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  A fine needle (attached to a syringe) is inserted into the mass and a small sample of tissue is withdrawn.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.

 

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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

 

The Great Debate

Mary-Claire King, courtesy of glogster.com

Mary-Claire King, courtesy of glogster.com

Genetic testing is at the forefront of the news, lately.   It is being hotly debated in survivor circles, activist groups, and the medical community.  Why?  Well, it all begins with Mary-Claire King.

Geneticist and human rights activist, Mary-Claire King is a woman that we, in this community, owe a great debt of gratitude. Dr. King is credited with the discovery of the BRCA gene mutations.  It was she, who demonstrated that a single gene on chromosome 17 was responsible for breast and ovarian cancer in many families.  She revolutionized the study of hereditary diseases.

While always controversial, BRCA testing has become the subject of impassioned argument due to an article, by Dr. King, published in the Journal of the American Medical Association.  This publication calls for population-based genetic testing — genetic testing for all women, 30 years of age or older, regardless of family history.  Dr. King is trumpeting for something beyond cancer treatment — she wants cancer prevention.  During her 20 years of experience studying these BRCA mutations, Dr. King has found that many women do not receive testing until after their first cancer diagnosis.  This is because these women do not have enough evidence of cancer in their families to warrant testing.  It is Dr. King’s assertion that, to discover the presence of a mutation after diagnosis, is a complete “failure of cancer prevention.”  She reasons that all women should be offered testing, beginning at age 30, as part of their routine medical care.  Dr. King is quick to say that this genetic testing should not be limitless.  Modern testing can identify a mind-blowing number of mutations and markers linked to diseases.  The testing Dr. King proposes, would be focused on the full spectrum of BRCA mutations, alone, because, we can do more than just identify these mutations, we can follow treatment options that effectively reduce the odds of developing the disease.

Mary-Claire King’s proposal has not been met with universal support.  On the contrary, her words have sparked outrage in some.  The argument in support of Dr. King’s proposal, is an obvious one:  more testing = greater opportunity for prevention.  It is the opposing argument that might not be immediately transparent.

Karuna Jagger is the executive director of Breast Cancer Action.  She wrote an article for Huffington Post, entitled, “Genetic Testing for All Women?  Not a Solution to the Breast Cancer Epidemic.”  The article takes aim at Dr. King’s proposal on a number of levels.  The crux of her argument seems to be that genetic testing is not the cure-all many want it to be.  She believes that, by focusing too much on the individual patient, we lose sight of “systematic factors” contributing to the disease (I feel it should be noted that one of BCA’s biggest platforms centers on the anti-fracking movement).  She, therefore, cautions us that supporting Dr. King’s proposal could be at the detriment of finding a cure for breast cancer.

When I first became aware of Ms. Jagger’s strongly-worded article, I was offended.  My gut reaction was to interpret her article as an attack on Previvors — a belittling of the advances being made through genetic testing (a platform I am very passionate about).  I wondered if the real issue was one of funding — don’t put your money toward testing because hereditary cancer accounts for a small percentage of total breast cancer cases.  I believe it is short-sighted to disregard population-based genetic testing because a mere 5% of breast cancer cases are linked to BRCA mutations.  Our goal in fighting breast and ovarian cancer should, ultimately, be prevention.  Do not get me wrong, treatment and cure are of the utmost importance, but I want to prevent the disease from spreading.  I want future generations to remember it as a concern of the past, outdated by medical advances.  I, personally, believe prevention is the key to that future.  Genetic testing is one avenue that must continue to be explored as a means to that end.  Isn’t it possible that we can only attribute 5% of breast cancer cases to genetic causes because we have only identified a small number of BRCA mutations?  Isn’t it possible that, the more we test, the more knowledge we gain, and the more hereditary factors we can pinpoint in breast cancer cases?  My point is, don’t discount the potential benefits of this plan solely because of the 5% number.  There are other numbers to take into account.  For instance, those found with a BRCA mutation have an 87% chance of developing breast cancer and over a 40% chance of developing ovarian cancer.  I was horrified to think that Ms. Jagger, a woman I so admire, would insult Dr. King’s life-saving advancements, and all we go through as the HBOC community, in such a manner.  I was, however, wrong in making these presumptions.

Upon further reading, I found myself agreeing with many points in Ms. Jagger’s argument.  While much of her dissention is based upon a fear of placing too much emphasis on hereditary factors, and upon squabbles over the potential cost of universal testing, she goes further than this.  She asserts that one of the most dangerous parts  of Dr. King’s proposal is that it removes genetic counselors from the equation.  The emotional ramifications of genetic testing are extreme — I can’t imagine going through it without a professional to guide you.  I found myself nodding along to Ms. Jagger’s concerns that you can not make fully informed medical decisions without the aid of counselors.  The decisions made during testing, indeed, affect those beyond ourselves — they affect generations of our families.  How can an individual be expected to make such decisions on their own?

Furthermore, Ms. Jagger ponders over the proposal’s restriction of information given to patients.  The only findings one would be made aware of would be BRCA mutations.  This means that, if another mutation or marker is found, you would not be told of it, even if it is linked to cancer.  This is a tricky area.  As Ms. Jagger warns, there are any number of moral and ethical issues involved here.  What, as patients, should we be allowed to know?  Who’s decision is that to make?  Is it Dr. King’s?

