The ER diagnosed my pain as sciatica instead of advanced cervical cancer

My cervical cancer story started in my 40s. I’d been a single mother to three amazing children. They’d all grown up and I had started taking better care of myself and my health. For many years, I admit, I didn’t do my annual check-ups and Pap smear. I didn’t have insurance, but I also did not make time. I didn’t understand the importance of annual exams. I didn’t know what I was up against.

Tracy at Cervivor School 2019 in Chicago

When I turned 45, I started noticing that my periods were different. I was having pain during intercourse. My lower back and the backs of my legs hurt constantly. I still didn’t have health insurance, so I didn’t go to the doctor. I thought my back hurt because I was trying to get healthier and doing more exercise. I lived with the pain for a while until I finally decided to go to the ER when the pain became worse.  

At the hospital, I was told my pain was a “sciatic nerve” to be treated with ice and heat. They didn’t do a pelvic exam or ask about my reproductive health history or anything about that part of my body. They just assumed they knew what was wrong, and they sent me home.

(I guess they didn’t know what I know now:  that low back pain and pelvic pain can be linked to problems with reproductive organs such as the cervix. That a sign of cervical cancer is pelvic pain – especially continuous pain, like the type I had.)

The pain went on for months. Then a day before my 46th birthday,  I was going to the bathroom and something came out that was not normal – it was what looked to be a piece of flesh, from inside me. I knew right then something was wrong.  The day after my 46th birthday, I went back to the ER. This time, they took me in for a CAT scan. After the scan, the ER doctor came in the room and handed me a card. He told me they saw a mass and that I needed to contact the doctor on the card ASAP. 

I left the hospital crying, confused and scared. I was able to get an appointment for the following day. That doctor found an 8 cm tumor on my cervix. She told me right then, “I am sorry to tell you but you have cervical cancer.”

I did not know what to say or think. I burst out into tears. I knew my life had changed forever. I didn’t know what HPV or cervical cancer was. I was scared I was going to die.

My next six months were all treatment, a lot of it: 28 rounds of radiation, 6 rounds of chemo and 4 rounds of internal radiation also known as brachytherapy – a procedure that involves placing radioactive material inside your body.

The good news: in August 2017, I was told I was cancer free! 

Today I want to teach everyone about HPV, cervical cancer and the other cancers that HPV can cause. I want to encourage all parents of boys and girls to make sure their kids get the HPV vaccine. I want to educate women of all ages to keep up with their annual gyn exams.

I also want to make sure that women and doctors know about the connection between lower back pain and pelvic pain to cervical cancer. While of course back pain and pelvic pain can be caused by many different reasons, it is important to at least be aware of the connection and ask questions. I wish the doctors in the ER had asked me before diagnosing me with sciatic nerve pain. I wish I knew to ask questions myself and to mention my irregular bleeding and pain during sex, even though I was at the ER for “back pain.” Cervical cancer is not something I want anyone else to go through. I am going to work hard for the rest of my life to spread the word and end the stigma.

Tracy Jimenez  is a 2-year cervical cancer survivor from Colorado who recently attended the 2019 Cervivor School, where she learned “that cancer will not stop me and that I will be a voice to educate others. I am a fighter and Cervivor School showed me no one is alone in this fight.”

Read Tracy’s full Cervivor story

Thanksgiving with a Side of Gratitude (or Not)

Thanksgiving is a big meal, and the main course of the holiday is gratitude.

Cervivor is a place to get real. So let’s put this on our holiday table: is gratitude easy or tough for you? As cancer survivors, can we confess that we sometimes have a tricky on-again off-again relationship with gratitude? If you’ve just received a diagnosis, gratitude is the last thing on your mind. It wasn’t on my mind in the chemotherapy chair.

As a survivor, I am epically, hugely, ginormously (seriously!) grateful for every day that I have. But that is mixed, still – 18 years later – with the feelings about my lost fertility and, on a bad day, frustration about my ongoing health battles with the after-effects of cancer.

The reassuring part is, I know I’m not alone. I just need to turn to Cervivor Stories and the Cervivor blog to know that others are riding with me on the emotional rollercoaster of the holiday season. I’m feeling grateful to the Cervivors who wrote so honestly about their own gratitude struggles. Thank you for keeping it real. And honest.

