Search

I Was Diagnosed With Vulvar Cancer: My Unusual Story of Gratitude

I was diagnosed with Vulvar cancer : my unusual story of gratitude

About the Author: Karen is a clinical psychologist who lives in Colorado. She works in private practice and as an adjunct university professor. When possible, she heads to the mountains to relax, recharge, and reconnect.

How My World Changed in an Instant

At 2 am on Labor Day 2019, I was laying on my bathroom floor writhing in agony. Full of embarrassment and resignation, I called 911. In the ER, a CT scan revealed that what I had assumed was just a nasty case of food poisoning, was actually a lovely kidney stone. I was immediately wheeled to the OR for stent-placement surgery and then admitted overnight.

During this surgery, the urologist grew concerned after noticing something “weird” (an official doctor term). He requested an in-house gynecological consult which led to a referral for a gynecological oncologist. The very next week, I was once again in the OR. This time for a biopsy and groin lymph node excision. I was diagnosed with Stage 3 Vulvar Cancer (squamous cell type).

Listen to Your Body

Typically, when I first share with someone that I have cancer of the vulva, the first response is: What? Does that exist? This question is quickly followed up with: Wait, what exactly is the vulva? Where exactly is it located? And then a google search begins. (For those of you silently wondering, the vulva consists of your outer genitals—the vaginal lips, vaginal opening, clitoris, and perineum). Vulvar Cancer is incredibly rare—according to Cancer.gov, 0.3% of all women will be diagnosed in their lifetime. Also, yearly only 0.3% of individuals newly diagnosed with any cancer have Vulvar Cancer. To put this in perspective, last year in the United States, approximately 1.7 million people were newly diagnosed with cancer. The most frequent diagnosis was breast cancer (268,600 women). The rate for Vulvar Cancer was 6,070. Vulvar Cancer is more commonly found in women over the age of 65; only 14% of new cases (840 women) occur in those younger than 55. I am 47.

The warning signs and symptoms of Vulvar Cancer often mimic other gynecological issues and are therefore frequently ignored or misdiagnosed. Persistent itching, bleeding not related to your menstrual cycle, tenderness, skin discoloration, and a lump or growth could be signs of precancerous cells and/or cancer. While I experienced many of these symptoms over time, I found it easy to rationalize and even discount what I was noticing. For example, a few years ago I had a skin biopsy on a spot on my vulva that was itchy and mildly tender. The results came back negative. I was provided with a cream to help manage the itchiness and the sensation eventually subsided. When the itchiness later resumed, it was easy for me to believe that there was nothing significantly wrong. Further, I entered perimenopause at the age of 45. I again completed various lab tests and a pelvic ultrasound. These tests only confirmed that I was indeed entering menopause. When “breakthrough bleeding” later occurred, it was easy for me to assume that this was related to perimenopause.

My Lesson in Gratitude

There is a history of cancer in my immediate and extended family. For most of my adult life, I have been fearful of receiving my own cancer diagnosis. And to be honest, I remain fearful of a reoccurrence or new diagnosis (my risks for cervical, ovarian, and vaginal cancer are now increased). And yet, once I was told I that I do indeed have cancer, in addition to fear I also felt determined and optimistic. I researched what information I could find from cancer websites (e.g., the American Cancer Society, the Society for Gynecologic OncologyMemorial Sloan Kettering Cancer Center) and collated the information. I am fortunate to have a wonderful treatment team through Rocky Mountain Cancer Center; they have remained honest and direct, positive and hopeful, and willing to answer all of my questions based on my research.

I began my treatment process at the beginning of October 2019. So far, I have completed 3 rounds of chemotherapy and surgery (a subtotal radical vulvectomy). I will soon begin 4 weeks of daily radiation supported by weekly chemotherapy. My life is now full of bed rest, boppy pillows, and baby wipes (ironic, as I have no children). I have learned to ask for--and more importantly to accept—help from my community (well, most of the time). I have learned that there is no reason to feel shame about having cancer. I have learned that talking about my “lady bits” with anyone and everyone has negated any (well most) feelings of embarrassment or discomfort with being the center of attention. (Ok, I admit it, I am relishing things being “all about me” right now). I have learned that I can still thankfully taste chocolate even when my taste-buds change from chemo.

I am grateful for my family and friends who have been fabulously supportive. They feed me, listen to me AND ask questions, take my dog out for walks, drive me to appointments, send wonderful cards and care packages (usually filled with chocolate). I am grateful for the financial support I have received from family, friends, my professional community, and even strangers, as I am self-employed and unable to work daily. I am grateful for beautiful sunrises and sunsets over the mountains. I am grateful for my treatment team, for their patience, compassion, optimism, and giving me a fighting chance. I am grateful for Facebook Vulvar and Gynecological Cancer support and awareness groups. They are filled with amazing women surviving gynecological cancers, offering tips and strategies for managing treatment side effects and providing unending support. I am grateful for my dad for having taught me how to keep a sense of humor while fighting cancer. I am grateful for my mom for teaching me how to find the strength to persevere and to see the beauty in the world. I am grateful for my aunt, cousin, and friends who have battled cancer, for teaching me how to be brave and honest. I am grateful to my body for its willingness to absorb all the fun side effects of treatment, for slowly healing, and for finding a way to let me know that something is really wrong. To this day, I maintain that my kidney stone was the worst pain I have ever experienced. However, I remain grateful as that pain, along with my vigilant urologist, ultimately saved my life

9 Responses

Marie

Marie

September 14, 2020

I’m laying reading all these comments and fearing the worst no one has diagnosed me with anything but these symptoms are what I’m experiencing the small lump on my labia to the itching now burning sensation I’m scheduled this day to see my GYN very worried about the out come.

