At 36 years old I was diagnosed Jan 2018 with Clear Cell Carcinoma, Stage 2B. After surgery and chemo I would like to share I am now 1 year cancer free. After all of the ups and downs of being a new cancer survivor I am happy to say I have reclaimed my pre-Cancer lifestyle. In March I ran my first post cancer half marathon and am now training for a triathlon. I spend my time training to maintain a healthy lifestyle and supporting other young adults with cancer.
My name is Joanie Shawhan and I’m an ovarian cancer survivor, retired RN, and author of In Her Shoes: Dancing in the Shadow of Cancer. My journey began in 2006 when I rolled over in bed and felt a grapefruit-size mass in my abdomen. My doctor thought it was a uterine fibroid, but after the ultrasound, she diagnosed me with ovarian cancer. I received 6 rounds of taxol and carboplatin.
I sought out other ovarian cancer survivors, but I found no support groups, Facebook groups, or Gilda’s Clubs. So I started writing the book I would have liked as a resource when I went through chemotherapy.
I finally met other survivors in 2015 when I attended ovarian cancer camp at Camp Mak-A-Dream in Missoula, Montana. My cabin mates told me about sharing their ovarian cancer stories with medical students in the Survivors Teaching Students (STS) program. Back home, I contacted WOCA. I enjoy participating in the STS program.
Through STS, several of us decided to start an ovarian cancer social group meeting once a month at a local restaurant for lunch. We sponsor speakers of interest, plan fun outings, and organize fundraisers. Thus hatched The Fried Eggs—Sunny-Side Up.
In March 2019, my book, In Her Shoes: Dancing in the Shadow of Cancer, was published. It is a collection of vignettes, highlighting the stories of everyday women with everyday lives interrupted by cancer—their challenges, heartbreaks, questions, and triumphs.
Today I am cancer-free. I continue to advocate for women with cancer through my book, In Her Shoes: Dancing in the Shadow of Cancer, fundraisers, Survivors Teaching Students, podcasts, radio and television interviews, and my website: www.joanieshawhan.com
I am a Fried Egg—Sunny-Side Up.
My name is Deanna. I’m 60 years old , married to my high school sweetheart. We have 2 daughters who are both married and 6 grandchildren. My paternal grandmother died at age 46 of a female cancer, (which was in my medical history), however I didn’t know the type and had thought it may be uterine.
I’ve since learned that I have a BRCA1 mutation and that she actually died of ovarian cancer. I was diagnosed with advanced ovarian cancer in April, 2016. In January of that year I had a routine colonoscopy, my third, so I knew the routine etc. The results were good, in fact I was able to move to the 5 year plan instead of every 3 years. A month later, in mid-February, I reached out to my regular GP. Having done this before, I knew that I should have been feeling normal a day or two afterward.
My symptoms were sporadic, not all the time but present nonetheless. I felt bloated, pressure during urination, discomfort during sex, cramping/tenderness in the pelvic area—similar to menstrual symptoms—only I hadn’t had a period in 2 years. I mentioned that although I don’t feel this way ALL the time, I NEVER had any of this prior to the colonoscopy. My GP responded that she suspected a urinary tract infection and to bring in a sample.
Two days later, I called the office wondering if my test results were in. I was told by the office nurse that my urine was clear and I was fine. I was NOT fine. I asked about my symptoms and was told to wait 30 days and bring in another sample. I then asked if this could be related to a uterine fibroid that I had and they suggested I see my GYN. The following week my GYN did a pelvic exam, cupped what she believed to be my fibroid (very painful!) and said that it felt the same size as it has been but we’ll do an ultrasound—my last was in 2012. She said that since I am no longer having periods, my fibroid was becoming necrotic, which is an inflammatory process, hence the bloating. No blood work or anything further.
Next week, I had a pelvic ultrasound. By now my symptoms have become more regular, my bloating has increased and my discomfort is mounting. The ultrasound stated “the fibroid is in the central part of the uterus and probably smaller than the 2012 study. Both ovaries demonstrate small probable benign-appearing cystic lesions with normal blood flow. Some free fluid was found in the cul-de-sac and toward the right adnexa with some possible internal echoes within it.” My doctor called before leaving for vacation and said I was fine—such a relief—now I just had to wait for this fibroid to die off. That was the second week of March.
