it all up. He heard us whispering anyway, and knew all about it - told people at school.... in retrospect I feel we should have told him in words he could understand earlier when we had come to terms with it (which you do in time)... not necessarily now, but sometime. I thought our son was too young and we tried to protect him, but this turned out to be a mistake. Just sharing this so you are aware that even 6 year old can pick up on things. We all make different decisions as parents, and we try to protect them, but it is hard working out what to do. Good luck - the shock and anxiety and wanting to pull the covers up slowly turns around as you find your strength through researching and action.

It is not easy, but there are many people here - singles, couples and parents, who do understand something of what you are going through. Try keeping a personal diary - I did, and it helped for those vents I wanted to have privately - also to keep a track of all dates and progress - as you tend to forget details/dates and people consulted, under such immense pressure. My husband had lower PSA but same Gleeson. There is a lot of HOPE in the treatment and management of prostate cancer as you will find through your research. Good luck.
Posted 10/13/2008 11:07 PM (GMT 0)

Venting is healthy.   So is Healingwell.com.    After the diagnosis, it's a blessing to find this site. My husband was diagnosed in Jan. 2008 and I was fortunate to find this site right away.  Although I was an observer at first and only participated later on to help with what I have experienced, I will say I have not missed a day visiting this site for 10 months.  

You will find this is a haven for education, venting, sympathy and most of all what we have in common - prostate cancer.   Ask away.   There are so many smart people here who have helped me and my husband tremendously.  

Good luck and keep us posted.

Pat

Posted 10/13/2008 11:24 PM (GMT 0)
creed_three, I've already begun to talk to your son about what's going on. The thing is I have to move slowly because my husband is still dealing with the news. I don't think he's quite ready to discuss it with our son.

Now I truly am feeling better. My husband doesn't want to talk much, but I'm able to give him a little information here and there. I just reminded him that no matter what treatment we decide on, he'll have to be as dedicated to his recovery for this as he has been for his shoulder. That seemed to stick and it's a start. Thanks, everyone!
Posted 10/13/2008 11:35 PM (GMT 0)
Dear surfingspouse, ( I was a surfingspouse when my husband was first diagnosed...) You have found a wonderful spot to vent. We all understand...There will be many emotions over the next few months....Just accept that, and dont worry about talking and thinking and crying...

.The best thing you can do is to arm yourself with KNOWLEDGE. It is power for you and for your husband....You will also find the doctors will treat you more as an equal.... Each treatment has SEs ,,,that is a given and each man will have different reactions, depending on age, stage, gleason, psa, and also DNA. We originally chose radiation...after much research and talking to three different doctors..my husband thought it would be less invasive and have less SEs.
Well, if it had cured the cancer, yes, but unfortunately, four years later, the psa began to rise again, and the salvage surgery was horrendous for him...because the radiation damage did not heal. and he got a fistula and has been totally incontinent for 2 years. ...However, if he had had the surgery first, and then it returned, he could have had the salvage radiation, without those SEs.

But, saying that, I have talked to others who have had very good luck with radiation.....so , again it is a choice that should be made carefully, and with full knowledge, and knowing that you should never second guess yourself afterwards...

Come here anytime, and someone will respond to your questions or your venting. Diane

:-)
Posted 10/14/2008 12:11 AM (GMT 0)
Hi surfingspouce

Sorry you have to be here but glad you came. My stats were about the same as your husband's. The first two weeks after finding out about the cancer were just a blur. Then I got to work on what treatment to get. I changed Dr's because I did not like his reasons for not having surgery. My advise is to seek out a hospital that has a multidiciplinary approach to prostate cancer. You will get a lot of information about what options you have to treat this. Talk to the people who are living with this on this forum and others. Make your decision and don't look back. As for my choice, I chose open surgery. I have little or no problems except for ED. Best of luck to you and keep in touch.

Mika
Posted 10/14/2008 1:11 AM (GMT 0)

Hi Surfing Spouse!!!!

