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Help from a partner whose boyfriend, 41, has been PC-free for a year
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onlyconnect posted:
Hi,
My boyfriend had his prostate removed December 5, 2011, and, in the months prior to surgery, I often visited this site. If anyone has any questions about the months pre-surgery,the days post-surgery, and the year (and counting) of rehabilitation, I'd love to pay it forward by helping out. When he was diagnosed, we had been dating only nine months. (I'm 33.) I'm happy to share stories of the good, the bad, the ugly (and the funny) as well as some advice that I received from others, counsel that his doctor didn't give him -- but later told him was good to follow (i.e. taking Viagra, Cialis, et al a month prior to surgery and for almost a year after).

Happy New Year. Take care.
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romel2020 responded:
I would love the information and insight that your journey has provided you. I am contemplating surgery for PC and would like to have real life conversations about the (good, bad, and ugly).
 
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onlyconnect replied to romel2020's response:
Hi, Romel2020,
I can answer your questions from the perspective of his girlfriend, as well as the person who did most of the research into prostate cancer -- which included a call to my ex, a urologist, who told me what to ask Jake's doctor prior to our first meeting.

First the good, followed by some bad, and a little bit of ugly:

(1) Jake is cancer free with an undetectable PSA. He has his next doctor's appointment in eight months, I think, and he will have to check his PSA for the rest of his life, and the prognosis looks good. His father passed away from prostate cancer when Jake was 35, so, though PSA's aren't tested (generally) until one is older, he had been getting his checked yearly for the last five years.

(2) Except for the first few weeks post-surgery, Jake has not had any problems with incontinence.

(3) The doctor said that he would have normal sexual ability w/o injections within six months. The wife of a PC-survivor (56 years when he was diagnosed) told me their experience was closer to two years. Erections are rated on a 1-10 scale, and for almost six months, w/o the injection, the erection was a 1 or 2, but, a year later, w/o help, it's more like a 7-8. (Truth is, we knew that his being cancer-free was a quiet expectation. The bigger fears were incontinence and ED but thankfully, gratefully, those two have been ok.)

(4) I've read that unlike women with breast cancer and other female cancers, men with PC do not like to share their stories. You might have friends and family who have had it or have it but do not talk about it. That has been a bit like my experience as well. It was the wives, who gave me information. They were the ones who opened up about the men in their lives. I guess the first key is to talk to the women, who will encourage their men to talk. Or be open on FB, e-mail, etc. about your own diagnosis. When Jake sent out an e-mail, an older friend told him he had had it, and he offered his support.

(4) Prior to receiving Jake's Gleason score, I had read about just watching it because it was a slow-growing cancer. His Gleason score was a 3 4, an aggressive growth. Surgery was the only option and the question was which kind of surgery: (a) traditional surgery or (b) robotic. We went with the former. Yes, I've read a lot about successful robotic surgeries but it takes xx number of surgeries to be successful with robotics and our surgeon, who felt comfortable with both, had done a few thousand more by hand. Jake had to stay at the hospital a day longer than his roommate, who had robotic surgery done, but we had expected that.

(5) Our surgeon forgot to tell us that there has been some empirical evidence that taking Cialis a month prior to surgery and several months after can help with recovery.

(6) Our sex life has been good and fine, and in some ways, better than it was prior to his surgery. One experiments more, I guess. What it hasn't been is spontaneous because one needs to keep the medication in the refrigerator and the syringes very clean. Oh -- and have I mentioned that needles make Jake queasy? I know it might not seem like it now -- and I certainly didn't believe it prior to his surgery and I know there's no way for me, a woman, to understand completely what ED, temporary or permanent, does to a man's sense of self -- but I will say, LOUDLY and with a big heart, that it's a bigger blessing to be alive and healthy. There are ways around ED.
 
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onlyconnect replied to onlyconnect's response:

(7) If you have family members, a romantic partner, close friends, please recommend they get therapy. I had never had therapy, but I wish I did. I thought I was ok because I wasn't crying every night, but, actually, I was suffering in my own unique ways, forgetting names, if the iron was left on, keys, etc.

