Tag Archives: ovarian cancer

Angelina Jolie Pitt: Diary of a Surgery

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Once again, the HBOC community is buzzing. If you haven’t already seen, Angelina Jolie Pitt has published another NY Times Op-Ed. This time about her choice and reasons for undergoing a bilateral salpingo-oophorectomy (removal of fallopian tubes and ovaries). She explains that she has been planning to have this procedure for some time, but recent test results pushed her to go through with it to reduce her risk.

She is careful to point out that this choice is her own and right for her after carefully considering options, but may not be for others. Surgery is not the only option.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

I am again so thankful that she chose to share with the world her genetic status and decisions related to her health. She is bringing global awareness to hereditary breast and ovarian cancer, what many organizations have been striving to do for years. Also empowering women and families facing hereditary cancer to discuss and seek out options available to them.

As I read and react to her piece, I think of my own family history and my health. I lost my mother to ovarian cancer a little over a year ago (29 year old sister to breast, great grandmother to ovarian, and have an aunt undergoing treatment for colorectal). We do not carry any of the known genetic mutations that increase risk of cancer (we are uninformed negative; read old post on the topic), however, my doctors and genetic counselor are convinced something is there, just hasn’t yet been identified. I am managing my healthcare assuming same. In just a few days I will be meeting with my oncologist for the regular bi-annual appointment, which will include the same blood test Jolie Pitt mentions as well as an ultrasound. I know that just like her, the moment those results are abnormal, my surgery will be scheduled. I have also done lots of research and considered other options, but already know this surgery is the right answer for me personally. It will greatly reduce the risk of ovarian cancer, just as the prophylactic mastectomy does for breast cancer. When is the question. I dread the aftermath, which includes surgical menopause, and have thus far been putting it off. Cross your fingers for me.

For more information about genetic mutations, hereditary breast and ovarian cancer syndrome, screening and prevention options, local support group finder, and much more, visit the FORCE: Facing Our Risk of Cancer Empowered website. Talk to your doctor about your family history and whether genetic testing is right for you. To find a genetic counselor in your area, check the National Society of Genetic Counselors website.

One day at a time

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It has been almost a month from the day my right implant was taken out. Since then I have had my drain removed, celebrated my 34th birthday, ordered another breast prosthesis, developed a seroma, had a poking stitch pulled out, scheduled my next surgery for April 9, 2015, had my bi-annual ovarian screening ultrasound, and went to a Boobvoyage party for a friend getting ready for her PBM (which is today), among many other things. It was also breast cancer awareness month, which meant lots of local events representing FORCE and supporting our community. It has been a busy month.

Today, just like any day, I am thinking of my mom. But on this day, I am overwhelmed by grief. It is one year since she died.

I am sad she is not here to celebrate the birthdays, offer her support, or be on the other end of the phone or Skype conversation to share even the mundane little things in life. I am sad that my dad lost his best friend and soul mate. I am sad that my sister is probably feeling the same things I am and that my nephew lost his loving, caring, spoiling-him-rotten grandmother. I am sad that my mom is not here to live her life and take part in ours. I am sad that my family has been so deeply affected by cancer and suffered so much loss. I am sad and still hurting.

Each and every day I think about and miss her.

Fuck cancer!

Ovarian Cancer Awareness Month

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They say that Ovarian Cancer whispers. It is a silent killer. The symptoms are often attributed to GI issues (bloating, abdominal pain, difficulty eating, going to the bathroom often), there is no reliable screening method, and it is hard to find in its early curable stages.

My mom experienced these types of symptoms. By the time doctors took a closer look, they discovered ovarian cancer in advanced stages. She lived for a little over a year. Not a day goes by that I don’t think about and miss her.

Ladies, please educate yourselves about the symptoms and risk factors associated with ovarian cancer. Has anyone in your family been diagnosed with ovarian cancer? How about breast cancer under the age of 50? Male breast cancer? Two members on the same side of the family with any of these cancers: breast, ovarian or fallopian, prostate, pancreatic, or melanoma? These signs may point to hereditary cancer. If you suspect the cancer in your family may be hereditary, it is important to consult with a genetics expert. Find one here.

