Have some questions

5 years 8 months ago #55636 by Alan
Replied by Alan on topic Have some questions
I had to google, angiomyolipoma. I had never heard of it but, it reads good for you. Good luck and now lead the rest of your life and enjoy! Glad it is good news.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

Please Log in or Create an account to join the conversation.

5 years 8 months ago #55634 by Jack R
Replied by Jack R on topic Have some questions
Bundy,

Congrats on a "no cancer found" report.

I am a rather unsure what the doc meant to say about your bladder. "Implacable" is not a term that provides much, if any, meaning. Did the doc offer a clear, meaningful evaluation of your bladder and urinary tract health ?

I trust that the doc described the possible course over time for an angiomyolipoma, and described possible symptoms that might arise. Did the doctor say the angiomyolimpoma is in the bladder or the kidney ?

Along with the earlier hospital results, you need to add the current findings to your medical record, and advise any other doctors you may see of your history.

Again, a diagnosis of "No Cancer" is one we like to hear. It seems that you may have another issue that you will need to follow closely.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

Please Log in or Create an account to join the conversation.

5 years 8 months ago #55633 by bundy13
Replied by bundy13 on topic Have some questions
Hi guys, thank you for all your support. I had my cystoscopy. The urologist said my bladder looked "implacable" he quickly reviewed my CT scan and said I had very small (1.6 CM) angiomyolipoma. He said it's too small to do anything. He said it probably wasn't what caused the bleeding because when they bleed it's usually doesn't show in the urine. So he just told me "you're fine, we'll do an ultrasound in 6 months to monitor the angiomyolipoma. It's too small to do anything about it. We'll see if it grows in 6 months." I was so happy I have no cancer I forgot to ask about the bleeding further. I'm guessing it's the kindey stone that was also found on my CT.

This is an awesome group and I found a lot of info. I'll stick around as a witness that all bleeding is not cancer hopefully I can help some people put their mind at ease.

Please Log in or Create an account to join the conversation.

5 years 8 months ago #55628 by bundy13
Replied by bundy13 on topic Have some questions
You're right, thank you for answering. It just surprised me that there's no talk about the bladder under the "kidneys, ureters and bladder" section. I'll just wait till next week and try not to freak out. B) :)

Please Log in or Create an account to join the conversation.

5 years 8 months ago #55627 by sara.anne
Replied by sara.anne on topic Have some questions
Since as you know, none of us are doctors, it would be extremely inappropriate for anyone here to try to interpret this. This is the job of your doctor. We are, however, fairly good at interpreting “doctor-speak” after you have discussed this with him.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

5 years 8 months ago #55625 by bundy13
Replied by bundy13 on topic Have some questions
Thanks again for the response! I have been trying to stay off the internet lol

So, I have picked up my CT scan result report from the imaging clinic and it doesn't mention the bladder at all. That could be a good sing right? There's some stuff I think I have a small tumor on my kidney but I'm not sure.
Now I know no one here is a doctor but I don't see mine till next week. If I post the part that talks about what they saw can anyone help me understand it?
Thanks in advance.

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne