Tag Archives: BRCA

FORCE jewelry fundraiser

FacingOurRisk.orgEXCITING NEWS: I have launched yet another fun fundraiser to benefit FORCE: Facing Our Risk of Cancer Empowered!

This time I am making and selling cancer awareness themed jewelry. Started with bracelets in many different styles, sizes, and colors (not just pink and teal). Now that I have some free time on my hands while I recover, this is a great way to keep busy! Other products coming soon. I am taking custom orders too!

Jewelry banner

I am really excited about this fun project and supporting such a great organization, which has helped me and many others facing hereditary breast and ovarian cancer. These bracelets are great for previvors, survivors .. those undergoing treatment .. families and caretakers! Buy and wear (or gift) this hand made cancer awareness jewelry to show your your love, support, and warrior spirit.

Sample bracelets

I hope you love these as much as I love making them. I donate all proceeds from this fundraiser to FORCE: Facing Our Risk of Cancer Empowered (www.FacingOurRisk.org). FORCE is a nonprofit organization dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me and many of you.

Etsy logoPlease visit my Etsy shop to see more styles and place an order. Mother’s Day is coming up! These bracelets make great gifts! As I mentioned, I am taking custom orders too, so if you’d like to purchase one, but don’t see something you like. Send me a note!

P.S. Recovery update coming soon. Going to my follow up appointment later this afternoon.

Yup, tissue expander

Tard on drainsDarn it! Yes, it’s a tissue expander. There was too much scar tissue in there, so we are playing it safe. I’m OK with that … I like safe. Also, yes, I do have a drain and yes, I still hate them!

On my right side, we were able to go up to 450ccs and alter the pocket. From what I can see so far, things are looking OK. I will take photos tomorrow after my dressings are off and this pesky drain is out.

Tiddy BearThe procedure took about four hours and I only stuck around for a little bit after. The Tiddy Bear came in handy for the ride home. I ❤ these things! My throat is sore and my chest does hurt, especially on the left side where I have the tissue expander. No surprise there. No showering until tomorrow after I see Dr. M for my follow up. Until then I look as if I was choked by an Oompa Loompa, because of the pre-surgery scrub on my neck :).

Thank you all for the massive amount of positive energy and prayers sent my way. ❤ ❤ ❤

Hubby has been taking really great care of me. I just took delivery of a green smoothie to drink with my Norco. He keeps reminding me to stay on my ass and take it easy. We don’t want a repeat of last year. Nope! My two kitties have not left my side since we got home. You can’t see the other one, because she is under the blanket, spooning my leg. LOL

Recovery buddy

Box o’ recovery crap

Counting down the hours! My surgery is scheduled for 8:30am on Thursday and should last about three hours. We are doing reconstruction on my left/flat side and pocket revision plus implant swap on the right side. I’m excited to finally get here after the six-month wait, but I’m also very nervous. Not knowing what is waiting for me is uncomfortable.

My bedside box o’ recovery crap is ready! I used my PBM checklist to gather the essentials:

  • Recovery aidsWater
  • Back scratcher
  • Tissues
  • Tiara (of course!)
  • Digital thermometer
  • Scissors
  • Tape
  • Measuring cup
  • Alcohol swabs
  • Chap stick
  • Phone and charger
  • Rubber gloves
  • Snacks
  • Medications
  • Camera
  • Lanyard (I will very likely have a drain or two)
  • Hand sanitizer
  • Lotion
  • Cough drops
  • Note pad and pen
  • Kindle

I think I’ve got it covered. Don’t you? Now I just need to pack my hospital bag. I expect to be home in the afternoon, so this should be quick. Wish me luck! Talk to you later ‘gaters.

Fighter

No whining

WhambulanceIt looks like it will be a tissue expander after all. Waaah! Not what I wanted to hear. Somebody call the whaaambulance, STAT!

Dr. M and I discussed this yesterday during my pre-op appointment and unfortunately, he will likely be inserting an expander rather than an implant. There is a chance that one will not be needed, but as I mentioned, that is unknown until he goes in there, so planning on an expander. What a disappointment! I am hoping this won’t happen, but definitely not counting on it. Major bummer.

kikDeflated = this is how I felt when I left Dr. M’s office. It means surgery #5 is in my future and probably not until some time in August. Another summer with a tissue expander, more appointments, many more uncomfortable moments :(. BUT I got over it after reading the text my husband sent me in reply to my rant. I took a deep breath and exhaled all those thoughts out of my system. Expander fills suck and can be very uncomfortable, BUT chemotherapy side effects are much more uncomfortable. Doing this, all of this, is worth it.

So NO MORE WHINING! It is what it is and I trust Dr. M will make the best decision after assessing the state of my tissue and skin. And yes, it will be over before I know it. What I know I don’t want is more complications as a result of trying to rush things.

In addition to talking about this, we discussed the low pocket and implant size. During the procedure the pocket will be closed up a bit and I will get a larger implant on my right side – we are shooting for 450ccs. There’s a chance of fat grafting around the implant. Not sure where the donor site will be, but I know this means lots of bruising and more pain.

Less than two weeks to go! I leave you with a short video of me playing with a busted cohesive silicone gel implant while waiting for my appointment. Even if ruptured, the gel stays within the silicone capsule, unless pressure is applied. It returns to the capsule when released:

Here we go again

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:

  • QuestionNipple 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.

BRCA mutations and me

BRCAaskmeAfter 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.

BRCA mutation counts

*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:

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

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.

Thoughts from FORCE

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones:

  1. It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event.
  2. 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.conference1
  3. We cover every aspect of HBOC. View our agenda to see a complete list of the 48 separate lectures, workshops and networking sessions.
  4. 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.
  5. We bring researchers to you.  You’ll hear the latest scientific findings presented first-hand by world-class experts

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Breast Prosthesis

thisguyGuess 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.

ProsthesisBraI 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.

ProsthesisSideProsthesisFront

Previvor gear

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:

Zazzle.com shirts

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!

FacingOurRisk.org

On that note …

Happy New Year, Happy Birthday, FORCE!.

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!

Breast cancer and diet, green smoothie edition

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.com 30-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!

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