Surfing Spouse...welcome from one newbie PC patient spouse to another. And to all others, I found this site by typing in my husband's urgologist's name and have just spent the past two hours reading different posts, at times until tears welled up in my eyes and I needed a break. Thanks to those for being here...you've helped me already with your stories. Anyways, here's mine...
My husband (age 50) of two years (been with him 7) was diagnosed with PC two and a half months ago. Slowly rising elevated PSAs for the past two years, but no enlargement, no symptoms and last year's biopsy (12 samples) all negative. This summer he jumped to 7.5, was retested 3 weeks later and came back a 7.2 and had second biopsy. Positive in 2 of 12 samples with < 5% in core in one and < 10% in core of two...gleason scores 6 and 7. Diagnosed T1c, Gleason 7, (pathology report confirmed at John Hopkins), CT scan negative. No evidence of perineural (spelling?) involvement.
I see now from reading other's posts his "knee jerk reaction" of "get it out of me" was very normal. In fact I think if he could have scheduled surgery the next day he would of. A very strong, stubborn and proud man, he wouldn't let me come to the diagnosis appointment, but came home with the news and the book the dr gave him to read and appointments with a radiation oncologist. Turns out the radiation oncologist was the one that treated his first wife who passed from pancreatic cancer 8 years ago. After our visit, he immediately decided radiation wasn't for him. We were both certain that at his young age, the long term effects of radiation could be significant down the road, as well, would eliminate any surgery option if the cancer reared it's ugly head down the road and in light of the aggressiveness (gleason score) of his cancer.
Next appt with the urologist (I am now attending) he discussed the surgery options and advised that he only performed the perineal prostatectomy, because that was how he learned and learned under one of the best. When asked if this surgery would be nerve sparing, he said yes definitely. When asked what his complication ratios were for permanent incontinence and ED, he said "knock on wood 0% for incontinence and 50% for ED". Having thought we were given a good recommendation of a urologist and having been seen by him for two years, my husband decided to go with this surgeon. Surgeon advised my husband should lose some weight, preferably at least 20 lbs before the surgery. His surgery was scheduled for 2 months (today by the way). We spent the last two months dieting (with good results though)!
Hang in there with me, I know this is long, but I do have a point to make. Anyways, for the last two months besides dieting with my husband, I've been reading the book, and doing the research. Hubby said he was just fine, his mind was made up and there was no use spending a lot of time talking about negative stuff and worries and he wasn't going to waste time going to different doctors and going through extra tests. Me? My gut was in knots, I didn't think he was making a well-informed decision and after doing countless research hours on the computer into many wee hours of the morning, didn't find that the type of surgery he was having was very good for nerve sparing. Now I'm not worried about the ED issue for me...heck, while I'm a 50 year old menopausal woman who has loved our intimate life, but the most important thing to me is to have my wonderful husband's arms around me for as long as possible. I've lost my dear mother to colon cancer and I'm not ready to send him to his first wife. And as for incontinence, well you're listening to a woman who had a 10 pound baby with only 3 hours of labor to boot. I've been crossing my legs when sneezing, coughing or laughing for the past five years now, it's something that can be dealt with. However, I wasn't sure how my husband was going to react to these very real possibilities that the odds to me just weren't good enough in his favor. Finally last week, I erupted like Mt. St. Helens told him I couldn't stand not talking about this and asked him if he understood it was possible he might never have an erection for the rest of his life and how would feel about that. His answer? "Honey, it's just not going to happen that way... I'm sure of that". It was like a light bulb went off, it struck me then, he was in total denial. He hadn't talked to anyone in his family about this, hadn't talked to his best friends, barely talked to me about it, and he was going into this blind. Well, I went on a tear (risking pissing him off I know) but informed his family what was going on, and our closest friends (one being a nurse) and we sort of did an intervention with him. Turns out his brother-in-law had a laproscopic prostatectomy 4 years ago, my own father has been seeing a very highly respected urologist in town who is an expert at the davinci (and provided him with a complete packet) complete with links to actually watch and research this type of surgery. He and I talked all weekend long about all of this and he came to the conclusion he was being foolish, but was embarrassed to call the doc on Monday (yesterday) to cancel his surgery at last minute. He also admitted to me that when he scheduled his surgery, the scheduler told him another doc in the practice was going to start his surgery because they had to squeeze him in because they were so busy, but that his doc would take over after an hour. I told him not a problem, I would be happy to make the calls and if his doctor didn't understand we needed another opinion that might be very telling. And of course thinking to myself but not saying anything, what was he thinking, he hadn't even met this other doctor and we knew nothing about him.
