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• May 17, 2013 9:22 a.m.

  I am now 60, had protate surgery(robotic)5 years ago for early detection of pc. Still cancer free. Had no major incontinence problems. Sexual function gradually improved over the next 4 years, but not quite back to normal. And as some say, yes the penis did get shorter, 1/2 inch, probably from part of tube being removed. Erections are at about 75-80% of what they used to be before surgery. Doesn't get as hard, doesn't last as long, takes a bit more to get stimulated. Penetration is possible most of time, but a little more difficult because not as hard. Viagra or Cialis certainly help, gets me back to about 95% of what erection used to be. Some small side effects from drugs, not bad, small headache or flushed face at times. One thing I can find no answers for. If I take the longer acting Cialis, it does work well, will help for up to 3-4 days. Sex is good, and also then find I wake up often with full erection. If I have sex for 3 or 4 times in a few day period(not complaining), I find I start getting quite a soreness up inside, about where I imagine the protate used to be. Orgasms will start to also have a dull pain, and for several days I find after urniation, there is some, what feels like cramping at the end of emptying bladder. Wife says it sounds like bladder infection, but test shows no infection. Soreness gradually goes away. Could it be irritation from scarring inside or shortened urethea(sp?) being streched more often? Anyone with similiar syptoms?

  - Lawrence

• May 2, 2013 1:32 p.m.

  My husband and I met 9 years after his surgery for advanced pc. On our first date he was totally transparent about his situation -- urinary incontinence and ed. Nonetheless, we connected intellectually and emotionally. Two months later he had a surgery to place a sling. No more leakage and a ceremonial disposal of the depends! From the start I told him I had no interest in sex, but I LOVE to make love. My philosophy had always been about the sensuality of melding mind, body and soul. We agreed that together we could work it out. And we did. Then his psa started climbing with all the attendant anxiety. The first urologist said the only treatment had to be hormone therapy. I questioned him about side effects. Since I'd had a radical hysterectomy, he'd had a prostatectomy (sp?) and we were both in our late sixties, this verrry young Doc was amazed that we had a sex life. We went elsewhere for treatment. Radiation took care of the psa Our intimacy continued during the radiation! Sometimes we simply hold one another and focus on the deep feelings of our love. Often things progress and work out quite well. Not always, but that's okay. We also engage in those old standbys of a pat on the tush or express appreciation when dressing -- or undressing. Or just hugging and kissing. Pills are rarely needed. In short, the primary sex organ is between the ears. It's all about the expression of our love and regard for one another. We'll both be 73 this year, life is great!

  - Bev

• April 3, 2013 9:55 a.m.

  This post is for Sandy and others looking for a supportive group to discuss diagnosis, treatment and survivorship after prostate cancer in the Rochester area. We have an excellent local support group which is lead by men who are prostate cancer survivors. The group organizes educational meetings and support for men and their partners and is an excellent way to discuss treatment decisions and access to local resources. The group meets the second Wednesday of every month from 12 - 1:30 p.m. in the Baldwin Building, Street level (room 1-507). Contact is Richard Vetter, PhD (rvetter@mayo.edu). The other excellent resource if you are not in the Rochester area is www.ustoo.org.

  - Sheryl Ness

• April 1, 2013 10:35 a.m.

  I have been told my biopsy shows 80 percent on one side and 30 percent on the other. In search of information I went to the website ... Am due to talk to the surgeons and radiation people in one week with treatment or surgery in 4 weeks. The comments of fellow prostate patients is VERY disheartening. As a retired psychological therapist, where are counseling and small group meetings?! Even though many of us Mayo patients are scattered there should be no trouble setting up pre GTVKumand post treatment small groups on computer. From the comments this seems ESSENTIAL for those of us in fear of the upcoming and those trying to deal with the aftermath (this is obviously needed by life partners also). Mayos, do you need help setting these up? I expect better of the Clinic ... And the lack of response to the input SCARES me almost as much as the cancer. I have no trouble using my full name: Sandy Robert Shaw, a patient at Mayos for 16 years. Mayos: please answer these comments without saying "You can find the answers elsewhere.". When people are hurting, they often find it hard to wend their way through the maze.

  - Sandy

• March 28, 2013 4:31 p.m.

  Bugger me!! I have just been diagnosed, results of bone scan and CAT scan not known yet. The posts on this blog are a bit disturbing. I suppose that after making a CONSIDERED decision about treatment, if there are problems I will just have suck it up. My partner of 2 years is supportive; we have each other, we are not getting any younger (67/70) and we need to make each day count. I have been divorced 3 times. I have come out of each of those events with less money each time and now live on welfare. I have paid my taxes in the past so that does not bother me. Do what you have to do to be happy. If that means leaving a non supportive partner, DO IT. Be alive, find a partner who will bring you joy. Or not. Be yourself. I am optimistic but what else can you be. Damn it all, it ain't fair, but it happens. You can't wish it away. I won't let it destroy us.

