Have you recently been diagnosed with cervical cancer? Or are you a 3 year survivor, a 5 year survivor, a 20 year survivor?
Have you always wondered how to talk about your experience in a way that will help prevent others from having to go through what you went through?
Would you like to get more involved in educating your local community about prevention?
Whatever your story is, if you want to advocate to get rid of this disease once and for all...
CERVIVOR is for you!
Help end cervical cancer!
I was one of those All-American kids. I did life the way I was supposed to. I graduated from high school, graduated from college in four years, and obtained a Master’s Degree and a great job by the time I was 23 years old. Life was good. I had an amazing family, an amazing church family, and an even more amazing group of friends.
That all changed when I was about 30 years old. I was happily married, solid in my career, and thinking about a baby when I started having some health issues. First it was horrible vertigo, then it was abnormal bleeding, and finally a hemorrhage that landed me in the emergency room at a local hospital. With my husband by my side, they asked me some very tough and private questions. The doctor on-call announced they needed to do a biopsy to find the root of the bleeding. I was horrified… the whole night seemed like a bad dream.
Fast forward three days, and I am sitting in an office of an OB/GYN I’ve never met. He said the words I would have never expected, “You have cervical cancer.” I was astounded. I was 30 old and I had cancer. How could this be? I had gone for a pap smear like clockwork, every year since I was 16 years old. I followed the rules. They had to be mistaken. But they weren’t. I was told it was Adenocarcinoma, that it was stage 1B/2A, and that I was lucky they found it when they did. Later, I learned that is was 7 cm tumor that by the grace of God had stayed contained to my cervix.
Much of that day seemed like an out of body experience. I was hearing words and terms I had never been a part of my vocabulary. Words like, HPV, clear margins, and metastasize. I was told I would no longer have the chance to have children and that I would be admitted to the hospital and going upstairs to a room they had ready for me. There were nurses, IVs, CT Scans and X-Rays awaiting my arrival. I felt like I had been punched in the gut. I looked at my husband of two years in horror… No Children? Chemo? Radiation? Hair Loss? It was almost too much.
My cancer journey began on a Thursday afternoon on August 25, 2005. I decided that day that I would not let cancer become my identity. I would battle through 6 rounds of chemotherapy, 25 rounds of external beam radiation, and 5 rounds of brachytherapy, and then I would proceed with life. If only it could be that easy. My cancer battle lasted 4 months, but my journey will never end.
After I finished treatment and returned to work, I began to realize I was not ok. I searched for support groups, other survivors, someone, anyone, who could understand what was happening inside of me. With no luck, I then decided a therapist was the best option. That was a temporary fix to a bigger issue of what it means to survive cancer.
Three years later, I did find what I was looking for. A group of women who knew how it felt when you were told you couldn’t have kids, who understood the shame you felt about the cause of your cancer, and Good Lord, those crazy side effects of radiation induced menopause. When I found a sisterhood of women, I felt like I started living again. I took control of my health, took up running, and my childhood love for soccer.
Today, 10 years later, with some literal and figurative battle scars, I proudly call myself a survivor. Cancer taught me to embrace life, to learn the meaning of balance, and to not be afraid to share my story. It’s hard to believe these words, but my cancer battle made me a better woman.
There’s a popular athletic apparel out there called Under Armour. It’s stylish, super comfy, and great for exercising!
My under armor is not stylish at all, not too comfortable, and I don’t wear it for exercising. I wear it to protect against infections caused by lymphedema.
When I was first diagnosed with cervical cancer, the goal was to survive. No one mentioned lymphedema. While going through chemo and radiation, the goal was to make sure all cancer was gone. No one mentioned lymphedema. During the first couple of years after treatment, the goal was to make sure HPV and cancer did not reoccur. No one mentioned lymphedema.
Then my leg began to swell and I started getting cellulitis infections … the doctors mentioned lymphedema.
It amazes me how little most of us know about our own bodies. When I was trying to get pregnant at first, I read many books and was fascinated with how intricately it all really did happen. I remember thinking, “This is amazing, how did I not know all these details until now?”
When I was first diagnosed with HPV and realized how common it is; I remember thinking, “How can this virus attack so many of our bodies, and I’m just learning about it?” When my leg began to swell and I was hospitalized with infections; I learned about the amazing lymph system. I remember thinking, “I’ve heard of lymph nodes, but a whole system? Who knew!” Perhaps I should have gone to medical school!
The lymph system is an amazing part of our bodies! Imagine delicate, little vessels running all over your body connected by lymph nodes – congregated (mainly) in the neck, under the arms, in the groin, and abdomen. Some are close to the surface of your skin, others are deep inside. These vessels carry a protein-rich fluid called lymph which is passed through the lymph nodes to rid your body of toxins, waste, and other unwanted materials. It’s a pretty important system!
My cancer treatment included a radical hysterectomy along with the removal of 20 lymph nodes in my lower abdomen. Even though our bodies contain hundreds of lymph nodes, a handful of missing ones can alter the effectiveness of the whole system. It simply doesn’t perform as well because the lymph fluid doesn’t get pumped as efficiently in order to rid the body of toxins.
