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Nip, Tuck, and Pray

Brca world - operationBiopsies.  They are a way of life when dealing with cancer.  For those in the HBOC community, who have not had preventative surgeries, you dread the testing…the waiting…the watching.  It’s a cycle — a heart wrenching, nerve wringing cycle.  But it’s one that we endure in an attempt to prevent cancer.

Two weeks ago, I underwent a cervical biopsy — they sliced off a section of my cervix.  I was in pain…I was scared…I waited…and, luckily, it was benign.  It got me thinking, though.  We go through this, seemingly, endless cycle blind.  We are told to go through screenings, so we do.  We are told to go through procedures, so we do.  We wait and we worry…partially, because we have such little control over the outcome, and partially, because we don’t know what to expect.

The unknown is scary, and there is so much of it with cancer.  I can’t help you with the waiting that comes after testing.  Personally, I pray and hold my loved ones closer to my heart.  But there are no wise words to make it any easier.  All of your fears float in front of you, begging to be unleashed.  It’s awful and nothing I say will take that away.  What I can do, though, is explain what you may encounter during your biopsies, thereby, extracting one unknown element from your pile.

So, what should you expect in a biopsy?  A biopsy is taking a sample of suspicious tissue and testing it.  There are many types of biopsies you may encounter along your journey.  Here is a breakdown of the most common:

Breast Biopsies

After your mammogram, ultrasound, and/or MRI, you may get a call from your doctor, saying they want to conduct further testing on an area of your breast.  What type of biopsy is done will depend on how big the suspicious area is, how many areas there are, and what it/they looks like, as well as your personal preference.

Fine Needle Aspiration

This biopsy is very much what it sounds like.  A fine needle (attached to a syringe) is inserted into the mass and a small sample of tissue is withdrawn.  Your doctor may use a local anesthetic to numb the area before the procedure begins.  When the doctor can feel the lump, the needle will be placed directly into it.  If the lump cannot be felt from the surface of the skin, an ultrasound may be used to guide the needle.  This is a quick and, mostly, painless procedure.

Core Needle Biopsy

In this biopsy, a hollow needle (larger than the fine needle) is inserted into the abnormal area and a cylindrical sample of tissue (core) is removed.  This is done under a local anesthetic.

A biopsy with stereotactic mammography might by necessary if the mass is not palpable.  During this needle biopsy, you are placed facedown on a mammogram table with two holes for your breasts.  Your breasts are compressed and imaging is done to guide the needle.  Some medical providers may use a vacuum-assisted probe in this biopsy.  For these procedures, the skin is numbed and a very small cut is made.  A hollow probe is put in through the cut and guided into the abnormal area of breast tissue.  A cylinder of tissue is then pulled into the probe through a hole in its side, and a rotating knife inside the probe cuts the sample.  The needle is inserted and removed quickly.  You may feel a pushing and pulling sensation on your breast, which can cause some discomfort.

Other core needle biopsies can be guided by ultrasound or MRI.  Core biopsies are outpatient procedures that leave little-to-no scarring.

Surgical Biopsy

A surgical biopsy is the most invasive and most accurate form of biopsy.  There are two types of surgical biopsies, incisional and excisional.  You will be taken into an operating room for either form of surgical biopsy.  The breast area will be numbed and IV sedation given.  There will be scarring and, depending on the amount of tissue removed, the shape of your breast may be affected.

Incisional biopsies are performed on very large masses.  Though no longer very common, an incisional biopsy surgically removes a portion of the abnormal tissue.  An excisional biopsy removes the entire suspicious area plus a small amount of the surrounding normal tissue.

Ovarian Biopsies

Ovarian biopsies are more straightforward than breast biopsies.  There are two kinds:  laparoscopy and exploratory laparotomy.  Both are done in an operating room, under general anesthesia.  The size of the mass determines which procedure will be done.

A laparoscopy will be performed on small masses.  During this procedure, small incisions will be made in the stomach and pelvis.  Specialized tools will be inserted and used to remove the entire area.

Exploratory laparotomy will be performed on large cysts, or masses.  This procedure is a conventional surgery.  Larger cuts will be made into the stomach and abdominal muscles to gain access to the pelvis.  The abnormality will, then, be removed.

**For more information, please visit Susan G. Komen and Cancer.org.  The link to cancer.org is wonderful.  It was written by women, who have gone through biopsies.  It has lots of great information and was the main source of the information in this article.

 

Opening for the Week of October 6, 2014

Good morning readers!

