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My New Best Friend

This woman needs to be my new best friend.  Now.  She is awesome.  I wanted to send everyone a little smile today, and I can think of no better way to do it, then posting this video.  Deborah Cohen went in for her mastectomy and had a dance party with her surgical team.  I love it.  And I love the willingness of the medical staff to do this.  Dancing in the face of fear…I wish we all had such strength.  Check out the Huffington Post article for more on this amazing video.  Otherwise, just hit play and enjoy.  No other comments are needed.

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Now Let Me Pray To Keep You From, The Perils That Will Surely Come

 Kimi has defeated the odds, battling breast cancer whilst pregnant. Both she and baby-on-the-way are doing well - her positivity and strength shine through in these pics! She wanted to bare all to help raise awareness!


Kimi has defeated the odds, battling breast cancer while pregnant. Both she and baby-on-the-way are doing well. She wanted to bare all to help raise awareness.  Caption and picture by Nikki Holmes

(Programming Note from Shannon:  FINALLY getting a chance to post this.  I’m sorry for the delay!  The picture accompanying this article is absolutely inspiring.  A friend of mine shared it with our previvor group on Facebook and I knew I needed it for BRCA World.  Strength, perseverance, bravery…all that a mother should be).

(Goodness, I used to love Lauryn Hill’s “The Miseducation of Lauryn Hill.”  It was my jam back in the day.  “Zion” — the title of this article is a sampling of the lyrics — is one of the most beautiful songs about having a baby.  For anyone in a “God, I am blessed to have this child” mood, check out the lyrics.)

As our knowledge of cancer grows, so does our vigilance.  We are learning earlier and earlier about our risks.  Those of us with long family histories of cancer, are aware from an early age of its potential to strike us.  Many of us must make life-altering decisions in our twenties and thirties, when we are still learning to be adults.  We are on the cusps of our careers; our families are young, if they have even formed yet; and we are just settling into our skin enough to catch glimpses of who we might become.

Breast surgery is usually the first decision made.  For most, it is the easiest to agree to and protects from the most immediate threat.  How to guard against ovarian cancer is a much more difficult choice.  I know, for me, it is also the scariest.  Although the risk of ovarian cancer, in carriers of the BRCA mutation, is lower than breast cancer, ovarian cancer is more difficult to detect.  Dubbed, “the silent killer,” it is often not discovered until an advanced stage.  It is one of the deadliest forms of cancer among women; and only 20% – 30% of women diagnosed with a late stage ovarian cancer, will be alive 5 years later.  There are no good early detection tests.  The blood test most commonly used, the CA125, is not very accurate.  Many doctors (mine included) prefer not to use it at all, due to the unreliable results.  The only true option to reduce our high risk, is a hysterectomy (removal of your uterus) or salpingo-oophorectomy (the removal of your fallopian tubes and ovaries).

For younger women, this means making decisions about your future family and children.  It is recommended that these preventative surgeries be done by age 35 – 40 (two of my doctors recommended 35 y.o., but I know some women’s doctors have said 40, as well).  With BRCA and HBOC, your baby clock starts ticking faster the moment you become aware of these decisions.  Many women feel rushed.  They need to not only figure out what they want their future family to look like, but plan when and how they want that family to come to fruition.

There are many considerations for those at high-risk of ovarian cancer.  Eggs can be frozen.  Children can be adopted.  There is even embryo testing that can be done to determine whether you would pass on the BRCA mutation to your child.  This is most often done during IVF, when doctors can develop embryos and implant only those that do not have the mutation.

This brings up a sensitive topic in our community.  Do you have a moral obligation to avoid passing along the BRCA mutation?  I don’t have an answer to this.  I look at my son…his wide-eyed pleasure in the world.  He was a preemie that could not breathe without assistance; he fought through seizures and a hole in his heart.  Yet, he smiled constantly…from the very first day.  With tubes in his nose, belly button, and mouth, he smiled.  I can’t imagine him not being in this world, and I can’t imagine him having cancer.  Does he carry my mutation?  I have no idea.  Would it have changed my decision to carry him?  No.  Perhaps that is selfish, but my choice to have him would be unchanged.  By the time he is old enough to test, he will know about his risk.  I will make sure of it.  I am hopeful, though, that there will be a cure.  That is why I preach so loudly about it.  I need a cure for him, not myself.

