Starting to feel discouraged

Going on ten months post-RP and I've been rolling with the punches so far, but now I am feeling a bit discouraged the way this keeps snowballing. We went out to dinner last night to celebrate our anniversary and I had to sit on a hard wood seat. Today my groin still aches. It aches because the revision surgery to my AUS implant two weeks earlier left a hard lump behind my testicle. I saw the surgeon a week ago and he said it is swelling and will go down, but I swear the lump was not there after the original implant surgery.

The AUS was necessitated because the RP left me nearly totally incontinent. And because the RP only "got out MOST of the cancer" I was supposed to start SRT back in March, but it requires sufficient continence to hold a full bladder every day for the 38 day IMRT. Activation of the AUS has been pushed back by two weeks because of the revision, and is now a full month away, and is timed to coincide with my next 6-month Lupron injection.

I've been hoping to get SRT underway before I hit the one year mark post-RP. It's a very tight schedule with a lot of moving parts. The biopsy that finally found my tumor was last June, and I have been fighting this ever since. We got a huge blow back in December when my wife was diagnosed with lymphoma and my treatments were interrupted until she was cleared. Now we've had to change some travel plans because I don't feel I could sit long enough to drive more than a couple hours and so we are going to fly instead (I bought a donut cushion for the flight but it only helps a little.)

I feel like the nursery rhyme about an old lady who swallowed a spider to catch the fly. The AUS was implanted so I could begin radiation to eradicate the cancer that had escaped the surgeon. And now the AUS is the most disturbing problem. Yes, I have read and heard that following AUS surgery it is not uncommon to think "why did I ever have this surgery". But I do know why I had it, it was necessary. But it's not supposed to hurt this much more than a month after surgery.

Now I guess all I can do is wait until activation and hope that if it still hurts as much as it does now that I don't have to chase down another surgeon to have the darn thing taken out. I've been optimistic so far for a good outcome, but it seems it has been one step forward and two steps back.

BTW I requested a T-level check last week (never been tested before) and was told my testosterone is 30. Is this right for someone on Lupron for six months? Seems to me they made the results match the expectation.

Thanks, yes, I've gone into as much detail with the Urosurgeon as I can at this point as well as with my GP. GP of course doesn't want to butt into the surgeon's business, but he did get me on anti-depressants which had helped until just recently (we're pursuing a dosage increase). The uro of course attributes all the pain to the surgeries, which I cannot argue with. But I did say to him, after he had felt the area of my problem, that I wasn't sure that he was able to feel the same thing that I am feeling, lump wise that is.

As I mentioned, things are in a holding pattern for the time being, as we have travel plans for the 4th of July and a couple weeks after that the activation. I see your husband has been thru quite a lot, and I hope he is able to maintain a good spirit about his ordeals. I had declined Prolia injections because of the risk of osteonecrosis, and so far am glad that I did.

I am hoping to maybe hear from a few AUS guys who had a less than stellar experience, then maybe I won't feel so all alone. I was feeling chipper until just a few days ago when I realized that it had been over a month since the implant and next Monday would have been the original activation date.

Thanks again!

Rob, wish I had some advice for you, I can only say I really hope things turn around soon. It sucks when you re bombarded by multiple health issues.

Please hang tough, as you always do, Rob. You are in my thoughts and prayers.

So sorry to read about this.

At least your PSA Is low and holding and it doesn't look like you're on ADT. Sounds like the cancer is waiting patiently for sRT. Hope you feel better soon.

Hang in there, RobLee. You are due for good news.

This disease will definitely grind on you. I've been dealing with the ups and downs since 2010. As you know, I'm fortunate enough to be riding one of the "ups" periods right now. But, I know how low those tough times can be.

I'm going to "friend" you here. Please accept it. Then, I'll PM my contact info. I'm here if you ever feel the need to talk with a "brother" in this battle.

