My Doctor Says I Am Cancer-Free
Last updated: October 2022
I have not written in a bit as I was busy preparing for the 13th annual bladder cancer retreat I co-host. But now that it is over for this year, I am back to putting words of wisdom down to share.
NED or cancer-free?
I recently met a bladder cancer survivor, and during our discussions, she mentioned that she was noninvasive and having treatments, watching her diet, and exercising.
She asked about me, and I told her that I had been noninvasive and, for various reasons, opted for a radical cystectomy (RC) and ileal conduit (IC) at that stage and was doing great. I added that I was 8 years cancer-free.
She immediately said that I should never consider myself cancer-free. She said that my cancer could come back anytime and I needed to call myself NED (no evidence of disease). Any doctor who would say I am cancer free is not being honest and open with their patients.
8 years post-op and clear every time!
Wow - that hit me between the eyes, to be honest. I had an RC when my cancer was contained in my bladder only - stage one but high grade. I had lymph nodes removed as well as my lady parts, and all were found to be clear.
On September 30th, I will be 8 years post-radical cystectomy. I have had follow-up testing done at least once a year, with it being more often the first few years post-op. I have 2 more years of testing, and every test has been clear every single time - 8 years clean and green!
My glass is not half empty
I certainly am not medically trained, though I did give the pre-med school a try at Ohio State more years ago than I wish to say. I trust my doctor and medical team implicitly, and they all agree that I am cancer-free.
What bothered me the most was that someone who had met me literally minutes before and had no knowledge of my medical history was trying to tell me that my glass was half empty. I have no idea if another form of cancer will ever enter my body and rear its ugly head or if I will continue with the excellent health I have been blessed with following the surgery.
No one else in my family has ever been given a cancer diagnosis other than me. I certainly understand that someone can have an opinion that differs from mine but - do not ever take away my hope or my faith that I am cancer free.
We may not agree with everyone, and that is OK
I clearly did not "click" with this person and told her that when my doctor told me I was cancer free, I ran with it. I will never allow anyone to take the joy of that statement away from me.
When going through a disease such as cancer, we must hang on to anything that gets us to the next day, week, month, or year. I found that calling myself cancer free, as did my doctor, made such a difference in my mental and emotional well-being.
No matter where we are in this journey, that smallest ray of hope and the words "cancer-free" are all very important to hear and keep close. It does not mean that we do not stay vigilant. It just means that maybe we allow ourselves to be positive and not let the disease control us more than it has.
Support is essential with a cancer diagnosis
We need positive words and positive energy. It is essential to surround yourself with people who lift you up, support you and your decisions, and who are there for you regardless of what is going on in your life.
While everyone may not agree with me, that is okay. But as we are all in this together, we need and crave the positive support of others. Sometimes it is best to keep things to ourselves that may not matter or may cause stress or other negativity to someone else.
My doctor says I am cancer-free
I do not let cancer control me, and it is rarely on my mind these days. Every day I try to give someone hope, ease their pain or stress, and let them know I am here for them through their journey. I am thankful to everyone who has been there for me over the past 8-plus years, and I hope to give that back to others 10-fold or more.
As for me, when my doctor, the person I trusted with my life, told me I was cancer free - by golly, I ran with it and never looked back. Sending hugs and prayers to all out there going through this journey!
How long did it take for you to receive a bladder cancer diagnosis?