About two years after I finished my cancer treatments, I noticed my left ankle and thigh were a little swollen. Not much, but enough for me to notice a difference and become paranoid that something was wrong. This is when I first heard about lymphedema. My doctor referred me to a physical therapist who specializes in lymphedema, and she taught me some self massage I could do to stimulate my lymph system and keep it moving. It helped with the swelling, and soon I stopped the self massage.
About a year later, I had my first cellulitis infection which hospitalized me for four days. Cellulitis can be a common occurrence with lymphedema. The lymph system gets backed up, which means the toxins aren’t eliminated efficiently, and bacteria can grow causing infection. Over the last five years, I’ve had six cellulitis infections; all of which have hospitalized me from 2-7 days. Once released from the hospital, I usually have to go and get daily antibiotic infusions for about two weeks. Each infection damages the lymph system even (a little bit) more which makes me more prone to the infections. It’s a vicious cycle, and it isn’t fun. However, I’ve learned to listen to my body and know when an infection is coming so that I can act quickly to minimize the complications.
Lymphedema is a condition that doesn’t go away. I will always have it. However, there are things I do everyday to manage it in order to keep swelling down, avoid infections, and ultimately keep the lymph fluid moving throughout my body. This is where my Under Armour comes in handy. Everyday from the time I wake until I go to bed, I wear prescription compression hose that go from my toes to the top of my thigh on my left leg. I also wear compression shorts that go from mid-thigh up to just under my bra. This compression provides gentle pressure which helps to keep the lymph fluid moving. It interferes a bit with my wardrobe, but I’ve learned to fashionably adapt. On the bright side, the compression garments give me somewhat of a slimmer and smoother look. In addition, every night at bedtime I spend about 20 minutes doing manual lymph drainage massage. Lastly, once a month, I get a lymph drainage massage from a therapeutic massage specialist.
No one mentioned lymphedema when I was first diagnosed with cancer. I’m not saying they should have; the focus was surviving cancer. Plus, lymphedema doesn’t happen to all patients who have had lymph nodes removed. Even though my case is mild, lymphedema has become one of the main “after-effects” of cervical cancer that I deal with on a daily basis. It is cumbersome (literally) and overwhelming at times, but I know it’s what I need to do to stay healthy. And, I suppose, it’s a small price to pay to be cancer free.
If you have signs of lymphedema, please contact your doctor in order to get the best care possible!
- Heather Banks
I always thought I would die young, but not because of cancer.
My mother died from early-onset Alzheimer’s when she was 53. I was 17. For the entirety of my 20s, I believed I had to accomplish everything I wanted to in life before I turned 40. Then if I started to lose it, I’d at least be somebody regardless of remembering being somebody.
The Year of 35 was going to be my year of triumph, but a couple of months before that magical age (January 2014), I went in for an exam. I hadn’t gotten one in far too long and, because of my looming age, my soon to be husband and I were thinking more seriously about trying to have a baby. We were still on the fence about it, but figured we should make sure I was OK first. I’d never had issues in the past so I wasn’t worried.
Then I got THE CALL. You know the call. It had been a week since my appointment and as soon as I saw that number, I knew. I had abnormal cells and needed a colposcopy. Somehow I knew it was cancer even though I wouldn’t find out for months. Something had felt off for awhile and I was too scared to go to the doctor. Effing stupid is what it was, but I didn’t have health insurance.
I immediately signed up for some through the Affordable Care Act. The insurance wouldn’t kick in until March, on my birthday, but I had things to keep me busy to avoid obsessing about it.
The day before my 35th birthday, both of my books became Amazon best sellers. A month later, I was married. That seemed like a good sign for the rest of the year. I almost forgot that I probably had cancer. I had my colposcopy in April, then my first LEEP in June. That’s when sh*t got real.
They hadn’t gotten everything and they’d have to do another LEEP.
The doc didn’t tell me I had cancer at that point, at least I don’t remember him telling me. They hadn’t cut into my cervix far enough and there were cells in the deep tissue sample he took. I didn’t have children so it seemed to complicate things. The medical community all but shamed me for not having children yet. If I’d spawned mini-me’s it would make my treatment options less complicated.
“If you were done having children, he would just take your cervix,” the nurse said. “The fact that you haven’t had kids changes things.”
I wondered how much of my cervix would be left after a second LEEP.
I hadn’t thought about marriage or children until I met my husband. I never planned to get married or have a family because of the aforementioned Alzheimer’s fear. I couldn’t put someone through that. Still, I’d always been fearless, or at least emulated a lack of fear.
If someone told me I couldn’t do something, I’d do everything in my power to prove them wrong.
“Oh, you think I can’t? I’ll show you,” I’d say with enough determination to move a mountain. “Oh, I have cancer and can’t have kids? I’ll show you …”
2014 seemed to take forever. I had my second LEEP and countless medical appointments during the second half of the year. After my second LEEP I was so sure I was OK that being referred to an oncologist didn’t trigger panic.
