Got the pre-registration call from the hospital today. Here we go again. I am two weeks away from going under the knife for the fourth (and hopefully last) surgery in this process. Almost six months have passed since I had the last surgery during which one of my implants was removed due to an infection (see: Houston, we have a problem).
Pre-op
My pre-op appointment is on Monday, March 31. I’ll be doing standard lab work and discussing the plan for my upcoming surgery, including:
Nipple symmetry – the left nipple became necrotic and I lost just the tip when the scabs came off. I want to snip the tip of the right one to match. What’s worse than two erect, awkward nipples? ONE!
Pocket closure – the pocket on my right side is too low, so during this procedure I’d like it surgically closed up a bit at the bottom.
Increase in size – since we are going in there on both sides anyway, I’d like to achieve what I originally declared as the right size for me, which is 450ccs (350ccs now).
An implant, not a tissue expander – this! More than anything, I just want to be done.
I have my fingers and toes crossed that I will wake up with an implant and not another expander! Obviously, I don’t want any more issues, so if an expander it is, I’ll suck it up and just deal with it. I’m pretty sure I will have at least one drain. <sarcasm>Yipeee.</sarcasm>. Time to whip out the good ol’ checklist and start getting ready.
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.
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.
Have you heard of the Joining FORCEs Conference coming up in June in Philadelphia? Are you planning on going? I will be there! I’m excited to attend some of the scheduled sessions, specifically those related to oophorectomy, surgical menopause, HRT, ovarian cancer screening and prevention, advancements in genetics and testing, and the show-and-tell session!!! Fingers crossed I will be completely done and healed by then, so I’m planning on showing these puppies off! Join me at the conference June 12-14 in Philadelphia.
It’s the largest annual gathering by and for the hereditary cancer community. Be a part of this landmark event.
We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest research and medical options understandable and accessible no matter where you are in the HBOC journey.
We cover every aspect of HBOC. View our agenda to see a complete list of the 48 separate lectures, workshops and networking sessions.
Sessions are organized to help you find the information you most need. Our conference content is aligned into tracks that focus on different groups. View a list of suggested sessions based on your specific situation.
We bring researchers to you. You’ll hear the latest scientific findings presented first-hand by world-class experts
Guess who has two thumbs and the same number of foobs? This .. gal. No, I haven’t had my reconstruction surgery yet, but I did acquire a new breast prosthesis to compensate for the flatness on my left side. I recently said that if somebody is uncomfortable with my lack of bosom, that’s their problem. Well, my thoughts on that haven’t changed, BUT I did realize that I would soon be in a situation where I’d prefer to avoid having these conversations altogether.
Vacay
Hubby and I are going to visit his family in the Caribbean. It’ll be up-close-and-personal and about 85° Fahrenheit, which means my state will be unavoidable and questioned. If I spoke fluent Spanish, I’d say bring it on, but I don’t, so that leaves all the conversating and explaining to my hubby. I just don’t feel it necessary to do this to him. I’m very much looking forward to spending time with his family and enjoying getting away from everything.
How to acquire a foob
So, where do you even start? I remembered that the awesome Miss Casey Eischen – who is a rock star fitness expert, nutrition guru, and herself had a mastectomy with some complications – recently shared that she had a breast prosthesis in need of a home. I reached out and got the package just a couple of days later. I was excited and couldn’t wait to get it opened! Unfortunately, it wasn’t meant to be: the size and shape just weren’t right.
I dug up the name and number a friend shared with me shortly after my removal surgery for a local boutique that specializes in the needs of breast cancer survivors and individuals in need of image consulting. We scheduled a fitting and I obtained the necessary referral from my plastic surgeon. It took a couple of visits and an overnight shipment for us to get the piece just right, but we did it. Here it is, my new friend. Can you tell? The prosthesis is on the right side of the photo. It looks great in the pocketed bra and even better in clothing! I won’t fool the TSA agent reading the images produced by that airport body scanner thing, but I’m confident that I won’t be fielding and attempting to answer uniboob-related questions in Spanish. Yo no hablo mucho español.
I got the prosthesis and two bras. All of the pieces are covered by insurance, but standard deductibles and out-of-pocket maximums apply. Since my insurance plan year just restarted on January 1st, I have not yet met my deductible, so had to cover the total myself. Not a huge issue, as I will have additional expenses with the April surgery and will have to exhaust my deductible and out-of-pocket maximum then anyway. The damage? Around $400. Not too bad. Breast prosthesis: $300, two new bras: $98, consultation fee: $20, not having to answer awkward questions from distant in-laws about your missing boob: priceless.
I’m sure by now you’ve seen one of these confession t-shirts: yes they’re fake, the real ones tried to kill me. Right? My boobs never actually tried to kill me, I got rid of them before they could, so I never really felt I could wear one. Well, now I can with a more appropriate phrase: yes they’re fake, my real ones were plotting to kill me.
With that design and others, I created a new zazzle.com store to make them available to others that may want to express their sentiments about hereditary breast and ovarian cancer (HBOC) syndrome, BRCA, previvorship, cancer, etc. Here are a few of them:
I will be donating 20% of sales to FORCE: Facing Our Risk of Cancer Empowered. FORCE is the only national non-profit dedicated to improving the lives of individuals and families affected by HBOC. People like me. With each Dollar FORCE helps educate the public, advocate for our common cause, support our community, recruit participants for HBOC-specific research of detection, prevention, treatment, and quality-of-life, and so much more. If you’re looking for a fun previvor-style shirt and want to support FORCE, this is your place!
