Category Archives: My Story

Saying NOPE to Ovarian Cancer too

A week after my prophylactic bilateral salpingo-oophorectomy (BSO) and total hysterectomy, I’m happy to report that I also said NOPE to ovarian cancer .. and uterine cancer and cervical cancer.

When my then-28-year-old sister was diagnosed with aggressive breast cancer in 2001, and died less than a year later, my world was rocked, but I had no idea just how rocky it would get. Since then there have been countless doctor’s visits, screenings, blood tests, anxious days and nights, and a few (!) surgeries. We’ve lost not only my sister, but my mom too, who was diagnosed with late-stage ovarian cancer and died in a year. 20 years later, I feel like I can finally breathe easier, like I’ve exhausted all the options available to me to greatly reduce my own risk of developing hereditary breast and ovarian cancer (HBOC).

I already made a decision to take some kind of action at 40. There were many options to be weighed and paths I could take. There’s an overwhelming amount of resources related to ovarian cancer testing, screening, treatment, and risk-reducing surgeries. Some are informative, others are eye-opening, and there are those that are terrifying. There were multiple questions to be answered if I was to move forward the surgical route:

Do we take out both ovaries? Or just one and both fallopian tubes?
If two ovaries, will I use hormone replacement therapy (HRT) after?
Should I also give the boot to my uterus?
And if yes, what about the cervix?

In consulting with my husband, doctors and surgeons, including the gynecologic oncologist I have been seeing for years, we came to a decision and scheduled the surgery. On July 15, 2021 I underwent a procedure that removed both my ovaries and fallopian tubes as well as my whole uterus, including the cervix (so all of the above!). It was a robotic-assisted surgery, using the da Vinci system.

Artist: jcorres (redbubble.com)

It was a quick outpatient procedure, so I went home same day with four tiny incisions and an HRT patch. Since my surgery did include removal of ovaries, HRT will keep surgical menopause at bay. It delivers .1 mg/day of bio-identical estrogen. I’m only one week post-op, but so far so good – zero hot flashes to report! My body is still in shock, I think, and it may not all be peachy down the road, but I’ll deal as it comes. The recovery is not exactly a breeze (OMG, the gas pains!), but doesn’t even compare to that of the mastectomy, which was rough and long. I’m already off narcotics and back to doing some mobility workouts (easy peasy to start).

What’s next?

Over the coming days/months/years I will continue to visit my gynecologic oncologist for regular exams. We will work together to plan for the future and adjust as needed. And of course: eat healthy, exercise and meditate regularly, live clean, wear sunblock, and lay off the booze! At this point, I have some peace-of-mind in taking another step towards reducing my risk of the gynecological cancers that have affected my family. I’m doing what I can to say NOPE to breast and ovarian cancer!

The good old days

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WARNING: NSFW / graphic content below.

It has been over four months since my most recent surgery (March 1, 2016) and three and a half years since I had my prophylactic bilateral mastectomy. As I’ve said before, I have no regrets and am glad that I made the decision to undertake this journey. The last few years have not been easy, but it has all been worth it! hood

Things look great! I would even dare to say they are perfect (see photo below). Of course, there are little things here and there; we are our own worst critic. For example: I lost part of my nipple to necrosis, which resulted in loss of pigment, so I’ve been considering a 3D nipple tattoo to fill that in. In all honesty though, after the complications I’ve dealt with and how long this has taken, I am ecstatic about the outcome!

I’m in a great place in all aspects of my life:

This is all finally behind me and I’m happy to say I’ve had nothing but love and support from my husband, family, and all those around me (including you!).
On a personal level: hub and I are about to celebrate 10 years of marriage and 20 years together, we’ve traveled a bit this year and will be going to Ireland as well as the motherland to see my family in September AND the FORCE conference in Orlando in October, I chopped off some of my long hair and am slowly making my way to blonde (I love it!), and I lost the 15 pounds I gained over the last three+ years.
On the work front: I love my job, which allows me to work from home, and I’m about to dive into a really exciting business opportunity (more details later).

