What Color is My Cancer

Nancye

Most cancers have their unique names and a ribbon color assigned to them, but I understand that my cancer was rare and has not been given its own color. Since teal is associated with ovarian and cervical cancers and I was diagnosed with vaginal cancer, I “adopted” the color of teal.

Around September or October 2012, I began to have “female problems” and assumed I had a common female infection so the next few months I took two (2) separate rounds of medication. In between the medication I thought I saw a very small spot of blood, but I dismissed it. In March 2012, when I notice a small amount of blood again, I decided I could no longer deny it, something was wrong and it was time for a consultation and checkup with my family doctor.

During my examination, a polyp was found on the lower back part of the vaginal wall. A comparison to computer images reflected nothing more than a common polyp. After a discussion of the rarity of vaginal cancer I was referred to an OBGYN surgeon.

My appointment with her was on April 24th for consultation regarding the surgical removal procedure. After a discussion of the probabilities of the polyp being cancer was thought to be less than 3-5%, I scheduled the surgery for May 14th.

After being prepared for surgery the doctor asked if I would be offended if we prayed together. This was totally unexpected but very much appreciated.

Wednesday, May 16th, started like any other day of retirement with me and my husband drinking coffee, planning our day, looking out at the lake, trying to decide what to eat and whose turn it was to cook when the phone rang. As I listened to the doctor apologizing for giving me this news over the phone, but she had just received a call from the pathologist reporting that I had vaginal squamous cell cancer and she had taken the liberty of setting up an appointment for the following Tuesday, with Dr. Noelle Cloven who specializes in gynecologic oncology at Texas Oncology in Fort Worth. She emphasized how sorry she was to delivery this information over the phone but she wanted me to know as soon as possible and not have to make an appointment and drive to her office on the chance I would come in alone. I told her I understood while writing down the information regarding Dr. Cloven and hung up the phone. My husband knew who had called and seeing my expression, asked me what was wrong. I turned to him and said the three words everyone fears, “I have cancer”, when I looked back outside everything went blurry as tears filled my eyes and I found it hard to swallow the huge lump in my throat.

As my husband and I started talking about my diagnosis, I couldn’t help but wonder if deep down inside I suspected it was more than a yeast infection and was why I kept putting off going to the doctor. I made my husband promise not to say anything until after our grandson’s high school graduation on May 25th and then we could tell our family and closest friends, but I was not ready to tell the world. Just the thought of telling someone that I had vaginal cancer was personally embarrassing.

I immediately started looking up information on the Internet and found the American Cancer Society, Wikipedia, the National Cancer Institute, and the Foundation for Women’s Cancer (f4wc). All of these sites provided excellent information and personal stories from survivors.

I was completely surprised that vaginal cancer accounts for only about 1% of gynecologic cancers. When cancer is found on the vaginal wall it is usually a secondary cancer, which means there is or has been cancer elsewhere in the body and it has traveled to the vaginal wall (metastasized). But when this happens, the cancer is named for the primary or original site such as ovarian or cervical cancer. For me, it was the primary site which is very rare and is probably why it was thought to be a benign polyp instead of a tumor.

I also read that vaginal squamous cell cancer occurs mostly in senior women and only 15% of the cases are found in women younger than 40, but almost half of the cases occur in women who are 70 or older. The average age at diagnosis is 60 to 65 years of age and the most common way to find this cancer is while having your well woman checkup including a pap smear because symptoms usually don’t appear until the late stages.

On June the 11th, I was admitted into Baylor – All Saints Hospital by Dr. Cloven for an additional biopsy at the tumor site and sentinel lymph node removal in both groins. During this surgery, Dr. Kathleen Shide, who specializes in radiation oncology, was called into the operating room for examination and consultation on my future radiation treatments.

The biopsies revealed cancer still at the tumor site and two (2) of the seven lymph nodes taken from the right groin contained cancer cells. The good news….the cells were still encapsulated in the lymph nodes so they had not been released into the blood stream. The bad news was my radiation treatments would require an additional 5 rounds just to the right groin.

