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diagnosis @ 33, what to expect?

10 years 4 months ago #26746 by livelaughlove
Are the re-TURBT procedures common? I have had another so-called "highly decorated" Onco/Uro doc review my charts, his first suggestion was another full blown Cytoscopy in the Hospital. I asked if we could just have a localized "viewing" in office and he was offended? The out-of-pocket expenses are 50 in office, or thousands in outpatient again....Caught me off guard to say the least... I do not see the need to go under unless it is completely neccessary. He was very cocky and would not hear anything I was saying. Pissed me off, and his staff was completely rude. I am quickly becoming frustrated with the healthcare system, it is as if they are the one's that need the treatment.. I come from hard work and these people are the laziest I have ever seen.

I plan to receive yet another opinion. It will only be with someone who has experience with a chart like mine. That is proving to be a hardship so far. Still trying to find a doc in the nc area, with successfull experience treating men of my age. I have lucked up with my initial Doc., he is the most trustworthy so far. He shows compassion and understanding to boot. I do value another set of eyes and staff for review and double checking though.

Know a good doc in NC?


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10 years 4 months ago #26673 by mmc

I was done fathering children by the time my bladder cancer came along so I can't respond to that part.

You mentioned Ta 2-3 in your message. You may want to consider a re-TURB if you haven't already gotten one.
Also, a second opinion at a major bladder cancer center would be in order. With the staging you mentioned, there may be other things beyond BCG that should be considered.

Delaying treatment can be a risky thing. You want to do everything possible to ensure that you will be there for your wife and child for the long term.


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...

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10 years 4 months ago #26672 by livelaughlove
I have no clue.... Something gives though..

I plan to postpone treaments for a short while. We will try to conceive before all treatments, but will continue to have examinations on the scheduled 3 month intervals. I have not heard one single case of post treatment conceptions. Not one single doctor I have consulted with has had experience with a male of my age either. I know I am not the first and definitley not the last.

thanks for the posts Rocky and Sapie. Sapie, keep me posted, I think we may have a similar track record?

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10 years 4 months ago #26671 by sapie
I was also diagnosed with T1G3 last year at 32. I was advised not to get pregnant for the next 3 years due to the BCG treatments. According to my doctor, the BCG does not appear to affect fertility. I am sorry to hear another 30 something year old diagnosed with BC. What is going on?

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10 years 4 months ago #26641 by Rockyiss
Hi Eric, I was ta grade 2 and ended up going to John Hopkins for a second opinon. The uro I saw before I went to J.H. did one treatment of mytominicin when he took out the tumors, he then wanted to do bcg for the next several years, hence my going to John H. Their advice was to just do a wait and see, cystos every three months and no bcg. One year after I had a small neoplsma taken out, they are still just keeping an eye on me. It has been seventeen months with no reccurs and I go back at the end of this month for my cysto again.
My bother had a papillary tumor taken out four times ( no other treatment) then lost his insurance. He didn't get checked again for nine and ahalf years, at that time there was no sign of the b.c.
If I were you I would get a second opinon. Maybe you could hold off any treatment until you guys get that baby here safely, No matter what you decide keep getting checked ! Rocky

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10 years 4 months ago - 10 years 4 months ago #26573 by Patricia


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