Survivor Stories – Ovarian Cancer 101

Survivor Stories

Survivor Stories

Kim L.
I’m 44 years old and I consider myself a cancer thriver. I’m the third generation in my family to have ovarian cancer. My paternal grandmother was diagnosed in 1977 at the age of 71 and died within 1 year.  She was treated with platinum chemotherapy.

Almost 20 yrs later, in 1994, my mother was diagnosed at the age of 64. She was also treated with platinum chemotherapy and thankfully she’s now a 21 year survivor.

Then 15 yrs later, I was diagnosed in 2009 at 38 and I too was treated with platinum chemotherapy. Three generations of diagnosis’ spanning almost 40 years and the standard of care has barely budged!

About 5 years before I was diagnosed, I changed gynecologists. She took a family history on me and noticed the high incidence of breast and ovarian cancer on both sides of my family.  She put me on a high risk which included staggered transvaginal ultrasounds and pelvic exams, along with breast mammograms and MRI’s every 6 months.  They were also tracking my CA-125. This was called “screening”. They were screening me for breast and ovarian cancer every 6 months. So how could it happen that I was diagnosed with stage IV ovarian cancer?

Like anyone who’s been diagnosed with cancer, I remember that day like it was yesterday. I had gone in for my annual transvaginal ultrasound. I wasn’t having any symptoms – I was healthy and active, and didn’t suspect a thing. The tech did her thing with the phallic wand and then the radiologist came in like usual and she did her thing. The only thing that was different this time was that she said that my ovaries looked enlarged. I didn’t have any symptoms though so I really didn’t think anything about it. She said she needed to call my Ob/Gyn and still ….I didn’t think anything about it. She put me on the phone with my Ob/Gyn who said I needed to come to her office immediately, and still… I didn’t think anything about it. I drove out to her office immediately, and the first thing that she said was that she had already set up an appt at Dana Farber for the following morning. And that’s when it hit me.  Hhhhmmm, I thought,…. DF?  Everyone knows when you hear DF you think cancer. But I still asked her…. “Why DF”?  She paused ….and she looked at me ….and that’s when she realized that I didn’t know yet…that the radiologist who had been doing my screening for the past 5 years didn’t actually tell me anything, and then she said those 3 words that changed my life forever “You have Cancer”.

The cancer was in both ovaries and it had spread to the omentum, appendix, and the pelvic wall; it encased my bladder and uterus, there were nodules throughout the abdomen and it was in my right lung. It’s not that I expected it, but I wasn’t particularly shocked and I wasn’t paralyzed by the diagnosis. I went into planning and research mode. My gynecologist was awesome through this, she paved the way for this to be ok for me. She set up a 2nd opinion with another Gyn/Onc surgeon, and spent lots of time discussing the pros and cons with me. I had surgery 2 weeks later and was optimally debulked, and then started chemo in a trial. At the end of treatment almost  5 months later, I was ruined – I had lost 25 pounds, I was on daily IV fluids at home, I was weak and I was sick from the chemo – but I was clean! I had met NED, No Evidence of Disease , and I planned on shacking up with him for the rest of my life.

Hindsight is often 20/20. In the year before I was diagnosed I put on 10 pounds or so. I don’t think my life style had changed- My job was the same, my stress level was the same, my eating habits were the same, my exercise pattern was the same….. so, perhaps my doctor should have taken note of this. In addition, I actually did have a symptom which started about a year before I was diagnosed. I had pain in my upper right lung. I saw a pulmonologist who said I had pleurisy and put me on indomethacin to reduce inflammation. This is a very uncommon event for a healthy young woman, and he should have looked for the cause. The symptoms mostly subsided with the NSAID, but of course the real diagnosis was that the ovarian cancer had spread to my lung.

I never took my diagnosis as seriously as I should have. I was diagnosed with a stage IV cancer that had a very low survival rate and an even worse recurrence rate and I didn’t change a thing in my life. I thought this was a temporary hiccup where I’d have surgery, some chemo and voila! I would be done with that chapter of my life, never to be revisited again. Well, here I am 6 years later; I’m in the midst of my 3rd recurrence and I’m learning to live with my cancer. I don’t spend much time thinking about NED anymore  – instead I think about it like diabetes: it’s a chronic disease that needs to be managed and is likely to be with me forever.

 

Gail M.
I am a 5 year fallopian tube/ovarian cancer survivor.  Many people complain about their age but I am happy to say I am 51 years old.   I have an amazing husband and three wonderful teenage children.  We have lived in Rhode Island where I spend my time as a family manager, homeschooling my youngest son, running a home based educational audiology business,  and being involved in my church.

My cancer journey began in July of 2011.  I was having diarrhea every time I ate so I went to my primary care physician.  He started me on a lactose free diet and sent me for an ultrasound of my gall bladder.    There was no improvement with the lactose free diet and my gallbladder ultrasound results were normal.  He then referred me to a gastroenterologist.  The  gastroenterologist scheduled me for a colonoscopy on September 27, 2011.  These results came back normal and I was diagnosed with irritable bowel syndrome.  The gastroenterologist told me that I needed to eat more fiber.