Thank you for all of the support last week.  I’m excited to be posting again, but am still fiddling with logistics, so forgive me for any hiccups along the way.  I am hoping to post a few different articles this week.  To start us off, we will have an article about biopsies.  Ideally, I will also post about privacy law changes and what they mean for genetic testing, as well as a more personal entry about support groups.  October is always a busy time for this community — lots of new and noteworthy developments are thrown at us.  I will do my best to keep up.

As always, my mission for you is to speak up and make your voices heard.  Educate those around you.  Let’s change our futures.

Yours,

Shannon

 

Yes, We Have Holes, But We Carry On

brca world - strengthWe gain strength, and courage, and confidence by each experience in which we  really stop to look fear in the face… we must do that which we think we  cannot.  — Eleanor Roosevelt

We are stronger than we know.  Fear and circumstance knock us down, but we are resilient.  The world continues to move around us and, though we are surprised and spiteful of this constancy, we move along with it.  That, in itself, is strength:  the ability to continue breathing, despite the holes in our lives, carved out by loss.  We carry on.

Strength does not always mean fight.  It does not mean a lack of tears or terror.  It means continuing to live despite the loss, and fear, and hurt.  Despite the holes.  It is drawing courage from the experience.  It is a refusal to stop breathing.

I have added a few new holes to my heart this year.  One was added this weekend.  Each time, I crumble quietly, in isolation.  When I was diagnosed with breast cancer, I panicked.  I collapsed.  But there were decisions to be made…other people to comfort…life continued.  Curling up in the fetal position, in a cave somewhere, wasn’t an option (I checked).  What are our options?  We make our decisions.  We continue to live.  We carry on.

Getting diagnosed with a BRCA mutation, or cancer, drops you to your knees.  But you are more powerful than you think.  You will move on.  You will live.  It may not seem like it, but you will.  You have reserves of strength you never knew possible.  You will choose your path — one decision at a time.  You will pick yourself up and keep walking.

It never ceases to amaze me what might and courage can be found in this community.  It is not always the in-your-face kind.  Sometimes, it is quiet.  It is the will to carry on.  And it isn’t just strength of the individual, but of the community.  When you can’t find the will to walk on your own, we are here to pick you up and carry you.  We are not fazed by the holes, as we have them too.

Find your power in your hurt.  Those holes can breed courage.  Define yourself by this, not by those damn BRCA genes or tumors.  The wounds we suffer are not who we are.  We are the strength.  We are the stubborn refusal to yield.  We are the hands that help others walk.  Define yourself by these qualities, not by the holes.  The holes may remain, but we will carry on, as THAT is who we are.

Opening for November 8, 2013

Dear readers,

Yesterday became even crazier than I expected and I didn’t have a chance to post the pregnancy article. I’m going to fix that today — promise. Expect a bigger, though late-starting, column today. I’m blogging on-the-go from my phone right now, probably won’t be able to post the big articles until lunch time.

Do me a big favor and find a reason to be happy today. I’m tired of seeing people choose to be unhappy because they refuse to see the good around them. Caught up in themselves and their perceived problems, they can’t see past their own nose, to realize they are missing out on life. Take time to laugh and smile. It will improve your life exponentially, I promise.

I’ll jump down from my soapbox now (I get a nosebleed if I stay up there too long). Have a great weekend, and check back in this afternoon for new post.

Yours,
Shannon

Opening for November 5, 2013

brca world - advocacyDear readers,

Thank you for the great response to all our posts yesterday.  I love the feedback and appreciate you checking in with us.  The Partnering For Cures conference was in full swing yesterday and continues today.  I will be posting a rundown of what I have learned, following along on twitter (#P4C2013), later today.

One of the biggest concerns at the conference has been patient involvement and advocacy — something I preach on about daily.  We NEED to be involved in cancer research; we need to be involved in the discussion; but the scientists and doctors need to hear us when we speak.  It’s a two-way street.  We need to assert ourselves.  They need to let us in on conversation.

I also want to get to the #BCSM chat from last week (as well as the one from last night).  The topic was our “invisible scars.”  I love this topic because it is so ripe for discussion.  We develop so many scars when facing cancer, or the potential for cancer.  Most remain forever unseen, but always present.  Sharing them can take away some of their power.  That’s why we have this community:  to share,to let our voices be heard, and to strengthen each other.

As always, thank you for reading.

Yours,

Shannon

Let Her Go: In which I speak of my troubles in the vaguest terms possible

brca world - yp logoLetting go of a dream, even in the place of a new one, hurts.  It’s loosening your grip on hope.  Dreams are sewn with hope and optimism.  They are hard-fought footholds in your heart.  Sometimes, we clutch them tightly, privately…wishing for fulfillment, unbeknownst to the world around us.