 “I wasn’t in a spirit for any holiday after receiving my diagnosis. Everything had gone dark. That year there was no giving thanks on Thanksgiving, no tree for Christmas. What was the sense of doing all that if I felt uncertain about my life? It took a while for me to feel ready to fight back. It was a difficult journey, but I got a second shot at life. Now, I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. There’s so much I want to do, and I don’t take anything for granted. I see life differently now. Problems that seemed huge are not so big anymore. I really don’t sweat the small stuff.”  – Patti

It’s perfectly normal after cancer to have feelings of depression and anxiety. However, once we acknowledge them, we get to CHOOSE what to do with them… Since cancer, I choose to live in a different state of mind. Cancer brings you face to face with mortality, death, and time. Once I began to digest my mortality, it changed my mindset toward every single thing.

I no longer look at the holiday season with the same weight and importance as when I was a child. I still love them, and Christmas is STILL my favorite. But I live with much more intention and purpose now. Every day is Christmas because for me it’s a state of mind that I choose.  New Years’ Eve brings hope and excitement, but I am just as excited about the next 365 days of opportunity and growth.  This shift isn’t something that just happens. For me, it takes a bit of work.” – Holly

It’s hard to feel grateful when you are nauseous, exhausted, depleted, and in pain.  That’s ok!  I would go into a cycle of feeling depressed, and then get mad at myself for not being more thankful that I would make it out of this alive. My boyfriend would constantly tell me, “You’re ‘should-ing’ on yourself again.” 

Going through cancer is hard enough, and the side effects both during and after treatment are draining (to put it mildly).  We should at least be able to give ourselves a break… People write inspirational and positive blogs to give others strength and hope, and to advocate for change, and all of that is useful and wonderful.  But sometimes it is nice to hear that people are struggling with the same crappy emotions that you are. We all have those moments of sheer frustration and anger and complete debilitating sadness over the hand we have been dealt, and that is ok too.” – Ana

This past year has been a process.  A process of grief, depression, anxiety, anger and many tears, as well as gratitude, blessings and opportunity.” – Megan

I had so much unresolved grief and unanswered questions. Cervivor help me settle some things within myself and fulfill the need I have for service to honor my mom. I am so thankful that Cervivor has once made me believe that I can go on. I can go on and help fight cervical cancer.” – Lillian

Do these reflections resonate with you?

What are you grateful for, and what are your gratitude struggles?

Please share in the comments below. We are here to listen and we are here to support you.

Tamika Felder is an 18-year cervical cancer survivor and award-winning women’s health advocate. She is the Chief Visionary at Cervivor – a nonprofit dedicated to cervical cancer advocacy and support. Named a “Cancer Rebel” by Newsweek in a 2017 cover story, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose after cancer. She is the author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.” Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. She’s also shared her story and experiences on Presidential Cancer Panels convened by the White House. An award-winning television producer, Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it.  Her story of patient-to-advocate / survivor-to-Cervivor inspires and mentors not only patients and medical communities, but anyone who has struggled with obstacles in their life.

Voices from Caregivers on Family Caregivers Month

As November comes to a close and families come together over the holidays, let’s remember the importance of the caregivers in our lives. November is National Family Caregivers Month and a great opportunity to give out appreciations to the family and friends who helped support us during our diagnosis, treatment, recovery, and today.

We are pleased that there are many caregivers who are active in our Cervivor community. Several have shared their experience on our blog.

Like Lillian, who wrote about how “taking care of my mother has made me grateful and showed me how to go on.

My great aunt took care of my mother. But when my aunt fell asleep, my mother would call for me to help her. I was young, and it was incredibly painful to take care of my mother and see her suffer. I developed a lot of inner strength during that time. I relied on the love I had for my mother to carry me through those nights. I remember one evening when she was in pain, we held hands and listened to the song ‘I Feel Like Going On.’ We listened to that song so many times that eventually we were both singing it. We both felt encouraged. I felt like I had the strength to take care of her, and she felt like she had the strength to live for her family.

Lillian lost her mother to cervical cancer. In her blog, she reflects about the impact that caring for her mother had on her life. “Many times in my life there have been things that are rough. Many times I want to give up. Sometimes I am having a bad day. But I think about that day, when I held my mother’s hand and sang, and I feel like going on.”