After my colonoscopy my symptoms quickly worsened ( I always wondered if the colonoscopy procedure shifted one of my tumors or something).  I not only was having diarrhea  but also began having abdominal pain and bloating.  The end of October I went back to my primary care doctor ( It was going to take several weeks to get back in to see the GI doctor).  My doctor prescribed Bentol to help with the cramping.   My symptoms continued to worsen.  I remember that Thanksgiving like it was yesterday . I ate a little bit of Thanksgiving dinner and then excused myself because I felt so sick.  I thought “wow if this is the way people with IBS have to live what a miserable life”.  Through all this it never crossed my mind that I might have cancer.

Right after Thanksgiving I started a new job and decided to go shopping for some new clothes.  That night my husband went shopping with me (yes that in itself is a miracle).  As we were picking out and trying on clothes he noticed that I had dropped 2 clothing sizes.  When we got home that night we discussed my symptoms of diarrhea, abdominal pain, bloating and weight loss.  I also had an aggravating cough.  My husband is a physician and he became very concerned.   I started crying and told him I didn’t know what to do.  I had been to doctors and it seemed this was the best I could be with IBS.  He adamantly told me that these were not signs of IBS.  He told me to call the GI office the next day and insist to be seen that day. I was reluctant since I had just started a new job and didn’t have any time off.  He insisted!  I was seen the next day by the physician’s assistant.  She ordered a CT scan.  Looking back I can still see the look on the CT techs face as she offered to give me the results on a CD, handed the CD to me and said “good luck”.   At this point still none of my doctors or myself suspected ovarian cancer.

The GI office call me the next day and scheduled an appointment for me to come in to talk about the results.  This is when my husband knew it was cancer although he admits to thinking it was pancreatic cancer. Thankfully he was wrong.    The PA was a young lady who I would bet had never delivered such news.  We talked with her for about an hour but truthfully all I heard was “you have a tumor the size of a baseball in your abdomen”.  She proceeded to talk about the other findings but I was already in shock.  My husband was knowledgeable enough to continue to ask questions but truthfully there was a point when tears came to his eyes and he said “We are full.  We really can’t absorb any more information”.    The PA said the next step was for me to see an oncologist and recommended a referral to an oncologist at a community hospital near my home.   My husband asked if there was a gynecology oncologist in  Rhode Island.   On December 23, 2011 I was in the gyn-oncology office and heard them say that the tumors were probably cancer. The cough was from plural effusion and the abdomen showed ascites.  It seems like almost overnight I was thrust into the medical milieu.  I felt myself just barely able to dog paddle through all the terms and decisions.  Thank God that my husband was able to help me.  There were decisions about surgery options and outcomes, information about chemotherapy, clinical trials, living wills and durable power of attorney’s.     One of the most memorable moments during that visit was when I was leaving the office the Doctor put his hand on my shoulder in a very kind gesture and said “we are going to get you through this”.  The power of touch should not be underestimated.

Two days before Christmas we left the gynecology-oncologist office to return home to our 3 children ages 8, 10 and 13.  The question was” when and how do we tell them this news?”.  We decided to try to keep our Christmas traditions as normal as possible and tell them right after Christmas.   On December 26th the  doctor called and said the CA125 tumor marker was elevated .  Surgery was scheduled for December 30, 2011.  The pathology report confirmed fallopian tube cancer and a left oophorectomy with tumor debulking was performed.    I began chemotherapy on Jan 6, 2012 and had a second surgery which included a complete hysterectomy, tumor debulking, and removal of the omentum on March 13, 2012.

I was accepted into a clinical trial which dictated having chemotherapy weekly. The drugs carboplatin, Taxol and Avastin were administered in differing doses over a 3 week cycle. I feel so blessed that my body tolerated the drugs without adverse outcomes.   The way I describe chemo fatigue is that my legs felt like lead and it took every ounce of energy just to move my legs to walk. The physical and emotional stress was overwhelming for both me and my husband.  Today when I meet cancer patients one of my biggest recommendations is to find a counselor or cancer coach.  My faith, family friends and counselor carried me through this difficult time.

By the end of 6 months of Chemotherapy my  doctor reported there was no  more indication of cancer.  Now, 5 years later, I am still receiving IV infusions of Avastin every 3 weeks as part of a clinical trial.  Avastin is a tumor inhibiting drug.  I will continue the Avastin until the side effects (high blood pressure)can’t be managed or the cancer returns.  This cancer diagnosis has changed my life, in many ways for the good.  Our family motto is “Every day is a Gift, Every moment a blessing”.  I am not ashamed of my age.  My family celebrates each birthday as an amazing milestone.  I am so glad to be alive!!!!!  I have learned that there are so many wonderful people and organization waiting to help cancer patients and their families.