  - Jeff

• March 23, 2013 3:28 p.m.

  I have been reading some comments. It saddens me that prostate cancer can destroy lives. This does not have to be the case!! My husband had prostate cancer and a robotic prostectomy 4 years ago. No sex has never and will never be the same. So what??? We have each other. We have a wonderful family and we love each other. I am just so blessed he is still with us, and other then a few MINOR problems he is healthy. Having my husband means more to me then anything. We only have one life, live to the fullest and focus on the wonderful things you do have.

  - Teresa

• March 13, 2013 11:57 p.m.

  My PSA's were 21 and 11. My needle biopsy showed cancer on the left side only but on 5 of 6 needles and the Gleason score was a 3+4. I am a 46 heterosexual who is engaged. I am 5 ft 11 and weigh 195. What is my best option with the least amount of side-effects? Also, the more I read on this site the less I want to put my fiancé through a sexless marriage. I have to be honest, I wish I had not told my sisters and brother, because I think I would have rather just lived 10 more years and die mysteriously . Feeling lost?

  - Patrick

• March 7, 2013 6:19 p.m.

  Within a week received results from prostate biopsy after a psa of 7.5. Gleason score , 3-3 , of the 12 cores one sample had 6% malignant cells. Today had a CT scan, hoping cancer is only in the one core sample. Is this situation cause to remove prostate? I think that if this would mean no radiation or chemo then I'm good with that. Plus the psa ordeal would be over correct?

  - David

• February 23, 2013 5:12 p.m.

  I am dating someone who had pc surgery almost 2 years ago. When I first started dating him, he was standoffish sexually. He finally told me about it after dating for an extended period of time and stated since he was 12 years older than me anyway that I would not be interested. I read and educated myself about it, looked at our relationship and how in tune we were mentally and really never thought again about it. There are other things other than penetration, that we share with one another and it is fantastic, for the both of us. He does not get super hard no matter what we do but he still achieves a wonderful feeling from it, and I just say,,, experiment, don't be shy. If you are in tune with one another open up and share. Yes, he takes viagra and sometimes he will give himself a shot, but we have sex 3 - 4 times a week and it is out of this world. Please do not give up hope, it could just be you may not have the right loving partner to share with. :)

  - Lisa

• February 7, 2013 11:27 a.m.

  This is for Marilyn, Frank and others who are writing their feelings and experiences on the blog. I am glad that you are using this blog to express your feelings of anger and frustration. Your feelings are real and they are fairly normal because you weren't prepared for the outcome. It's the first step in working through the emotions, and this blog is an easy(and fairly anonymous)way to do that. Everyone will have very different treatment experiences, not one is the same as the next. It's very true that the medical and surgical professionals working with and treating men with prostate cancer should communicate the reality of the risks and potential side effects as best as they can...however, each person will have a different oucome based on thier individual differences. Not all men experience what you mention. Keep doing the best you can to communicate your emotions and feelings, along with exploring a way to change your anger into something more helpful to you personally. Find a way to make a difference in support, advocacy or awareness within a local group.

  - Sheryl Ness

• February 1, 2013 7:39 a.m.

  My husband had the prostrate surgery about 5 and a half yrs ago.. the doctors handled the whole thing badly, as did I -but I didn't know better, they have the degrees... anyway, they cut the cancer out and act like there is something he is doing wrong because he can't get it on. Let me tell you, it is OVER. we have been together 37 yrs, and i have done every thing i can, decent and indecent- now i am just angry all the time and i cry all the time now.. just cry, i have no control over it. i snapped last fall, about 5 yrs later and i am just angry. i am trying to write a helpful letter to the doctors but i get so angry i go off and just go nuts. and everyone treats me like there's something wrong with ME for having these feelings. i didn't ask for them and five yrs ago i did not have them, i went thru the change and the joke is, our libidos increase when they can't get their thing up as they get older w. or w.o PC surgery right? I don't know.. good luck but they all tell you lies, there is no erection, it gets smaller and maybe you can get it in her, she is not going to feel a damn thing. truth, you need truth not these fairy stories.. and no there were issues before surgery we didn't get worked out and it never will be now because they were not HONEST.

  - Marilyn

• January 14, 2013 2:40 a.m.

  Brian, Thank you for your statement on "THERE ARE OTHER TYPES OF FULFILLMENT WITH COUPLES". Anything is possible, but just never throw your mate and friends over the cliff. Be there for them!

  - Lu

• December 7, 2012 11:36 p.m.