Ovarian Cancer Fact Sheet

FUCK YOU, Cancer!

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As some of you already know, my mother was diagnosed with ovarian cancer in June ’12 (see an earlier post: mom’s story). She immediately began chemotherapy and had undergone 17 treatments. There were good days and bad days. In the end it didn’t work. Her struggle with this horrible disease and her suffering have ended. She died on November 5, 2013.

I can’t really fully express what I am feeling, but I know many of you understand. Sadness, devastation, fury, frustration, relief, helplessness, resignation, disbelief, emptiness, grief, anger. Right this moment it’s just RAGE. FUCK YOU, Cancer!

One month post-exchange

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WARNING: NSFW / graphic content below.

It has been a month since my exchange surgery and over eight months since my prophylactic bilateral mastectomy. I went from about 184ccs of breast tissue pre-PBM, to 550ccs of saline in overfilled tissue expanders, to 350ccs of silicone gel in my Mentor round, smooth, high profile implants.

2013_10_5 FrontNot much has changed in the last month. I was hoping that the pocket on righty would close up a bit on the bottom, but that has not happened. This means I will most likely have a revision procedure this year to do that surgically. The new girls look fine in clothing, but I am not 100% happy when looking in the mirror. In addition to pocket revision, I am still planning on addressing the nipple asymmetry by removing the tip of the right nipple. I hope to wrap this all up by the end of this calendar year.

My scars are not pretty, but I already know I develop “two year” hypertrophic scars, so I am not surprised. I just started using Kelocote on the incision spots; hopefully this will help speed up their softening.

In other news, I just returned from a two week Europe vacation visiting Venice and my family; I’m excited to be participating in the local 2013 Race for the Cure on October 12th as part of Team FORCE (Facing Our Risk of Cancer Empowered – www.FacingOurRisk.org); and I was also recently featured in another article in the Fall 2013 edition of a local cancer magazine. Here’s my excerpt (changing names, because I want to continue to keep this blog anonymous):

“Mogatos says she never thought much about cancer until about ten years ago, when her 28-year old sister was diagnosed with breast cancer. In the intervening years, she’s had a great deal of time to think about it: she lost her sister to the disease, her mother was diagnosed with ovarian cancer, and another sister is undergoing breast biopsy.

Mogatos began having alternating ultrasounds and mammograms every six months to monitor her own breast health. She also had the BRCA test, which was negative. Once in a while she’d have an MRI, just to make sure everything was OK. Her doctor explained some women with breast cancer in their families choose to have a mastectomy, so she knew that was an option. But she was only in her early 20s, and “I was going along the lines of if it ain’t broke, don’t fix it,” she says.

In March of 2012, the time came to fix it. Mogatos picks up the story: “An ultrasound spotted some issues. Three separate masses were present. They had developed in the six months since the last mammogram. The oncologist recommended an MRI screening. Waiting for test results was hell, but when they eventually arrived, they were good – no cancer.

“In June, I felt something unusual during one of my monthly self-exams. The lump was in one of the three spots where the ultrasound found issues.” Another ultrasound confirmed that two of the three spots had increased in size and were now palpable. Mogatos had biopsies done, and again endured the terrible wait for results. There were some abnormal cells but no frank cancer. She was told to continue her self-exams and keep regular screening appointments. “The inconsistency of the messages I was getting was very hard psychologically,” she says. “I didn’t want to go through this again, having to wait for test results, feeling anxiety, then being relieved, and then ‘oops, maybe we made a mistake.’ I just couldn’t go through that again.” She began considering preventive mastectomy.

She was referred to Dr. M. “When I met him, we really clicked,” Mogatos says. “He brought up things no other surgeon mentioned. I talked to some of his other patients. I felt he’d be a great partner to get me through it.”