I started my treatments on July 23rd and five days a week for 6 weeks, my husband drove me the hour and a half to Texas Oncology in Fort Worth for my 30 external radiation treatments. By the third week of treatments, I was so fatigued that I usually fell asleep on the way there and on the way home. Around this time I started to developed blusters on the buttocks which made it impossible to find a comfortable setting position. Since my cancer was located on the back portion of the vaginal wall, they also administered radiation thru the buttocks. By the 5th week, I had lost 20 pounds because of intestinal/stomach issues.

Since the treatments are scheduled at the same time each day you get to know everyone there. We formed a support group of seven ladies and conversation made the time pass quickly. The group consisted of 5 breast patients, one rectal patient, and yours truly was the gynecologic patient. Two weeks before finishing my treatment, our dear friend that had rectal cancer passed away. Three of us still keep in touch to this very day.

On September 4th, I rang the bell at Texas Oncology announcing that I had finished my 30 rounds of external radiation treatments. Standing beside me were my support ladies, husband, and one of my therapist. The next day I posted on Facebook the picture of me and my husband holding my “What Cancer Can Not Do” quilt that two of my dearest friends made for me, while ringing the bell announcing to the world that I had finished my external radiation treatments and ready to start my second phase.

Texas Oncology has an alcove with the walls painted with different sayings of strength and encouragement. Hanging in the middle of the back wall is a big gold bell with a white rope for patients to ring when they have completed their last radiation treatment. When this happens, everyone in the building cheers and claps for they know someone has completed this crucial part of their journey and are hopefully cancer free.

September 17th, I once again checked into Baylor-All Saints Hospital for my surgical placement of the template and the nine 10 inch needles into and around the tumor site. I was taken by bed from recovery thru the tunnel that attaches Texas Oncology to Baylor All Saints Hospital for images to assure everything was precisely placed. The needles had lead wires that would be attached to the radiation machine for treatment scheduled for that afternoon and two treatments scheduled the next day. If all goes as planned I would be released the third day. The procedure was not painful, but I was confined to the bed and could not move from the waist down until after the last treatment when the hardware would be removed. I developed a migraine that made me nauseated the first day and by morning I have to admit that for the first time I didn’t think I could finish the treatment and wanted to go home. My husband told me I had come too far to quit now and knew I was strong enough to get thru this. Around noon the medications finally controlled the nauseating headache and I was able to complete the last treatment. I must say he stayed and encouraged me the entire time at the hospital.

On September 18th I once again rang the bell at Texas Oncology announcing my final radiation treatment. I was still in my hospital bed being taken back to Baylor Hospital after completing the last treatment so the picture isn’t pretty, but it’s my favorite.

The best day of my life was on September 19, 2012, when Dr. Shide was releasing me from the hospital and I asked her if I could tell my family and friends that I was in remission. She leaned in close and solemnly said “No, but you can tell them you are cancer free”. I told her that today was my 65th birthday and that news was the best present that anyone could ever receive. The gift of life!

I’m one of the lucky ones. I was diagnosed in stage 2, I had fantastic doctors and therapist that were in constant contact with each other, and from the first diagnoses to the final treatment, other than the migraine, I maintained a great outlook and said from the beginning that I would beat this thing called cancer.

September 19, 2013 is my 66th birthday and my 1 year anniversary of being cancer free.

The American Cancer Society states vaginal cancer is rare and accounts for about 1 out of every 100 cancers of the female reproductive system. Their 2013 estimates in the United States are about 2,890 new cases will be diagnosed for vaginal cancer and about 840 women will die of this cancer.

With the tremendous help and dedication of the staff at the Foundation for Women’s Cancer, vaginal cancer has been assigned a ribbon color.

My name is Nancye Jefferson and my color is turquoise.

Spotlight

Visit the Sisterhood of Survivorship page to read “Dena’s Story” — by a vulvar cancer survivor who has shared her story and wise words, and channeled her energy into her National Race to End Women’s Cancer team.

Awareness

The CDC recently announced that fewer than half of American children are given the HPV vaccination.

Research

As of the July 23 deadline, 55 research abstracts were submitted in hopes of receiving one of only 6 grants from the Foundation. This points to a need for more funding so that the Foundation may award grants to every deserving applicant.

Education

The Gynecologic Cancer Global Health Forum will be Saturday, Sept. 6, 2014 in D.C.. For more information on educational events and courses, click here.