My Cancer Story

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What is Oncotype?

After your surgery and your cancer is removed, it will be sent off to be tested.  One of the tests that may be done is an Oncotype DX test (performed by Genomic Health).

Oncotype DX is a test that examines tumor tissue at a molecular level, and gives information about a patient’s individual cancer. This information can help your oncologist individualize your breast cancer treatment. The Oncotype DX breast cancer test has clinical evidence that validates its ability to predict the likelihood that the patient will benefit from chemotherapy, and the potential for recurrence in early-stage breast cancer. The Oncotype DX test is intended to be used by women with early-stage (stage I or II), node-negative, estrogen receptor-positive (ER+) invasive breast cancer.

The result of the test is reported as a number between 0 and 100.

A lower score means the cancer has a lower chance of returning, and a higher score means that there is a higher chance of the cancer returning.

The score also provides important information regarding the potential benefit of adding chemotherapy to hormonal therapy. A low score indicates that the patient will receive minimal benefit from chemotherapy, whereas a patient with a high score can have significant benefit from chemotherapy.

Because everyone’s body and tumor are unique, obtaining a Recurrence Score can help make treatment decisions tailored just for you.

My Oncotype score for recurrence was 38 (my oncologist said the highest score she had ever seen was 50 so 38 was pretty high), which equated to a 26% chance of recurrence and a likelihood that I would benefit from chemotherapy.  So I did the chemotherapy and had a double mastectomy to mitigate this risk to the extent possible.

Look for Signs

I think God sends us signs and tries to tell us things in ways that He thinks we will understand.

When I first went on short-term leave and was about to start chemotherapy, I was really nervous about how we would make everything work financially (I would only be on a partial salary while on ST Disability and my husband is a stay-at-home Dad) and whether I would be OK in the end.  I worried I would leave my daughter without a Mom and my family without an income.  I wanted, and needed some reassurance and I got it from a carton of eggs….

We had just started eating more healthy protein as a part of a new diet, so we ate eggs just about every morning for breakfast.  One morning, I decided to make scrambled eggs and I opened a new carton of eggs.  One of the eggs was broken, so I threw it down the drain.  I pulled out two more eggs and cracked them into a bowl to whisk them up and both eggs had double yolks!  I had heard an old wives tale that a double yolk was good luck, probably because it is so rare, so I thought that maybe this was a sign from God; a sign that things would somehow work out.

Over the next several days, my husband and I kept breaking the eggs to scramble and every time there was a double yolk.  Every one of the eleven remaining eggs in that carton, had a double yolk!!!  I cannot even imagine what the odds are of that happening but it did.  I then knew this was definitely a sign from God telling me everything would be OK.

We saved the carton as a tangible symbol of the message.

When Will My Hair Grow Back?

OK, so chemotherapy makes your hair fall out.  But when does it start to grow back?  I looked on-line and talked to a lot of people as I was going through chemotherapy so I could start to plan for the days when I had hair again.  The answer was invariably the same – everyone is different.  I hate that answer.  I was not looking for an exact date, just some idea about the timing….was it going to be 3 months, 6 months, or, God forbid, a year before I could be seen in public without a hat.

Here is what experienced and hopefully this will help you.

By the time of my last chemotherapy treatment on January 10, 2013, I had no hair.  My chemo cycle was three weeks long so I knew that no hair would even begin to grow until at least three weeks following that last treatment.  Slowly it did come in but it didn’t come in uniformly.  By my birthday, two months later (March 13), I had what I would consider a little boy’s buzz cut – so my head was covered for the most part, but the hair was only about a half inch long.  By the end of April, I returned to the office sans hat.  The hairdo wasn’t the most becoming…more like a little boy’s parted comb over but it was OK.  I could be seen without feeling like I looked like a cancer patient.

I am now 5+ months following my last chemotherapy treatment.  My hair is still short but definitely getting longer (it is about an inch and a half now).  It is really curly too.  I had curly hair before but I don’t think it was this curly.  I did hear from most people I spoke with that your hair will grow back curlier than before.  A friend of mine had pin-straight hair and after chemotherapy, she had a nice wave to her hair – she is delighted.

So, if you are in the midst of chemotherapy, hang in there, your hair will grow back within a couple of months.  It doesn’t feel like you will ever get there but you will!!!


Concerns About Losing Your Hair

When my oncologist was telling me that I needed to have chemotherapy, besides the thought of being incredibly sick, I thought about losing my hair.

My hair had always been one of my greatest assets.  When I was in high school and college, it was waist-length, thick, wavy and beautiful.  Once in Corporate America, I cut it shorter and the wave turned to loose curls.  I loved my hair.

So I mentioned to my oncologist, with tears in my eyes, “But what about my hair?”  Her response?  She shrugged it off saying, “so you wear a wig.”  And she looked at me like she thought I was a complete idiot for saying what I said.  Basically, she completely dismissed my feelings.  OK, so losing your hair does not compare to someone losing their life to cancer but at that moment, that’s where my mind went and that was my concern.

Don’t let anyone dismiss your feelings about losing your hair or anything else.  If they do, cross them off the list of people you can turn to when you need to vent, complain, cry etc. because they will not understand.

I dumped this oncologist – she may be very smart but she just didn’t get the personal stuff.



Actually Losing Your Hair

I had gone to several websites (OK, more like hundreds) to find out as much as I could about what I was going through.  I went to some sites that were about cancer, in general, (not specifically breast cancer) and read that not everyone going through chemotherapy loses their hair.  That statement did not pertain to breast cancer.  The common treatments for breast cancer are drugs that WILL cause your hair to fall out.  So, while I wanted to hold out hope that I would escape that, the truth is, there was no escaping it.