Tony

RobLee said...
Going on ten months post-RP and I've been rolling with the punches so far, but now I am feeling a bit discouraged the way this keeps snowballing. We went out to dinner last night to celebrate our anniversary and I had to sit on a hard wood seat. Today my groin still aches. It aches because the revision surgery to my AUS implant two weeks earlier left a hard lump behind my testicle. I saw the surgeon a week ago and he said it is swelling and will go down, but I swear the lump was not there after the original implant surgery.

The AUS was necessitated because the RP left me nearly totally incontinent. And because the RP only "got out MOST of the cancer" I was supposed to start SRT back in March, but it requires sufficient continence to hold a full bladder every day for the 38 day IMRT. Activation of the AUS has been pushed back by two weeks because of the revision, and is now a full month away, and is timed to coincide with my next 6-month Lupron injection.

I've been hoping to get SRT underway before I hit the one year mark post-RP. It's a very tight schedule with a lot of moving parts. The biopsy that finally found my tumor was last June, and I have been fighting this ever since. We got a huge blow back in December when my wife was diagnosed with lymphoma and my treatments were interrupted until she was cleared. Now we've had to change some travel plans because I don't feel I could sit long enough to drive more than a couple hours and so we are going to fly instead (I bought a donut cushion for the flight but it only helps a little.)

I feel like the nursery rhyme about an old lady who swallowed a spider to catch the fly. The AUS was implanted so I could begin radiation to eradicate the cancer that had escaped the surgeon. And now the AUS is the most disturbing problem. Yes, I have read and heard that following AUS surgery it is not uncommon to think "why did I ever have this surgery". But I do know why I had it, it was necessary. But it's not supposed to hurt this much more than a month after surgery.

Now I guess all I can do is wait until activation and hope that if it still hurts as much as it does now that I don't have to chase down another surgeon to have the darn thing taken out. I've been optimistic so far for a good outcome, but it seems it has been one step forward and two steps back.

BTW I requested a T-level check last week (never been tested before) and was told my testosterone is 30. Is this right for someone on Lupron for six months? Seems to me they made the results match the expectation.

Really sorry to hear about your experience Rob. It seems like you've had one thing done to accommodate something else being done and the two things are affecting each other!
I think having cancer (in fact, many illnesses) can be like this can't they. For instance, having had RP back in Feb, I'm now 10 sessions of radiotherapy in (out of 33) and my need to use the loo has become, once again, ridiculous. I was started on a drug to help this (to calm the bladder down) but I chose to stop taking it because it gave me an awful dry mouth, a skin rash, and I found my ankles started to swell up like Widow Twanky!
Like you, removing the prostate didn't get rid of all the cancer, hence having to have radiotherapy. I'm only 48 and because the surgery was radical, I've had all the nerves removed etc..so bang goes my 'intimate life' for the rest of my life! At 48 years old....
Hang in there mate. I try to do two things: firstly, literally take each day at a time and only do what I feel I can do. Secondly, to be thankful that I'm not dead.
I sincerely hope you get this all sorted and that you can go on to lead a more settled life than the one you have now.

RobLee, I feel your pain, man, and wish you the best. Do like I do...to cheer myself up, I turn to alcohol (in moderation, of course =). When I first contemplated surgery, my thought process was, well, I hope ED is less of an issue than incontinence. Sometimes I wonder how I'd deal with the vice-versa. i feel lucky as I returned to E-functioning pretty quickly, and wonder how i would feel if the opposite were true.

Regarding ED v Incontinence, there is a huge difference in the amount of time you are affected, realizing that, psychologically speaking, both have the potential to affect your mind 100% of the time. Erectile function is fairly limited as far as how much time in your day is affected (regardless of activity), whereas incontinence is 24/7...it affects you when you're awake, when you're asleep, when you go out of the house, when you drink, when, as we did last weekend, you go to a pool party, sporting event, exercise, restaurants, errands, the list goes on and on and it includes virtually all aspects of your life.

I think about what if I had full continence but was experiencing ED...I can only imagine what you guys are going through...of course, 2 months in to Lupron, and I'm getting a better idea.