FORCE just celebrated its 15th birthday! FacingOurRisk.org is one of the first places I landed when I was embarking on my mastectomy journey. It is an amazing website filled with an incredible amount of information relevant to individuals and families facing HBOC. There is a message board, local group finder, lots and lots of articles and other resources, a photo gallery, info about studies and clinical trials, etc. If you haven’t yet visited FacingOurRisk.org, check it out!
If you’ve ever watched Forks Over Knives, Fat, Sick and Nearly Dead, Food Matters, or read any of the multitude of books out there, like Anticancer, that support a whole-foods, plant based diet and lifestyle, you already know that eating clean offers protection against cancer and even suppression of any disease already present (cancer or otherwise).
“Let thy food be thy medicine and thy medicine be thy food.” – Hippocrates
Mushrooms, flaxseed, soy, collards, kale, carrots, berries, tea, legumes, nuts, oats, and on and on and on. Superfoods can help ward off heart disease, cancer, cholesterol, and more. But it doesn’t work when they’re deep fried, slathered with unhealthy, high-fat dressings or sauces, or barely there in whatever you are eating. You can eat them raw and whole or join me and smoothie it up! I am in for the SimpleGreenSmoothies.com30-Day Green Smoothie Challenge. It starts January 1 – that’s TOMORROW. Get your blender ready and stock up on some leafy greens and fruits. It’s time to get healthy (or healthier). Click below to sign up for the challenge. You’ll get emails with details and recipes + shopping lists every Thursday.
Do you already drink green smoothies? Got some great recipes to share? Are you using any boosters like chia/hemp/flax seeds? Coconut oil? Let me know what works best for you!
Well, it has been a month since I posted my last status update, because there really isn’t anything terribly exciting going on. I do have a photo for you to show you some “fluffing” I’ve noticed in my right implant, though.
I saw Dr. M for another follow up visit a couple of days ago and we agreed that the infection is no more. I have been redness-free for over a month, so I seem to be in the clear. My next appointment with him is at the end of March, which will be my pre-op visit, with the surgery to follow on April 10, 2014. During that procedure my PS will attempt to replace the implant via a small incision in my armpit, using the TESSA technique (right). If he observes that too much scar tissue has accumulated in that space, he will have to place a tissue expander instead. We won’t know until he gets in there. It’s a log way away, but it’s not too early to start crossing fingers and banking those positive thoughts. Get on it! 🙂
As of today, it has been over three months since my exchange surgery and two months since the infection claimed my left implant (see: Houston we have a problem). The implant on my right does seem to be “fluffling,” meaning there has been a slight change in the perceived shape and size of the implant. What is actually happening is my body is changing around the implant forcing it into a different configuration, thus making it seem like the implant itself is actually changing. It is a gradual redistribution of the volume from top to bottom of the implant. The completion of this process may take from three months to a year. Here is the difference in just one month: left = November 13; right = December 13.
Digging up this old post form February for those of you that haven’t seen it.
Do you have some old, no-longer-needed, gently-used bras? Want to provide job opportunities to women rescued from sex trafficking? Free the Girls!
I just read a moving story on CNN about a US non-profit charity, Free the Girls, that helps former sex slaves earn a living by selling donated bras!
By partnering with safe houses and after-care facilities, we provide an opportunity for women rescued from sex trafficking to earn a living selling second-hand clothing while going to school, getting healthy, and caring for their families. – Free the Girls
My donation
I just had to share this. I was thinking about having a bra-burning party, because I will never wear any of my bras again, but this is so much better!!! I was excited to get upstairs and look through my stuff! Can you help too? Check out the Free the Girls website for more info, drop-off locations, the shipping address, and more.
It has been over ten weeks since my exchange surgery and a month since the infection that lead to removal of my left implant. I originally thought that I may have the next surgery just three months after the deconstruction, however some issues linger.
While I was across the pond, spending time with family after my mother’s passing, I experienced a lot of redness on the left side. I emailed photos to Dr. M and was told that the combination of stress, emotional and physical exhaustion, as well as a possible infection were the very likely cause of the inflammation. He instructed me to finish the antibiotic I proactively picked up on my way to the airport. After a few days, the redness went down and hasn’t resurfaced since. This Wednesday I saw Dr. M for a follow up. He did an ultrasound and discovered a couple of small fluid-filled cavities. I am to finish the antibiotic and keep a very close eye on the area, while the serous fluid is reabsorbed and addressed by my body. If the redness returns, the fluid will be aspirated for a culture and a decision on following treatment. I’m 48 hours drug-free and things are looking good.
In any case, my next surgery is scheduled for April 10, 2014. At this point, it is unknown whether a tissue expander will be needed. Nothing to do now, but sit and wait. This is what things look like now. I am not wearing a prosthesis or going out of my way to camouflage my lack of bosom. I’ve come to the conclusion that other people’s discomfort is their problem.
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!
Nipple symmetry – the left nipple became necrotic and I lost just the tip when the scabs came off. I want to snip the tip of the right one to match. What’s worse than two erect, awkward nipples? ONE!
Guess who has two thumbs and the same number of foobs? This .. gal. No, I haven’t had my reconstruction surgery yet, but I did acquire a new breast prosthesis to compensate for the flatness on my left side. I 
Saying NOPE to Breast Cancer 