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Just “diagnosed” yesterday – 37 and very scared
About a month ago I started experiencing a bit of urgency to urinate, some pelvic and low back discomfort and a little burning too. I went in to see my Primary Doctor about a week later (since I wasn’t feeling better) and he examined me, took a urine sample and said that there was trace blood in the urine. At that point, he said it was nothing alarming, but that we should do a culture and, in the interim, treat it as a UTI/Bladder infection or urethritis. I took a 7-day course of Cipro w/ Aleve but wasn’t responding so I called back and my Doctor scheduled an Abdominal and Pelvic CT (no contrast.) That was about 2 weeks ago. Per the Radiologist, my Doctor and the Urologist (which my Doctor referred me to thereafter) all confirmed that the CTs were “normal” and showed no problems at all. As nice as that was to hear, I still had trace blood in my urine and some of the other urination symptoms, so I saw the Urologist yesterday and he did a Cystoscopy…Unfortunately, that 5 minutes has seemed to change me forever. My Urologist said he found a 5mm polyp which he told me was “a small bladder cancer.” I went numb after hearing the word, which I never thought I would hear [associated with my name.] He went on to check my prostate and said that the symptoms I’d been experiencing were due to Prostatitis and he said that would likley be cleared up w/ another (60 day) round of Cipro (which I am taking now.) Since yesterday I have been mentally defeated and feeling as though I am done for. I have reached out to a number of support areas (including this one) as well as pestering my Doctors for continued reassurance that this isn’t going to kill me. Both of them said that this is a superficial polyp and that it can simply be removed and I will be fine. Obviously, they said I will need to come back every few months initially for a Cystoscopy recheck to make sure everything is ok, but in the meantime I have to wait 3 weeks until I can have the polyp removed and biopsied to determine the full pathology. My Urologist went as far as to tell me that this is early and I was luck to have discovered it now…he also “guaranteed” me that I’d be fully ok and this would not threaten my life in any way (provided that I come back and see him after it is removed and keep regular checkups.) Needless to say, despite all of this positive reinforcement and general optimism from the people who would seem to have the most authority and experience to offer such assurances, I still cannot help but feeling so incredibly frightened and scared about the “what ifs.” I am only 37, don’t smoke, drink sparingly, don’t eat fast food, and do all of the right things to stay healthy (or so I thought.) This is rare for someone my age, so I’ve been told, which is another reason why this is so perplexing and frightening. I am trying to keep positive, but am in a very difficult stage of this process now…the waiting. I also can’t stop thinking about what they will say after taking out this polyp…after all, the doctor called it a “small bladder cancer” and gave me a pamphlet on it, but then very confidently said that I will be completely fine and that I have “dodged a bullet” by finding this now. I am trying to find the silver lining in all of this, but I have a wife and 2 year old daughter and a wonderfully happy life that I so fully embrace, yet I now struggle with the prospect of not being there to watch my daughter grow up or to grow old with my wife. I’m not ready to go and feel so helpless and scared that this may take me from life and love itself.
I have no choice but to wait the next 3 weeks out until I can have the scope to remove the polyp and better know what this is, but anything anyone else could offer in the way of hopeful words, advice or experiences that may allay some of my fears and anxieties and let me believe as my doctors do would be most helpful.
Thank you
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89 Replies
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I know this is an old post and I pray the outcome was positive for the original poster.
This helped answer a question I posted to my “introduction” post earlier today and I just wanted to say thanks to the efforts of everyone who posts their stories — there are people like me that search these boards for help.
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We hereby reject your application for membership.
Sincerely
the Managment
Now Get out!:laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh:
I wish someone would send me that message.
Good Luck and remember…… You are always welcome to stop by for a …..VISIT.George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Great to hear you are doing better Mel. :cheer:
I am so glad you came here to tell your story so others will see that even when it looks like the worst is going to happen, you can never give up hope.
Please feel free to stop by and chat if you ever need us again.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Hey Mel… That is wonderful news and I am so sorry for this ordeal you have been through. Your story is certainly a cautionary tale for others in dealing with a doctor who is not up to the task.
Looks like we have to kick you out of our BC club (it’s very exclusive, you know ;) ), but please come back any time for a visit!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Thanks for the update!
Glad it was just a lipoma! Sure beats the heck out of having bladder cancer. Once again we are happy to have someone NOT be eligible to join our little club! :D
I would still suggest never going back to that urologist who poked a hole in your bladder. Ever!!!