( Apparently attending those PC-survivor meetings is not a very good idea because the ones who go are the ones for whom the experience has not been as successful. Though I think it's good to hear about the reality of it and to commiserate with others, I think that now, as you're contemplating surgery, it would help you more to hear hopeful, good ones as well.

(9) My handle is "only connect," an allusion to an E.M. Forster book, and that's my best advice for you. Talk a lot and connect a lot and ask a lot, a lot, a lot of questions. I remember there was his line "It was silence that hooked me, so much like my father's," and I've found that that has been the code around PC as well. But my boyfriend is healthy because neither he nor I has been quiet about it, and a few of his friends have since checked their own PSA levels since learning about his diagnosis.

Please, ask away. Take care...
 
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romel2020 replied to onlyconnect's response:
Thank you very much for your response. The information was not only insightful, but empowering as well. Your info relieves some pressure from my internal conversations that are based on fear. Thanks again.
 
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tom27 replied to onlyconnect's response:
I too had a Gleason score of 3 4 and had robotic surgery 9 weeks ago. Results seem to be very good except for the incontinence. I'm wondering if your boyfriend did anything to get past this issue aside from Kegels? I do Kegels multiple times per day but still can't stand up without losing all bladder control. I can lay flat on my back and I can sit without leaking but as soon as I get up it starts. Any tips at all would be very much appreciated. The information you have already posted is very helpful. Thank you.
 
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onlyconnect replied to tom27's response:
Hi, Tom27,
I'll have him get online later to respond to your question. I can share what my friend, whose husband had had surgery (cancer-free for six years this February!), told me. Her husband struggled with incontinence for a few months after his successful surgery. He had done Kegels, too, but, for him, it just took time to heal.

As with boyfriend's ED, it has taken time -- some medicine, too -- but mostly time spent waiting for the nerves to come back to life. Everyone is different but, from my experience and from others' stories, it's better to err on waiting longer rather than expecting to be back to normal within a few or several months.

Congratulations on your surgery, Tom27...

Oh, and Jake received advice from his friend, who had had a C-section done: in the shower take a washcloth and rub away at your scar. Otherwise, she said, you might feel numbness in the area.
 
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tom27 replied to onlyconnect's response:
Thank you Onlyconnect for being so helpful. Things can be very frustrating at work but I guess I just need to give it more time. Thanks again.
 
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onlyconnect replied to tom27's response:
Hi, Tom27,
I'm sorry it's taken a few days for me to get back to you. My boyfriend didn't have any problems with incontinence, so he doesn't have much to share about that.

Happy about how he didn't have to deal with incontinence, his mother and Jake gently joked about returning his adult diapers to the grocery store, but I admittedly don't have a similar sense of humor. Having a dark sense of humor is one way to help with the frustrations of work, but it's not mine. For me, what helped was researching cancer into a corner and talking, talking, talking.

If you want to talk about ED, among other things, I have plenty to share. In the meantime, perhaps, I could send you to another blog that I read religiously prior to and after his surgery. Have you read New York Times' editor Dana Jennings's blog? It's honest, insightful, and hopeful. If you haven't read his work already, here's one to get you started:

http://well.blogs.nytimes.com/2009/03/03/living-with-incontinence-after-prostate-cancer/

His writing and the comments readers posted were so helpful, giving us information that the doctor didn't. His surgeon was skilled and very helpful, but there is much anecdotal stuff that has helped both Jake and me, emotionally and physically.

I hope you're well, and, from across the internet miles, a big hug and a high-five to you.
 
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tom27 replied to onlyconnect's response:
Thank you again Onlyconnect. You are very understanding and I can see that you and Jake are fortunate to have each other. I read Dana Jenning's blog and it was helpful. I do wish however that this darn peeing would at least slow down soon. My sweet wife keeps telling me to give it time and have faith. I guess I have to be more patient. As Dana Jennings said, "keep kegeling......" That I will do.
Thanks again.


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