“Sonja you have Stage 1,” the oncologist said. I stared at him. “What that means is we’ll have to do a radical hysterectomy. We won’t take your ovaries if they still look good. We’ll also take your nodes to make sure it hasn’t traveled anywhere else.”
At least that’s probably what he said. All I could think about was how I’d tell my still newlywed husband I couldn’t give him children. Finally, I said, “Are you sure? Are you really sure it’s cancer?”
“Have you heard nothing I just said?” he asked. “I want to get you into surgery next week.”
“No, no. That’s not convenient. I just started a new job this week. I can’t go in and tell them I have to be out for month. Can we wait until February?”
At this point, the oncologist used his dad voice on me. “SONJA, we have to go in now so it doesn’t spread.”
I just sat there. I didn’t like his tone and I was going to get a second opinion from a hot woman doctor who knew something about vaginas.
Turns out, after calling around, everyone knew my oncologist, including my aunt (“That’s a name drop.”), and said he was the best in town. The week before Thanksgiving, he operated on me and saved my life. He retired before Christmas.
As far as I know, I won’t die young. The hysterectomy took care of it. I didn’t and don’t need further treatment. I was lucky. Well, as lucky as one can be in this situation.
I always thought my one cause would be Alzheimer’s, that I would be the voice for those who couldn’t speak for themselves, but it never felt quite right. Turns out, I needed to be a voice for myself.
And now, because of my involuntary membership in the cervical cancer survivors club, I will get to finally meet so many of you going through this at Cervivor School next month in San Diego. I know it will be intense, but it’s necessary.
If you haven’t, send a big THANK YOU to Tamika for all the work that she does for this cause. We wouldn’t be a community without her.
You may have heard my story before. The quick version – I was diagnosed at age 25, had a radical hysterectomy shortly after my diagnosis, and was left infertile and depressed, certain that no one would ever marry me.
But my story is just one of many cervical cancer stories.
There’s Christine. She was diagnosed at 30, also had a radical hysterectomy with chemo and radiation, and ended up without the ability to have children with her husband.
Heather. She had two young kids when she was diagnosed, a happy life as a 5th grade teacher, and a rough treatment schedule that left her exhausted and worried about leaving her young family without a mom.
Kelly. She was a gymnast, a newlywed, a woman passionate about following her dreams, and a woman who died from cervical cancer at the age of 33.
And there are many more stories…some of women who have gone on to have wonderful full lives and some of women who died way too young from a disease that we can now prevent.
I was lucky that my cancer was found early. And women today are even luckier because we have new and improved tools to help protect us from this disease!
So how can you protect yourself? Here are our 5 top tips for preventing cervical cancer:
Don’t let MY story be YOUR story. Don’t let Christine’s story be your best friend or sister or mom’s story. Don’t let Heather’s story be the story of your neighbor or cousin or daughter. And don’t let Kelly’s story be any woman’s story ever again.
Get vaccinated. Get tested. And if needed, get treated. Help us to eradicate cervical cancer so no other woman has to suffer or die from this preventable disease.
“In September 2012, I had a pap smear as part of my routine maternity care during my pregnancy with my third child. The pap smear came back abnormal, so I was referred to a regular OB/GYN for a colposcopy, a test that uses a vinegar solution to highlight possible abnormalities. There was also the possibility they would perform a biopsy.
It took about two weeks for me to get the results, and when the doctor called, she sounded like she was giving me the worst news of my life (little did I know). I was told that the biopsies had come back showing intermediate to high grade dysplasia and that I would need to come back in my third trimester for another colposcopy. I was also advised to consult with an oncologist. Treatment options were not really available during pregnancy (this is usually when they turn to LEEP or a cone biopsy), but it would be good to have options lined up after I gave birth.
When I got off the phone, I didn’t know what to think. About 10 years earlier, LEEP was recommended after I had an abnormal pap smear and a colposcopy, but I got a second opinion and was told these things sometimes go away on their own. I decided to wait and see, and every pap smear since was normal. This was my first abnormal PAP in 10 years.
On May 23rd, 2013, I give birth to a healthy, happy baby boy. Six weeks later, I returned to my midwife for a postpartum visit. Knowing I hadn’t done any follow up on the abnormal cells, my midwife did another pap smear, and felt what she described as a mass about 1 cm large. This time, I made an appointment to see an oncologist.
During my examination with the oncologist, I was told the mass didn’t look like cancer, and was likely just a fibroid. To be on the safe side, they took a biopsy. After the exam, the oncologist went over tests and lab results with me to explain what they may or may not mean. He reviewed the statistics, repeating what I had already read:
My husband and I left that appointment feeling pretty good; we had dodged a bullet. A week later I received a phone call asking me to come back in as my test results were abnormal. Once I meet with the doctor, he gave me the news: It’s cancer.
After my diagnosis, I underwent anesthesia for a planned cold knife cone biopsy. Once I was under, the determined that my tumor was too large to be removed that way, and I would require a radical hysterectomy.