 

Julie S.
Teaching and working as an administrator in a family nurse practitioner and for a doctor of nursing practice program, life was busy.  I have 3 children and 6 grandchildren to keep life fun and interesting.  I have had symptoms from irritable bowel syndrome (IBS) for as long as I can remember.  Because of this, the worsening bloating, abdominal cramps, low back pain, and indigestion I was experiencing was easy for me to attribute to increased stress at work, home, fatigue, and my stress/fatigue poor eating habits.   I actually found a functional medicine doctor and she found my inflammatory markers were very high and started me on some anti-inflammatory supplements.  After many months of worsening symptoms, I developed a new one – it felt like I could not empty my bladder, and it was uncomfortable driving over bumps in the road.  I tested my urine to see if I had an infection, but that was negative.  It wasn’t until one night, at about 1 am when I could not sleep because I could not get comfortable, that I sat upright and realized that something was terribly wrong with me.

Although I work as a nurse practitioner, and had worked for a few years in women’s health, I still did not consider ovarian cancer as a possible differential diagnosis.  I did get my menses at a young age (11 years old), and I did not go through menopause until age 54, but I was more focused on believing maybe I had developed an intestinal abscess or something related to my GI tract.  Since I knew how long it could take to figure out what was going on if I waited until morning to try to get an appointment with a primary care provider, I decided to go to the local emergency room and hope to get a CT scan.

The ER doctor did not think anything would be seen on the abdominal CT scan since he also thought my symptoms were related to a flare of IBS, and my bloodwork was normal.  However, the look on his face when the radiologist called him let me know something serious truly was happening to me.  They thought it was just a very large ovarian cyst, but I needed surgery soon.  I went home and called my own gyn doctor when the office opened up, but he was away on vacation.  I spoke to one of the other physicians there who I knew well, and he suggested the visiting specialist from Yale should see me and do the surgery.  Turns out that this specialist was someone I had traveled on medical mission trips in the past and I was fortunate that he was able to fit me in that same day.  I was traveling to visit relatives in Norway in 2 weeks, so I was glad we were able to schedule surgery for the next day, even though he was fitting me in between big surgeries and only had time to remove the ovary and “cyst”.   I was stunned to wake up in the recovery area to my surgeon telling me I had ovarian cancer, stage 3 B.

I knew that ovarian cancer is a lethal cancer, and I recalled saying to classmates that I would never know if I had ovarian cancer because the symptoms were the same and most of my irritable bowel symptoms.  Now this had come to be reality for me.

My surgeon/oncologist decided to treat me with chemo for 4 cycles and then have my big surgery in the fall.  The aim was to shrink all the other spots that he had seen the cancer had spread to, including my diaphragm, and other ovary.  While the chemo was pretty easy in the beginning, the cumulative effects made the side effects of fatigue and nausea last longer each time.  I was fortunate to have flexibility at work and a supportive family.

The surgery was fast and totally debilitating! I hadn’t spent much time thinking about it beforehand – it was just one of the items on my Things To Do To Get Better list.  I had 30 staples running down from above my umbilicus down as far as the eye could see.  I needed family and friends to help me move in bed, and go to the bathroom for almost a week. Even the second week I needed people checking in on me a lot – I was told not to lift anything heavier than a milk carton and still couldn’t drive.   When I went for my follow up I asked the nurse to print out my pathology report for me to have.  Reading that report was sobering. I hadn’t realized how protective the mind can be, that some form of denial resides in all of us to some extent.  When I mentioned to my partner that I was stunned there were positive biopsy incisions from my diaphragm, appendix, other ovary, uterus, sigmoid bowel, etc., he looked at me and said they had all told me that back with the original surgery.  I had really downplayed what I heard them say.  I felt even more gratitude for the wonderful oncology surgeon I have.

Finally, moving ahead – starting chemo round 2 (November 2013).  This time around it will be once a month – still nausea to look forward to, as well as possible skin rashes, blistering, including mouth sores, not to mention no hot showers during the cold winter.  However, this is an important step toward moving to full recovery and No Evidence of Disease!

 

Michele W.
In June 2011, at 58 years old, I was diagnosed with ovarian cancer. I was healthy (I thought), active and busy. As the Director of Mathematics for a CT public school system, I was responsible for kindergarten through 12th grade mathematics, often a demanding task.

I hadn’t been feeling well for a few weeks, but was so busy at work I didn’t really want to take the time to investigate. My husband insisted that I see a doctor because it was so unusual for me to feel poorly. I was exhausted and nauseous quite often (and I am rarely nauseous.) My other symptoms were backache, some bloating and a general abdominal discomfort and tenderness with periods of sharper intermittent pain (throbbing, pulsating) in my lower right side. I also noticed that the pain was sharper if I sat down hard or during my early morning walks. I self-diagnosed appendicitis and made an appointment with the physicians assistant at my doctor’s office.