I made my first call yesterday morning to the davinci doctor my Dad recommended (who was also in the same practice as the doctor who did my brother-in-law's procedure, who by the way has had no permanent difficulties at all.) We got an immediate appointment for this afternoon, was treated with great compassion and spent time on the phone listening to our story. The second call was to his other doctor's office to cancel his surgery and request a copy of his records and could I please come pick them up? Well...another long story, but the general gist of it was, they didn't have his file, weren't sure where it was, then they found it at another of their offices and it was being faxed to the office, and can I call back at 2:30 to pick it up, at 2:30 informed they weren't going to have it because the doctor who was doing his surgery (oh yeah, his doctor was never taking over after he started) had the file with him, locked in his briefcase in his car to take home with him to review it the night before he was going to cut my husband open and do a very delicate surgery on him. Oh and she just couldn't talk to me anymore because she was very busy and they'll call us when we can have his records. By the way, she was very pissed that we were cancelling at the last minute and how could we even think of doing such a thing, didn't we know how busy these doctors were! I called the new doctor back to ask what I should do, all we had was a copy of his most recent blood work and his two biopsy reports. They told me not to worry, they would call the doctor and get the records.
After another sleepness night, my stomach in knots now because of the thought of what could have happened to my husband today and the mistake that could have been made, we had a wonderful experience with this new doctor and were so impressed that when we left the office and the elevator doors closed, we looked at each other and said "Wow...what a difference this whole experience has been". Organized office, met with nurse, doctor's assistant, davinci coordinator, saw a movie of the procedure, met the doctor and by the way, they made the other practice get them the records, i don't know how it happened, but it did, and have an email contact as well as a 24 hour number to call if we have any questions or just need to talk. We found out this doctor is training other doctors all over the country on the davinci, people have come from all over to him. We are moving forward with the davinci, my husband has a much better chance at having less side effects, and yes as my name says, I believe in angels, and they were watching over us and stepped in when needed. Both my husband and I are in total agreement we are now in the right place, with the right type of surgery for us, and while we know it's a long road ahead, and risks are there, we feel we've got a much better doctor and a good fighting chance of more than just cuddling.
And so the moral of my story...while I don't have much experience with this yet, I do know and feel strongly about this...make a fully informed decision, get how many opinions you need until you feel comfortable with your decision. Guys you deserve the utmost in medical care, respect and compassion. If the doctor's office seems disorganized, it's a reflection of management and the doctors are the management...run! If you are treated rudely, run and don't ever let anyone feel you must take that kind of treatment. If your doctor's office is too busy, yes he may be good, but you should never feel rushed and make sure you have all your questions answered. If you don't...run! Get a copy of all reports immediately and keep a file, you never know if you might just need to have your own copy. Wives, it's okay to be a part of the decision and you should be. You know your husband better than anyone else, watch for signs of denial. Take whatever steps to be certain you believe your husband is making a well-informed choice. They don't call it woman's intuition for nothing...it is a valuable insight. Make sure your heart, head and gut are all in agreement. If something doesn't feel right, even if it's slight, follow up on it, even if you risk pissing hubby off...you have the best of intentions for him and he will thank you later. My husband, still strong, stubborn and proud said he's sorry he kept shutting me up these past two months, and said he is thanking God right now I took a stand with him and opened his eyes, and yes he had his doubts, but just believed that all doctors were good.
Thanks for bearing with me, I've had a lot to get off my chest. I'll keep you posted with his results and I promise not to be so long-winded in the future. Again, thank you all for being there. I feel a lot less lonely right now, and I wish all of you good success in your fight. --- g.
PS I'll figure out later how to add the signature, it's getting late.