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4 months on Feb 28

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Prostate Cancer
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Posted 2/12/2015 5:10 PM (GMT 0)
I have been lurking around here and haven't posted many comments for awhile. Things have been pretty good for me. I am 100% continent. Have been since the catheter cam out. Still no luck with my ED. I have tried Viagra 100mg but I might as well eat sweettarts. Another thing is that that my URO cant seem to get my pathology report. They are having a hard time finding the tumor. . So now I wonder if I even had prostate cancer. Bad time to be second guessing my decision. I don't want to sound ungrateful, everyone tells me I have dodged a bullet, but I can't stop thinking whether I made the right decision or not.

Everyone here has been such a help to me. But I feel some of you can sit back and tell me "I told you so"

Anyways just some of my venting and frustration post op RP
Posted 2/12/2015 5:21 PM (GMT 0)
Confused... your surgeon didn't review your pathology when he cath came out? That is pretty standard.
Posted 2/12/2015 5:27 PM (GMT 0)
Congrats on the quick recovery of continence! As I understand it, four months would be pretty early for the ED to resolve--seems mostly to be a matter of time.

And don't second guess yourself one bit--we all face tough decisions with this. Just keep gettin' better!
Posted 2/12/2015 9:25 PM (GMT 0)
I went to see my surgeon on Dec 5 and he told me my path report was not back yet. I called the other day and still no pathology. At my Dec appt when the doc found out they were having a hard time finding the cancer he told me they were going back to chase the biopsy needle tracks to find the tumor. So of course my mind is wondering now if there is a conspiricy theory going on. I know alot of guys here are having alot bigger problems than me and I feel guilty bringing this to the forum.
Posted 2/12/2015 9:44 PM (GMT 0)
Wade,

As a practical matter you have gotten your pathology report and it is a good one. If they can't find the cancer (happens, occasionally) you should take that as good news and move on. There's no putting it back.

What is your doctor talking about doing for your ED? You mentioned that Viagra didn't work for you. What's next? I'd direct your attention to stuff you can fix.
Posted 2/16/2015 6:06 AM (GMT 0)
Wade,
4 months is still early for ED. My bf, age 48 at diagnosis, had his surgery one year before you. We are at about 15 months post op now. At this time last year, pills alone did a little bit, but not enough for intercourse. We were using the VED and a ring along with the pills. about March of last year, my bf finally decided to try injections. They worked very well. I think we found the right dosage on the 4th try. We have been using injections since then and I think they helped him make progress. Around August of last year, the pills started doing enough for intercourse. Erections still not as hard as with injections, but it was nice to not always have to use injections. Currently, we mostly use pills, I think we have decided not to use injections any more. Without pills or injections, his erections are about 70-75%, almost good enough for intercourse. Don't lose hope.
Posted 2/16/2015 10:08 AM (GMT 0)
Wade. I am not a surgery guy, but from what you have said it would appear that you are doing well 4 months on from your surgery. Even with nerve sparing surgery there is still a lot of trauma caused in that area, so you have to allow things to heal. Although as Peter said, you should now be concentrating on what can be done regarding you ED issues. I tried the Viagra thing a few years back and found I had the same results as you, but my issues were being caused by depression at the time.

I would look at the fact that they are unable to find any cancer in your post surgery biopsy as a good thing. "No news is good news"

Doubting your treatment choice serves no purpose. You saw your doctors, gathered all the information and then pulled the trigger. After doing all that there should be no looking back.

NEVER think that your worries/concerns are too small for mentioning here. That is what this place is all about. Sometimes it is good too share what is going on inside your head. No matter how small or embarrassing it may appear to you. I have not said this before, but last month when I went for my treatment my mind was in such a state that I put on odd socks. I never noticed, but the nurse at the hospital did!. Did I feel stupid at the time? Yes very stupid. In fact I felt so embarrassed that when I came home I left the grey surgery support stockings on LoL

