Low Grade First Diagnosis - Second Found after 15 months

2 years 3 months ago #56813 by jchammond
Hello -

I really never expected to be here. I am a 47 yo female. In 2017 I was doing a lot of CrossFit and wanted a sling - after kids they made a lot of things weak :) During installation of my sling, by doctor saw something "strange" and took a picture. She handed it over to my now doctor and he said, looks like cancer to me. Within 2 days I was in his office for a "look" and then CAT Scan.. and 5 days later a TURB... it came back stage 0 / low grade. He did no other treatment at this time.

Just went for my 15 month check up - I have been going every three months and sure enough, another mushroom as I call them, was found and a "rough" spot near my kidney opening - which he will watch - he can't burn it without messing up my plumbing.

I am scared - I know "they found it early" which is all I hear from my family and friends. Am I going to live and for how long? I have an 11 yo still - how many more of these treatments will I endure? My urologist was trained at a teaching hospital in Chicago and is on the up and up of what the new treatments are, etc.. but he is very clinical and keeps saying these are low grade and non-invasive and caught early. and.. can they go to high grade??

I am scheduled for a TURB on Wednesday.

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2 years 3 months ago - 2 years 3 months ago #56816 by Alan
Welcome Jchammond,

If you have to have bladder cancer you have the best pathology report, low grade non invasive. Quick to your first and everyone's most important question, you in all probability will live to whatever your statistical age or more assuming you have no other health issues. For most of us it will be something else that we will succumb to someday. You are doing what needs to be done with cystoscopies every 3 months and would graduate to every 6 months if and when no tumors are found, usually at year 3 and 4, and to yearly at year 5 if nothing is found.

Low grade is commonly called a "nuisance". Yes, low grade can come back and also come back as high grade. Sometimes after a second or 3rd recurrence immunotherapy called BCG is given to help prevent these. This web site has information on that. It also sounds like you have a very good URO from one of the teaching hospitals in Chicago. It really sounds like he is doing the standard protocols. IF you ever have any doubts a second opinion is often good for peace of mind which for many it simply confirms the first diagnosis.

Easy for me to say but, take one day at a time is really it is all we can control! I was high grade many years ago as well as many of us and we are still around leading productive lives. Keep posting as any other questions arise and you will know more after your next TURB.

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.

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2 years 3 months ago #56822 by Jjbrown
I never expected to be here either. I am also a 47 yo female with young kids. I thought I had a UTI and after two rounds of antibiotics they decided I should see a urologist. I'm thinking kidney stones at this point. Cancer....I'm too healthy. I eat organically, watch my plastics, don't smoke....Wrong! Doesn't matter. My urologist looked at me in the middle of my cystoscopy and says " you have a small tumor and its probably cancer." He said only 3% of these are NOT cancer. Well my world turned upside down on 1/29. I couldn't even think of any questions to ask him, I was in a different world just trying to process what I had just heard. I am scheduled for my TURBT on the 19th. I can't help you in terms of how procedures work etc as some of the other " seasoned veterans" can, but I just wanted to respond so you know there are others in your same boat. Friends don't get it, the only people that can truly understand this absolutely terrifying experience and the emotional rollercoaster it puts you on are the ones who have been there. Hence, this site.
Keep your chin up, I am also trying to do the same.
Good luck!

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2 years 3 months ago #56829 by jchammond
Thank you for your response - will let you all know the pathology report after the next round of surgery. I really do pray it's another low grade again. Day to day is how I am doing this for now...

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2 years 3 months ago #56830 by jchammond
You and I are def. in the same boat! When my first one was found during my sling surgery, they told my husband who was like NO WAY! This girl runs, does crossfit, eats crazy healthy - it doesn't matter, cancer does not discriminate. I am wishing you the best of luck on the 19th and you are not alone! The folks on this site are so informative and I am thankful I found this so going forward I have a place to go for support.
Stay strong - we are going to beat this!

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2 years 3 months ago #56832 by DougG
My husband, Doug, was diagnosed in 2001 at the age of 44. We have been on the roller coaster since then, but mostly things are going well. He is doing fine right now and is retired and a grandpa. Best wishes on Wednesday. Let us know how things go.

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