Like Tarrence, who so honestly and openly shared the challenges of getting from one day to the next in his blog post, What did I do as a caregiver?  I endured. 

I just kept going and tried to do things that could keep us all moving forward getting through one day at a time.  Ultimately my role as caregiver was to show up every day and do the very best I could.  That’s really all anyone can ask of you, and it’s literally all you can do…Through this experience, I learned a lot about what it means to really be with someone.   I learned that I can show up for someone in ways I’m not sure I knew I could before this.  I learned that I’m stronger than I thought I was and that my Heather is truly the strongest person I know.  I learned a lot about letting people in and being vulnerable.  For me, being a caregiver meant calling upon all I had to get through one day and onto the next.  It meant bringing the best parts of myself to the tasks we were presented with each day.” 

Like Claude, who learned about truly “being a man” when he became a caregiver to his partner Holly.

In my opinion, being a man is standing with the woman you love and help her walk down a linoleum hallway in the middle of the night and holding her hand as she struggles to stay upright.  It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for Holly to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment.”

Caregivers are a core part of our lives and our Cervivor community. Please leave a comment below if you have an awesome caregiver you want to give a shout-out to. If you have a caregiver who is willing to write about his/her experiences and perspective, we’d love feature them in an upcoming blog! We are stronger when we share our stories, and the whole community can benefit. Email us at info@cervivor.org

Is someone in your community currently helping support and care for a loved one undergoing cancer treatment? Make sure they have resources that can help, such as plugging in with the Caregiver Action Network.

48 Birthdays, 21 Post Cancer

Every year, as my birthday approaches, I go into reflection mode and start thinking about life. Life as it was. Life as it is. Life that almost wasn’t.

My life was forever altered by a diagnosis of cervical cancer at the age of 27. The days following the diagnosis were rough. Within a month of my diagnosis I landed in the hospital with shortness of breath and blood counts so low I needed my first blood transfusion. I spent exactly 30 days in the hospital, not sure if I was coming out alive. If you were around me at that time, you know how terrifying this period was, you know that my coming out of that hospital alive was nothing but a miracle (those were my pneumologist’s actual words). So here I am, celebrating #48 (or the 21st birthday I get to celebrate post diagnosis). 

Survival… Life after cancer… This is something that doesn’t happen to many of the women diagnosed with cervical cancer. Within the last year my Cervivor community lost 4 beautiful women in the prime of their lives as a consequence of cervical cancer. In the USA, where approximately 13,000 women are diagnosed with cancer in the last year, 4,200 women will die due to this cancer. Some people may look at these numbers and think they are small (I’ve been told that before); well let me tell you this: These numbers matter. These numbers matter to the women diagnosed with cancer, hoping they are on the right side of this statistics. These numbers matter to the families of the women who die each year, to the young children that will grow up without their mom… These numbers matter to those of us who survive this disease, because we know how close we cut it, how nerve wracking every follow up is, because the cancer may be gone, but the damage it did to our bodies is permanent (think of infertility, ostomies, lymphedema, neuropathy, bladder problems, just to mention a few). Most importantly, these numbers matter because we can change them. We can change the statistics because we have the means to prevent cervical cancer: The HPV vaccination is the #1 way to prevent cervical cancer. Plain and simple. A vaccine can prevent cervical cancer. I don’t think it can be any easier than that. 

We can literally protect our next generations from cancer-causing HPV strains by simply vaccinating our children (as early as 9yrs. old). It is an important vaccine because it would protect them from the high risk strains that are linked to cervical cancer (and cancer of the vulva, vagina, anus, penis, oropharyngeal (back of the throat). Cervical cancer will be like polio; gone, a thing of the past. I would love to see cervical cancer disappear and I believe that is possible with this vaccine. 

So each year, around this time, that sense of duty to those who did not make it demands that I tell you to vaccinate your children. That 27 yr. old Maria, terrified at hearing the news that would change her life forever demands that I tell you to vaccinate your children. It is imperative that you do because this is the one cancer we can basically eradicate. Every now and then I see these prayer chains pop up in social media asking you to share a prayer to find a cure for cancer; well, we now have a vaccination that can prevent a cancer and that is an answered prayer.

