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help w/my guy in denial

Cybele
Posts: 2
Joined: Feb 2004

My beau is 58, diagnosed about 3 months ago, and is 'in denial'. He says he chose 'watchful waiting', and won't give me any info. I keep trying to reassure him that I'll love him forever no matter what and telling him I want him around forever. However, I know him well and know he can't face the possibility of complications that would affect sexlife (which is way more important to him than to me). I keep bringing it up every few weeks or so, trying not to nag but to reassure, and he insists he's fine and not to worry. I'm a few years older than he and honestly just want him alive and well for as long as possible.
Any advice would be appreciated!

mboneal
Posts: 9
Joined: Mar 2003

It has almost been a year since diagnosis and surgery for us. But know the pain that you are going through! I believe that most women want to discuss it to death while (in my case) my husband just wanted so much information (which wasn't very much) and then didn't want to discuss it at all! All I can tell you about is my experience, but first let me add that you have come to a wonderful place for help and advice. I have developed some really close friends here that I couldn't have gone through this without! From a woman point of view and since the cancer is not in us, it seems like a very simple choice. But my husband was as scared of incontinence as impotence. Lucky he had no problem with incontinence, but our sex lives has slowed down some but has increases with the new drug levitra. With the new prescription drugs available, inplants, shots, etc. there is practically no reason your husband will not be able to achieve an almost "normal" sex life. Has your beau read anything about nerve sparing surgery? I suggest you get the book "ABC's of prostate cancer. It takes you through all his and your choices. Even though my husband shut down on me several times, please remember it isn't you. We woman are very strong and I am sure that when he is ready he will talk with you about it. My thought and prayers are with you. If you have any questions (woman to woman thing) e-mail me at: mboneal1@earthlink.net. I would be happy to help you! Prayers and God Bless you!

mikebur
Posts: 24
Joined: Feb 2004

Hi Cybele!!! Sorry to hear about your beau's diagnosis. That was good advice from mboneal - especially coming from a wife's perspective. I was diagnosed on 5/23/03. PSA was 4.63 and I had a radical prostatectomy (surgery) on 7/25/03. I still have incontinence and impotence but they are getting better. My doctor says sometimes it takes up to a year or more to come back but as mboneal stated - there are many options to correct these problems. The ultimate decision, however, is up to your husband. It's his body but you seem to be a very caring wife and that is great support for him. With my case - my doctor said that watchful waiting is fine if I was 70 etc but being 54 when diagnosed and having many more years to be around - I decided on the surgery and I am happy I did. They usually base surgery on whether the cancer is still in the prostate only and has not spread (if it has spread then they will not do surgery - usually chemo or hormones etc). 58 years old is still young for this disease and if it is in the prostate and they can get it - you have a much longer life expectancy. A lot will depend on gleason score (how agressive the cancer is). I did a lot of research before I made my decision and spoke with a lot of people about what they went through. If you can get him to come on this website - he can ask a lot of questions and get answers. He should also be talking to his doctors on how he feels - get a second opinion etc if needed. This cancer can be a slow moving cancer but as I've heard - the younger you are - it can also be a faster moving cancer. Although our sex life has changed - I am still around to enjoy it and it is getting better. I hope this helps and we will keep you in our prayers. God bless - Mike.

denisegarver
Posts: 3
Joined: Mar 2003

Mike... I talked with a Mike for several moths who gave me a better look into my husbands prostate cancer----could this be the same Mike? Anyway--this is a real and urgent matter for the entire family-thanks for opening up this topic of conversation.
denise

DFoye
Posts: 3
Joined: Mar 2004

Hello Cybele. mboneal and Mike covered alot of what I would tell you. I agree with everything they said. I am 50 years old and had a radical protectomy on the day after Christmas. It was my bride and my family telling me just what you told your Beau that helped me come to terms with the surgery. The most important thing is that I live to a ripe old age. They want me around. Ask your Beau to consider what I asked myself: If the situation were reversed and it was you , his partner, who had the cancer, and having the surgery would probably cause you to have an inability to make love, at least for awhile, but it would mean you could be with him for a long, long time. There was no question in my mind. I love my wife so much, that I couldn't imagine life without her. Sure, making love is important. But losing her is unthinkable. There are alot of ways to make love, and there are many new advances in the treatment of the expected impotence. I don't know your Beau's condition, but the fact that he is considering watchful waiting suggests that he is in the early stages. His doctor must have suggested the surgery as a possible option for a young man like him. Whether he did or not, I want to suggest that he get a second opinion from another Doctor. Well, that's all I can come up with a the moment. I am here for either of you. If there is anything I can do, please contact me. You will be in my thoughts and prayers. -Dan