When my son was 6 months old, I had the surgery that removed my uterus, cervix, part of my vagina, and the surrounding tissue. The pathology report from my surgery came back with 2 out of 3 high risk factors for recurrence, and my doctor recommended chemotherapy and radiation treatment. I had 4 chemotherapy treatments, 25 external radiation treatments, and 2 internal radiation treatments.
I’m still trying to figure out how having cervical cancer and being a cancer survivor fits into my life. Having cancer came as a shock to me. I have always been a very healthy person. I have 3 wonderful children, and I was planning on having more. Cancer took that choice away from me. Cancer brought me to some very low places. It’s also brought me to some unexpected highs. I have met amazing people. I have been loved and supported by family members and friends. My strength has been tested and I survived.
Most people I talk with know next to nothing about cervical cancer. I didn’t before I got it. I want women to understand their bodies; to know what these exams and tests mean. I want women to know that there is a vaccine that can prevent cervical cancer. My cancer was caused by HPV, and there is a vaccine for HPV. I plan on vaccinating all three of my children (my daughter and two sons) when they are old enough.
I haven’t quite come to grips with being a cancer survivor yet. I still worry about recurrence, and I still have bad days where I cry about what I’ve lost. But, I do take pride in being a survivor. I know my own strength. And I know that if you are facing cervical cancer, you are not alone. There is an amazing network of women out there who care deeply about helping. I hope by adding my voice, and telling my story, I can make a difference.” – Juliet Glaser
If you would like to read more about Juliet’s fight with cervical cancer, check out her blog: ButIAteSoMuchKale.wordpress.com
“I am Erica Frazier Stum, a mother, wife, and teacher who is in a continued battle with cervical cancer.
In October 2012, I was walking through the booths at a local festival when my life was changed forever. That is where I received a call from my OB-GYN giving me the results of a biopsy: I had cervical cancer.
I was told that I needed to see a gynecological oncologist as soon as possible. When I asked my OB-GYN what the typical treatment plan was for cervical cancer I was told a hysterectomy – even at the age of 27!
I found a gynecological oncologist who subsequently identified my cancer as stage 1B2. This specialist said I was a candidate for a special procedure which could preserve fertility. It was decided to do a trachelectomy, a 16 hour procedure to remove the cervix and surrounding lymph nodes. This approach was selected over a hysterectomy in an effort to preserve fertility; the panel of oncologists reviewed my labs after surgery and decided no further treatment was needed. During this diagnosis and treatment I had to take medical leave from my teaching position. At the end of treatment, I received a phone call that I was cancer free. However, this story doesn’t end here.
I went on living life; I was engaged to be married in June 2014, and was loving life. However, in April 2014, I was diagnosed with a recurrence; my cancer had progressed significantly. This time, I had lymph nodes involved as well as multiple tumors, including one which completely blocked off my right kidney. With this recurrence surgery wasn’t an option; the cancer had progressed too far.
First I had a port placed for treatment and a nephrostomy tube to help with the blocked kidney. I went through six rounds of carbo/taxol/avastin chemotherapy and then six weeks of external pelvic radiation and with an additional chemotherapy, cistplatin.
During this time, myself and JR went ahead with our wedding. Cancer doesn’t wait for anyone. We were married on June 28th and I had my second round of chemo just two days after the wedding. This treatment took a toll on my body as I had to take a six month medical leave yet again. This treatment also took something else away, the opportunity to expand my family. At the age of 28, these treatments led to the start of menopause and loss of fertility.
Relief came in March 2015 when I had a clear PET scan that left me feeling like I could move forward and leave the daily thoughts of cancer behind once and for all.
Unfortunately, 3 months later, during a routine PET scan in May 2015, a new cancerous lymph node was found. I am now facing another recurrence of cervical cancer, which is scary and frustrating.
I am getting ready to begin treatment for my third occurrence of cervical cancer. On my 30th birthday, the treatment will be an extensive surgical process. What is frustrating is that this surgery might not cure the cancer. I might face more radiation and/or chemo after this surgery. There is a fear that the cancer could go away and come back again. It seems like a never ending cycle.
My son is now 6 years old and has had to cope with his mother having cancer for half of his life. He has lots of questions. Some days he wouldn’t want to share my drink because he didn’t want to catch cancer.
Now, he honestly knows more about cancer than anyone should, and certainly more than any of us did when I started this process. We all learned a lot going through this experience, and I want to share what I know in order to help other women with a similar diagnosis. That is why I started a blog to chronicle my journey.
When someone asked me what one message I would give to women, I said: Women need to listen to their bodies and always be strong. Don’t miss your OB-GYN wellness check-ups! If cancer taught me anything, it’s that you never know what you can endure until you don’t have any other choice; be strong, persistent, and don’t give up.
Today, I am still working towards the goal of being “cancer-free.” With strength and persistence, I won’t give up.”
Did you know that Black women have a higher incidence of cervical cancer and HPV? The road to recovery can be rocky, as Alegra found out. Read her story here to find out how she came to embrace survivorhood. – Tamika
“At age 36 I was diagnosed with stage 1 cervical cancer. For treatment I underwent surgery and embarked on a slow and lengthy road to recovery.