At the office I was assured that appendicitis was unlikely.  I was told I probably had a stomach virus and would be fine in a few days. I experienced a rapid debate inside of my head  — “Ok, no big deal, I’ll wait it out” vs  “But wait, I never get stomach bugs.”  I usually choose to just tough out any physical ailment but this time I spoke up – “I am rarely sick and I am concerned.” I am very lucky that the physician’s assistant listened to me, agreeing that the only time they ever see me was for my yearly exam. She ordered a CT scan (my first one ever.) After the CT scan, I received a phone call informing me that there was 7 cm x 3 cm cyst on my left ovary. I remember thinking how weird that was because all of the discomfort was on my right side. I said ok, I would call my gynecologist for an appointment. I was not overly worried. A cyst is no big deal, right? Before my gynecologist would see me I was sent for an abdominal and transvaginal ultrasound (also my first ever), and more blood work.  I noticed “CA-125” on the blood work paper and googled it when I got home.  At that moment I realized that this could be very serious – ovarian cancer??? The extent of my knowledge about ovarian cancer was that Gilda Radnor had died from it. Two days later, a Friday afternoon, I saw my gynecologist. She sat down in front of me and took both of my hands in hers, and told me that the tests indicate I have ovarian cancer, but it looked like an early stage. I had just seen her in March and there had been no sign then. She referred me to a gynecologic oncologist at a nearby hospital who could do the surgery robotically, which would be less invasive and an easier recovery for an active person like myself.

In just the span of only 10 days, my world changed and narrowed to this single diagnosis and what the future would bring. Four days later I met with the gynecologic oncologist who reviewed the CT scan, ultrasounds, CA125 results, examined me and then discussed my options, surgically. She suspected that my cancer might be Stage 2. Because of that we decided together that robotic surgery was not my best option and planned a full abdominal hysterectomy for Friday morning, just 3 days away. I spent the days in between preparing my family and organizing my workplace for an extended absence of probably 6 weeks, or so I thought.  I had delayed telling my youngest son because he had just become engaged over the weekend and I did not want to spoil the joy of that moment. When I look back on that time now, I realize that I was functioning on the outside trying to protect everyone else,  and terrified inside. I never considered second opinions or looked at alternative options. My only thought was to get this horrible thing out of me.

When I awoke from surgery on July 1st all I could see was my husband’s smiling face – the cancer was localized to the left ovary – Stage 1a. The relief we both felt was incredible. My surgeon told me that I would not need chemotherapy so she had not put in a port, as originally planned. I spent 5 days in the hospital (another first for me, except for delivering two babies.) That was the last of the good news for awhile.

Three days into my recovery at home, I awoke on a Saturday morning, covered in fluid and blood. Terrified (again) we made an immediate trip to the emergency room. My surgical wound was infected and required reopening. It was very hard to comprehend what the doctor was telling me, that my surgical wound must remain open to heal from the “inside out,” it just sounded so unnatural, and horrible.  I was “packed” with gauze and given an antibiotic. Four days later I was put on a wound vac. A visiting nurse came to the house twice a week to change the wound vac, and once a week I went to the doctor’s office to be checked. My initial reaction was right – it was an unnatural and horrible experience that last for months!

At my first follow-up visit with my gynecologist/oncologist (12 days after the surgery), I learned that the pathology report was not good news.  The cancer was clear cell carcinoma, which occurs in 5-13% of ovarian cancers. Because clear cell is fast growing and aggressive, and more lethal; chemotherapy would be necessary after all to improve my prognosis. I began chemotherapy 6 weeks after the surgery (I delayed it an extra week so that we could go to Vermont for my step-son’s wedding. That was quite a trip, but I made it, wound vac and all!) I received 6 carbo/taxol treatments, 3 weeks apart, intravenously. The day after each treatment I had amazing energy thanks to the steroids, but the following 4 days were always difficult – extreme fatigue, neuropathy, little appetite, eyestrain. And yes, I lost my hair, but with a nice wig and a positive attitude, it was not the worst part of the whole ordeal.

Three months after my surgery when the wound vac was removed, I returned to work part-time although my surgical wound was not completely healed. It took another 10 weeks of packing with silver and then medical honey for the wound to fully close. Healing was significantly delayed because of the chemo treatments during those months. My life consisted of working until noon each day, resting whenever I could, chemo treatments every 3 weeks, praying that the surgical wound would finally heal, and that I would have hair again someday.  Somehow, with the loving care of my husband, family, and friends, I made it through it all. I cannot stress how critical it is to have that support.

After completing my chemotherapy treatment, I began working full-time again in January 2012, 6 months after my initial surgery.  Around that same time, I developed lymphedema in my right leg due to the removal of all my abdominal lymph nodes during the surgery. Lymphedema is another story altogether, and in some ways seems worse than the cancer. I was blindsided by this –  no one ever mentioned the possibility of lymphedema to me and yet 20-30% of gynecologic cancer survivors will develop lymphedema in their lower limbs. It is an incurable progressive condition and alters one’s lifestyle and self-image dramatically.

I retired in July 2013 so that we could move aboard our sailboat and travel south to the Bahamas for 8 months, which we did twice in the past five years.  We had dreamed of this for over 12 years, but put it aside after I was diagnosed with cancer.

