Tag Archives: HBOC

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!

Related articles/videos:

Just some “fluffing”

WARNING: NSFW / graphic content below.

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. TESSADuring 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.

Fluffing

The waiting game

WARNING: NSFW / graphic content below.

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.

2013_11_7 rednessWhile 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.

2013_11_13 Front

Letters to Doctors: The BRCA and HBOC Syndrome Edition

Have you heard of this awesome new book yet? Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition was written by Dr. Jonathan Herman and Teri Smieja and is a really great book that aims to educate doctors about HBOC.

Among many other things, Teri has been blogging for a few years (Teri’s Blip in the Universe) about her journey after finding out she carries a BRCA1 mutation. Here’s more about Teri as well as this amazing book (reblogged from www.LetterstoDoctors.com).

What is Letters to Doctors all about?

By Teri Smieja

My name is Teri Smieja. I’m a BRCA1 Previvor, BRCA blogger, co-creator of the largest, active BRCA support group on Facebook and the co-author for an epic new book in the BRCA / HBOC realm. Our book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition.

Letters to Doctors went ‘live’ on amazon.com on October 18th and hit #1 in two genres within the genetics and new medical books categories on the same day it was released. Two weeks later, we are maintaining the #1 spot in genetics and hope to do so for many months to come.

Letters to DoctorsLetters to Doctors is unlike any other BRCA book on the market in that the main target is the health care professional. Letters to Doctors has much inside of it to help the patient learn how to better advocate for themselves too, but our main focus is the medical professionals. We plan to change the way things are being done, so that people will no longer needlessly die from breast and ovarian cancer. With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients.

My co-author, Dr. Jonathan Herman (a practicing ob/gyn in NY) and myself are making no money from this book, as all profits after production costs are going straight to BRCA / HBOC related charities. We are hoping that everyone will purchase two copies; one to keep and one to give to their doctor.

Those in the high-cancer-risk world are erroneously being told by their doctors too often that:

  • You are too young to worry about this.
  • You are too old to worry about this.
  • You can’t get this mutation from your father’s side of the family.
  • Your insurance won’t pay for genetic testing.

Doctors are missing giant red flags in their patient’s intake questionnaires, such as:

  • Family history of ovarian cancer (ovarian cancer is always a red flag).
  • Family history of male breast cancer.
  • Family history of breast, ovarian, colon, pancreatic, melanoma, and other BRCA related cancers.

The dots are just not being connected. Many patients rely on their doctors to be the most informed, but in the BRCA / HBOC world this is just not always the case, and people are DYING because of it.

Dr. Herman and myself believe that our doctors want to do right by us, but are basing their practice on outdated information and often times think that their patients are not emotionally strong enough to handle the implications that can come of BRCA testing. We feel that it is not our doctor’s place to judge whether or not their patients can handle this knowledge. It is not their place to tell us that genetic testing is too expensive (last time I checked, funerals were pretty pricey as well!), and we fill out stacks of paperwork prior to our doctors appointments with the expectation that it will be read, and understood properly.

It is our intention with Letters to Doctors, to help our medical staff understand better, how to do their jobs, and to truly see how important their words are to their patients.

We truly wish to save lives with this book, and know that we can do it. We just need your help in getting the word out there about Letters to Doctors, and our mission.

“If you don’t design your own life plan, chances are you’ll fall into someone else’s plan. And guess what they have planed for you? Not much.”
― Jim Rohn

Pre-op prep

The awesome Casey Eischen, who is not only a fitness and nutrition expert certified in working with women after breast cancer related surgery or treatment, but also had a prophylactic mastectomy herself in November ’12, has recorded another great video. This one is all about pre-op preparation – how to set yourself up for a successful recovery following breast cancer related surgery. Watch this 8.5 minute webisode for some great tips and tricks to prep for surgery!

Also check out my own preparing for surgery checklist.

Team FORCE at the local Race for the Cure

Team FORCE

There we are: Team FORCE at our local Susan G. Komen Race for the Cure. We had a great time, even though the weather was not cooperating. We made a lot of new contacts in our local community, both of the vendor/organization type and the individual type. We met some really great people that may benefit from our support and us from theirs! Looking forward to more events as part of Team FORCE.

A lot of you have already supported us by either walking or contributing to our fundraising efforts, so a huge THANK YOU for that. We appreciate every step and every Dollar. If any of you would still like to help Team FORCE, here are some things you can do:

  1. Spread the word about FORCE: Facing Our Risk of Cancer Empowered FacingOurRisk.org – the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me and many of you.
  2. Make a tax-deductible donation to Team FORCE via our team’s FirstGiving page: http://www.firstgiving.com/fundraiser/Vbmichellebraun/2013tidewaterraceforthecure. 100% of your donation goes to FORCE.
  3. Purchase some beautiful Origami Owl jewelry for yourself or as a gift. The Holiday season is just around the corner! 20% of sales go to FORCE. There are four pre-designed breast cancer related lockets (see below) or you can create your own, as I did and a few of my readers too – THANKS, LADIES!!! If you are interested in supporting FORCE and getting some great jewelry, visit our designer’s website and make sure to select Team FORCE Fundraiser at checkout: http://MartineNuera.OrigamiOwl.com.