As the days went on my bloating increased. I was working out 5 days a week but still my weight went up a couple pounds but I thought I was building muscle! My belly was solid and sticking out a little. I felt full really fast and like women everywhere, I was good with that, always checking the scale. I started having trouble sleeping—certainly tired enough but couldn’t get comfortable—laying on my back felt like I was 9 months pregnant but the baby hadn’t dropped and was right under my ribs. I would have to lay on my side and cup my belly as if I was cradling a fetus. By the end of March, I was struggling to do my workouts, trying to run but having to hold my belly while doing so. I mentioned to my friend that I had a fibroid that was giving me trouble, but the cramping had subsided so I thought I’m on the downside of this, finally. My daughter went in for her yearly GYN appointment and mentioned me to her doctor. He was concerned that a fibroid was causing me pain and suggested I come see him for a second opinion. I made an appointment right away but couldn’t get in to see him until April 25th.
On April 16th, I saw my mom and she commented on how big my belly had gotten since she had seen me the week prior. Knowing that it was visible through my clothes got me a little scared so I decided to go see the doctor. Saturday at 5pm it was Urgent Care or ER and I decided on Urgent Care. They asked me a few questions about my diet, palpated my belly and asked if gassy food bothered me. Normally, I can eat anything I want but at this point, YES, gassy stuff bothers me as my belly is so full already. I felt relieved after she pushed around my abdomen and didn’t mention tumor etc. Her suspicion was IBS and she recommended that I see my GI doctor on Monday. On Monday I called the GI office and the nurse said she would call me in a prescription for an IBS flare-up. I took the meds at 3pm and then at bedtime. With no relief, at 5am I finally went to the ER and they detected fluid immediately. One CT later and I was diagnosed with what they thought was Stage 3 OC. That afternoon I had 4 liters of fluid drained and on April 25th, I met with my GYN ONC. My CA125 level was 2088 and I had seven tumors. I received weekly Carbo/Taxol treatments from May 2nd - October 10th, along with a clinical trial of Veliparib.
On July 21st I had a hysterectomy and my cancer was actually Stage IV—still showing a small nodule on my spleen. That is now gone and my CA125 these days hovers between 4 & 5. I finished the trial drug in July 2018 but continue to check my CA125 every 3 mos and have a CT scan every 6 mos.
I am fortunate to not have suffered any serious issues throughout chemo: hair loss, a little fatigue and some neuropathy was about it. My neuropathy has subsided and I’m feeling like my old self again. Listen to your body and don’t be afraid to push. Had I done that I may have been dx’d at an earlier stage. None the less, I am blessed beyond measure and thank God daily.
Originally presented by Laura Clark-Hansen in 2012 at the Poised for Progress Conference in Washington, DC. This is a poem she wrote especially for the “Honoring the Journey” conference session.
Women worship it.
Cut, color, condition, and curl it.
Not me. I hate it.
I have the world’s smallest head, Crowned with wispy blonde dryer lint.
“You’ll lose your hair, no doubt,” they said.
I smiled, not the least bit sad, not a hint.
I whispered, “Thanks Carbo and Taxol, For giving my hair a second chance.”
Then, entering the world of wigs, I did a brief happy dance.
The Wig Consultant Greeted us. A bright smile creased her face. “Picking out the perfect wig is an art form, you’ve come to the right place. And you don’t want to skimp on this. A woman’s hair’s her crowning glory. Cancer ladies even keep them after their hair grows back. Sure they do… here’s the story. They come in so handy when you don’t have time to style things just so….Or, you know, It makes a wonderful donation to another unfortunate such as you, When you don’t need it, or pass away, or you’re … through.”
“Excuse me?” I asked, slack-jawed.
“Pass away, did you say?
Just a minute.” I paused,
“Never mind. Anyway….”
I had a style in mind,
A well thought out color.
I knew what size to request.
