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Moving over here! :)
I think I am out of the newly diagnosed forum since that was months ago. so I am moving over here. I have not been posting but have been reading everyday. I dont feel I have much to offer right now. I sound like a broken record but I am still in pain. :( BCG treatments starts in one week. I am scared. The fact that I am still in so much pain when I void is making me a wreck that they are going to be putting in a cath while I am awake. I fear the pain! Everything else is going well. The kids are covered for treatment times and I have my Dad here to help. I am very blessed to have such wonderful family and friends to be here for me. I hope you are all well. Amy
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11 Replies
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Mike, my Uro said he thinks it is because of my age. Because I am young my bladder had a lot more inflamation than it would if I was 20 years older. He explained that If I were 60+ and broke my arm it would take weeks longer to heal than if I broke my arm at 40. He also said it is because my bladder muscle is still very toned unlike a bladder in an 80 year old. He has had 2 other patients my appox. age and they also suffered a very long recovery. For what I have been reading it is not so uncommon.
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It really should not be hurting so much. What does you urologist say about it?
Maybe there is something that can be done (surgical procedure or something) so this is not an ongoing major issue.Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I am not scared of the treatment itself. I am scared of the pain the catheter is going to cause. I am still in severe pain when I pee and I am taking 800mg Ibuprofen every 5 hours and I am taking hyophen 3xs a day. I still have to grab onto the sink to keep from jumping up off the toilet when I pee. I cant imagine them sticking in that tube and it not hurting like HELL! As far as feeling yucky I have made up my mind that I am going to be sick as a dog so if that doesn’t happen then I will be relieved :P if it does then I am mentally prepared.
ditto Nancy·s comments – my first BCG washes were a breeze, no great discomfort with the instillation, although quite a bit after a couple of hours and for about 48 hours afterwards, but definitely not a treatment to be scared of going through.
Diane
Amy,
I am concerned that you are still in pain when you void. What is your uro saying about that? Hope your BCG treatments go fine and BCG does its job. It has worked for Doug.
Anita
Anita
Forum Moderator
Caregiver
Hi Amy,
I think everyone is nervous about BCG washes the first time. It really isn’t any thing to be afraid of, in fact, I used to try to visualize my bladder fighting off the cancer. After all my treatments……it did :laugh:
Good luck, and I just know that soon you will be passing on the same comments/advice everyone is giving you!Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
I have a teapot collection. I used to collect just any teapots but when I got over the 100 mark I got rid of anything I was not super fond of or that was cheaply made. I have about 150 Well made and antique teapots in all shapes and sizes and I would go out and buy 10 more right now if I could ;) I am hoping they come out of the basement someday soon. We had to pack them away when the boys were little. They broke a few and I wasnt willing to risk anymore loss.
Thank you John. I appreciate the support and information. :)
Hello John… Welcome to the forum and thank you so much for sharing your incredible story. Congrats on making the two year mark without a recurrence. We celebrate every milestone as a victory!
And Amy… is there a story behind your “teapots”? :) I collected teacups and teapots until I became overrun with them and had to stop the madness!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNHi Amy – I am a 3 time survivor of bladder cancer and after the 3rd operation, underwent BCG treatments. I, too, was scared – but it turned out to not be that big of a deal. Yes, there was some pain when urinating for some hours after the initial (and subsequent)void – but that goes away. I learned to take a pain reliever about 15-20 minutes before the end of the 2-hour waiting period so it could start to take affect. And then used it every 4 hours when needed. The process itself of inserting the BCG is very quick and pretty painless. It is right about 2 years now since I started my first full BCG treatments (after the 3rd surgery) and I had a follow-up set of 3 treatments ending last week (have done a total of 13 in all). I don’t go back for the next cysto for 6 months – but last month was the first time I have made it passed the 2 year mark without the cancer showing back up. I have to credit that to the BCG, but who knows. Hope this helps a little – I got some good feedback before I had it done the first time (helped me to actually decide to do it). And if it helps any, I was serving as a missionary in Bolivia (poorest country in SA) and had the last surgery and my initial BCG treatments done there! John
Good morning… I’ve never had BCG, but when I get my cystoscopies they use numbing gel first and I don’t feel any pain at all when the scope is being inserted… just a bit of pressure. Don’t be shy about telling them about your pain and nerves about your first treatment.
I hope all goes well for you next week! Glad your Dad is there, too.
And, here there is no such thing as a broken record. That’s what we’re here for… to listen, no matter how many times you need to say it.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNSign In to reply.