When the time came for surgery, she was ready. “I’d researched, I’d read, and I knew what to expect.” She was too lean for the DIEP procedure, so Dr. M placed tissue expanders, and a recent surgery replaced those with Cohesive Gel implants. “I’m ready to be done with the reconstruction,” she says. “It’s been sometimes painful, sometimes frustrating, but I’m so happy I did it. When I look at the big picture, the possibility of getting breast cancer and not making it through, like my sister, I have no regrets. It’s totally worth it. I never have to think about breast cancer again.”

September: Ovarian Cancer Awareness Month

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Ovarian Cancer Awareness

Mom update

My mother was diagnosed with ovarian cancer in June ’12. She is now in the middle of round three of chemotherapy. Three more treatments left until additional scans and assessments are done to determine what the next step will be. Her CA-125 markers are still high – in the 500s. See this post for more of her story.

Angelina Jolie: I decided to be proactive

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AngelinaJolieThe HBOC community is buzzing today. I’m sure you’ve already heard the news: Angelina Jolie underwent a prophylactic bilateral mastectomy in February ’13. She also revealed that she carries a mutated BRCA1 gene in an op-ed piece she wrote for the New York Times.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made.

For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices. – Angelina Jolie

I’m very thankful and excited that she has decided to share her story. Along with Sharon Osbourne, Allyn Rose, Giuliana Rancic, Christina Applegate, Sheryl Crow, and other women in the limelight, she is using her platform to educate and bring awareness to hereditary breast and ovarian cancer. The story was the main feature on the CNN.com website the day the op-ed piece was published!

Just like me, Angelina Jolie had a nipple-sparing double mastectomy and chose the expander/implant route for breast reconstruction. She first had a nipple delay procedure, which is an extra step done two weeks prior to the mastectomy (see: Nipple delay). She had an inframammary fold incision, allograft, and a whopping six (!!!) drains post-op. The Pink Lotus Breast Center, where Angelina Jolie had her PMB, has posted more details of her journey. Read their great blog post.

Related articles:

World Ovarian Cancer Day

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May 8, 2013World Ovarian Cancer Day: today is the first official World Ovarian Cancer Day.

Did you know that ovarian cancer has the lowest survival rate of gynecologic cancers? Almost a quarter million women are diagnosed each year and it is responsible for 140,000 deaths.

It is important to know the symptoms, which are often misdiagnosed. Do you know what they are? From the World Ovarian Cancer Day website:

  • Increased abdominal size / persistent bloating (not bloating that comes and goes)
  • Difficulty eating/feeling full quickly
  • Abdominal or pelvic pain
  • Needing to pass urine more urgently or more frequently

Early diagnosis greatly increases a woman’s chance of survival, however, women are usually diagnosed at a late stage as often the symptoms are attributed to menopause or digestive issues. This is all so familiar to me.

My mother’s story

Those of you who have been following my blog for a while already know that my mother is currently undergoing chemotherapy treatment for ovarian cancer. She was diagnosed less than a year ago, in June ’12.

Just like described above, she thought her discomfort and swollen belly were related to digestive issues. She was experiencing abdominal pain on her left side and frequently had to use the bathroom. A colonoscopy was scheduled to investigate what in her GI tract was causing this problem. The doctor was unable to complete the procedure – in the five months since her last abdominal/vaginal ultrasound, a tumor developed in her left ovary and grew so large (the size of a balled-up fist) that it restricted the large intestine.

The initial surgery removed a few outlying lumps, but majority of the mass was left intact. As of today, she completed six chemo treatments in Fall ’12 and five of six treatments in Spring ’13. Her doctors are optimistic and believe that her prognosis is good.

I’m scared. Our small family is devastated. My mother is weak and in pain. My father is struggling to support her physically, mentally, and emotionally. My sister (and her son) moved in with my parents to help however she can. I am helplessly watching and trying to support them all from thousands of miles away. I have hope that she will beat those awful odds that are against her.

Ladies, please talk to your doctor. Start those ultrasounds if you aren’t already doing them, especially if breast and/or ovarian cancer are prevalent in your family.