When all is said and done, I do consider myself to be a very fortunate woman, able to live a full and rich life in spite of cancer and lymphedema. My ovarian cancer was caught early, which makes all the difference in the world. If I had not questioned the “stomach virus” diagnosis and if the physician’s assistant had not been responsive to my concern, my story would be very different. As a survivor, cancer will always be a whisper in the back of my mind that is never completely silenced. But that whisper has also had a positive impact by reminding me, every day, to live my life to its fullest, whatever that may be, enjoying and treasuring each moment, large and small.

 

Althea L.
I am 61 years old, was 60 when diagnosed with Fallopian Tube Cancer on February 8, 2017. Currently married, live North of Boston, have two adult children (Daughter age 24, Son age 27 who both live out of state). Active type a person, busy, love being an empty nester, tennis player, scrapbooker, gardener, and love to travel. Professionally, I have worked in Healthcare Human Resources for over 30 years and I love my job/career. I also teach graduate Master’s level classes at Suffolk University Sawyer Business School Healthcare Department in Boston. Prior to my diagnosis I would say I was the happiest I had been in many years with a new found sense of freedom and ability to focus more on my needs and desires.

DIAGNOSIS:

In December of 2016 before Christmas I noticed I was spotting/bleeding. It raised concern but I was having a full house of visitors/family over the holidays and was mostly focused on having a wonderful meaningful time with my family. After New Years I contacted my PCP via email and told him about my symptoms which resulted in a referral for an ultrasound. The ultrasound revealed that I had an enlarged right ovary. My PCP ordered an MRI and also referred me to a gynecological oncological surgeon (GOS). He was very clear in his communication with me that he was not referring me to an oncologist because he thought I had cancer, but because those types of physicians know everything about anything “abnormal”. Subsequently, the MRI results also revealed a right enlarged ovary.

We secured an appointment with the GOS within 8 days of the abnormal MRI results.

The day of the appointment with the GOS I was trying to maintain my calm but felt like my fate was about to be determined. We met with a resident who did the initial screening and then they brought the physician in to meet with me and my husband. We discussed in depth my symptoms, history, physical health etc. She reviewed the MRI, Ultrasound and indicated that it did not look like any form of cancer or mass. In speaking with her there was no real explanation why my right ovary was enlarged and what was the cause of the bleeding. She then performed an internal exam and discovered a small polyp on the cervix (which she removed) which she thought may be the cause of the bleeding. At this point she was not concerned that I had any symptoms or indications of Ovarian Cancer. In summary she indicated the options were as follows:

  • Wait and see and re evaluate in 6 months.
  • Have laparoscopic surgery and remove my ovaries.

My husband and I seemed to be very comfortable at that moment with option 1-Wait and see and re evaluate in 6 months. We left the physician feeling very relieved, had lunch, talked it over and were feeling very comfortable with the decision of waiting 6 months.

The next morning…….I awoke early, flew out of bed with a very visceral response/reaction…thinking… there was no way we were going to wait 6 months to wait and see!! I immediately emailed my PCP and asked for his advice. His response was: “When in doubt, take it out”. I then went to work that day and approached a gynecological surgeon who I work with. I told him what has gone on, showed him the written reports and shared with him that I was having serious doubts about waiting 6 months. He looked at me very seriously and said:”Althea, sometimes you just don’t know until you get in there” My decision was made….I was going to have the surgery. Meanwhile, the bleeding/spotting did not subside, despite the removal of the polyp. This made me that much more sure that something was not right. The next day I contacted the GOS and informed her I wanted the surgery. Things started to be set in to motion in setting up preoperative appointments and a surgery date. Meanwhile, the bleeding/spotting continued. I had my preoperative appointment with the GOS about 8 days before my surgery where we discussed the upcoming surgery, the risks, the possible need for a total hysterectomy etc. I signed all the waivers/consent forms and told her that I was fine with a total hysterectomy. I also asked if there was a chance that I could still be bleeding/spotting after the surgery to which her response was “possibly”. I was not happy with that answer. She then examined me and did a minor procedure (not sure if it was cauterizing?) but she said it should stop the bleeding. I left the office and felt really good with my decision to have surgery. We arrived for my surgery on February 8, 2017. I was put under…thinking the procedure would take 1 ½ hours. Later on I was awaken in my room by my GOS but it was all very fuzzy. It was like I was looking at her through a cloudy tunnel.. all I could hear her say was “you have cancer, you will need chemotherapy and you will lose your hair” ..I looked up in my room and clock said 7:30 PM. I learned the procedure took 6 ½ hours and I had Stage 1 High Grade Serous Carcinoma of the Right Fallopian Tube.

Post-Diagnosis:
The recommended treatment plan was to get 6 rounds of Carbo/Taxol three weeks apart. We decided to get my care at a major teaching hospital in Boston. My first chemotherapy treatment was on March 17th about 6 weeks post op. The experience was like you would imagine: unpredictable with various hiccups, low WBC counts, disappointment, cancelled chemotherapy due to counts, neulasta shots that didn’t work, Neupogen shots that worked, self pity, bone aches, flu like symptoms, nausea, fatigue, insomnia, depression, marathon chemotherapy sessions.