So sorry we have to meet like this, but this is a great place to meet. I too was 54 when I was diagnosed earlier this year. I too was floored to say the least. I too DID NOT want to talk about it. I felt I couldn't handle any part of this.

Well time passed by and I "crossed the bridge". As you can see from my posting at the bottom, I had DaVinci surgery in July. I worry about everything and I worried about this too. Needless to say, it was wasted worrying as all went well.

Please, please post any questions or click on my email and send me a question. I'd be happy to reply to any question he might have if he is unwilling to have it posted.

I wish I could meet you both face to face and let you know I do understand. We all are here and want to help. It is kind of like the little girl who didn't come home from school on time on afternoon. The mother began to worry where she was... and then saw her coming. She told her mother her best friend dropped her china doll and it broke so she stayed with her friend. "Oh that is great" the Mother said. "How nice to help her fix it."

"No," replied the little girl, "I couldn't fix it. But I didn't know what to do so I sat down and cried with her."

Please know that I myself can be an encouragement and answer questions, but I can't fix it. But I sure am willing to sit down and cry with your hubby.

We care.

Posted 10/14/2008 1:43 AM (GMT 0)
You might also want to check out the treatment charts and case histories on the yananow site

www.yananow.net/progress_chart.html

and the treatment experiences here

www.yananow.net/Experiences.html

Bill
Posted 10/14/2008 2:10 AM (GMT 0)
what turns the moment around is when you start to feel so fortunate that you got caught early. There is time and options to get the right thing done. I had the Davinci surgery and am very happy with my choice. It was amazing I went back to work two days before our plant was flooded, then spent the next few weeks working in the water. Fun challenge getting beyound the pads.

Find the right doctor and hospital and four weeks later you will be healing up. For me that means five little cuts. It works out.
Posted 10/14/2008 2:21 AM (GMT 0)
hello surfing spouse . i had the robotic done in may and my wife said the same thing  about me , dont know if he can handle the side affects?. i was very young 43y.o. every one here can help you and your hubby WE DO CARE AND UNDERSTAND WHAT YOUR GOING THROUGH, if you need a womans view my wife is more than willing to talk to you her name is chris,e mail her at   [email protected] pleeze hang in there we researched the crap out of this disease and we have alot of good info as do alot of members here, we are MORE THAN HAPPY with our treatment choice and you hubby will do fine i promise , no one worries as much and as needlessly as i do and it was all in vain,wasnt worth the worry, oplease understand that the doc and hospital have a huge wiight on the outcome of this.we went  to who we beleived to be the best in the buss. please i emplore you  to call if you have any questions there is life after cancer and it is a good one i was bck  to work at 3 weeks, totally continent at 3 months and having sex with my wife 3 days after  cath removal  i too was worried more than anything about the sidee affects to be honest the continence thing wasnt s..t i used my wifes panty liners  thats how minimal it was ,we are here for ya, and just a little info for your own wellbeing, these people on here are the jfreakin greatest, they were answering my questions from a hotel room 1 day after surgery thats how dedicated everyone here is and we all will be for you and hubby as well we have an enormous amount of info  about docs nationwide if ninterested have a wonderful night and rest assured your hubby is gonna do just fine    ,,,,,,honest...........................dirt

Posted 10/14/2008 3:04 AM (GMT 0)

Surfingspouse,

You have taken the correct first step, reach out, to ask and to express yourself. You are never really alone, ever.  Dont let the situation describe who you are, but you to describe the situation. You and your husband are truely entitled to morn this news. Set this time to morn and also set a time to rise up and get to work at beating it.  This disease can be beaten and you and your husband will be one of the many that does, believe in it. 

In my situation my wife and grown daughter took a very aggresive approach and I had to ask both of them, who love me very much, to settle down a little bit and give me a little time to absorb what I was just told. Then ,with both of them, I developed a plan that I was comfortable with and then assigned tasks.   And once I was able to come to terms that I had cancer I noticed that not only was I dealt a hard blow but my wife and daughter as well.  It took time for me to understand that others truly had a loving and caring interest in me and my situation.  I realized that I could not let this consume me and needed to let my girls back into my heart.  

