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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 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

Boobfographic

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For all those Ladies that still have their boobies, here’s a fun boobfographic (I came across on good ol’ Imgur; originally posted by R.O.I Media) demonstrating ways to check the girls:

Breast Cancer is treatable if it’s detected early on. This means that if you, or you and your partner, examine your breasts regularly for warning signs, you stand a better chance of finding lumps before it’s too late.

Tip #1

The soap you use in the shower allows your fingers to glide along the surface of the skin, making it easier to feel irregularities in the texture of the breast tissue.

Tip #2

Checking your partner’s breasts – or your own – isn’t all about intimate fondling; you have to stay focused. Gently massage with varying levels of force to ensure that the area is thoroughly examined.

Tip #3

Remember that it’s not just the soft breast tissue that needs to be checked, but the whole chestal area – from collar bone to armpit to upper ribcage.

It doesn’t matter whether your cup is half full or if it runneth over – it’s essential to take a hands-on approach to your boobal well-being. Use these three easy steps when examining your breasts and consult your doctor for further information. See more at R.O.I Media.

BTW, today is my one year blogaversary. Woo hoo! A year ago I wrote my first post: You’re doing WHAT? What a difference a year makes!!!

Pre-op prep

Attitude is everything

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Attitude

Yes, THIS. I have hit a pretty huge speed bump on my road to being finished. A major setback that’ll add at least three more months to this process. When I had my prophylactic bilateral mastectomy in January, I expected to be finished by mid-summer. HA! It’s almost January again! Yes, I’m devastated and angry, but there really isn’t anything I can do about it now except focus on recovery and what’s ahead of me.

Attitude really is everything. While you cannot always control what happens to you or around you, you have complete control over your reaction to it. I have chosen to continue to be positive, because the alternative won’t help anyone or improve my situation.

Good news x 3

I saw Dr. M for a follow up on Friday.

The Lone Drainger is out! Whoop whoop! I was producing less than 15 mL/day.
Culture results are good and show no signs of infection. This doesn’t mean I didn’t have one, it means that the antibiotics I have been on since Monday are working.
I might not have to have a tissue expander!!! Dr. M thinks the tissue won’t retract so much that I would have to start all over. If all looks good in a few months, he will place the implant via a small hole in my armpit using the TESSA technique (Transaxillary Endoscopic Subpectoral Smooth Augmentation). This was the best news! It also means that we will NOT have to mess with the incision/scar again.

Houston, we have a problem

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WARNING: NSFW / graphic content below.

Before I tell you about what has been happening for the last few days, I just want to say to those that are considering this procedure, preparing for one, or have already started the process: women who undergo a mastectomy, whether prophylactic or not, don’t always experience complications. Actually, I’d say that most do not, based on my involvement in a few online support groups and interaction with women in my local community. Everybody’s experience is different, because of different doctors, hospitals, body condition, other health issues, activities during recovery, nutrition, etc. There are many factors. Each person should consider their scenario and discuss concerns they may have with their surgical team.

Another thing to keep in mind is that usually the people that have problems are the ones that speak up. You know – the squeaky wheel thing. There are so many women out there that have had a completely complication-free experience and have beautiful results! You can’t tell that they’ve gone through this journey unless they tell you! Those women usually don’t linger in the support groups, stop blogging about it, move on, and just leave it all behind them. They are DONE and don’t have to think about it again.

Okay, Houston, we’ve had a problem here

Unfortunately, I’m not one of them. Upon my return from vacation, I started working out again (cardio) and I also began using Kelocote on my hypertrophic scars, as I mentioned in a recent post. Both of these activities began on Sunday. The following Wednesday I saw Dr. M and things looked good. The next day I noticed a bit of redness around the incision on my left breast. By Saturday there was a small area in the center of the scar tissue from my bout with necrosis that had turned blue. I emailed Dr. M and got this response:

Yes, this is a significant problem. Need to see you tomorrow.

By Monday afternoon, I had a hole. By early evening I had chills, sweats, and a fever of 101.7. Panicked, I called the after-hours service to page Dr. M and he called back immediately. The plan was to continue on the antibiotics, take a couple Tylenol, and sit tight unless the temperature spiked past 103, at which point I’d hightail it to the ER. Within two hours the temperature dropped below 100, but I knew what was coming: the implant had to go.

My surgery was at 5pm on Tuesday, October 15. Dr. M cleaned up the incision and removed the implant. I am left with one breast and another drain! I really REALLY don’t like drains, but who does? What’s next? We have to let everything heal for at least three months before we being talking about restarting reconstruction on that side. I’m am so bummed by this humongous setback!

Why did this happen?

A combination of things may have caused this, but it’s hard to say exactly which was the straw. In Dr. M’s experience, implants are usually (but rarely) lost due to complications from three major things: radiation, smoking, and/or trauma. I fall into the third category. The necrosis I experienced in January produced a lot of scar tissue, which has poor circulation. My use of Kelocote on that scar tissue introduced chemicals into the equation. On top of that, I started working out again. My body protested against the combination of old and new trauma. So here I am, uniboobin’ it for at least three more months! Good thing it’ll be during winter and I can camouflage things a bit. I present a foob and a drain:

Team FORCE at the local Race for the Cure

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.

Not 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.”

HBOC week

Race for the Cure

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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!

One 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.

BRCA mutations made simple

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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.