Morris
Posts: 12
Joined: Dec 2002

Hi Cybele,
You tell your husband to e-mail me --I will set him straight. I know where he is at--I was there till I figured out---- I DID'NT WANT TO DIE.
I was 54 , an avid hunter and fisherman and recently retired truck driver.--non smoking and only an occasional drink--My first thought was "THIS SUCKS--I HAVE TAKEN GOOD CARE OF MYSELF AND WHAT GOOD DID IT DO --I HAVE BEEN CHEATED--THIS ISNT FAIR--IM TOO YOUNG TO HAVE CANCER --IM TOO YOUNG TO BE IMPOTENT! WILL MY WIFE STILL LOVE ME IF I CANT PERFORM? I swear , as fast as I muttered those word I decided I was going to beat this thing that was trying to cheat me out many years of being with my lovly bride ( who by the way is a few years older than me ) and children and grand children.( AND THAT BIG FISH WITH MY NAME ON IT)
My Dr.(in Spokane) told me when my PSA went from a norm of 4.0 to 7.0 in 6 months that I neded to think seriously about surgery and we would watch it for a few more months. It went to 10.o and I decided to have it done.
I forgot to mention, I was ready to stop having the PSA done but thank God my wife insisted that I continue--again--she was right--we would have never caught it in time.
My wife went with me to every Dr. visit--she partisipated all the way but the final decision was ultimently MINE.You need to insist that you go with him to EVERY Dr. visit if at all possable--you have a RIGHT TO BE THERE AND KNOW WHATS GOING ON--DONT TAKE NO FOR AN ANSWERE--you have a vested intrest in this mans health--he needs you more now than ever even if he dosn't know it or admit it.We are all macho men in one form or another , but this isnt the time for it.
I live in Spokane Wash and we have some pretty good Drs. here and believe me ,I interviewed them all(5 to be exact). A few were too old in my eyes, a few didnt have enough experiance and a few wouldent do the type of opperation I was more comfortable with .
I insisted that they do the "Radical Prostatectomy"That is where they open you from the pubic bone to the navel.I wanted them to be able to see what they were doing.Most of the Dr.s here wanted to do the retro-pubic--its old school and I said NO WAY! That one is where they make a half circle incision between your rectum and scrotum and sort of go up a tunnel--nope--nope--nope--not on this kid!There are some nerves that you dont even want them to scratch let alone cut so now you can see why I chose the R.P.
Sooooooooo by the grace of God and a very dear friend in Scottsdale, Az. he got me into the Mayo Clinic where I met a YOUNG Dr. that has done thousands of these procedures. Yes--We traveled to and from 3 times--first for the interview 2nd for the surgery and 3rd to have the cathiter removed then one more time at the one year mark for a check up. WE got some cheap airline tickets so we could fly down for the surgery and then back to get rid of the cathiter but we drove the first and last visit.I would do it all over again.
As a bonus we got some good TEX-MEX dining in, got to spend time with friends and it was all a tax write off for medical expences.
The Mayo is tops,I know not everyone can go there logisticly but as I told my wife (jokingly)YOU DONT TAKE A PORCHE TO A CHEVY DEALER FOR AN OVERHAUL--Im no Porsche but you know what I mean.
As for the opperation ,it was a snap.The worst part of it was having to drink 8 ounces of water EVERY HOUR for the 10 days that I had the cathiter.HAHA
I did have some incontince for a few weeks but with the light days pads it was a piece of cake. As far as SEX--well I was ready to give it a try after 8 weeks---after all "IM SUPERMAN"---so much for that idea. My Dr. just laughed and told me he gives me a big "E" for effort and a big "A" for attitude , you see--attitude is EVERYTHING !
He did give me a prescription for Viagra and with its help I was on my way by 4 months---not as good as new but NOT BAD concidering.(it can be as long as 2 years but seldom takes that long)
I can tell you that your husband is thinking, will she get tired of me after awhile and stray because I cant make love to her and satisfy her the way I used to.That is NORMAL--just remind him that if hes dead he wont be able to make love to you eighter. You have told him you just want him around forever but thats not what he heard. Its his biggest fear that he wont be MAN ENOUGH any more and believe me I felt the same way--it scared the hell out of me.I had my surgery on January 21,2003 --I am cancer free with a PSA of .00003.I havent needed any help in the bedroom in over 6 months although I will admit on 2 occasions ( I was dead tired ) things just didnt WORK--we waited till the next night and things were A.O.K.--this type of thing is to be expected--kinda like when you girls are shall we say "NOT INTO IT" and the next day is candle and perfume time.
We have tried the Viagra and it gave me a killer headache the next day than I got a sample of Levitra and it just gave me a stuffy congested head feeling and then we got some Cialis --the newest one and it lasts for 3 days and no side effects--I keep a few around for EMERGENCIES but sometimes I try and fool my wife and will take one and ask her 'WAS THAT WITH OR WITHOUT THE PILL"?--She cant tell--so I guess I can say that Im a SUCCESS story---but again as my Dr. said-- its 90% attitude. In worst cases there are other remedys .You and hubby need to read all you can and make an educated choice-the info is there for you.There is no reason to loose him to this
cancer, the success rate is very good and you two should grow old together.
I dont think I have left anything out.Do your homework and find the best Dr. you can--you have to feel confident with him. Dont be afraid to ask them how many of these procedures they have done--you have a right to know--BE INFORMED.
I tried to make this an enjoiable situation for everyone concerned. I teased the Dr. every chance I got--I even told him I wanted a Viagra I.V. when they take me out of the opperating room , when I went back for the last check up we made up party platters of pastrys and such and took one to the hospital floor where I was , the Dr.s staff at the clinic ,the admiting staff and the lab staff--they all got thank you cards for being so good to us and taking such good care of me.
Thanks to them ,Im still around and will be for a long time.They have a motto"Our only intrest is the best intrest of our patients"and they practice it.
Please have your husband e-mail me -I would be honored to help the BOTH of you and if you would like to talk to my wife she would also be there for you.
Morris e-mail address jaskula@cet.com