Aside from all the choices we face, we must also recognize the risk.  Breast and ovarian cancer are, sometimes, estrogen responsive.  The influx of hormones during pregnancy can increase the risk of cancer in BRCA mutations (click here, here, and here for studies supporting this statement.)  Furthermore, if you have had a cancer diagnosis, you are encouraged to wait, at least, 2 -3 years before becoming pregnant, as it can increase the risk of recurrence.

Having a BRCA mutation, or a strong family history of cancer, means you are faced with a million impossible decisions.  Early in my life, I did not know if I wanted children of my own.  I enjoyed living selfishly, with nothing to constrain me.  I adored other people’s children, and had decided to be the super-cool aunt that was really involved in the lives of my nieces and nephews.  As I grew older, my dreams changed, as they so often do.  How are we supposed to make all these decisions so young?  Our lives change; our desires change; but we are forced to decide the shape of our future.  It’s unfair and impossible.  It is the high cost of cancer.

Personally, I dream of having another baby.  There are so many risks and decisions involved, my husband is not sure he wants to follow that road.  I can close my eyes and imagine a time when these decisions are unnecessary.  There will be a cure, casting all of our doubts and heartaches aside.  This is why we fight.  This is why we advocate and educate.

 

P.Ink: Replacing Loss with Beauty

I was looking around the web for inspiration for a new post.  A friend of mine posted the link to this video.  I love it.  Love every second of it.

I spoke yesterday about the Invisible scars of cancer.  The Personal Ink Project  (P.Ink) helps with the visible ones.  The idea is to pair mastectomy patients with tattoo artists and help them create something beautiful.  Not everyone wants a traditional reconstruction.  Reconstructed nipples and silicone doesn’t appeal to every patient.

A life touched by cancer is forever changed.  Trying to reconstruct what you lost is impossible.  No matter how skilled your surgeon (and they truly are artists), you can never fully replicate what is gone.  So, I understand the desire to create something different.  Something unique, that reflects what you have been through.

Boob Sweat, Shaving, and the Other Sexy Quirks of Reconstruction

My reconstruction with expanders.  Notice how far out to the sides the expanders are, making shaving impossible.  The circles drawn on the top of my chest mark the ports, used to fill the expanders.

My reconstruction with expanders. Notice how far out to the sides the expanders are, making shaving impossible. The circles drawn on the top of my chest mark the ports, used to fill the expanders.

We all know about the bumps, ripples, and divots that come with replacement boobs.  But there are many other, unspoken quirks that come with reconstruction.  What we go through is, almost, comical.  My experience has been to laugh at the unexpected curve balls.  We go through the surgeries to prevent, or get rid of, cancer.  To me, it’s worth it, though often, very strange.

Nothing makes a girl feel sexier than shaving her boobs.  This is what happens when doctors construct you a new set.  You end up having to shave them.  You get these lovely expanders placed where once you had breasts, and they blow them up like balloons every couple weeks.  Aside from the pain of stretching your muscles, you get the wonderful experience of armpit boob.  The expanders roam right on under your arm…where hair grows…and you end up having hair on your boobs.  Your options are to let your freak flag fly and grow out this gorgeous hair, or shave it off.  Choosing the latter leads to another “I feel pretty” moment:  razor burn on your boobs.  Nothing says “hello, sexy lady,” quite like these little red bumps.  For most, this improves once your permanent implants are placed.  For me, well, I still have a VERY hard time shaving under my arms.  There’s a weird little indention in there that is too small for a razor.  So, my hair removal is never quite complete (despite the yoga-style arm pretzels I’ve attempted to get in there).  Special, right?

