I’ve been on such an emotional roller-coaster the last several months since discovering I have Lynch Syndrome, and these last several days have been no exception.

After undergoing bladder surgery (TURBT, or transurethral resection of a bladder tumor) last week for a mass presumed to be cancer (because most bladder tumors are, apparently) and getting a round of chemo washed into my bladder at the same time to help prevent recurrence, I opened my pathology results a day later to read this:

“Urothelial papilloma with no evidence of malignancy.”

What? WHAT?

I don’t have cancer? Am I reading that right? It says I don’t have cancer. I read it again carefully, word-for-word, like I was perhaps translating from another language. “… no ev-i-dence of ma-lig-nan-cy.” That means benign, right? (Questioning my own cognition, at that point, in confusion.)

I felt like I was in an episode of the Twilight Zone because for the last two months I had gradually come to accept that I have cancer. It was a slow process, a slow acceptance. But I got there: an acquiescence about my first actual Lynch cancer after procedures and screenings showed pre-cancer in my uterus, a pre-cancerous polyp in my colon and some things to keep an eye on in my stomach.

My urologist oncologist bluntly said to me in June, viewing my (bladder) cystoscopy image on her computer screen, “That looks like cancer to me.”

I waited a few minutes until she left and cried with the medical assistant. The “C  Word,” as it used to be called when I was young and cancer was taboo to talk about openly, is scary to hear no matter what the circumstance.

But post-surgery and with the surprising pathology report in front of me on-screen, I immediately set myself to Googling: “Can a bladder tumor be benign?” “Can a bladder tumor be non-cancerous?” “Benign urothelial papilloma.” I read research for two hours, waiting for my oncologist to call and explain this report to me.

I read this:
Urothelial Papilloma of the Urinary Bladder: A Case Report and Literature Review of a Rare Entity (Abdel Gawad A M, Rabie A, Abdelwahed M S, et al. (February 09, 2022)) (https://pubmed.ncbi.nlm.nih.gov/35340489/)

I read this:
“Urothelial papilloma is an uncommon benign exophytic neoplasm … [It] has a low incidence, representing 1%-4% of bladder tumors.” (Medscape article by Antonio Lopez-Beltran, MD, PhD, professor of anatomic pathology, Cordoba University School of Medicine, Spain. June 7, 2019.) (https://emedicine.medscape.com/article/1627756)

And I read this:
 “While there are several types of benign masses that can grow in the bladder, these are uncommon and account for fewer than 1% of bladder masses,” according to Khurshid Guru, MD, chair of Roswell Park’s Department of Urology (Buffalo, New York). (https://www.roswellpark.org/cancertalk/202103/mass-bladder-always-cancer)

I kept reading the word “rare” and “uncommon.” Repeatedly.

Is it possible that after all the hard things I have gone through that felt uncommon and lonely – including many miscarriages, getting sexually assaulted at age 51 by a serial sexual predator, and finding out at age 55 I had a genetic syndrome I had never heard of – that I have experienced something uncommon that is actually a major win for me?

That seems to be the case.

And it feels wonderful. Really wonderful!

I seem to be a one-percenter, but in a politically correct and awesome way. I feel rare and uncommon, but finally in a good way. And at least right now, I don’t have cancer.

So I will take this win and savor it.

My oncologist called me the next morning, and while she didn’t seem as excited as I was, she confirmed that I could call the tumor benign and acknowledged the pathologist was calling it benign. She said, however, because of my Lynch diagnosis and my dad’s history of urinary-system cancer, she wouldn’t be treating it that way and would be keeping me under surveillance.

OK, well fine.

But I’m not letting her take away my thunder. For I Am the Storm, again.

Hear me roar as I finish this first season of taking the full power of my Lynch diagnosis and keeping myself as healthy as I can with the knowledge I have about my own body. One more test – a mammogram – then I’m done with all my first year’s baseline tests and procedures.

I am cancer-free.

***

Lynch Syndrome is a genetic condition that affects about 1 in 279 people and puts those of us who have it at higher risk for an assortment of cancers. I learned I have Lynch Syndrome through genetic counseling/testing due to an extensive family history of cancer.

Lynch Syndrome is caused by a mutation in one of the mismatch repair genes (in my case, MSH6), causing a decreased ability for the body to fix errors that happen while copying DNA as the body goes about its business.

Knowing I have Lynch Syndrome allows me to get more frequent screenings and procedures to hopefully catch anything that may come up in the pre-cancer or early-cancer stages.

Knowledge IS power.

Art: By Dianne Hammer

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Wishing you love, peace and sparks of joy wherever you are on your healing journey. It is my wish with all that I do and all that I write about for you to know that you are not alone. 

Warmly,

Dianne