Tag Archives: Hereditary cancer

Reintroduction

I said NOPE to Breast Cancer I never really worried or thought much about cancer … until my sister was diagnosed with breast cancer at the age of 28. At the time, I was 21 years old, naive, in college, worried about what plans I had for the weekend, and didn’t really grasp what that meant. More than ten years later, my sister is gone, my mom is gone (ovarian cancer), my aunt is in treatment for colorectal cancer, my other sister just had her own scare, and although I am BRCA mutation uninformed negative, I underwent a prophylactic bilateral mastectomy and started the breast reconstruction process on January 22, 2013. I said NOPE to breast cancer.

Making the decision to undergo such a drastic surgery was both very difficult and extremely easy at the same time. It came after 10 years of vigilant screenings, when anxiety gripped me every six months as I prepared for my sonogram, mammogram, or MRI, anticipating the results to be the worst. When a screening discovered suspicious lumps, I knew that the time had come.

The reconstruction process was long, painful, and complicated (documented here on my blog). More than two years and eight surgeries later I can finally say I am done! No regrets. If I had to go through this all over again, knowing what complications were in store, I would make the same decision in a heartbeat.

It is not the right answer for everyone facing breast cancer and one that should not be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences.

There are many resources out there that can help. The My Destiny Foundation and its Facebook support group has been there for me for the last three years, since the days I was making surgery prep lists and had lots of unanswered questions about my upcoming procedure and following recovery. The group is a family of strong women from all over the world that support each other, laugh together, cry together, and everything in between. Visit www.mydestiny-us.com to learn more. If you need support, request to join the Facebook support group. See you there!

T-minus

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WARNING: NSFW / graphic content below.

The final countdown has begun. T minus seven days until my exchange surgery! That’s right, just one week left. This will be surgery #8 in the mastectomy and breast reconstruction process, which started January 22, 2013. The goal is to replace the tissue expander on my right with a squishy implant. On one hand, I am very excited about this surgery, as it should be my last one. However, I am also incredibly anxious. This process was supposed to take about eight months and two surgeries. Here we are 2.5 years later with #8 on the horizon. I’ve experienced a few complications that have drawn it out and caused me a lot of grief. In any case, this time next week I will be home and it will be behind me. I can focus on healing and moving on with my life!

Surgery prep

As I prepare for next week, I think about what supplies I need to gather. I’m dusting off the good ol’ Checklist that has helped me get my stuff together each time. I’ll be using the abbreviated version from my Box o’ recovery crap post, which lists the things I keep on the night stand:

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

That should do it.

Status update

I haven’t posted a photo since the tissue expander placement, six months ago. Slacker! My expansions went OK. That side is a different shape and size than my implant, of course, but not too bad. We stopped expansions at 450ccs, which is the volume of the implant on my left. There are a few things off at this point, like my nipples not being “level” and some weird divot in my cleavage, but honestly, at this point, I’m almost all out of fucks to give about these details.

So here I am, On the left in photo I am sporting a tissue expander in 450ccs. On the right I have a Mentor round, smooth, high profile, silicone implant in 450ccs (10 months after exchange).

A few months after surgery I’ll evaluate the state of things and decide how much the details are bothering me and if there is anything else to be done. Maybe that divot will fill out (it’s OK in a bra) and the nipple-level thing won’t be as bad. Things will be different with an implant and maybe they’ll be symmetrical and just right.

One thing I know will definitely follow is a tattoo by Amy Black. I still haven’t decided if it will be just a 3D nipple fill or something artsy fartsy and covering more of my chest wall. We shall see!

Angelina Jolie Pitt: Diary of a Surgery

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Once again, the HBOC community is buzzing. If you haven’t already seen, Angelina Jolie Pitt has published another NY Times Op-Ed. This time about her choice and reasons for undergoing a bilateral salpingo-oophorectomy (removal of fallopian tubes and ovaries). She explains that she has been planning to have this procedure for some time, but recent test results pushed her to go through with it to reduce her risk.