Another alluring side-effect of breast removal and reconstruction, is boob sweat.  Good Lord, I have the worst boob sweat, nowadays.  I swear, it’s like every other pore has closed up shop and the only ones left open for business surround my glorious new chesticles.  Light grey shirts are an instant no-no and bras, while not normally needed (these puppies aren’t going anywhere), are a must on days over 50 degrees.  With the constant perspiration, comes the persistent fight against breast breakouts.  I’ve turned to washing my chest every night with pre-surgical soap to fight the acne that just won’t quit (I highly recommend this, as it seems to be the only thing that works).  And yet, despite the sweat, my boobs stay a mild 65 degrees all year round — personalized cooling in the summer, and heat during the winter!  All for the low, low cost of my real breasts.  Quite the bargain.

Foobs (“fake boobs,” for the uninitiated) are odd little (or big, I suppose) things.  I curse them at least once a day.  I’m grateful for them, though.  When my great-grandmother had her mastectomy, reconstruction wasn’t possible.  The surgery left her devastated.  Today, there are so many different options:  fat transfers or expanders, tattooed nipples or skin grafts; saline, silicone, or cohesive gel implants.  The surgeons are true artists.  You get to feel as close to “normal” as possible.  These wonky, sweaty, cold little things are my new normal and finding the humor in them is a far better alternative than not having them at all.

Finding Dr. Feelgood

brcaworld dr feelgood(Note from Shannon:  I probably owe Krystin an apology for that title, but I couldn’t help it.  That one’s for my husband, who loves Motley Crue — Sorry Krystin!)

Written by Krystin Tate

You’ve made the choice to have a prophylactic mastectomy. You’ve decided you want reconstruction. Now what?

Finding a plastic surgeon takes time and a little bit of effort. Sometimes it’s as simple as asking your breast surgeon who they work with, but there’s more digging to be done. It’s important to know you’re in good hands, and with so many different medical providers out there, how do you begin finding the right one for you?

Figure out what you want, but don’t fixate on it. Is there a certain type of reconstruction you’d prefer? Keep in mind that different doctors specialize in different procedures and it’s imperative to find one who can perform the surgery you want. That said, if a surgeon is adamant that you’re not a candidate for a certain procedure, get the low-down on why. Get a second opinion. It may be that you truly aren’t a candidate – they may be saving you from a world of trouble.

Location, location, location. If you want a surgical procedure that isn’t performed widely, such as the SGAP or one-step, you may need to travel outside your area. What is your budget? How far are you comfortable flying, and how much time can you miss from work to travel? If you’re choosing expanders, you’ll be visiting your surgeon weekly or biweekly for fills, so make sure their office is convenient to you.

It’s all about their expertise… Find out how many of these procedures they’ve performed – you want them to have done a lot. Ask to see their photos – the good, the bad, and the ugly. A good surgeon will be honest with you, and you know you’ve found a great surgeon when he or she shows you their worst photos and points out what’s wrong with them… yet you think they look great. Remember that this surgeon is, to put it bluntly, creating body parts for you – you want him or her to be a perfectionist!

…but also their bedside manner. Some people want a surgeon who is warm and fuzzy and hugs them hello. Others want someone who gets their sarcasm and deals in dry humor. The most important thing is whether the surgeon can do the job, but if you don’t feel comfortable with them, you’re not going to be happy. I consulted with at least eight surgeons and ended up with one who is not known for a soft-hearted bedside manner. I’m a straight shooter and I don’t like things sugarcoated, so it may as well have been a match made in heaven.

The word on the street. If you find a surgeon you like, ask to speak with former patients. Most surgeons will be happy to give you references – if they’re not, it could be a red flag. Google their name and read reviews; bear in mind that disgruntled patients are often the first to post online, so take anonymous reviews with a grain of salt. The FORCE website offers a Patient Experience Contact Tool where you can search for providers and get the contact info of FORCE members who worked with them.

The small print. You’ll want to make sure they’re covered by your insurance. If they are out-of-network, are you comfortable with the costs? Make sure their board certifications (American Board of Plastic Surgery) are up-to-date. Ask about failure and complication rates as well as the rate of infection they typically see. You want these numbers to be low, but you also want honesty.

Don’t just stop at one. You might like the first surgeon you meet with, but do your due diligence and see who else is out there. Whether you have few options or tons of surgeons from which to choose, give yourself the luxury of making a choice, not just sticking with the first one you see.

The feeling of being in good hands is invaluable; no surgery is easy and finding a surgeon you trust can make all the difference.