Celebrate my 48th birthday with me by scheduling your well-woman exam and vaccinating your children against HPV. Maria Franklin is a 20-year cervical cancer survivor who is also a part of Cervivor Leadership, and heads our Latina advocacy efforts. She was awarded our 2019 Cervivor Champion Award. Watch her story here.

A Call for Action & Education During National Hispanic Heritage Month

Did you know that Hispanic/Latina women have the highest incidence rate of cervical cancer in the U.S.? They undergo significantly fewer Pap tests than non-Hispanic white and black women and are less likely than women of other races/ethnicities to return for recommended follow-up after an abnormal Pap test.

These statistics from the American Cancer Society and Centers from Disease Control (CDC) are instructive to us at Cervivor to guide some of our educational efforts.

National Hispanic Heritage Month (celebrated Sept. 15 – Oct. 15 to correspond with the independence of many countries in Central America) honors Hispanic history, culture and contributions. Communities across the country mark the month with festivals and educational activities.

Educational activities? That sounds right up our alley as Cervivors!

Festivals? Preventing cervical cancer and saving lives feels like something to celebrate to me!

We want to halt cervical cancer in its tracks, in America and around the world. To do that most effectively, we need to be aware of the disparities in cervical cancer incidence and mortality among populations of women.

For example, in the U.S., black women (followed by Hispanic women) have the highest death rate from cervical cancer. Mortality (death) rates of cervical cancer among Hispanic women are 50 percent higher than those of non-Hispanic women, and incidence rates among Hispanics are twice the rates of non-Hispanic women. Different populations bear different burdens of this disease, for different reasons.
“I was diagnosed with Cervical Cancer stage IIB in 2008. I had not visited my GYN or had a Pap test for over 3 years. My mission now is to share my story to every woman especially Latinas, who are the most affected by this disease, and convey the message that my journey does not have to be theirs”. 
Patti Murillo-Casa

Data from the American Cancer Society show that Hispanic women are less likely to get regular Pap tests. Hispanic and Latino Americans amount to an estimated 17.8% of the total U.S. population, making up the largest ethnic minority. This makes it a focus for our educational messages about cervical cancer prevention with Pap testing, HPV testing and HPV vaccination. This makes it a focus for our advocacy, education and personal Cervivor stories. 

What can we do as Cervivors?

  • Familiarize yourself with Spanish-language educational resources and share them as part of your education and advocacy work. There is a downloadable Spanish-language “foto-novela” from the American Sexual Health Association, for example, fact sheets from the National Cancer Institute and cervical cancer screening patient information sheets from the American College of Obstetricians & Gynecologists. (These and many more Spanish language resources are available here.)


Join Cervivor Español: Private Facebook Group For Latina Cervical Cancer Patients & Survivors

  • Support local and national cancer control and prevention programs and policies aimed at decreasing disparities in cervical cancer mortality. For example: health reform efforts to reduce discriminatory practices against cancer patients and survivors (amen to that!); policies to include no-cost cervical cancer screenings and HPV vaccination as a mandated part of insurance coverage (hallelujah!), initiatives to expand HVP vaccination (yes!). 
  • Support the National Breast and Cervical Cancer Early Detection Program (NBCCEDP): The CDC’s NBCCEDP provides uninsured and underinsured women access to no-cost screening and diagnostic services, as well as a pathway to cancer treatment. Support federal and state funding for this program. Advocate for more funding to expand the reach of this lifesaving program. 
  • Share your story. We’d love to have more representation from Latina Cervivors on our site. Submit your story here and come to one of our Cervivor Schools to learn more about bringing education and advocacy to your community. 

Cervical cancer is preventable. Cervical cancer is colorblind. So are we at Cervivor. We are all bonded by this disease. We are all motivated to ensure that no one else has to go through what we’ve gone through. Let’s be aware of the racial disparities in cervical cancer, address them head on, and put our support, stories and voices behind programs that can change cervical cancer statistics and save lives. 

Let’s celebrate National Hispanic Heritage Month by recognizing the power and strength of the Latino community and to doing what we can to expand education about cervical cancer screening and prevention.