She is careful to point out that this choice is her own and right for her after carefully considering options, but may not be for others. Surgery is not the only option.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

I am again so thankful that she chose to share with the world her genetic status and decisions related to her health. She is bringing global awareness to hereditary breast and ovarian cancer, what many organizations have been striving to do for years. Also empowering women and families facing hereditary cancer to discuss and seek out options available to them.

As I read and react to her piece, I think of my own family history and my health. I lost my mother to ovarian cancer a little over a year ago (29 year old sister to breast, great grandmother to ovarian, and have an aunt undergoing treatment for colorectal). We do not carry any of the known genetic mutations that increase risk of cancer (we are uninformed negative; read old post on the topic), however, my doctors and genetic counselor are convinced something is there, just hasn’t yet been identified. I am managing my healthcare assuming same. In just a few days I will be meeting with my oncologist for the regular bi-annual appointment, which will include the same blood test Jolie Pitt mentions as well as an ultrasound. I know that just like her, the moment those results are abnormal, my surgery will be scheduled. I have also done lots of research and considered other options, but already know this surgery is the right answer for me personally. It will greatly reduce the risk of ovarian cancer, just as the prophylactic mastectomy does for breast cancer. When is the question. I dread the aftermath, which includes surgical menopause, and have thus far been putting it off. Cross your fingers for me.

For more information about genetic mutations, hereditary breast and ovarian cancer syndrome, screening and prevention options, local support group finder, and much more, visit the FORCE: Facing Our Risk of Cancer Empowered website. Talk to your doctor about your family history and whether genetic testing is right for you. To find a genetic counselor in your area, check the National Society of Genetic Counselors website.

Fin!

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WARNING: NSFW / graphic content below.

Alright boys and girls .. I think we did it! I think we’ve finally arrived at the end. My exchange surgery was on Thursday, September 11. I had pocket revision on my right side and a swap from tissue expander to implant on my left.

Sunrise We arrived at the hospital at 6:30am for the 8:30am procedure. It was a beautiful morning! The surgery lasted three and a half hours – longer than we expected. I woke up bundled up in a tight compression bra and ACE bandage wrapped about my chest. The biggest and most wonderful surprise: NO DRAINS!!! I couldn’t believe it. Spent a bit in the recovery room and then hightailed it home to my comfy bed.

On Friday, we drove out to Dr. M’s office for my follow up appointment, which is when I got to see them for the first time after surgery. Things are looking good! I do have some swelling, which is to be expected, but aside from that they look to be the same size, are even on my chest wall, and my nipples line up. Woo hoo! I know it’s early, as it takes up to a year for things to settle, but I am just ecstatic!

Dr. M explained what he found while he was in there. It appears that at some point since my last surgery in April I ripped apart the pocket revision he did then and this is why the right side was bottoming out again. This could’ve happened as I bumped into something or fell or had some other physical strain or trauma. Hub pointed out that it may have something to do with me painting. Yes, I admit, I did more than I should have. I’m an idiot. This time around I am doing N O T H I N G. Absolutely nothing. For at least a month. And no excuses!

On my left side, Dr. M made the incision underneath the nipple, where the original was, rather than going in through my armpit again. He had to do some work on that side to make sure symmetry was achieved, hence a bit more swelling there. He did not do any fat grafting, which made me happy and I did stay with the same implant size and projection I had previously: Mentor round, smooth, high profile, silicone in 450ccs.

I am feeling amazing! I think the girls look great and physically I am not in too much pain. I am to wear this compression bra for two weeks straight, with the exception of showering. This will ensure everything heals in place as it should. Next appointment: September 25.

Yup, tissue expander

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Darn 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.

The 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

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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:

Water
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.

Letters to Doctors: The BRCA and HBOC Syndrome Edition

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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

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.