The life-saving surgery eradicated the cancer but the radical procedure also launched me into full menopause at the age of 36. The relationships with my husband and daughter were altered immediately; I was no longer the same.
Learning about the diagnosis crushed me. The idea that I may not have a chance to see my teenage daughter graduate from high school and losing the essence of a woman was shocking. A dark cloud covered my family and took over our existence; for many years I felt paralyzed and unable to understand what was going on. Unaware of what to do and convinced that I could push through on my own, I chose silence and renunciation.
What I want other women to know is that recuperating from the physical aspects of the surgery wasn’t as dramatic as the emotional, psychological, and spiritual uphill battle. Outwardly all seemed the same but the inward devastation turned my world upside down. Nothing prepared our family for the immediate and long lasting effects of a radical hysterectomy.
Today I have a sense of empowerment to tell my story, recognize that I’ve been in denial for many years and I can acknowledge that I am a cervical cancer survivor! I am armed with the determination and the desire to assist other women, family members, and caregivers battle the personal issues related to cervical cancer.”
Cervical cancer can affect women of all ages, cultures, and lifestyles. Contrary to stigma, there is no one type of woman who is susceptible to this disease. Here is Carolann’s story of diagnosis and survival; read on for a reminder that it can happen to anyone. - Tamika, cervivor.org
“The Circus came to my town on Tuesday, July 15th 2014. It arrived quietly and, at first, without fanfare. It camped right in my yard, looking like it planned to stay for a while. It wasn’t your typical circus; not the kind you’d ever want to run away to join. It was the Cervical Cancer Circus, and as I found out at 8:15 a.m. on that Tuesday, I was the main attraction.
Anyone who has been diagnosed with cancer will understand the crazy, surreal circus feeling I experienced in those first days after hearing the “C” word: the feeling of being in a ring with spotlights shining on you – with medical professionals, family and friends paying inordinate attention to every movement you make and every word you say.
Then there is the emotional roller-coaster ride or more accurately, the feeling of being on a Tilt-a-Whirl that never seems to stop. Morning and night, all day long, you are up or down, swinging violently from mood to mood. I went from feeling like I had to live for the moment and had to create thousands of special moments to feeling that I needed to slow down and savor every second. My life was no longer an infinite string of days like I believed it would be; it was now finite and confined to the circus ring.
The circus wasn’t much fun for my husband and two college-aged boys. They, along with my dad, siblings, and friends gathered around to support me. This crowd of supporters were the spectators watching in fear as terrifying feats were performed in the ring; they were the people gathered around the perimeter fence, feeling dizzy as they watched me being tossed around but helpless to shut the ride down or pull me off.
Unfortunately, cervical cancer is not rare and this is an experience that too many women and their families will endure.
There are tens of thousands of women in the U.S. undergoing treatment today and more being diagnosed daily. According to the National Cancer Institute over 12,000 women were diagnosed with cervical cancer in 2013. More than 4000 women died from the disease in the same year. I, like most of them, received the diagnosis in a state of surprise, thinking that cervical cancer was a condition that happened to a different kind of woman.
The vast majority of cervical cancers, over 90% according to the CDC, are caused by HPV (Human Papillomavirus). As a woman nearing 50 who has been married for 25 years to the man I started dating in high school, I wrongly assumed this STD was something I didn’t have to be concerned with. Promiscuous is not a word that anyone would use to describe me!
I have only had two intimate relationships in my life, and I am active in my church and community: I am involved in church leadership, art education advocacy, and I hold multiple master’s degrees. STD’s and cervical cancer, in my mind, happened to women with numerous partners and many pregnancies; women who smoked, were obese, and weren’t educated enough to take care of their health. Of course, I was very wrong.
What I did not understand was that HPV is like the common cold of STD’s – over 75% of the sexually active adult population will contract HPV at some point in their lives. And it sticks around. HPV can remain dormant for decades and flare like the shingles virus that you carry if you ever had chicken pox. Yet the stakes are higher than the virus that causes shingles – several of the over 40 forms of sexually-transmitted HPV, two in particular (type 16 and 18) can cause cancer.
All of these facts – details I had been blissfully unaware of before July 15th – became headlines on my personal circus poster .
Yet this should not have been a surprise diagnosis. There were indications, years ago, that the circus was coming to town. Four years prior to my diagnosis, when I was approximately 44, I started experiencing minor spotting after intercourse. There was no pain. No sense of bleeding out – just a little pink.
Of course I panicked when I ran a Google search and cervical cancer came up as a possibility. I scheduled an appointment with my gynecological nurse practitioner who assured me that all my paps, taken routinely according to the guidelines, were negative. However, to be safe, a uterine biopsy was performed. It was negative.
Over the next couple years, I mentioned the continued post-intercourse spotting at each routine visit along with the profuse clear discharge that I had started experiencing (I was not too worried about the discharge as cultures that were taken indicated it was a normal mucous discharge and not the sign of any infection. Again, there was no pain or blood. No worries.). My next routine pap and HPV test both came back negative; an internal ultra-sound and another uterine biopsy showed no abnormalities. I had also started having the occasional hot flash. I was, it appeared, entering a normal peri-menopause.
