10 years recurrent free, now 2 relapses in 6 months

5 years 9 months ago - 5 years 9 months ago #55390 by Sean T

Wow, that is hopeful. That could be good news for sibelsue's father and many others, including myself. I'm coming up on my two year mark in August. I hope I can cross that line cancer free.

To the point though, I know that I will always have a good chance of recurrence as that is the nature of our type of cancer. But this study gives me hope that maybe if it does come back I won't have to lose my bladder. I tell people the good news is that I had a very survivable form of cancer. The bad news is that it often comes back and often times the way to survive it is that patients lose their bladders. Maybe that's a little pessimistic but I find that I am never truly "free" anymore in relation to the illness I had.

sibelsue - best of luck with your father's treatments.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total - last March, 2018). As of latest cysto, As of May 4, 2023 - cancer free!

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5 years 9 months ago #55383 by sibelsue
Thank you very much for your kind words. Is it even possible after having 2 recurrences that my father will stay cancer free at least for some amount of time? we have to wait until surgery and the pathology report afterwards. i'm very scared and i love my father so much. wish all other cancer patients the best ans may god bless you all.

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5 years 9 months ago - 5 years 9 months ago #55382 by Alan
I am glad Jack had some good study info. There are several of us at the 10 year mark but, it is always in the back of our mind to where I try (and sometimes fail) to simply take a day at a time. It is good that your father kept his checkups and he is fortunate he has caring family! Pat yourself on the back.

It may even be time to step up to a national center such as MD Anderson, Sloan Kettering among many others that are on the cutting edge of things if possible. Being low grade and NOT muscle invasive are all positives. Here's hoping the last recurrence will be the last one. We are here to listen and give support where we can.

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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5 years 9 months ago #55381 by Jack R
Sibelsue,

Hopefully your father will be encouraged by the results of the following study on bladder cancer recurrence. While unwelcome, the lack of stage progression IS good news. The high likelihood of a return of cancer is the reason we can never stop watching for a relapse - he has been doing the right thing all these years.

The brightest line from the study is, "No patient [in this study] who had been tumour free for at least 2 years progressed to muscle invasion or metastases. " While not a guarantee, I find that to be very encouraging.

Links to related papers are included with the study.

www.ncbi.nlm.nih.gov/pubmed/7850325

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

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5 years 9 months ago #55378 by sibelsue
Hello everyone,

after being cancer free for almost 10 years, my father had his first relapse December 2017 and now June 2018. This situation makes me feel so helpless and horrified. We were so hopeful that the first recurrence was only a low grade tumor, but unfortunately this low grade tumor relapsed again after just 6 month. Is this a bad sign? does that mean, that the cancer will come back again and again in very short time periods? my dad is so depressed and has lost all his hope. anyone with similar experience out there??

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