Current:
Finished my last chemotherapy July 14, 2017. Anxiously waiting regaining my strength and energy, growing my hair back and resume as normal a life as possible.
Phase 2…..tested BRCA 2 positive…..More to come…..TBD

 

Meg S.
I was diagnosed with stage IIC ovarian cancer in June 2007 at the age of 50. I’m a retired Nurse Practitioner who was working in primary care at the time. I’ve always been very active and at that time I considered myself at the peak of fitness having just scored 100 on my annual Air Force fitness test.

In hindsight, my symptoms started as much as a year before what eventually developed into the more commonly cited symptom of pelvic pain. I’d experienced intermittent nerve type burning pain in a muscle high on my inner left thigh. It persisted to the point that I mentioned it to my PCP who referred me to a neurosurgeon. A lumbar X-Ray found nothing in my spine that would explain the pain. I didn’t think much more about it and it actually resolved on its own, only to be followed by burning pain down the lateral side of my left leg all the way to my ankle. I thought OK so now I must have nerve pressure in my spine.

During this time I was also having Pap smears and pelvic exams every six months for cervical changes that developed at the time of menopause, which for me was confirmed at age 47 through hormone studies. So, for three years prior to diagnosis I had a pelvic exam every six months. There was nothing untoward about any of those exams and I’d just had a LEEP procedure for the cervical changes in April of 2007.

In March of 2007 I underwent my first colonoscopy and I credit this test with saving my life – not from colon cancer, but from ovarian cancer. The first post exam bowel movement triggered pretty severe pelvic pain. I was at work and an NP colleague who had been through the exam several times said that she hadn’t ever experienced pain so of course I’m thinking ruptured bowel. But… the pain went away and all was well. Until it started to recur. I started doing abdominal exams on myself but found nothing unusual. This went on for almost two months.

In late May, just before leaving on my annual two week tour for the Air Force Reserve, I felt a mass in my LLQ/groin area that disappeared as soon as I pressed on it. Ah Ha I said to myself, I gave myself a hernia lifting litters during that last AF exercise. Whew! I can deal with that when I get home from tour, which was to Hawaii by the way so I wasn’t about to back out at the last minute for a hernia. I kept checking on it while on tour, only to be alarmed by how it stopped sliding away and in fact started to grow. It grew to the point that when lying on my back, the left side of my abdomen was noticeably protruding more and more.

I called my GYN from Hawaii, to be told by staff that I needed to call my PCP since the mass was in my abdomen. So I called my PCP who saw me at noon the day after my return from tour. I had a transvaginal US at 1:00 and was sitting in front of the GYN Oncologist at 3:00. My total hysterectomy and staging was done three days later.

The telling moment when I realized that the thigh and leg pain I’d been having for so long was related to my tumors was after surgery when the pain was totally gone, never to come back. The tumor must have been impinging on spinal nerves deep in the pelvis.

I actually left the hospital with a diagnosis of only Serous Borderline Tumors on each ovary but not cancer. The right ovary had flopped over and fused to the left ovary and then grew together. I learned of the cancer diagnosis during my post-op visit when my surgeon said, as the nurse was removing staples from my incision, “Well, they did find some cancer cells on both ovaries”.  My first reaction was “Oh Shit” and I’m not one to swear! She went out to get my husband and the three of us talked about it. My marker, the CA125, was 79 which alarmed me but if it alarmed her, there was no sign of it. I have since realized that it could have been much higher as you may hear (or have heard) from other presenters today. It actually was down to within normal limits at 29 even before chemotherapy.  My surgeon would have staged my cancer as IC based on how my abdomen looked and frozen sections taken during surgery but the pathologist’s final staging was IIC due to some microscopic implants found on the left tube.

My husband helped set the stage for our emotional journey when he said as we were having lunch after receiving the diagnosis “We’ll just do what we need to do.” I did lose it once while waiting for recommendations for a medical oncologist. It seemed to take forever to get things going. Once treatment started I felt very calm. I was doing all that I could to ensure a successful outcome.

I underwent six rounds of chemotherapy with carboplatin and Taxol. I had one hiccup after the first round when I spent a night in the hospital in Bar Harbor, Maine with severe neutropenia and fever. Yes, I went on vacation after my first treatment. After that I received a Neulasta injection 24hrs after each round of chemo to boost my white blood cell production. That got me through treatment without any actual infections.

I didn’t work during my treatment and ended up being on leave for almost eight months. With the neutropenia, I wasn’t able to expose myself to the bugs that come to a primary care office on a daily basis. I went back to work in March 2008.  In May of 2008, six months after my last treatment and only two months after being cleared to resume my full exercise regime, I once again scored 100 on my AF fitness test! I do feel that I have recovered fully from chemo except that my hands and feet get painful at the first sign of being cold.

I had BRCA gene testing after treatment ended because I was adopted as an infant and don’t know my family history. The test revealed variants of undetermined significance on each gene which have been reclassified over time. The BRCA2 variant is considered normal but the BRCA1 mutation is now considered pathologic. I’m considered at high risk for breast cancer. To deal with this, I have a breast MRI as well as a mammogram every year. For several years I lived just waiting for the other shoe to drop so to speak but that feeling has subsided. I had another hiccup just last August at my 10yr annual check-up when my CA125 was up from 17 in 2016 to 22. Still considered normal but a change. I waited another two months for a repeat that came back at 16 so I could officially celebrate 10 years cancer free!

