Linda

Location: Florida

Cancerversary: March 2012

Age at diagnosis: 43

Diagnosis: Recurrent survivor

Stage of cancer: No stage specified

How my story begins: In 2002, I was diagnosed with thyroid cancer shortly after my second son was born. I had my thyroid surgically removed and radioactive iodine as treatment. Two short years later, I was diagnosed with Stage 0 Adenocarcinoma in situ of the cervix. I had a hysterectomy and no other treatment. I thought I had checked cancer off my list until I found a lump in my supraclavicular lymph node on the right side, which quickly turned to enlarged lymph nodes up and down both sides of my neck. It was thought that my thyroid cancer had recurred and I was facing an extensive neck surgery that came with a host of risks until I found enlarged lymph nodes in my groin area which alerted the doctors that it was likely not my thyroid cancer. With greater urgency, I was transferred to GYN/ONC to develop a plan of treatment. CT scans would confirm that the nodes throughout my body were being affected.

Life before my diagnosis: My third and most significant cancer diagnosis came in July 2011, weeks after running my first marathon. I was in the best shape of my life. I was an active mother of two sons and wife. Having been through two other cancer diagnoses I wasn't shocked when the enlarged lymph node in my right clavicle was determined to be a recurrence of my 2004 cervical cancer diagnosis of Stage 0 Adenocarcinoma in situ.

How I felt after diagnosis: I felt strong knowing that I was physically in the best shape of my life. At the time it didn't occur to me, and only me, that I could die. Everyone around me knew the severity of my diagnosis and did the worrying for me.

Telling my family and friends: I was very open about the process of my diagnosis with my family and friends, except my children. It was difficult to share with my then 9 & 13 yr old sons that my cancer was back. It was something I couldn't protect them from which, as a mom, was foreign to me.

My treatment: I participated in a clinical trial at MD Anderson in Houston (flying from my home in Central FL every 3 weeks for chemo). I received Cisplatin and Alimta every 3 weeks for 8 rounds. I did not have a port so I received my treatment through iv. My treatments lasted about 9 hours and the infusion was painful. If I am diagnosed again, I don't think I will leave the doctor's office without getting a port :)

After the eight rounds of chemotherapy, I was told that there is no evidence of disease. The trial I participated in was a Phase 2 trial that did not advance to Phase 3. Out of the 54 women on the trial, 31% (17 women) responded. 16 of those women had a partial response, one had a complete response. I was that complete response.

In 2016, I felt some enlarged lymph nodes in my neck which prompted my ONC to do a PET scan. It turned out that the nodes in my neck were nothing but one node in my pelvis lit up. The treatment plan was 28 days of radiation accompanied by weekly chemotherapy. After finishing treatment and follow up PET scan, I was once again told there is NED.

How I felt after treatment: My first treatment wasn't horrible. I mostly felt tired. I wasn't feeling terribly nauseous so decided to stop my anti-nausea meds which wasn't a good idea at all. Subsequent treatments I was faithful to the anti-nausea meds. As my treatments progressed and my body became more toxic, the treatments became more grueling. After treatment I stayed in bed for 4 days and then would force myself out of bed and walk around the block to help me regain strength. It took about 6 days for the fog to lift after treatment.

What was most difficult for me: Having to give up my responsibilities as a mother during my first diagnosis was very difficult. Friends and family had to step in and care for my children during my treatment. It was difficult missing their sporting events and school programs because I didn't feel well or couldn't be around others.

Telling my children and my parents that my cancer had recurred a second time was the hardest thing I have ever had to do. I believe it was harder for them as well. This time they knew what the statistics were for recurrent cervical cancer because they had heard me rejoice about beating the odds after my first recurrence. My boys were more involved in my treatment this time which might have helped them in some way.

Survivorship has been a challenge in regards to navigating. Realizing the severity of my recurrent cervical cancer diagnosis after treatment is a difficult thing for me to comprehend.

What I did to help myself: I exercised as much as I could. Staying active as much as I could helped my mental strength to get through treatment. During chemo treatments, I focused on soaking the chemicals in to fight the cancer. We often think of chemo being a bad thing. It's effects are awful but it's there to give our bodies the help they need to fight the cancer cells. I welcomed the chemo in so it could help me and my body could rest.

My life after cancer: Everyone in my life, including myself, thought that the day after I heard the words "no evidence of disease" my life would revert back the same that it was the day before I was diagnosed. It would not. I didn't expect the difficulties of survivorship that I experienced from a self imposed, as well as from others around me. I am now divorced as part of the fall out of cancer. Having said that, I would not change the person I am today or who I have become because of my diagnosis.

Where I am today: I am a healthy, happy mother of two sons. I spend my time running a charity with my friends that helps others with cancer and speaking out as a survivor voice in support of the HPV vaccine. While my life has changed drastically, I most enjoy CrossFit, running, and enjoying time with my sons and close friends.

What I want other women to know: I often hear from other women throughout the country who are facing a recurrent cervical cancer diagnosis who are looking for hope. I want my story to give those women hope. Against the odds I am typing this today and I am so grateful to be doing so.

How I will try to help others: I'm happy to share my story in any way and speak to other women who may need me as as a resource to be hopeful after their diagnosis, particularly a recurrence. I believe strongly in the HPV vaccine and would like others to know what having recurrent cervical cancer is like and how the vaccine can prevent others from enduring what I did. I would like to work towards having legislature making the HPV vaccine mandatory for all teens.

Any additional information you'd like to share: 2.5 years after finding out I was NED, I decided it was time to send cancer another message and I trained for and ran my second marathon at a time that was 40 minutes better than before cancer. Cancer chose the wrong woman.