  On October 2, 2012, I had a robotic prostate cancer surgery. My PSA was 6.3 and went down to 5.1 before surgery. As today I have urinary incontinence low during the morning to medium after 3 in the afternoon. I have periods of time of 30 mins to 45 mins I am dry. I also have erectile dysfunction, my doctor gave Levitra 1/4 every other day. Sometimes I feel that I am regaining my power but I do not get a total erection. I am a young 68 years old very anxious to go back to normal.

  - Frank

• November 27, 2012 8:26 a.m.

  I had the da Vinci Prostatectomy five years ago. Went out of network (Minimal insurance coverage, cost me plenty) to get the this surgery as my urologist pushed it on me as the best for sparing nerves, I was only 45. I have never had an erection since. My marriage is over, very depressed. If I had it to do all over I would have done nothing and told no one I had PC.

  - Roger

• October 29, 2012 11:06 a.m.

  I AM DIAGNOSED WITH PROSTRATE CANCER and after taking tablet the PSA has come down from 8.4 to 5.5. How long I have to take medicine and what should me daily routine IN FOOD AND SLEEP. Frequent urination was my main problem.

  - bhattathiri

• October 29, 2012 11:00 a.m.

  Excellent and informative website

  - bhattathiri

• September 17, 2012 5:08 p.m.

  I am turning 61 next month. At age 40 I had pancreatic cancer and a had a whipples operation. 7 years ago I had spleen and gallbladder removed and am now type 1 diabetic. On my last check I had the PSA run which has gone from 4 in January this year to 30. I have bene diagnosed with PC and am awaiting final diagnosis of how serious this is. What effect will this have on my diabetes etc. I go to teh gym 4 days a week for an hour at atime but am so tired.

  - Deryck

• July 13, 2012 8:19 a.m.

  I had surgery in 6/09. With Viagra,I'm able to get an erection, but it's not the same. It seldom lasts long enough to achieve an orgasm. I do have urine shoot out instead of semen and strange as this may seem, I'd rather have this "peecum" than nothing. We have sex once a week and she uses vibrators. I enjoy watching her and sometimes I have an orgasm and sometimes not. Also the Viagra has side effects which arn't the most pleasant, but I'd rather have these side effects than not ever having an erection. It's different now.

  - Larry

• June 30, 2012 11:02 p.m.

  Karl, So sorry to read about your case. 50 years is a long time to be with someone who doesn't care. Hang in there and seek some counsel from someone who knows what you are going through. As it is with most men, that someone is definitely not your wife. Try a son, or a brother...just don't waste your time with the wife any longer. I am going through an eerily similar situation, though married half as long. I have filed for divorce because I can't take being blamed for "catching" cancer. I may only have a short time left on this earth and I don't need anymore "hell" here. I can't tell what a wonderful sense of PEACE came over me when I signed the documents. Be strong brother and don't waste another minute with that woman. Life is too short and precious. It really is not your fault. Go with God and peace be with you.

  - Tom

• June 20, 2012 3:40 p.m.

  I read the article by Dr. Castle...I don't find it comforting that a condom is sufficient protection from radiation. I wonder if anyone has bothered to do clinical research? Or are we letting women be guinea pigs and will find out in 10 years that there is a "peculiar" incidence of cervical cancer in the partners of men who have been treated with radioactive seeds.

  - Karen

• June 20, 2012 7:08 a.m.

  Karen- I have not found any studies, but Dr. Castle from Mayo Clinic has an article written in the Prostate Cancer section about precautions to take after radioactive seed implant (see this page on mayoclinic.com - http://www.mayoclinic.com/health/prostate-cancer-brachytherapy/AN01629)

  - Sheryl Ness

• June 20, 2012 6:40 a.m.

  Karl, I am glad that you are writing into the blog, this may help you to see that you are not alone in your feelings and also my hope is that you will seek other ways to enjoy intimacy in your relationship with your wife. Have you tried to share your fears with her? Sometimes just starting the conversation is the hardest part. She is probably also worried about you. If you are not able to talk with her, get together with a close friend and share your feelings, you will be surprised at the support you receive. Also, very important, mention this to your doctor...especially your feelings of depression and suicide. There are people out there who care about you and can help if you reach out.

  - Sheryl Ness

• June 19, 2012 3:36 p.m.

  Are there any studies on the incidence of cancer in partners of men who have had radioactive prostate seeds implanted?

  - Karen

• June 14, 2012 2:10 p.m.

  I will be having surgery in the next couple months, then proton radiation. I have had ED for about 20 years. I just assumed it was psychological because my wife did not want sex with me, and never had. We have been married 50 years. No one could find any cancer. Suddenly my psa jumped from 7 to 25, and I had 3+4=7. I am very discouraged. Suicide may be the answer. I am working as hard as I can to create a life for us. But nothing works.

  - karl

• June 2, 2012 1:45 p.m.

  Since when is penile penetration the only way to fulfill sexual desires? 29 years of marriage,

  - Brian