I think those are the dreams that are the hardest to lose. I have lots of those.  I fear speaking them aloud — I can’t share the pieces.  The losses, setbacks, and successes remain mine.  I find comfort in that.  I know it makes me seem cold, at times, but I warm in the blanket of my secret hopes.

I’m no longer a child, with the soft scent of powder of my skin.  I make decisions with the lives of others at the forefront.  The luxury of selfishness is but a memory of my twenties.  I miss the safety of being a child, knowing my parents will make everything better.

My dad likes to say that I never take the easy path.  I like to find the most difficult, with the greatest reward.  Today, I stand before a few different paths.  I am unsure and scared.  Taking one path means I give up on another.  So what do I do?

Being BRCA+, or being diagnosed with cancer, presents you with a million different paths…a million different hopes and dreams and fears.  It’s easy to feel isolated under the pile of choices.  Take comfort in knowing there is a community out there, waiting for you with open arms.  Men and women walking a similar road.  I found a great one on facebook, Young Previvors.  Those girls have been with me through every step of this experience.  They’re family, even though we have never met.  There are many others, as well.  Facebook is a wealth of support groups for the hboc community:  BRCA Sisterhood; Beyond The Pink Moon; Prophylactic Mastectomy.  They are all wonderful, filled with caring women, ready to support you through anything.  I’ve talked a bit about the importance of mental health treatment, as a part of hboc.  These groups, while obviously not a substitute for professional assistance, let you know you’re not alone.  If you’re facing a diagnosis, seek these groups out.  It’s the best advice I could ever give.

So, They Say You Have a BRCA Mutation…

brca world - GINA 3Written by Krystin Tate

So you’re BRCA+… now what?

Finding out you tested positive for a BRCA mutation can rock your world. You might feel like shoving the results in a desk drawer and running away. You might feel like digging a fort under your bedsheets and hiding for a year (that was me!). You might feel like screaming and punching things (I recommend a boxing class). And hey, it’s all okay! But what should you do exactly? How do you get through the crazy, tumultuous time that is the first step of your BRCA adventure?

Relax. Yes, this may sound easier said than done – but take a step back. You don’t have to figure it all out at once. You don’t have to have the answers or know what you’ll do next. Give yourself space to figure out the next step and don’t rush yourself. Remember that while this is brand new information, your being BRCA isn’t new; this mutation is something you were born with. Taking a few days to think it over won’t hurt anything and your body is not suddenly rebelling against you – even if it feels like it.

Feel your feelings. You might feel any number of things, and some people may just not understand. That’s okay! You’re entitled to feeling sad, angry, numb, happy, or whatever else. I probably cried for a month and a half when I got my results, and letting myself feel my feelings is probably the best thing I did throughout this entire process. It gave me time to acclimate myself to my new reality and it gave me the strength to figure out my next move.

Find your people. Although a lot of people in your life may not “get it,” there are tons and tons who will – you just have to find them. The best place for this, I’ve found, is the internet. There are numerous Facebook groups, blogs, message boards, and websites devoted to BRCA and high-risk women. Each tiny corner of the internet is a little different, but there’s something for everyone. I’m sarcastic and irreverent and I’ve found people with whom I can be myself who also understand the emotional days – and it’s made all the difference. Don’t block out the people in your life, either; although they may not relate first-hand to BRCA, it’s important to get support wherever you can.

Do your research – carefully. There is a lot of info out there and some of it’s scary, some of it’s important, and some of it’s patently false. Be sure you’re getting your information from legitimate sources and be aware that everyone’s a little bit biased; what’s good for the goose isn’t always good for the gander. A lot of BRCA decisions really do come down to a personal choice – find the information on which to base that choice, but do it carefully. Some books can help with this as well, particularly Positive Results and The Breast Reconstruction Handbook.

Doctor-shop – when you’re ready. There’s something to be said for seeing a medical professional early on so you can learn how to work BRCA into your life. That said, you want to find the right doctor (or surgeon), and that can take time. Don’t rush into anything or feel pressured into choosing a doctor who doesn’t make you comfortable.

Remember that your life isn’t over! I felt like the world was falling in. Although I’m always a bit overdramatic, I know my reaction wasn’t unusual – sometimes, BRCA just sucks. I never believed it until it happened, but I promise it becomes part of your new normal. BRCA adds stress to your life and it threatens you with cancer, but it can’t take away who you are. It can’t take away all the good things in your life. Give it time to sink in and it will find its rightful place as just one aspect of yourself and your life. Promise.