lapostol
Posts: 4
Joined: Mar 2004

I am hoping you will be able to help me. My uncle was diagnosed with prostate cancer last year. He is a very stubborn guy never saw doctors in his life. He was having back pain for a long time and than finally had painful urination. He finally went to the doctor and his psa was sky high (Unsure of number). Had other scans and blood tests. He has been the type of patient that doesn't ask any questions just goes along with what the doctors say doesn't second guess them. From what my dad can find out from him we think it is terminal. We think his doctor is holding back info from him. He has only had hormone shots no chemo, surgery or radiation. We find this very odd that his doctor is only doing hormone shots. Now he is on oral morphine and was going today to get the dosage increased. What are your opinions about this? The facts are very shady because he doesn't say much and when he goes he goes to the doctor with his wife who we think is getting alzheimers. I told my dad he needs to go to the doctor with him and ask questions.

Cybele
Posts: 2
Joined: Feb 2004

Thank you so much mboneal, Mike, Dan and Morris. "Beau" is a term for boyfriend, not husband. We planned to get married next year. Not being married yet complicates things. But I did say the 'imagine it was me' as Dan recommended and that seemed to help. He told me his PSA is now 9, and he just had a test for 'seed' treatment and will get the results next week. I think he'd freak if I told him I was discussing this with anyone, so I'm printing out info from this site and others, and saving the email addresses you provided, and hopefully he will be ready to get onto this site and or chat with a 'fellow traveler' a bit further down the road. Meanwhile, thank you again, and you folks will now be in my prayers as well!!! Cybele

Pirate
Posts: 1
Joined: Mar 2004

Hi, Cybele. I'm a little late getting into this conversation, so please excuse my tardiness. I am a prostate cancer survivor. I was diagnosed in 1997. While my psa was a normal 3.4 (at age 59), a biopsy revealed a Gleason Score of 9. My lovely wife and I decided to go the radical prostatectomy route and we searched out a doctor who used the nerve saving technique. We easily found and selected what we thought was a very good doc. We were not disappointed. After a shaky recovery with all the discomforts of stitches and catheter, the big day arrived for the removal of the catheter. The doc made me remove it. I was neither incontinent nor impotent. I owe my life to the family doctor who found the tumor during a routine physical, including a DRE. If you can not get your "beau" to listen to him, please ask him to e-mail me. It is a scarey situation and something that most men do not want to talk about, but today's medicine is a heck of a lot better than it was seven years ago when I went under the knife, and I am sure the procedure has improved.

Any questions, please do not be hesitant in asking.

Dave the Pirate

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

I am 54 and just had surgery the end of Janaury 2004, PSA of 19.4, Gleason of 7. I had gone through 4 years of biopsies with negative results, then a saturation biopsy showed positive. My wife and I did a lot of surfing on the net, especially at Mayo Clinic site. We knew it would be surgery before we went to Mayo. We also knew all the possible down sides of the surgery. Having been married 31 years, we both felt that there is more to sex than just an errection. I joked with her that if I would rather be alive in 20 years than have someone comment in 2 or 3 years at my funeral that I could perform like a young man. For us the wohle was worht more than the value of all the parts. Will I still be the same in bed? - I don't know yet, but I'll still be alive to see my kids marry and hold grandkids.
The process needs to be shared and can be hard to talk about. have your husbanc contact some of the peoplewho have replied that have gone through the same thing. I think any of us would be glad to talk to him. And I do agree on the one gentlemans comment on Mayo. It is super with everything in one place and it is totally geared to the patient. Looking forward to hearing from you folks.

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