Best of luck!
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.
Hello all of you!
Just wanted to update you on my condition. I went back for my cystogram and my bladder has finally healed up. So now I am catheter free and tumor free. Wow what a long 30 days that was. I do still have a bit of pain in that area probably from all the scarring taking place but at least it is healed. Found out the spot was called a Lipoma which they say is very rare, go figure it happens to me. Thank you all for your support and kind words to me during my whole ordeal.
Mel
You bet your sweet butt I filed at the medical board and as far as a lawsuit well Texas laws make that pretty much impossible to do. Mike…..that sounds like a perfect idea but I paid her prior to the surgery! Boy how I would love to cancel that charge.
I went back to my doctor today and I am stuck in this catheter for another 14 days and still on antibiotics. They won’t let me change from a leg bag to the night bag so here I am stuck on a night bag for 30 days. They say because of my situation changing the bags increases my risk of infection and that could be deadly for me if it were to happen. At least I am alive and trying to find the blessing of this somewhere in there, just not sure what it is yet.
Have you reported the doctor to your state medical board?
I don’t know how to contact them, but I just Googled my state medical board and found a link right away.
You feel free to vent. You’ve earned it.
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
Mel,
So here is a thought. Take one of your checks, cut a hole where you write the amount and cut a hole where your signature would be. Give them that check and tell them you think that you are even!
If they push back, let them know you would have understood a minor surgical mistake but it became major because of her refusal to see you to determine what was the matter when you had serious issues post surgery.
That’s my opinion. I’ve never done anything like that, but then again I’ve never had any doctor do what you described yours did.
Seems like a hole in the check making it no good is fair for a hole in the bladder. It won’t even be a risk to her life (not getting paid) the way it was to you when she refused to see you for follow up.
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.
That doctor sounds horrible. Sounds like she is ashamed and should be. She probably is also afraid of being sued.
Anita
Forum Moderator
Caregiver
I am hanging in there but DAMN is right! I hate this! I just want to get better. That doctor from the day of my surgery has never answered a phone call from me or called to check on me. Even the day I went to her office she sent her coworker in to see me. Really???? Are you that sorry of a person? Grow some balls. Face the mistakes you have made. I still think she knew she perforated it but just can’t prove it. Sorry I was venting!
Hang in there Mel. You will get through this. We know you can do it.
You have gone through alot and you’r still fighting. Way to go!!!
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
I think you have every right to be upset at your Dr. Even though they are Dr.s….. They make mistakes. But Damn! He should be at your side every minute until you are back to yourself.
Hang in there. This too shal pass…… hopefully.
We know how to keep up your spirits….. Just look at the other person in the Photo you submitted. :) See?George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Hi JD,
Thanks for the well wish. I am so glad it is stage 0. That is the best way to catch it and sounds like your gonna be just fine :P . What a blessing it was that you had symptoms like you did. So many do not. I am sure with checkups you will keep an upper hand on it. Be so very thankful for that.
As for myself I am still on the catheter and unfortunately my cystogram showed that my perforation has not healed at this time. They said he wasn’t sure if a pouch was forming or it was still a hole at this time. I am not sure exactly what the doctor is going to do next. He did mention last time I spoke with him that I may stay on the catheter another 10 days. The radiologist seemed to think that when he compares the scans if they are the same I will have to have surgical repair which I was hoping to get away without doing because they said they will have to cut me from the tummy to get to it. Hoping it looks better than the last scan. I go back to the doctor tomorrow and I guess we will see what his plans are from there. As far as the fluid I have lost 11 pounds of it off of my body so far. Only 5 more to go. Amazing your body can swell that bad just from urine leakage :S !
So angry at the doctor that did this to me. I have lost a lot of work time and it takes away from my kids lives but I am hanging in there. Sometimes I find myself getting very depressed about it but I am alive and keeping my faith in healing . Take care of yourself and keep me updated on yourself. Always praying for all of you!
Mel
Hi Mel – I hope you’re doing better. Just wanted to send you a well wish. I am trying to do my best to move past my whole ordeal, as I now know that what I had was thankfully only the Ta, low grade variety. I still have to go back in four months for a check up, which is already making me nervous, but I guess it is better that way so I can always be sure to stay on top of things.
Will you have to go back for checkups as well?
Anyway, hope your feeling better. Take care.
JD
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