As this peri-menopausal time progressed, I began having outrageously heavy periods. As a school teacher, this seriously impacted my work in the classroom. It was during a procedure called an ablation that inactivates the uterine lining, that my Gynecologist discovered the tumor high in my cervical canal – an area that is a less common location for cervical cancers and unfortunately for me, an area that Pap tests are notoriously ineffective in testing for cell abnormalities.
The opening act of this circus was the moment my doctor told me she had discovered something “that didn’t feel quite right” during the ablation and that she had performed a biopsy. The results of the biopsy came back positive for cervical adenocarcinoma – a cancer that accounts for 10 to 15% of cervical cancers – the kind that is harder to diagnosis with routine testing and is often found in later stages.
The more common cervical cancer, squamous cell carncinoma is the variety that presented on the exterior surface of the cervix and is the type that an abnormal pap smear is effective in predicting. With routine Pap testing, potential squamous cell carcinomas can be identified and treated when cells are identified in the pre-cancerous stage. That form of cancer is therefore in decline. Adenocarcinomas are, as a percentage of the total cervical cancers diagnosed each year, on the rise because the pre-cancerous changes are not as easily identified. I was now part of that statistic. Both my doctor and I took a deep breath and climbed on the ride.
The first spin on the Tilt-a-Whirl was her statement that I had tested HPV-positive. My head started spinning with this news. HPV is an STD! My husband and I had just celebrated our 25th wedding anniversary and we had been together over 30 years. I had only been in two intimate relationships in my life. My gynecologist explained that while I didn’t fit the mold, or what we assumed was the mold, for this diagnosis, in reality, HPV is the common cold of sexually transmitted diseases.
I tested positive for HPV 18 – one of the top 2 high risk varieties (and the one considered the most insidious as it tends to hide deep in the tissue avoiding early detection). I knew that there were other risk factors that played a role in causing the changes that lead to cervical cancer; among those factors are extended use of oral birth control, early pregnancies, obesity, and smoking, none of which applied to me.
I considered myself a poster-child of low-risk living. I’m a high school teacher; I go to the gym and maintain a healthy BMI; I volunteer for my church; I have never smoked and was only on birth control for a limited time. My gynecologist shook her head wishing there was an explanation other than bad luck. I began feeling like a freak in the circus side show.
The next few weeks were a crazy and half-remembered rush of tests and consultations. The endless conversations and phone calls with family, friends and co-workers were the worst part. I had my husband answer the phone when I was too exhausted to say another word.
My summer ended when the PET scan showed that the cancer had not yet metastasized, and I was a candidate for surgical removal of the tumor. On August 14th, I underwent a robotically-assisted radical hysterectomy. My oncologist removed the entire uterus and cervix along with my ovaries, tubes, the upper reaches of my vagina, and as many of my pelvic lymph nodes as she could locate. The aggressive surgery was successful with the pathology report showing that the lymph nodes and the margins surrounding the tumor were clean and cancer-free.
An 8+ week recovery period prevented me from starting the school year in September – a small cost compared to the threat of leaving a cancer in my body. Yet the circus, in a scaled down form, remains parked in my yard. The recovery is ongoing – too much activity too soon caused surgical complications that I am still dealing with nearly 6 months after the surgery. In addition to that, I will visit with my oncologist every three months watching for any signs of metastasis – cancer cells that might take up residence and grow in other areas of my body. This will continue for years. And I am truly one of the lucky ones – I needed no radiation or chemotherapy. Thousands of women will not have such a quick resolution and many will eventually die as a result of their cervical cancer.
I have experienced significant post-surgical complications and sexual dysfunction. My husband, a patient and loving partner, often reminds me that he would gladly give up sex if it means I will stay healthy. Of course, there is no easy guarantee of that! He also deals with the guilt of assuming he gave me the infection that lead to the cancer. And I still have the occasional fit of anger that it may have been his lifestyle prior to our meeting that caused me to get cancer decades after our marriage. Counseling has helped me deal with the anger and the fear of recurrence that I harbor. I wonder what me future and that of my family will be if the cancer reappears.
Yet, the future is promising for women younger than me: it promises that fewer women will unwittingly join the circus that I experienced. A highly effective vaccine, available to young women and men up to ages 26, will eventually make cervical cancer a rarity. The vaccine, now effective against 9 high risk forms of HPV, can be administered as early as age 9 when the immune system is most receptive. Ideally, the vaccine is given before sexual activity starts. For women above that age group and who did not get the vaccine (or got the vaccine early on when it only covered 2 to 4 forms of HPV), new guidelines are being introduced with a recently FDA-approved test that more accurately screens for the high-risk forms of HPV. While no test is 100% sure of catching every case of disease or cellular change, early warning through routine Pap and HPV testing can give medical professionals the information they need to make treatment decisions much earlier.
