Take your time before the big decision

Seems like every day I read a post from a person newly diagnosed with PC asking for advice. Am not writing to give any specific advice but only to say take all the time you want and make a careful decision. Am about 8 weeks post robotic prostate removal and having a lot of second thoughts on my decision.

Went to my PCP last July with a complaint of difficulty urinating, nothing terrible just very slow and not emptying completely. Thought it might be prostate enlargement and a pill could help me with this. He had me take a PSA and results came back 4.9. Saw a uro and after a course of antibiotics took another PSA this time 5.0 and time for a biopsy.

Uro called me a few days later and laid out the options; nerve sparing robotic surgery (Doc has 200 under his belt), radiation, or active surveillance. He encouraged surgery and said up front that was because he was a surgeon and I was relatively young which made surgery a good option. If we AS I would need a biopsy, PSA, and office appointment every 3 months. At that point everything just started moving fast, too fast. Decided after talking again to my PCP and doing some reading to go with surgery at the small local hospital, just wanted the cancer gone and did not want to inconvenience my family with travel to a large city hospital. Had previously had my gall bladder removed and I snapped back from that in a few days, did not think this would be so hard either, scheduled surgery for after the holidays. Surgery went well, one nerve was nicked and negative margins, two days in hospital and 7 days with a catheter.

Now 8 weeks post op my life is truly changed. Being totally incontinent any time I'm walking or moving plus the loss of sexual function have done a number on my attitude towards life. I should be grateful the the post PSA is 0 but I still miss my pre-PC life. Did I make the right decision on treatment, did I need treatment right away given the small size of the cancer, did I choose the right hospital and doctor? My wife has been incredibly supportive and stresses the positives (zero PSA). When I read the histories of some of the other folks on this forum along with what they have been through I really should not complain and be eternally grateful. My doctor even said after surgery it was so small and caught so early there was a 99%+ chance I would not die of PC. Yet in the end I wish I would have taken a little more time and considered everything before saying go. Might have made the same decision but could feel better about it.

Am not writing to give any specific advice but only to say take all the time you want and make a careful decision.

most guys and their spouses "just want it out" and the point of contact, the urologist, is a surgeon who is happy to oblige you. we just wanted it out too but my doctor advised against surgery and i asked him how much time did i have to decide. he said "two weeks, not two months".

we're dealing with cancer and time is the enemy for many of us. sorry to see you so down but it's common at your stage of recovery and i expect you will improve beyond what your mind is telling you is possible. hang in there!

ed

Second guessing yourself at this point is counterproductive, I'm afraid. You made the best decision you could, at the time you did, with the information you had, and weighing the risks you could. Later outcomes may show that was either a good decision, or perhaps another path may have been better, but you absolutely can't go back and change it. We all have 20/20 hindsight, but even then it is maddening with this disease since every case and every outcome is so unique. This path of doubt does not lead you toward recovery, which is really what you want to focus on now.

We're all here for you, and I know there are many here who've been through surgery and its side effects. Talk to those folks here, ask questions, and take courage. It seems with surgery a lot of guys really despair about where you are in the recovery process, but then improve significantly later. I have no specific advice, not having had surgery, but try to keep positive. There should be a number of people here who can encourage you.

Actually, quite a few of the forum regulars are down in Florida right now, suckin' down suds with fellow forum members. They'll all be back on here in a couple of days, probably nursing a few headaches but basking in the glow of some great time with great friends!

Stay with the forum, Ragman. There's advice and support that should help you along your recovery. All the best!

8 weeks post op is literal infancy as far as recovery is concerned. My continence was poor at 8 weeks. At 12 it was almost as good as it was prior to any mention of PCa.

Sexual function is the biggie that takes more time than continence. I've been fortunate that I've had usable erections from early on but not like I want or was before. I think kegel exercises have only heightened orgasms.

Overall, at almost 7 months I'm feeling fortunate things are going as well as they are. I expect full function back in the ED arena over the next several months. If it never hits then I'm still happy.

Your hormones may be way out of whack now minus your prostate. Hard to say.

Time is the one thing nobody wants to hear it takes, but that's what it takes. I hope it doesn't plod along for you.

I agree with your wife that the focus should be on the other issue of being "cured". Imagine it the other way around. Great erections, continent, but cancer not gone. Would you trade? No, you wouldn't because if you would, you wouldn't have elected to do something in the first place.

It'll get better.

Hi Ragman,
I am one of the forum members attending GFMPH in Florida. I am sitting in my hotel room after meeting 20 of my brothers from HW the last few days and I am reading your post. I am sorry you are having a down day today. You are already undetectable 8 weeks post-op. Most guys don't have their first PSA for 3 months after surgery so you are doing well so far.

Incontinence and ED are typical side effects of surgery so this is going to be the new norm for now. It is too late now to second guess your decision. You need to live in the present and give up the past. I am still incontinent 20 months after surgery. Only about 10 percent of the guys will be in my situation. I bet you will be dry in a couple of months from now so just accept it, you don't have to like it but accept it.

When I had my surgery, I figured I would be spending the next 2 years dealing with side effects. Well, it may be longer than that but, what can I do about that now.

My wife said the same thing at first, at least you are undetectable.

