How my story begins: It was a few days after my 27th birthday when I heard the news that I had tested positive for HPV16, little did I know how much that diagnosis was going to transform my life. Shortly thereafter my Pap tests started to show high grade dysplasia, so my gynecologist referred me to a GYN Oncologist for follow up and surveillance. For the majority of women, our bodies clear this virus in two years, however for me I developed a persistent infection, that was constantly developing new pre-cancerous lesions on my cervix.

Between the years of 2012 and 2020, I went through 4 LEEP procedures and a cone biopsy as an attempt to remove the precancerous lesions, and hope that my body’s immune system would trigger a response to fight the HPV virus, which unfortunately it never did. These 8 years were painful, frustrating, and lonely, it was impossible to explain to people what I was going through, no one understood the term “dysplasia” and “pre-cancerous” as a confusing term for friends and family to wrap their head around.

In November 2019 I was told that unfortunately, due to the numerous procedures I’ve had in the past which left me with little remaining cervical tissue and since my high grade dysplasia had returned, my only treatment at this time was a hysterectomy to treat the high grade dysplasia.

So in January 2020, I had a hysterectomy, and up until this point, I had never heard the words “you have cancer” I was getting this massive treatment, this life changing surgery, because these pre-cancerous lesions *could* become cancer.

It turns out that was the case, when my pathology returned from my hysterectomy, they found Stage 1A1 cervical cancer, and since it was such an early stage, the surgery was the only treatment necessary at the time.

After the surgery, and in the height of the COVID outbreak, my high grade dysplasia returned and I was sent to the OR to have a laser ablation of my vagina and biopsy mapping (15-20 at a time) of my vagina, vulva, and anus. These laser ablations, which I went in for every 3 months, were my main course of treatment from 2020-2023, they tried to keep the dysplasia at bay. There was a moment in the fall of 2020 where my doctor was concerned with the aggressive nature of the dysplasia, and wanted either do a vaginectomy (removal of the top half of the vagina) or try internal brachytherapy radiation treatments. Seeing as I was less than a year from my hysterectomy, and the COVID vaccines were not yet available, I was not ready to try another surgery, so I opted for brachytherapy. It was in this moment I began to hear a phrase that follows me to this day “you aren’t a typical textbook case” which often followed with a slew of treatment options I had to choose from, which are impossible decisions to make on your own.

In January 2023, during one of these 3 month treatments (or my quarterly maintenance as I liked to call it), a cancerous lesion was found on my vaginal cuff, this marked my first cervical cancer recurrence. The treatment was clear, a partial vaginectomy.

The craziest thing happened after that surgery is that my HPV was finally testing negative. I was elated thinking that maybe, just maybe, after this major surgery removing half of my vagina, that I was out of the woods. Sadly, this was not the case again.

I began to develop pain in my left side, and a PET Scan was ordered (and denied by my insurance) so I had a CT scan in March of 2024, which showed a tumor on my rectum. It took about 3 months between scans and numerous biopsies (and waiting for insurance to approve these procedures) to confirm that yes, the tumor was indeed another cancer recurrence and the treatment this time around was a Total Pelvic Exenteration, which I had in June 2024, that surgery removed my bladder, rectum, anus, and vagina.

That is where I find myself today, this surgery has left me with a Barbie butt and both a permanent colostomy and urostomy, which I’m slowly getting the hang of. Pathology from the surgery showed a smaller than desired surgical margin and lymph node spread to some very small localized lymph nodes in an adhesion from a previous surgery. So I’m currently undergoing chemotherapy and external beam radiation through the top of 2025.

How I felt after diagnosis: When I first found out the news that I had cancer after my hysterectomy, I felt a DEEP sense of relief. “Relief you say?!” Yes, relief.

For 8 years, I had tried to explain what I was going through to family and friends, and no one understood, and with good reason. I feel like I have been the victim of a medical staging issue with cervical cancer. What I mean by that is that some other types of cancers, say breast cancer as an example, stage their non-invasive cancerous cells as “Stage 0 breast cancer” those folks are told, at the non-invasive stage, that they “have cancer.” For cervical cancer patients, during that exact same non-invasive stage, we are told it’s dysplasia, or pre-cancer, or “could turn into cancer” which I think is one of the greatest disservices we can render on patients. Because cervical cancer’s noninvasive stage is not considered cancer, I didn’t have identity, I didn’t fully understand the magnitude of what I was up against, I didn’t have community, I didn’t have resources.