“I’ll measure anyway… It’s no bother. Good Lord! You do have a tiny peanut of a noggin. I’ll check the stock on the computer, excuse me while I login. I’m so sorry. We don’t carry many smalls or extra smalls in stock. But you know, I do believe we have a child’s wig tucked away in a box.” It was auburn. It was curly. I was sure it would fit. I placed it on my head and it looked like … ugh I wanted to be respectful, honestly I did. But I couldn’t help myself, when the hair-hat slid. “Maybe she died of embarrassment when she saw herself in this thing.” Tears streaming, I laughed, I lost my breath. Then I couldn’t stop sobbing, As I imagined that child’s death. I wept for the little girl, whose hair I tugged from my head. I grieved for her family. In a panic, I fled.
“Please send hats” I implored colleagues, family and friends. Hats arrived; warm, cool, stylish, bizarre. And then it began. Hair clung to the pillow where my restless head tossed, It coated the tub, then, in a swirl - it was lost. Hairless. Slick as a seal, By my third chemo session.
The first and only time I’ve ever had a Brazillian, I loved it. I did.
That’s my chemo confession.
My name is Debbie Loughrin. I have been married to my high school sweetheart for 45 years, I am a mom to 5 beautiful children, and grandmother to 10 wonderful grandchildren. I am a retired RN and I am a 3 year ovarian cancer survivor.
My story is unique in that it was a bit of an unusual presentation, and a good example of how Ovarian cancer whispers.
In March of 2015 I had some vaginal bleeding. I was post menopausal so it took me by surprise. I was concerned so I called my PCP who sent me to a gynecologist who did an exam and then sent me for a trans vaginal ultrasound. The results were that I had a very thin uterus and possible cyst. At that Ultrasound it was noted that both ovaries were identified and appeared normal with no abdominal masses found. So, back to the gynecologist who just to be safe did a uterine biopsy, which came back normal. But I continued to have vaginal bleeding. I got another opinion from a different gynecologist who wasn't concerned because 2 uterine biopsies were normal. But they both agreed that I needed a D and C. It was done but showed nothing but a thin uterus and a small polyp. I continued to bleed.
After about 9 months of vaginal bleeding I thought it might be time for a hysterectomy. The bleeding wasn't a lot of blood and it wasn't everyday, but is was consistent. Having been through menopause, it was very annoying. It was time to make it stop.
Unfortunately, the hysterectomy was put on hold because in the meantime I was diagnosed with Rheumatoid Arthritis. We decided to hold off on the hysterectomy to get my RA under control. During the time of dealing with RA the bleeding continued and my Dr. left the clinic.
After a few months I felt like it was time to get this over with. It had been a year and a half of bleeding and I was so ready to get the bleeding stopped. So, the surgery was scheduled for June 13th 1916. It went well, it was a laparoscopic procedure, everything was removed, BUT my Dr. told me she had found some abnormalities on both ovaries and my left tube. I went home the next day only to get a phone call from my Dr. telling me the biopsy came back positive for for high grade Serous Carcinoma. The next step was to see a gynecological Oncologist.
After meeting with the Dr. and hearing all of the statistics it was decided that the best route would be another surgery to determine staging and clean up the margins. That surgery was a full open surgery. Finally I had a starting point. My nodes were negative but I did have a spot on my peritoneal bladder, so my diagnosis was stage 2B high grade Serous carcinoma. It appeared that the cancer started in my left Ovarian tube.
On to chemo. After 2 surgeries in 4weeks it was time to start chemo. I was to have 6 rounds of Carboplatin and Taxol for a total of 18 treatments. I think that because I had 2 surgeries and then started Chemo all within 8 weeks, my body started out already tired. I needed 3 blood transfusions during Chemo and had a lot of trouble with nausea vomiting, and fatigue and neuropathy. But I made it through with the help of my family and friends and great doctors. In June of 2019 I celebrated 3 years of no evidence of further disease. I have a wonderful social group of other ovarian cancer survivors to hang out with. Since my presentation was a bit unusual I do participate in survivors teaching students, hoping that my story will be remembered when they are doctors and a patient comes in with postmenopausal bleeding.