Most of us here are not the same Men we were before we were diagnosed and treated, but ALL of us here are greater Men in countless ways.

There is a multitude of us and our loved ones on this site that will be here for you and your husband anytime you need.

My sincere welcome to you, I am very sorry your here but I am so glad you came. 

God Bless

Frank

  

Posted 10/14/2008 4:36 AM (GMT 0)
The headache I'd had since Friday's news is pretty much gone (thanks to everyone on this forum). Guess I picked the wrong week to stop taking my hypertension medicine! (No big deal. I'm in the washout period for a clinical trial and have to be off my current meds before starting the trial's meds.)

I'm feeling much less stressed, but I'm giving my husband the space to process the diagnosis before I start bombarding him with too much too soon. This forum is a godsend! I feel like I can now step back, breathe, read and forge ahead. I know we'll both be stressed for awhile, but I no longer feel like we can't handle this.
Posted 10/14/2008 4:51 AM (GMT 0)
Surfin',

That is a great thing to be selective in the information shared that you are gaining now - my hubby took sometime to adjust to the news also and is a quiet man overall. Although we spoke about it, giving him time and space was a good thing - it sounds like you have a good understanding of your husband, so glad you are feeling a little better. He may start to share when he is ready. The shock of this can last for a while initially, but as everyone has said, knowledge is very empowering - as is the overwhelming support of others who have been or are in, the same boat. There is always someone here to answer a question or listen - that's what we have found. Glad you have joined. Welcome.
Posted 10/14/2008 5:50 AM (GMT 0)
Surfin, It is a situation that will floor anyone. But is not a necessarily the end of the world. Caught early there is an excellent chance of not only a cancer free recovery, but also the recovery of complete sexual function. After getting the cancer in check, sex is the next thing on a man's mind. With a skilled surgeon and caring wife, he will be a great candidate for complete recovery. ( See my signature below). I cannot stress enough to find a great, experienced surgeon in nerve sparing surgery if you go the prostectomy route.
Posted 10/15/2008 12:06 PM (GMT 0)
Surfing - I'm glad you've settled down and found this site. you sound just like me and your dh sounds like mine. I started researching everything immediately and Jeff just took his time and didn't want to talk about it for a while. I was and still am relaying information from this site to him because he never came here. I just tell him "my friends at Healing Well...." Everything will be fine.. take care, kat
Posted 10/15/2008 12:31 PM (GMT 0)
I too was devastated to hear the news, along with my family. It was for sure a life defining time for us. The best action is to educate yourselves, become a prostate cancer expert. This forum and the internet in general is a fantastic way to find info. Many sites, however, are simply fronts for a scam that claims to heal pCa with various non-traditional approaches, just be careful and realize that we live in a market economy, and lots of people just want to make a buck and anyone's expense.
Randy
Posted 10/15/2008 3:48 PM (GMT 0)

Just a couple of things that haven't been mentioned:

Get a second opinion on the biopsy. Have your Uro send the slides off to an independent lab. I used John's Hopkins, but there are many others. Your Uro will do it for you. Insurance probably won't pay ( around $200), but this is a big deal and it's worth the money.

If you haven't already, read Walsh's book and Scardino's book on PCa.

Talk to more than one Doctor. Your surgeon will want to do surgery, your Radiation Oncologist will want to do radiation. Talk with both before making a decision.

Join a support group like Man to Man or Guild's Club. American Cancer Society has a list for your area. It's very helpful to hear other stories face to face. Be sure you attend with your husband.

My personal bias: choose DaVinci over seeds. If seeds fail, salvage is more difficult. With surgery, side effects are immediate and keep getting better, with seeds, side effects are minimal at first and keep getting worse.

Very best of luck and remember, you have time. This is generally a slow growing disease.

Ed

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