All the very best to you. Please keep us posted with any updates. Even if your socks don't match turn
Posted 2/16/2015 1:06 PM (GMT 0)
Wade,
Maybe they just can't find any cancer post surgery. From your signature it looks as though your first biopsy was positive in one core, then the second was negative for cancer. It could be that you had a small volume of cancer that somehow resolved. I have talked to a few oncologists about this phenomenon and apparantly it has happened on rare occasions. Maybe you were one of the lucky ones.
Posted 2/16/2015 5:27 PM (GMT 0)
I am six months out from surgery and actually going back today for the next PSA check up. I had no luck with pills, but the Trimix has been working well. I am having some semi-erections, so it is still early and they may come back. Just keep working with your doctor, mine has been very helpful. We tried Cialis first and later Viagra but didn't get results from either one. I've tried the pump as well and it seems to be helping some now. Best of luck to you.
Posted 2/16/2015 11:43 PM (GMT 0)
Jay1957, yes I agree the injections helped the most at 6 months post surgery. I think we were at about 9-10 months when Viagra actually started working enough for intercourse. It definitely takes time for the nerves to heal.
Posted 2/18/2015 4:54 PM (GMT 0)
Thanks for all the positive responses. As always the advice here helps so much. It is hard sometimes to keep things in perspective but the advice in this forum brings things back to the reality. Thanks everyone
Posted 2/19/2015 6:37 PM (GMT 0)
Hi Wade:

Re the ED, I suspect it will just "take time". Others have weighed in with reasonable thoughts on this and I'm hoping that they are right and that you will get a new normal that is satisfactory.

I must admit that I am troubled by your experience with your doctor. Not having a pathology report at this point is seriously unacceptable and irresponsible on the doctor's part. My guess (driven by my own suspicious mind) is that he is either hoping you will go away or is hoping to find "some" cancer so that he can spare you the news that you had a needless operation.

To be quite honest, my personal belief is that it was unethical to operate on you with your stats. Your most recent biopsy had shown no signs of cancer and your PSA was dropping. I can understand your need to "get it out" as we have seen that many times here. What I simply cannot understand is a competent medical person that would agree to such a procedure.

BTW. you are not the first person here on HW who has experienced no cancer in their post-op pathology. I can recall two others who had the same thing...after their pre-op pathology showed minor signs of cancer. However, you are the first that I can recall that actually had surgery when their biopsy showed no cancer and the post-op pathology confirmed that fact.

If you really want to know the truth, I suggest you contact the chief of surgery at the hospital and demand the facts. Or, perhaps you want to get your slides read by Epstein or Bostwick - I assure you they will not take four months to respond.

Anyway, I sincerely hope that you make a good ED recovery and I just had to mini-vent about the situation in which you find yourself.

Jim
Posted 2/19/2015 9:38 PM (GMT 0)
Reality is my.surgeon is the head.of urology at the hospital since the early 80's and is also a.professor of urology at a university.

I have to think he was more than qualified to help me with my decision making.

I dont regret my decision peace of mind is priceless. And.if my ED goes away it will all have been worth it.
This weekend is the Anniversary of when my journey.started and I think I will sit.down this weekend and write a post about this journey. Hopefully my experience can be used to help others in the future
Posted 2/19/2015 10:20 PM (GMT 0)
Wade,
NEVER look back on your decision. You were told you had cancer, and you made the best decision for yourself with the information you had.

With that said, I agree with Jim, about the pathology report. It seems to me to be unconscionable that you had surgery in October and were never provided with a copy of or gotten the results of, the pathology report. I would contact the chief of pathology and ask him or her about it. And if you don't get results, go to the President of the hospital if you have to, and threaten to file a complaint. You have a legal right to that information and its important and relevant to any follow up you should or should not have.
Be the greasy wheel here, make some noise.
Posted 2/20/2015 12:52 AM (GMT 0)
I agree w/ what Prat said. I would be having one of my redneck hissy fits demanding they give me the surgical path report or I would be coming down on them like the wrath of God. (Yeah, I'm in one of my moods lol). I would be getting one or getting a lawyer. Even if it shows nothing (they couldn't find the cancer on surgical path) The biopsy showed it and you made the decision that was right for you at the time. No matter what it says you can't undo it but you have every right to see exactly what that report says. I have never in my life heard of this.~Miki~
Posted 2/20/2015 2:38 AM (GMT 0)
Miki, is a redneck hissyfit the same thing as a New York rant? Methinks it is.
Posted 2/20/2015 2:51 AM (GMT 0)
@ Prat, Only if tobacco, trailer parks, and dueling banjo's are involved. lol I'm southern to the core :) Somehow I imagine a NY rant a little differently lol.~Miki~
Posted 2/20/2015 3:19 AM (GMT 0)
You should have see me ranting before my diagnosis, I was famous for it .
Now a few short months later, I hardly every get mad
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