 

Sarah L.
I was diagnosed with Stage IIIC ovarian cancer a little over three years ago, when I was 51 years old, just days after running the 2011 Boston Marathon.  Looking back now, I realize that I had been having symptoms for ovarian cancer for about nine months, but I had no idea then that I was so seriously ill.

I had never been the type to go to the doctor much—I hated the thought of “crying wolf”—but I had visited my primary care physician three times over the nine months preceding my cancer diagnosis, for symptoms that I now recognize as typical ovarian cancer symptoms: intermittent pain (sometimes sharp) in my abdomen (especially when coughing, laughing or doing the “superman” core strength-training exercise); abdominal bloating; a feeling of becoming full quickly (even after doing really long marathon training runs); and urinary symptoms, including frequency and urgency of urination, and also really annoying urinary incontinence while doing my long training runs for the marathon. Another minor symptom, which one doesn’t often hear much about, is that my belly button, which had been an “inny,” switched to an “outy” (presumably because of some inner pressure)—this is something my daughters noticed on a warm-weather family vacation that winter.

Over these months before the diagnosis, my primary care physician and her associates in the office tried various remedies: They prescribed antacids, then did an ultrasound to search for gallstones, then suggested that I might get checked out to see if I had an ulcer, and then also suggested that I consider a urinary incontinence class for post-menopausal women, while mentioning, though, that I was a bit young to need such a class.

During all this time, I didn’t worry too much about these various symptoms. I was very busy that year with my teaching and research, and with my marathon training—for before the Boston Marathon in April, I had run the Bay State Marathon in September to get my qualifying time for the prized Boston Marathon. I was also busy with my two wonderful teenage daughters and beloved husband, and I felt, really, in glorious good health. The few minor aggravating symptoms I had, I myself chalked up largely to menopause. All these symptoms went away after I was later treated for ovarian cancer, however, so don’t be fooled like I was: I was wrong in my self-diagnosis of menopause.

Well, finally, my stomach grew so large and bloated—and I was feeling so full and unable to eat—that even my daughters and friends urged me to see the doctor again.[1] This time my physician finally suspected ovarian cancer and performed the recommended diagnostic tests: She did a pelvic and rectal exam, ordered a CA125 blood test (the blood test commonly used to detect ovarian cancer) and ordered a CT scan. When I returned the next day and received the terrible, frightening diagnosis of ovarian cancer, my primary care physician immediately sent me to a gynecological surgeon specializing in cancer treatment. He was able to squeeze me in for surgery just five days later.

It turns out that I at that point had stage IIIC ovarian cancer, with small tumors and cancer lesions covering not only my ovaries and fallopian tubes, but also my whole abdominal or peritoneal lining. In addition, I had an ovarian-cancer-related tumor on my omentum, one in my small intestine, and one higher up in my abdomen touching my spleen and stomach. My surgeon reported that the tumor in my small intestine would have caused a complete bowel obstruction within one week or less, if I hadn’t had the surgery in time. After the surgery, the surgeon told me he was “heartbroken” to see the extent of the cancer inside, and informed my husband that I only had one to two years to live.

Yet this surgeon—one who specializes in gynecological cancers—did a tremendous job removing the tumors and scraping the abdominal wall to clear me of as much cancer as possible before I began chemotherapy. The chemotherapy,[2] although difficult to endure, also worked wonders.

So, it is now almost seven years since my ovarian cancer diagnosis, and I am very fortunate to have the status of “no evidence of disease.” I’m back to running, cycling, doing yoga, teaching and researching, and living life vibrantly, absolutely delighted to be alive and in such good health.

As you know, however, the chances of recurrence of ovarian cancer are high, so I can’t yet take my longevity for granted.

Regarding risk factors: there’s one important element of my story that I haven’t mentioned yet. There is a lot of breast cancer in my family, and the risk of ovarian cancer increases quite significantly if one has a personal or family history of breast, colon or ovarian cancer. Because both my mother and maternal grandmother had bilateral breast cancer (cancer in both breasts), and at quite young ages (before menopause), physicians over the years had warned me that I had an increased risk of developing breast cancer. So, I took that risk seriously: I had yearly mammograms beginning at age 30 and performed regular self breast exams. Yet no physician had ever told me that I was also at elevated risk for ovarian cancer, or ever told me what kinds of symptoms to look out for to alert me that I may have ovarian cancer—such as bloating, feeling full quickly, abdominal pain, or urinary issues.

After I was diagnosed with ovarian cancer, I discovered via genetic testing that I do have the BRCA genetic mutation (just like Angelina Jolie) that puts one at high risk of developing both breast and ovarian cancers. My experience spurred my younger sister to get tested, and when her genetic test also came back positive for the BRCA1 mutation, she underwent a complete prophylactic hysterectomy, thus basically almost erasing her own chances of developing ovarian cancer — which is great news: I’m so happy that my experience has been able to help my sister in this way.