It’s easy to say things are great when they really are great, but if you’ve been reading my blog for a bit, you may know that I’m a firm believer that your attitude really is everything. My anthem has been These Are The Good Old Days by Pink. Even when they were shit days, they were still good days. I had the chance to say NOPE to breast cancer.

Throughout this process, I’ve remained positive and never lost sight of my “why” for doing all this, which was to greatly reduce my risk of developing breast cancer. Although we are BRCA mutation uninformed negative, cancer has been plaguing our family. My sister was just 29 when she died from the disease (I’m 35). My mother was diagnosed with ovarian cancer and died just a little over a year later. My aunt is in remission from colorectal cancer. I’ve been discussing a salpingectomy with my oncologist and will most likely have that procedure before 40 (stay tuned) followed by an oophorectomy after 50. At the end of the day, I am glad I made the decision to be proactive. I will continue to closely monitor my health and make decisions that best address and mitigate my personal risk.

Because “these are the good old days and I think I’d like to stay” – Pink.

The results

This is what it’s really like to get a mastectomy

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Recently I was contacted by a reporter asking whether I’d be willing to participate in a piece on what it’s like to have a mastectomy. Would I share my experience and story? Of course, I said yes! My goal is to put it all out there with the hope to help others in some way. There were a number of women who also provided feedback for the article that was published on Prevention.com. Check it out!

This Is What It’s Really Like To Get A Mastectomy

After being diagnosed with breast cancer at age 40, Ann Marie Otis, now 44, had, as she says somewhat jarringly, her breasts “amputated.”

It’s not a term most of us would choose to describe a double mastectomy, but she’s not wrong. After all, an amputation is the surgical removal of an extremity; a mastectomy is the surgical removal of a breast. Thinking of the two procedures as one in the same could drastically change our perception of breast cancer treatment.

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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!

BRCA mutations and me

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After a couple of recent messages from readers, I realized that I don’t talk about my genetic status much … you have to do some digging to figure that out. Well, I’ve updated my About page and here I am clarifying: I am a BRCA uninformed negative. If you’re already confused, scroll down for an explanation of BRCA and its significance in the cancer world.

What is an uninformed negative?

There is a distinction between a positive genetic test result and a negative one, obviously, but there is a further separation between true negative and uninformed negative. The former diagnosis is made when a mutation has already been identified in the family line, but the person tested does not carry that mutation. The latter applies to individuals like me, whose family tree DNA does not present any known mutations associated with the increased occurrences of cancer. It is still a mystery and we remain uninformed.

Aside from the most commonly tested BRCA1 and BRCA2 genes, there are many others that impact risk of breast and ovarian cancer, such as PTEN, CHEK2, ATM, TP53. The clinical significance of mutations on those genes varies from that of BRCA mutations, however. My genetic counselor and I are discussing testing for these. I am aware that it is possible my sister and mother, who both died from gynecologic cancers, carried some gene mutation their limited testing did not uncover and I did not inherit it, so we are considering importing my mother’s blood sample from Europe to be thoroughly tested in the US. To find out how to assess your risk, learn more about counseling, or find a certified counselor, visit FORCE.

Also, if you are a fellow uninformed negative, there’s a Facebook group for that! Join us.

Now, for the nuts and bolts of this …

What is BRCA?

Everyone has four BRCA (BReast CAncer) genes: one copy of BRCA1 inherited from mom, one from dad and same of BRCA2. They produce tumor suppressor proteins, which help repair damaged DNA. Mutations present in these genes result in production of defective proteins unable to do their job, which can result in genetic alterations and ultimately lead to cancer.

Together, BRCA1 and BRCA2 mutations account for about 20 to 25 percent of hereditary breast cancers and about 5 to 10 percent of all breast cancers. In addition, mutations in BRCA1 and BRCA2 account for around 15 percent of ovarian cancers overall. Breast cancers associated with BRCA1 and BRCA2 mutations tend to develop at younger ages than sporadic breast cancers. – National Cancer Insitute

An important thing to note: as long as an individual has one properly functioning gene, they are producing those DNA-repairing proteins and remain protected. Not until the second copy of the gene is mutated does their chance of developing cancer skyrocket. Somatic mutations can occur due to exposure to carcinogens, such as certain chemicals found in prepared foods (I’m looking at you, hot dog), cigarette smoke, asbestos, radiation, alcohol, etc. Eat healthy, live clean, wear sunblock, lay off the booze!