Pre-designed lockets

Origami Owl Team FORCE

Race for the Cure

Team FORCE

On October 12, 2013 I will be participating in the a local Race for the Cure event. I have joined Team FORCE and will be walking (nope, not racing) in memory and support of our loved ones who have battled breast cancer AND to help raise hereditary breast and ovarian cancer awareness. I am stoked to be participating in this event and hopefully meet more women like me right in my own back yard!

As most of you already know, FORCE: Facing Our Risk of Cancer Empowered (www.FacingOurRisk.org), is the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer. People like me.

We are going to have a ton of fun at this event. Teal and pink paraphernalia WILL be involved. I got some teal knee high socks and a pink afro wig. Pics to come … I promise. Our team is already at 28 participants and we have only been at it for a little over a week! We currently have seven corporate sponsors with more on the way!

Origami OwlOne of our sponsors is my friend who is an Origami Owl Independent Designer. She will be donating 20% of sales (pre tax and S&H) to FORCE! How OWLsome is that? HOO is going to help us out and order an Origami Owl locket? There are four pre-designed breast cancer related lockets (see below) or you can create your own, as I did. Mine arrived on Friday and it is so awesome! I ordered a locket with five charms (pink heart with wings for my sister who died from BC, teal ribbon for my mom undergoing treatment for OC, LOVE for the rest of my family, girl cat for my two furbabies, and a G). I also ordered a charm for another necklace. Aren’t they really cute?!? If you are interested in supporting FORCE and getting some great jewelry, visit our designer’s website and make sure to select Team FORCE Fundraiser at checkout: http://MartineNuera.OrigamiOwl.com.

Pre-designed lockets

Origami Owl Team FORCE

BRCA mutations made simple

As many of you already know, although breast and ovarian cancer are prevalent in my family, those of us that have been tested are not carriers of any known BRCA mutations. I had blood drawn for the BRACAnalysis as well as the BART and no mutations have been found. This doesn’t mean that there is not a mutation in my family, however. It is possible that a BRCA mutation hasn’t yet been identified or it exists on another gene, such as TP53 or PTEN.

To me, genetics is a fascinating topic. So much so that I started my college education majoring in it! I love information and love learning about what really makes us tick and what doesn’t. To get a good grasp of what BRCA mutations really mean, you could do tons of research online, in a library, or by harassing your genetics counselor, OR you could just read this really awesome post written by Teri Smieja, posted on Andrea’s blog: BraveBosom.com.

BRCA mutations made simple

“A good way to think of it is this:  You have an instruction manual for making a car (the instruction manual represents the DNA). The car represents the protein. The instructions for making the engine (the most important part of the car) might be on the last page – say page 9663 – of the instruction manual (this could translate to a mutation BRCA2 9663delGT).  If that part of the manual is deleted, then the engine will never be made and the car will never run. Thus, a deletion on the last page of the manual could be just as harmful as an earlier mutation (say, one that ruined the rest of the manual, or one that deleted instructions for the wheels).”

Make sure you stop by Andrea’s blog and read the full BRCA Mutations Made Simple post.

Facebook support groups

Prophylactic Mastectomy FB group

I have been preaching for a long time now that finding a support group is really essential and this is the #1 item on my list of Resources. Have you joined one yet?

Where? How?

In addition to local community groups that meet in-person, you can find support groups online, specifically Facebook. They have been created and are managed by and for women who are considering mastectomy, preparing for one, or have already been there done that and are there to support those that haven’t (other topics related to hereditary breast and ovarian cancer are also frequently discussed; this varies by group).

I joined a few of them a couple of months pre-PBM and they were and continue to be invaluable resources for me. Lots of advice, photos, love, support, and just general sisterhood. Here are a few of them:

Bonus: if you write a relevant blog, join us in the Breast Cancer & Previvor Blogs group.

These are all closed/private groups, which means you cannot see the posted content unless you are a member. If you’d like to join one, find the group (follow my link or search on FB) and click on the Join Group button in the top right corner of the group page. A few of them require the requesting person to friend one of the administrators and complete a questionnaire before they can participate, so keep an eye on your FB inbox (including the “Other” inbox).

Come on down and join us! I’m happy to assist anyone that is interested. Contact me.

“I can’t say it enough to all of you beautiful ladies, but thank you :). When I had my PBM, I did it with the support of very few people. I have struggled more than I thought I ever would and then about 3 weeks after surgery I found this group. I had no idea that there were such wonderful women that have gone and are going through the same struggles as me. I know no matter what happens I have a huge group of the most caring, strong, and wonderful women that have my back and will always be there for me. I am beyond blessed to be part of this group. I never thought at this stage of my life that I would make such wonderful new lifelong friends. So I just want you all to know I appreciate you all xoxoxo” – posted in the Prophylactic Mastectomy group (sharing with author’s permission)