-
Recurrence after RC beyond 3 years is very rare
So I had my three year follow up with my surgeon at University of Colorado Hospital on Tuesday.
We were talking about his staff and some issues I had with getting my tests scheduled this year. I was telling him that it’s really important that his folks in the office understand how important some things are to cancer patients or those who used to be cancer patients. Things like, we can’t celebrate a milestone of being cancer free for x number of years if people can’t get our tests scheduled….
Anyway, he completely understood. Is going to talk to his folks about it again and gave me the card of one of the staff who always goes above and beyond. Also said next year they will send the fax of the orders to me in addition to my local hospital so I will both know the hospital has them (this year the cytology order got lost in the faxes somewhere) and I will have a copy to bring with me just in case.
During the conversation, I mentioned that someone on the site had mets after 5 years of being cancer free. He said it is really quite rare after an RC and it will typically come back within 2 or 3 years. So…I don’t have the statistics on this one but it did make me feel better. I don’t need to be nervous each year for my tests anymore and should just consider them keeping an eye on things.
If it happens to you, it doesn’t really matter how “rare” it is, but until it does, it can save some consternation and concern to not be expecting it to be lurking in the wings somewhere…
Oh…by the way. I already knew the results of my CT and cytology because I get them sent to me at the same time they are sent to my doctor. I just think it is still good to check in with him every year. They did have me do a quick chest xray, which was fine…
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.6 Replies-
Mike, great to read your good news! It can get very easy for the good news to become common place. I have learned over the last twenty years to try to remind myself after getting that type of news ” That I just won the lottery again ” Celebrate!
Duke -
Hi Mike hard to relize it has already been three years for you, and still you are getting good news! yeaaa.
I understand the follow up stuff your talking about. My husband had large b cell non hodgings lymphoma . He has been cancer free for 3 years so they moved his bloodwork to every six months , and checkups to a year. He just had the bloodwork done but the cancer center had not recieved the results from our local hospital yet. BUT we recieved the bill for the bloodwork ! Go figure. I made several calls and finally got the results and everything was ok. Anddd life goes on. Hopefully for a very long time for you and everyone else on this site ! Rocky -
CONGRATS on another milestone, Mike!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
You have the right attitude Mike. There is no need for extra worry because if it’s going to happen, it’s going to happen and worry ahead of time is a pure waste. Sure we are always “concerned” a little but that, I think is normal.
BTW…I am one of those “you never met anyone who” people. Example..I had a new car with 30K mile warranty. At 30,100.00 miles the engine blew up. That is but one of many stories. So rare is not a big surprise to me.
Wishing you many years of ALL CLEAR.
Blessings….Jean
Great news for you, Mike. Glad to hear it. And interesting comment from your doctor. Thank you for sharing.
Anita
Anita
Forum Moderator
Caregiver
Mike, Thanks for this post. I reach a very high compression in the days prior to getting results. Now I’m in my 3rd year so I’ll try to relax into it (if possible).
Congratulations on moving beyond this important milestone.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010Sign In to reply.