This is a really great video shared by Andrea on her blog Brave Bosom. It explains mutations, how they relate to cancer, and how treatment affects cells.

Genetic testing can determine whether an individual is a carrier of a known BRCA mutation. There are well over three thousand BRCA mutations that have been identified, however not all of them are clinically significant, which means they either don’t increase risk of these cancers or we don’t yet have enough data to comfortably say so. Here is the break down according to another blogger’s analysis of data available from the National Human Genome Research Institute’s Breast Cancer Information Core database (say that three times fast!). Although this database contains a wealth of data, this analysis is from a specific point in time. New mutations are discovered every day! If you’re a data nerd, hop over to Jessica’s blog to read the full post and her story: Breaking BRCA.

*Please note that I am not a genetic counselor or a healthcare professional and am only presenting my experience and what I leaned from doing my own research. Please consult a doctor or certified genetic counselor if you have questions or concerns about your own genetic status and associated health.

Previous posts on the topic:

For those of you just joining us …

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I’d like to take a minute to say welcome to new visitors and subscribers! Thanks for stopping by and checking out my blog. (I know you’re really here for the topless pics 😀 – see: My Photos)

I was recently contacted by a reporter who is writing a story about BRCA and hereditary breast and ovarian cancer (HBOC). I was more than happy to share my story, feedback, and reaction to Angelina Jolie’s New York Times op-ed. I thought adding that here is a great way to give the new readers a summary of my story, so here goes …

Recap

I’m 32, married, no kids (more: About Me). Neither I nor any of my family members carry any of the known BRCA mutations; however breast and ovarian cancer are prevalent in our family. My sister was 28 when she was diagnosed with breast cancer and died a year later. My other sister has a breast biopsy scheduled for next week. My mother is currently undergoing treatment for ovarian cancer.

I said NOPE to Breast Cancer Even though I am BRCA mutation negative, I have an increased risk of developing both cancers based on my family history and was faced with the same decision regarding my breast health: choose surveillance, chemoprevention, or surgery. For the past 10 years I chose bi-annual screenings via mammograms, ultrasounds, and a few MRIs. I made a different decision and started planning for a prophylactic bilateral mastectomy when screenings discovered some issues (see: But why?) in March and then June of last year. I underwent the mastectomy in January 2013 and am currently going through the breast reconstruction process, which will end with the second surgery (see: We’re getting there) in September. I have consulted with my doctors about having my ovaries removed and will most likely be seriously considering an oophorectomy in about five years.

When I was preparing for my mastectomy, I spent many hours online looking for first-person accounts of the process and following recovery. I wanted to know every little detail related to the options and decisions I had to make: from which doctors to choose, to what type of reconstruction is available, to how to handle insurance coverage complications. I didn’t find many back then, so I started my blog, sharing my story and photos. I write my blog to give women facing HBOC insight into the experience of a prophylactic mastectomy if they choose to undergo one.

The “Jolie mastectomy”

I was immediately very excited when I read Angelina Jolie’s New York Times op-ed. I could relate to her story, as I had undergone my mastectomy just weeks before she had hers. More importantly, her name is known by millions of people around the world and now her story is too. She accomplished with one op-ed what many organizations have been striving to do for years – bring global awareness to BRCA and HBOC.

The essay described her very personal journey and reasons for making the decision she did. I echo her feeling that choosing to have a mastectomy was not easy, but I have no regrets. Although the decision to have surgery was right for me, Jolie, and countless other women, it is not the right decision for every woman and one that shouldn’t be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences. I think it’s important to note that Jolie’s experience is unique. She was fortunate enough to have a relatively complication-free recovery, but there are many women who experience severe complications following their mastectomy.

After her op-ed came the multitude of reactions, commentary, articles, blog posts. Many expressed their support of her decision, but others condemned her. Having made the same decision, it was difficult to not take it all personally. What they were saying about her and the choice she made, they were essentially saying about any woman that made the same decision. I have (thankfully) had support and encouragement from those around me.