My point is this:  do not be quick to take sides in this debate.  Learn the facts.  Hear each side’s argument — there are valid, important points to each.  I am a heavy proponent of genetic testing and prevention, but is this specific proposal the right answer?  What do you think?  Educate yourself and others.  We need to work together, as a community of those fighting cancer, not tear each other down.

 

 

 

Opening for October 1, 2014

The reason behind my absence.  My new son.

The reason behind my absence. My new son.

Dear readers,

It’s been a very, very long time, but I’m back!  This is quite the auspicious day for me to return.  Not only is this National Previvor  Day, and the beginning of Breast Cancer Awareness Month, but two years ago today, I was diagnosed with stage 2 breast cancer.  I don’t want to focus on my diagnosis, though, I want to celebrate.  Let’s celebrate life.  Let’s celebrate each other.  Let’s educate the world about what it means to be a previvor, a survivor, an individual living in the world of hereditary cancer.

To quickly address my absence (I owe it to all of you, who have supported me from the beginning), I had a baby!  It was a complicated, difficult, scary pregnancy, which is why I struggled to keep up with BRCA World.  After a bit of a rough start, my baby boy is now healthy and strong.  A pregnancy so soon after cancer is ill-advised, to say the least, but I am doing fine. You also may notice our new look.  I’m still tinkering with it, so feel free to let me know what you think in the comments.  I will be adding new posts when I can, though, not daily.  I just don’t have the time.  My goal is to post, at least, one day a week.  I’m getting back into the groove of my former, pre-pregnancy life, so please bear with me.

Today, is a day of hope.  A day to educate and spread more than just “awareness.”  Use today to open your mouths and type your fingers to the bone.  As “aware” as the world is about breast cancer, few know about hereditary cancer.  Even fewer know the term, “previvor.”  Let’s change that.  It’s time for some #RealTalk.  Make your words heard and seen.

It’s nice to be back.

Yours, Shannon

***For the readers familiar with my unabashed love for all Eminem music:  please read this opening with “Guess who’s back (back, back); back again (gain, gain).  Shady’s back (back, back).  Tell a friend (friend, friend).  Guess who’s back; guess who’s back; guess who’s back; guess who’s back…” running on a loop in your head.

What Will You Fight For?

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My brother in Afghanistan (far left): one of the many people I would fight for, sacrificing for his family and this country.

Last night, I read a very self-aware, probing article on Huffington Post, “The Most Important Question You Can Ask Yourself Today.”  Please go read it.  It is a good progression from my post about our holes.   The article poses the question, “What are you willing to struggle for?”  “What are you willing to experience pain for?”

I love this.  We all want happiness, health, wealth, a good job, great family…but are you willing to truly fight for it?  Will you make the tough sacrifices to achieve them?  That’s the dividing line.  If you’re not willing to sweat and diet, you’re not going to get the enviable body.  If you don’t put in the long, grueling hours, you won’t make it to the top of your profession.  So, what are you willing to struggle for?

For those of us that are parents, we sacrifice for our children.  Our bodies are not only stretched to all creation and back during pregnancy, but afterwards, we are kicked, poked, pulled, scratched, tugged, hit, slapped…all in the name of keeping our children happy.  We give up our own lives and goals to help them achieve theirs.  And we do it gladly.  This is the easy answer to the question posed.  But what else?  What means so much to us that we fight?

With BRCA and HBOC, every decision is hard-fought.  We willing experience the pain to survive.  Clinical trials, surgeries, chemo, radiation, experimental drugs…we do these things to live…for ourselves, our children, our families.  We do it to fight for the future and to help others.  We struggle for the chance to breathe each breath.

Cancer changes you.  It brings your life into sharp focus.  Since stepping into this world of cancer, my answers to these questions are different than they would have been before.  That doesn’t mean my answers are more noble or important now, they are just different.  Priorities change when you see your mortality in the mirror each morning.  Frankly, I miss the woman, who would have answered those questions confidently and without hesitation — I would have given you a numbered, color-coded list of my pain-worthy goals.  There would have been many of them.  Now?  Not so much.  My list is small, comprised more of faces than items.  I would give any body part, walk though fire, sacrifice everything for their happiness.  I would, gladly, struggle each day to find a cure for cancer because my son and nieces depend upon it.  These are my answers now.  These are the things that matter to me now.

So, why do you fight?  What is worth the pain to you?

News Links, 11/14/2013

male-breast-cancer-22

I keep forgetting to link to this, but it’s so important:  there is a new BRCA group on facebook for MEN!  Please check it out, if you are interested.  There aren’t many like it.  Facebook.

Who needs a book club, when there’s a gene club?  23 and Me.

Karuna Jagger’s open letter to congress:  Your Chemical Safety Improvement Act isn’t good enough!  Huffington Post.

Opening for November 14, 2013

Dear readers,

I took a few days off to deal with some new health problems. I’m back now, though, and when I learn more, I will be happy to share.

There was a great discussion on twitter last night, put together by @sloan_kettering, about hereditary cancer. I’ll post the highlights a little later, but highly encourage you to check out the full #CancerSmart discussion, yourself.

I am writing this opening from my phone, but will be posting as soon as I get to my computer. Thanks for your patience.

Have a great day!

Yours,
Shannon