I wish I had known myself, however, how to watch out for and take steps towards preventing ovarian cancer. I wish my physicians had surmised earlier that I might be suffering from ovarian cancer. We know that early diagnosis and treatment are the keys to better survival rates. We need to raise awareness and responsiveness, and that’s why we’re speaking with you today.  Thank you for giving us this opportunity.

[1] This was on Easter Sunday six days after the Boston Marathon. For the marathon itself, I had trouble finding a running shirt that looked good with my bulging stomach. My daughter wondered how my stomach could be growing so large when I was running so much, and my husband replied that lots of women in really good shape develop strong bulging abs. When I had the surgery about two weeks after the marathon, they drained more than 4 liters of ascites fluid from my abdomen!

[2] IV Carbo-taxol: Carboplatinum once every three weeks, and taxol weekly.

 

Barbara P.
Hi my name is Barbara, I am 65 years old and in November 2013 was diagnosed with stage 1A ovarian cancer.  I am very happily married and have 4 children.  I love exercise and have run 5 marathons including Boston.  I work in Information Technology for an insurance company as a Business Analyst.

In early September 2013 my daughter was married.  I was still feeling very excited for her when in mid- September I started having symptoms very similar to a urinary tract infection, went to my Primary Care Physician (PCP) who prescribed antibiotics which after 5 days did not relieve the symptoms and was told  that I didn’t have a UTI and was referred to a urologist.  I visited the urologist who performed a basic exam and didn’t find any sign of infection which prompted an ultra sound of the kidneys and bladder.  In doing that ultra sound a very small growth was detected in my right ovary.  Another ultra sound of the abdominal area confirmed that there was something in the ovary.  I was referred to my GYN who could feel a very small growth and ordered a CA-125 as a precaution and a transvaginal ultra sound.  The next day he called to tell me that the results of the CA-125 were elevated although not alarming, the number was 51.  He had initially scheduled the transvaginal ultra sound for late the following week but moved it up to earlier in the week.  The ultra sound confirmed that there was a growth but it was thought to be benign as there was no blood flow and it was very small.  He referred me to a gynecological oncologist who could also feel something but suspected that it was benign because of the small size.  At that point surgery had been scheduled in 3 weeks however I told him that I wasn’t comfortable waiting that long.  The next day the surgery had been moved to the following week, November 20th.  My GYN started the surgery thinking they were just going to remove the ovary however early pathology reports indicated that the growth was cancerous thus requiring the gynecological oncologist to complete the surgery.  Everything was removed, ovaries, fallopian tubes, uterus and cervix as well as peritoneal fluids and biopsies from organs that are typically impacted by ovarian cancer.  Timeline from symptoms to surgery was approximately 2 months.

The full pathology report took about a week although the gynecological oncologist felt it was very likely early stage.  My husband was the one who told me that it was cancer, although I knew when I woke up after surgery that something was very wrong.  I was put to sleep at about 1:30 in the afternoon thinking I would be in surgery about 1.5 – 2 hours; when I woke up and asked the nurse what time it was she told me it was 8:00 PM.  When I heard that, I knew the surgery had been much more extensive than was originally planned.  When the full pathology report came back the oncologist told me that it was stage 1A but that it was the most aggressive form of ovarian cancer, high grade serous papillary.  At that point it was recommended that I undergo 6 rounds of chemotherapy; I agreed with taking an aggressive approach.  On December 18th I began chemotherapy every three weeks for 18 weeks concluding on April 2, 2014.

Chemotherapy was terrifying to me.  I did not expect cancer in my life although I’m sure no one does.  I have none of the risk factors for ovarian cancer, there is no cancer in my family as far back as I can go which is to my great grandparents.  I live a very healthy life style; no smoking, healthy diet, exercise, moderate alcohol consumption, adequate rest everything a person is supposed to do to be healthy.  Chemo was very difficult.  I was tired the entire time and was unable to run or exercise to the level that I had prior to surgery.  Basically I could walk.  I was used to running, doing crunches, push ups and basically being very active.  There were many weeks when moving from the bed to the couch was all the exercise I got.  My weight fluctuated by 20 pounds depending on the chemo drug I was getting which made me feel either bloated and uncomfortable or totally dehydrated and drained.  I was never sick to the point of vomiting, but for a week after treatment I just felt totally exhausted, sometimes to the point where even standing was a huge effort.

My medical team were all wonderful.  I couldn’t have asked for a more supportive or caring group of people to get me through this most challenging journey.  In my opinion a critical component of the treatment was having the same dedicated nurse who I can and do call upon when I have something going on and can’t figure out who to call.

I am doing very well.  In late August 2014 I was told that I was officially in remission.  I go for follow-up appointments every 3 months and am told that I have a very good prognosis for complete recovery.  I have my own understanding of my body and my doctors to thank for finding this horrible form of cancer at such an early stage.  I know how lethal this cancer can be and I feel so blessed to have found it so early.

 

2018-04-09T13:19:42+00:00
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