In the future, the only thing standing in the way of virtually closing down the cervical cancer circus in the US will be a woman’s disregard of her body’s subtle changes and a refusal to get routine, annual exams and testing according to updated guidelines. Trust me, this is not a circus you want join or even one you want visit with a mom, sister, or female friend!” – Carolann
In May of 2015, I told my HPV and cervical cancer story to a group of strangers for the very first time. This happened in St. George, Utah, where I was invited by the amazing Intermountain West HPV Vaccination Coalition to speak with a group of medical practitioners and community members who are fighting to improve HPV vaccination rates in a 5-state area.
The moment I agreed to go, I started stressing out about giving the speech. Although I’m not much of a public speaker, I generally do just fine. But the thought of this had me frozen.
And it wasn’t really a fear of public speaking, or being judged for admitting that I have had HPV (which is a common issue for anyone who publicly admits they’ve had it!).
It was because I was going to open up and tell these total strangers things that I hadn’t even told my family or closest friends… and I knew I’d cry while doing it.
I wrote out my 15 minute speech, practicing it over and over for my patient audience, which usually consisted of my 11 year old Pug, Dasha. I got pretty good at making it through the whole thing without any tears.
But a few days before my trip to Utah, I practiced my speech in front of two coworkers, who also happen to be dear friends. I cried! One of my friends said it was like that commercial from the 70’s, about pollution, where the Native American shed one single tear. But, I don’t believe her!
Apparently practicing in front of my dog, who is far more interested in her toys than in what I’m saying, is VERY different from sharing those deeply personal things in front of people who are actually paying attention, and who are responding to what they’re hearing. I had my two friends record this practice run so that I could send it to a few other people for their feedback too. I still haven’t watched the video myself and probably never will.
When I got to Utah, I was overwhelmed with how beautiful St. George is! I practiced my speech with Susie, another Cervivor also there to speak, and then went out to dinner with some of the people in town for the meeting. It was wonderful to meet so many people who are dedicated to protecting our youth from having HPV related cancers!
That night when I got back to my hotel room, I practiced my speech another 3 or 4 times, and then once again in the morning. The meeting started and lots of great information was shared. I was so excited about what the Intermountain West HPV Vaccination Coalition is doing and the impact they will have that I almost forgot I was nervous.
Then, it was my turn to speak. Although I knew that my voice was shaking, much like my doctor’s was the day she told me they’d found malignant cells in my cervix, I held it together pretty well. I told the audience about things that doctors said to me, some of which were very positive, and those which I hope other patients never have to hear for themselves.
I spoke about the emotional effects of what I’ve been through and how this has impacted not just me, but my family, friends, and significant others. As far as cervical cancer goes, I’ve been very lucky! But the last 10 years have not been easy.
I had it together and things were going smoothly until I looked around the room and saw that multiple people were crying because of my story. That was it! I began to cry too, but I kept talking because there was so much more to tell them.
I was very surprised that my story was impacting people this way. I really thought that my story only impacted my family and close friends, but it doesn’t.
Maybe, by telling my story and encouraging others to talk about this uncomfortable subject, we’ll be able to remove some of the stigma of HPV and cervical cancer. Maybe, telling our stories will encourage people to be more open to protecting their children through vaccination and education.
My experience in Utah was wonderful and has encouraged me to keep telling my story, even if doing it means taking giant steps outside of my comfort zone.
- Cindy Craddock
Today on Cervivor, we’re sharing Corine’s story. We hope her experiences can help other women traveling a similar path.
- Tamika Felder, Cervivor.org
“My personal experience with HPV and cervical cancer is a long and continuous road. It all brought me to where and who I am today, and most importantly, where I am headed.
Back in 1999, one of my best friends was experiencing abnormal PAPs for about two years. At that time there was no such thing as standard HPV testing and the connection between high risk HPV and cervical cancer existed, but was not common knowledge.
My friend’s doctor was perplexed by her issues; colposcopies and biopsies were not leading to any answers. It wasn’t until the end of 2000 that he was able to access an HPV test kit to see if that gave some insight into the problem. Luckily, it did.
The test clearly showed that my friend had concerning high risk HPV. After extensive research, her doctor concluded that this was what had been causing the changes to her cervix for so long, and another colposcopy was scheduled.
During that exam, the Doctor saw what he believed to be a cancerous lesion. The biopsy results confirmed it and she was immediately sent for a consult with an OB/GYN. Within one week she was told she had aggressive cervical cancer and would need full hysterectomy at age 40.
This was such a sad, chaotic and frightening time for her, her family, and her friends. How did this happen? She had been going to the doctor regularly and getting every test done as requested. How could they not have caught this and addressed it before it got so advanced?
I will tell you how: Because she was at the forefront of a huge medical breakthrough! Doctors were just beginning to realize that if they tested for HPV and caught high risk patients earlier and treated them more aggressively, they COULD stop the cancer BEFORE it advanced! Bittersweet. Huge advancements for gynecological patients around the country, but a hard lesson learned through her journey.
No, the story doesn’t end here. Not even close.
My friend underwent a hysterectomy and was told that no radiation or chemotherapy was needed at that time. She developed complications from a fluid-filled stomach which was thought to be more cancer, but ended up being an infection related to the internal organs shifting around after surgery.