Getting my cancer diagnosis was the most freeing and validating experience, I finally was able to say “I have cancer!” I was finally able to find community, I was finally able to get support and resources only available to cancer patients, I finally had an identity and cause to rally behind. When I heard the words “you have cervical cancer,” I found Cervivor.

Telling my family and friends: For the 8 years where I was told I had dysplasia or pre-cancer, explaining my condition to my family and friends was incredibly difficult.
Q: "Okay, so you have pre-cancer, that's good at least it's not cancer!"
A: "Well, it's not good, because I have persistent HPV and the virus is just going to constantly find new tissue and the pre-cancer can quickly become cancer in cases like mine"
Q: "Well I read that for many people HPV clears itself, it should clear for you too, right?"
A: "Sadly, no, my body doesn't recognize it and it doesn't know to fight it"
Q: "But you just had a procedure a few months ago, didn't they get it all?"
A: "Nope, again... the virus just finds new tissues... I can't remove or treat the underlying issue, the virus."

I found myself in circular conversations like these, because what I didn’t realize at the time is that people see cancer as very black and white, you have it or you don’t. In this case, I HAD it, but it simply wasn’t invasive yet, and the medical community, for whatever reason, refused to acknowledge it as “cancer.”

I have been very open with my diagnosis and continued treatment with anyone that cares to listen. Before my hysterectomy, I threw a going away party for my uterus, after my vaginectomy, I began blogging. In 2024, I began my work as a patient educator - telling my story and answering questions of students in the medical field.

Sharing my story, telling my family and friends, is actually what helps me most. By being open, I am surrounded constantly by a village of supporters from all facets of my life. I’ve had friends reach out to me saying they decided to get their children vaccinated against HPV because of my story, or I had friends reach out that they too had HPV and dysplasia and appreciate not feeling so alone knowing someone else who went through it and was talking about it.

I have a cancer under the veil of stigma, the act of telling others is what begins to break down that stigma and helps me, and in some cases, others, not feel so alone.

My treatment: My treatment is ongoing, I’ve basically been in active cancer fighting treatment since 2012. My treatments to date:

- 4 LEEP Procedures
- 1 Cone Biopsy
- Hysterectomy
- Brachytherapy Radiation - 8 Rounds
- Laser Ablations
- Partial Vaginectomy
- Total Pelvic Exenteration
- Chemotherapy (Pembro, Taxol & Cysplatin)
- External Beam Radiation of the Pelvis - 25 Rounds
- 2 Years of Pembro Immunotherapy post external radiation

What I did to help myself: I don’t let cancer define me, ever. In 2020, after healing from my hysterectomy, I began running and was delighted to train long enough to participate in the 2021 and 2022 NYC Marathons. You remember those 3 month maintenance procedures I told you about? My doctor was amazing and would work with me to schedule them around my training and race schedule. Staying active, by walking, running, swimming or physical training, supported my mental and physical health during my “invasive cancer era.”

In addition to running, I also began writing on my caringbridge blog. I plan to convert those stories and my many others into a book one day. https://www.caringbridge.org/visit/juliegroob

And finally, the most rewarding thing I did to help myself was begin advocacy work. I currently do this work locally through my Community Center, and the Patient Educator project (teaching medical students about the cancer patients experience). I also am a member of Cancer Votes and the American Cancer Society’s Cancer Action Network, serving as a legislative ambassador for New Jersey.

My future goals are to do speaking engagements, write a book, and to bring broader awareness and resources to the Ostomy/Continence community in the entertainment industry.

Where I am today: Today I find myself healing from my Total Pelvic Exenteration and undergoing chemotherapy. Once my chemotherapy is complete then I begin external radiation.

But beyond the healing, I find myself more motivated than ever to help pave the way for change and there is so much I want to do.

I want to see the world.
I want to change the world.
I want the medical community to change the cervical cancer staging guidelines.
I want to inspire and educate the next generation of medical professionals.
I want to all restrooms and businesses to have Ostomy/Continence friendly restrooms, and for their to be supplies and resources for people with bowel and bladder issues when we are out in the world and have an “accident.”
I want those with HPV to feel less alone and less stigmatized.
I want all children vaccinated against HPV.
I want to end cervical cancer.