After the past few days, meeting all these wonderful brothers from Healing Well at GFMPH, which stands for Good For My Prostate Health, I am a lucky man for having prostate cancer. That is right I am lucky! The reason I say that is you need to make the most of a bad situation. If I didn't have PCa, I would not have met these guys this week, I would not have found Healing Well, I would not be posting here tonight to you.

Be a patient patient! Come join us here anytime. Ranting is allowed. Most of us sometimes may feel regrets about our decision. All of us know what you are going through. It is hard to talk to family or co-workers about this stuff but you can here.

Take it a day at a time, some days will be better than others.

Bill from Florida

ragman,

 I agree with what everyone else here has said please don't look back it its counterproductive, you made the best decision with the information you had at the time, trust yourself that it was the best for you . While having a great surgeon at a large facility is a plus, there is no guaranty going into this no matter were you are. 

 I've been here almost a year and have seen recoveries vary all over the place you are still very early in yours, the best thing you can do now is stay positive, there is no reason to think you are not just around the corner from a complete recovery. please keep us posted.

good -luck

carl

 

Post Edited (riverunner) : 3/23/2014 4:19:54 PM (GMT-6)

Ragman, as others have said, it is likely that your continence and ED issues will improve with time. If not, folks on this forum will help you find other ways to deal with them.

Nevertheless, your original post is a great reminder to anyone considering treatment that they should take their time, get educated and then find the best possible practitioner to perform treatment.

Best of luck on your continuing recovery.

Jim

The level of support and collective wisdom of the folks active on this site is nothing short of amazing. A good nights sleep, a dry night, and reflection on all that was said makes a difference. Have done my kegels. first core exercises of the day, and am ready to see the positives again.

The PC experience really is a mental one that matches the physical. Understanding that and having patience, something I'm not know for, is a step towards a healthy recover of body, mind, and spirit.

Thanks so much for your insights on what started out as a cold dark night for me. Looking for the sun to pop out anytime now.

Ragman,
Hang in there. Your body has a lot of healing to do and it takes months. A nurse I know always tells me that 80% of the healing happens in the first six weeks and the other 20% over the next six months.

Second guessing is a crazy making activity.

I suspect that in time you'll be doing just fine and all this will just be a bad memory.
Andrew

Ragman,

Sorry to see that you're at a low point. A lot of us have been there. I think there are two morals to your story.

One is the one you state: don't rush into anything if you're newly diagnosed. Probably the most common regret around here is that guys didn't consider all their options carefully enough, and with a sufficiently open mind. Unless your cancer is very advanced, you almost certainly can take a couple months to make an informed decision. A lot of doctors will try to steer you away from the internet as a source of information, but I don't know where else a patient should go. To be sure, some internet sources are better than others, and you need time to separate the wheat from the chaff. Major medical institutions like Johns Hopkins and the Mayo Clinic are certainly good sources, as are prominent doctors like Snuffy Meyers. Check out everything. In my view, blind trust isn't a prudent way to make a major medical decision.

The second moral of the story is not to rush to judgment about your treatment after the fact. And I agree with those who say that beating yourself up over what now looks like a bad decision is counterproductive. Your vantage point right now is pretty poor when it comes to judging the wisdom of your decision. Low points are common, as is ED and incontinence. For most men the worst of it is temporary, and often recovery from those side effects can come rather suddenly. The advice to hang in there is sound. Right now you're seeing the worst of it, but things change as you heal. It'll get better. And even if they don't get sufficiently better, there are ways to fix it.

So for the newly diagnosed who are reading this thread, I would suggest that you can't be too careful about doctors and treatment choices. You almost certainly have plenty of time for research, self-education, reflection, second opinions, conversations with other PCa patients, and Healing Well commiseration. Take your time with this. Avail yourself of all these resources. It's the best gift you can give yourself at this very scary and difficult time.

For you, Ragman, I agree with those who advise you to hang in there. My hunch is that you'll feel very differently about all this in a couple months. I also suggest that you consider attending the September GFMPH event. It's a fun thing with cool people, and it can be a hugely uplifting experience. Meanwhile, check in with us and let us know how you're doing. It gets better. I promise.

Jonathan

Post Edited (Jazzman1) : 3/23/2014 9:51:35 AM (GMT-6)

turn the corner without a periscope. 8 weeks is such a short time. Surgery can act on your emotions for awhile, its a lot of trauma. You are highly unlikely to ever see a detectable psa ever again. incontinence and Ed are fixable. Especially for a young man. and others are right, no one knows what the results would be anywhere else. Yours is not an uncommon story. Use a VED, daily,. When there are rumblings there take pd5inhibitors. My surgeon told me the pills are a waste of time till the nerves start coming alive again. When you say nicked a nerve, did you mean intentionally or not. They are in fact a bundle of nerves. Ask for and insist on the Surgeons notes of the surgery, which should show in detail what he did re, nerves. Ask him, were you able to spare the bundles on both sides, one side, partial on one, partial on two, none. Do not be intimidated by by your medicos. If any intimidation is to be done { none should on either side but..} you be the intimidator.

Everyone has doubts about virtually every major decision we make in life.

Its a process it all takes time.

Good Luck over the next few months recovery time varies.