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Hello Everyone:
Many people have experienced more than one rodeo with bladder cancer. Sometimes it seems like the journey will never end and you want nothing more than to get off the roller coaster. Such was the case for me back in 2010. I was first diagnosed with multiple non-muscle invasive urothelial bladder cancer tumours in the summer of 2008. I nearly made it to the 2 year mark when in July 2010 a single tumour of the same type, stage and grade was found at my cystoscopy exam. Another TURBT and more BCG treatments which were very challenging but I got ‘er done. I have been clear since 2010 but I am still very watchful of how I feel and what is going on in my body. Even though after more than 12 years out and I consider myself “cured” my urologist only uses the term of “NED” or no evidence of disease.
What I would like to speak to is the fear when one realizes the cancer has returned. Not only is it a case of “Oh no, here we go again”, you do wonder where it is all going to go and where you will end up. That was my case at the time and I was really worried that I would die. For all of you that are out there experiencing yet another go with bladder cancer, hang in, have faith and hope and don’t hesitate to reach out to others for support. When I did, people on the forum helped put my recurrence situation into perspective and that helped me deal with it.
If bladder cancer teaches us anything outside of an intimate knowledge of the anatomy of our nether regions, it is about the preciousness of life. Best Wishes to all and many thanks for creating this new section on the discussion forum.
Hi MarySue,
Thank you for sharing your story! I sometimes think about how I would react if mine came back. As you know I am a 12 year survivor and counting…and I want to keep counting! I feel very fortunate, that I am able to do all the physical stuff (swim, jog, cycle) to stay in shape. The past few years I have started to pay more attention to what I consume and I am happy to say that I am a true believe in everything in moderation.
I hope you can join us on June 23 for the Support Group Meeting.
My best,
Congtras, Maysue!! You are definitely cured in my term.
I do not know who came up with the word NED “No evidence of Disease”. I also see the term NED is used often in the south of the border. But, I don’t like the term. It is so technical.
I prefer the phase “Cured !! .. until a new tumor is found”. This is what a local independent urologist in Arizona uses in his practice.
Anyway, I am quite happy for you.
joe
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