Then came the pieces referring to BRCA as the “Angie gene” or the procedure as the “Jolie mastectomy.” I do agree with the post I recently reblogged (see: Semantics) – in a way yes, this trivializes other women, their experiences, their struggles. Women (and men) all over the world deal with the realities of carrying a BRCA mutation every day. The decisions, uncertainty, major life changes, and disruption are a huge part of their lives. For some, not a day goes by that BRCA and cancer aren’t on their mind. Most have watched a loved one deal with cancer and worse. Majority don’t have a famous name or a famous face. Some publicly share their stories via articles, blogs, support groups, and other venues. Jolie hasn’t done anything extraordinary. The “Angie gene?” She’s no pioneer. I have nothing against her and reiterate that I’m ecstatic that she decided to share her story, but she made the same decision thousands of women have made before her and will make after her. Hearing someone say “oh, you had the Jolie mastectomy” makes me cringe and smile at the same time. While I’m peeved by the categorization and potential assumption that I chose this option because she did, I understand that this is the only point of reference some people have and welcome the opportunity to talk about HBOC and BRCA.

3/7/14 update: A few things have changed since I wrote this post in June 2013: mom’s treatment was not effective (or rather TOO effective) and she died in November, my sister’s biopsy results were clear, but she is now prepping for an oophorectomy, my September surgery was NOT my last one,

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.

BRCA Genetic Testing: What You Need to Know (everydayhealth.com)
Genetic Testing (facingourrisk.org – FORCE)

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!

Family matters

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It was time to make the call. I decided to do a little digging into my family history. Mom’s grandmother (her mom’s side) had ovarian cancer, my grandfather (dad’s side) had prostate cancer, my dad had an issue with a tumor near his kidney, my mom was just diagnosed with ovarian cancer, one sister was 28 when she was diagnosed with breast cancer and died just a year later, and my other sister is healthy and has not been affected thus far (knock on wood).

Although my own genetic test results were negative for the known BRCA mutations, my updated family history and recent personal history bumped me into the “high risk” category. Thus far everything that came my way via experience and information gave me more reason to move forward with the procedure. Other than the risks that go hand-in-hand with any major surgery, there was nothing significant that made me question if this is the right thing for me.

What if the MRI uncovered that the masses in my breasts were cancer? What if it was a false-negative and by the time I felt the lumps myself, it was too late? Will I ever trust another ultrasound or MRI? And if I don’t do this and down the road breast cancer comes into my life, will I be able to live with the decisions I make now?

So that’s it. Say tootaloo to the boobies. Time to part ways.

But why?

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I never really worried or thought much about cancer until my sister was diagnosed with breast cancer when she was 28 (10+ years ago). She died a year later. So … annual mammograms began in my mid 20s and mid-year ultrasounds were added a few years later. The topic of a prophylactic bilateral mastectomy came up on a couple of occasions, but I didn’t think I had enough reason to seriously consider it. So far, so good.

In March 2012 an ultrasound spotted some issues. Three separate masses were present – two on the left breast, one on the right. They developed in the six months since the last mammogram. Based on quantity and consistency, the oncologist thought they were cysts. Rather than doing a biopsy to draw fluid for testing, he recommended that I first undergo an MRI screening. At this time I started doing some casual research on prophylactic bilateral mastectomies. Waiting for test results was hell, but when they eventually arrived, they were good – no cancer. Whew! High five!

Fast forward to June 2012. I felt something unusual during one of my monthly self-exams. The lump I felt 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. Fine-needle aspiration biopsies were done and results sent for testing. I got names of a few plastic surgeons in my area and left with a plan to start the conversations, no matter the results. The biopsy results were negative for cancer, but there were abnormal cells detected. I already knew I have “extremely” dense breast tissue/fibrocystic disease (which can make diagnosis of cancerous tumors more difficult). I was told to continue my self-exams and keep regular screening appointments as I had in the past.

What’s next?

The results

What is an uninformed negative?

What is BRCA?

Recap

The “Jolie mastectomy”

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