Jen S

Jen S

August 20, 2020

I’m so scared right now. I’m waiting on a biopsy I had done yesterday for pre cancerous vulva area spot on lower right side by vaginal opening. I have a sore that wasnt going away for 4 weeks.It took 2 weeks to get an appt with a gynecologist. She blurted out that it look pre cancerous and did a biopsy but I’m still in shock and have to wait 5 days for results. I’m 65 yrs old. I’m here at work exhausted just thinking about the worst. I even have cried 3 times because every time I feel down there it doesnt feel like a sore that’s going away. Now theres a black spot where the Dr cut for biopsy. I’ve decided I will have it removed either way. But the emotions I’m feeling now are taking over my well being. I’m wondering if this is normal to feel so alone and scared.

Suzanne

Suzanne

August 20, 2020

Karen it’s so good to hear your advice and comments .Our 76 year old mother had been diagnosed with vulva cancer last November this cancer was at stage 2 at that particular time . .Due to Covid we waited until the end of January until we received an appointment at that point the cancer had progressed to stage 4.We are now almost at the end of August and we have been told there isn’t any further help that can be given, the sad part of my mother’s journey through this debilitating illness is that nobody really new how to treat this specific type of cancer as it is so rare ,with district nurses often refusing to look at the area which is now ulcerated or provide any treatment we feel really let down by are NHS system who are constantly blaming Covid for their lack of personal care.You mention your own team and community around you ,I wish we had the same support it’s so good to hear as this is crucial to your recovery.

COSMAS Muroiwa

COSMAS Muroiwa

August 12, 2020

Hi Karen
Thank you so much for your post. Today my wife just told me that our 21 year daughter has been diagnosed with valva cancer. The gynaecologist advised early surgery of which is to be done today. It was detected on the 7th of August 2020 and hasn’t spread too much to other parts. Your article gives me at least the comfort that all will be well with our daughter. I will assist my wife to manage my daughter’s situation in the best possible situation and comfortability.
Thank you so much and stay blessed

Kristina Johnson

Kristina Johnson

August 06, 2020

Thank you for sharing my mother was diagnosed with vulvar cancer when she was 60. They caught it early on and did surgery to remove the tumor and she did radiation. Everything looked good. 2 years later the cancer came back in September of 2017. She went back in for surgery. The dr said that the cancer had spread and she had mini tumors in the surrounding areas. They said there wasn’t really anything else to do. I wish I would have pressed further or gotten a second opinion. By December of 2017 she had started holding fluids and we took her to the hospital. They took out 3 liters of fluid from her abdomen. We then find out the cancer has spread to her liver, they give us 12 months. This was on December 20, by December 27 she was no longer able to talk and she was sent to hospice. She passed away on December 31. My message to everyone is be diligent and listen to your bodies. And if you think something is wrong go seek help and don’t stop until you get an answer.

Becky Bowles

Becky Bowles

July 30, 2020

My mom was diagnosed at the age of 90 with vulva cancer. The physician was treating her for a yeast infection. This treatment continued for about 6 months. I made an appt. with a GYN and once again treatment for the itching and burning. Then I took her to another GYN, treatment again. After the second visit to the GYN, she referred us to a dermatologist and diagnosis was made. She underwent 30 treatments of radiation. She opted for no surgery, she was free from this horrible cancer for about 4 months. She is now in a nursing home, with Hospice. She has a catheter in her bladder and the cancer is taking over the urethra and she is incontinent. She is in pain all the time. It’s so sad. Please get checked at any age if symptoms persist. There needs to be more awareness of this cancer.

Karen, I am so happy this was caught early. I hope u continue to do well.

michelle chicaiza

michelle chicaiza

June 24, 2020

Hi, I from Ecuador and I read your story is very inspirational. My grandmother was detected this kind of cancer. She has 88 years old. The situation is difficult but your story is so great to learn that my grandma is not alone in this illness. The pandemic situation does not allow to continue with the treatment. But thaks for share your experience. My best wishes for you.

Donna

Donna

May 11, 2020

Hi Karen,

Thank you for sharing your story. It is both helpful and uplifting considering what I have found thus far in trying to garner some insight. Just days ago I received the official diagnosis of vulvar cancer and, while I am the eternal optimist, I must admit I remain silently anxious about the unknown to come within the next weeks/months, and hopefully, years.

Larry Polsky

Larry Polsky

March 17, 2020

Karen. I am so happy for you things are moving positively! Your story resonated with me as I was diagnosed with stage 4 melanoma in 2018. I am learning the same things – get help , ask what you need, feel the love of the community as that is so strong and I believe is ultimately saving me. I also learned about chronic illness families where people get sick because they can’t ask for what they need and the family is not good at handling conflict and dissent. Once they are sick they have to get the attention they want. This whole experience is a blessing.

Leave a comment (all fields required)

Comments will be approved before showing up.

Search