Genetic testing for BRCA mutations

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BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer. – National Cancer Insitute

A woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 mutation. – National Cancer Insitute

Having a BRCA gene mutation is uncommon. Inherited BRCA gene mutations are responsible for about 5 percent of breast cancers and about 10 to 15 percent of ovarian cancers. – Mayo Clynic

My mom, who was diagnosed with ovarian cancer in June ’12, just got the results of her genetic tests. The news is good, in that there were no mutations detected, however the test looked for only three mutations/variants on the BRCA1 gene (300T/G, 4153delA, and 5382insC). Only three out of hundreds of different types of mutations that have been identified! And the test only checked the BRCA1 gene. I’m inclined to chalk this up to the fact that she’s in Europe and maybe genetic testing isn’t as common practice there as it is in the US, but nonetheless I am dumbfounded. She has submitted another blood sample with a request to run a more thorough analysis.

This made me take a closer look at my own negative BRACAnalysis test results. The tests done were: BRCA1 sequencing (5-site rearrangement panel) and BRCA2 sequencing. The narrative explains: “there are other, uncommon genetic abnormalities in BRCA1 and BRCA2 that this test will not detect. This result, however, rules out the majority of abnormalities believed to be responsible for hereditary susceptibility to breast and ovarian cancer.”

So … what now? As far as further testing (BRACAnalysis Rearrangement Test – BART), I’m not sure that it is necessary. Per Myriad: “there is, on average, a less than 1% chance that BART will identify a mutation in a patient who has already had a negative result from Comprehensive BRACAnalysis.” I’m going to wait and see what my mom’s results are. In any case, this doesn’t change my decision to move forward with the prophylactic bilateral mastectomy in January, but creeps back another variable thought to have already been checked off the list.

Side note: In this blog, I’m only addressing my choice to have a prophylactic bilateral mastectomy to reduce my risk of breast cancer. I am conscious of our family’s history with ovarian cancer. That is another topic for another day. At this time, I have decided to keep a close eye and wait until I hit menopause to seriously consider an oophorectomy.

Related articles

Update 10/16: Mom’s second genetic test results, which also checked for PTEN mutations, were negative. I gave blood for BART anyway and my results were also negative.

Need to know basis

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Hubby has obviously been in on it since the first time the phrase “prophylactic bilateral mastectomy” came out of my mouth and wholeheartedly supports my decision to do this. Until a couple of months ago, the “circle” consisted of just the two of us. I’m still conflicted on whether this is something I’m ready to share with a wider audience, but I’m writing this blog, so here goes – widening the circle. I’ve shared my story with a few close friends and they have been extremely supportive. Getting past the initial concerns and discovering what this all means, they offer their ears, shoulders to cry on, time, opinions, and support.

The conversation with my family was hard. Mostly because I felt guilt (and still do) for adding this to their plate. My mom was diagnosed with ovarian cancer in June – same time I was going through my little “adventure.” I felt the lump the day before mom’s colonoscopy that lead to the discovery of a large tumor. My biopsies were the same day she had her initial surgery. Her diagnosis came when I was still waiting for my results. I flew to Europe to see my family in August and told my father and my sister. Dad’s reaction was much like my husband’s – terribly concerned, scared, angry that this is haunting our family. He listened to my thoughts, asked tons of questions, played devil’s advocate, but ultimately expressed his sincere and complete support of whatever decision I was going to make. My sister’s reaction was similar, but her point of view and concerns made me consider things I hadn’t thought through before. Mom still doesn’t know. She just had her sixth chemo and is recuperating before the next round of tests that will show us what is going on in there. If the tumor shrank down enough, her surgery is tentatively slotted for January. I’m holding off until we know where the chips will fall. We need her to focus on staying positive and giving this thing all she has got.

While I sometimes do have my moments of “girl, are you crazy?” or “why would you do this to a perfectly healthy body?”, I’m comfortable with the decision and ready to get this over with!