There were a few heart stopping reality checks; what they thought was metastasis in her liver, and a false/positive PET scan that suggested even more extensive metastasis, but turned out to be wrong!
About 1 ½ years after her initial hysterectomy, a lump appeared under my friend’s arm. Her Doctor first gave antibiotics to address a possible infection, but the lump didn’t change, so she had surgery to biopsy it. Turns out, it’s cervical cancer.
Because of the removal of the lymph nodes in her pelvic region during the hysterectomy, the cancer had spread to the lymph nodes under her arm. This was a far spread from original site and also considered Stage IV.
Things were getting real. No one had heard of cervical cancer spreading to that area, and at this time, there were no known or documented treatment plans. It was anyone’s guess what would happen next.
When I accompanied my friend to one of her oncology appointments, the doctor started by handing her a brochure about where to get a wig when her hair falls out. A bad start to say the least.
After listening to the Doctor’s spiel with suggestions of extremely toxic and high dose chemotherapy, I asked what she was basing this on, and she didn’t have an answer. When I inquired as to how many times she had treated cervical cancer that had spread to this region, the Doctor responded that she never had. She told us it was not something documented as ever happening and there was no text book to refer to; so she was just “guessing” at the best treatment plan.
Guessing?? If it were your mother, sister, daughter or best friend would you be guessing this same way? No response. Out the door we went!
This marked the point when myself and another friend (who happens to be a nurse and legal consultant) jumped into survival more. We researched everything, including information on a study from Switzerland that showed women with metastatic cervical cancer did best by combining Cisplatin chemotherapy and radiation at the same time for approximately 6 – 8 weeks.
We were able to get more information by communicating via email with many helpful medical researchers. With all this information in tow, we helped direct my friend to the right physician at Memorial Sloan Kettering Cancer Center.
The Doctor was intrigued by her case, listening to all the suggestions and history up until this appointment. He had also heard of the study being conducted in Switzerland and agreed with that approach, suggesting it to my friend. He also said that if she had agreed to the other doctor’s suggestion, the chemotherapy would have definitely killed her before the cancer ever would!
The treatment plan was coordinated with local doctors closer to her home in New Jersey, and my friend fought through it like a champion. She has just celebrated 12 years cancer free!
Right around the time that she was finishing treatment, I received a call from my OB/GYN about an abnormal PAP and was told to come back in for a colonoscopy. Now my fun begins!
I had high risk HPV and abnormal biopsy as well. My Doctor wanted to put me right in the hospital and do a cone biopsy, but thankfully I knew more about PAPs, HPV, and the connection to cervical cancer than ever before, so I understood how important second, third, and fourth opinions were.
I was NOT going to go blindly or quietly through this experience.
I got myself into a clinical trial that was being conducted at Memorial Sloan Kettering for women with abnormal PAPs and high risk HPV. Dr. Carol Browne was phenomenal! She treated me initially with a colposcopy, then monitoring, then when things changed, a LEEP.
As we were approaching the 2 year and no recurrence mark, I went in for an exam and began to bleed. She went into emergency mode and we did a colposcopy right then and there. Changes were occurring again in my cervix so she then suggested a D&C and additional biopsies. Thankfully, after that I went a year with no further issues and was able to follow up with a local doctor.
All was good until about 3 years ago when I had another flare up of high risk HPV. Cue the immediate colposcopy! All was negative and has been fine since then. I am thankful every day that I was able to learn what I did through my friend’s journey which assisted me in helping myself the best way possible.
That’s when I decided that if my friend’s experience could be so helpful to me and spare me encounters with bad doctors and bad decisions, I could help others too. Myself and my nurse friend sat down and co-wrote a book to help educate people about their rights as patients. It explains the importance of getting second opinions, obtaining copies of your test results and medical records, and working to understand it yourself. We dedicated a chapter just to PAP smears and what the classifications mean, as well as HPV and its correlation to cervical cancer. We explained as much as we could so women could get copies of their PAP and HPV tests and understand for themselves what it all meant.
The book was a success. Through book signings and interviews for newspapers, magazines, and radio shows, we spoke to people who were grateful for the information. We met people whose eyes were opened to what they didn’t recognize before. We realized there was a need for this information and continued our mission. We began speaking engagements throughout the state and accepted an offer to host our own TV show on a local cable network. We’ve had the show for about 3 years now and discuss important health topics, also hosting guests who share tips and information to help people become more knowledgeable in medical situations.
I began volunteering for numerous charities including cancer groups, hospice facilities, and advocacy groups. I continue my work as a patient advocate on many platforms and I believe it is what I need to do.
I went through my experiences for a reason. I have this knowledge because of my profession and I am able to speak up and do something. I will continue to share my story until my last breath, or until cancer is cured and/or medical care no longer requires intervention, whichever comes first! If I help save one life with all this (and I pray it’s millions) then it was all worth it!!”
- Corine Mogenis, Medical Paralegal, Patient Advocate, Co-Author and Co-Host, HPV Cervivor