I thought about some of the women I had seen sitting in the waiting room at the Cancer Center with big chunks of hair missing.  That thought was sad and disturbing.  So, decided not to wait for cancer to take it from me – instead I was going to control the situation (yeah, I am a bit of a control freak).

So, right after my first chemotherapy treatment, before my hair actually started to fall out, I got my beautiful curls cut off.  I went to a wig shop so I wasn’t in sight of a dozen other people gawking at me and wondering what I was doing.  The woman there cut my hair to about three quarters of an inch long.  I thought I would be depressed but the act was actually incredibly empowering.  I went home and wrote an email to a couple of friends with the tag line, “Right now, I am the bravest woman in the world!”

About two and a half weeks after the first chemotherapy treatment, my hair really started to fall out.  Even though it was cut short, soon, there would be spots where my scalp would be showing.   Wanting to control the situation again, I asked my husband to just shave my head.  While it was empowering, I missed my hair and I hated looking at my reflection in the mirror.  But at least it was on MY terms – this disease was NOT going to control everything.

I never actually wore a wig.  I wore cute little hats to cover up my lack of hair – I was fortunate that I went through it in winter!!


Genetic Component

Genes are the body’s building blocks.  Genes contain the “recipes” for the proteins that cells need to function normally.   If the genetic recipe contains a mistake (referred to as a genetic mutation or genetic abnormality), the mistake may cause the cells to function abnormally and in some cases, can cause cancer.

For breast cancer, specifically, there are two known gene mutations that, if possessed by an individual, he/she will have a high likelihood of developing breast cancer, as well as ovarian cancer.  These genes are referred to as BRCA1 and BRCA2 (“BR” for breast and “CA” for cancer).  Most inherited cases of breast cancer are associated with these genes.  According to Myriad Genetic Laboratories, the only company currently performing such genetic tests, women with an abnormal BRCA1 or BRCA2 gene have a 56%-87% risk of developing breast cancer in their lifetime (as compared to 8% for the general population) and a 27%-44% risk of developing ovarian cancer (as compared to <2% for the general population).

The test itself is simple – it is a blood test – and it may be covered by insurance if you have a family history of breast/ovarian cancer.  However, you must be prepared for the results.  If you test positive for the genetic mutation, you must consider what you will do with that information.  It may initially be frightening but knowledge is power and you can take action to mitigate the risk of getting cancer (or having it recur) if you have the genetic information.  You may opt for hormonal therapy such as Tomoxifen which has been shown to reduce the risk of breast cancer in some high-risk women.  Or, you may choose to have a preventive mastectomy and/or preventive removal of your ovaries (called an oophorectomy) to reduce your risk.

But if you have a BRCA1 or BRCA2 mutation and if hormonal therapy or preventive surgery are not what you choose, at very least, you should

  • be religious about doing monthly self breast exams starting at age 18
  • get yearly mammograms and MRIs beginning at age 25
  • get a pelvic exam, as well as a transvaginal ultrasound twice a year beginning at age 35

Helping your family

BRCA1 and BRCA2 mutations are passed on through families from parent to child.  Once your specific genetic mutation has been identified, you will know that your close blood relative (parents, children, brothers and sisters) have a 50% chance of having the same genetic mutation.  More distant relative (aunts, uncles, cousins) may also have the genetic mutation.  But you can help.  If your family members wish to get tested for the genetic mutation, they will need to know your specific mutation.  The best solution is to provide a copy of your test result so Myriad can test for that specific mutation alone, at a greatly reduced cost.

When are you Considered a Survivor?

Once I completed my chemotherapy and the worst part of my nightmare was over, I thought about being a survivor.  You often hear a person say something like, “I am a 5-year survivor”, but then it occurred to me, when am I technically considered a breast cancer survivor?  What marks the first day as a survivor?   Was it the day I had the lump removed?  Was it the day I had my last chemotherapy treatment?   Will it be when all of my surgeries are done including the reconstruction?  Or is it something entirely different? 

I went out on the web and started searching.  The general school of thought was that once you find out you have breast cancer you are considered a survivor.  That seemed completely ridiculous and counterintuitive to me!  In my mind, when I found out I had cancer, that just made me a woman with breast cancer, not a survivor.  However, I found a number of web sites that said that though this is the common school of thought, it is a personal decision as to when you mark the beginning of your survivorship.  I liked that answer much better.

I thought about it.  For me, it certainly was not the date I found out I had cancer, so strike that off the list first.  And it wasn’t the end of chemotherapy (though surviving it was heroic!) because I technically didn’t have cancer when I went through the chemotherapy; it was adjuvant therapy.

Then I made my decision….the day my body was rid of cancer was the day I had my lumpectomy – that was the day I was going to go with.

So I have been a breast cancer survivor since September 28, 2012!

What is in the Pathology Report?

What is in the Pathology Report?

Once a tumor is found, a biopsy (the sampling of a piece of the tumor) or lumpectomy (removal of the tumor) often follows.  The sample or entire mass is analyzed by a pathologist (a doctor who looks at tissue under a microscope to determine if it is normal or affected by disease).  He writes a pathology report to document his findings.

Parts of your Pathology Report

Personal Information.  This is your personal information such as your name and the date of your procedure.  Check to make sure it is your pathology report!!

Specimen. This section describes where the tissue sample was taken from (e.g. the breast, or lymph node).

Clinical History.  This is a short description of you and how the breast abnormality was discovered.  It also describes the type of procedure that was done (e.g. biopsy) (more…)

Radiation Therapy

Radiation therapy is targeted treatment of your cancer.  The purpose of this treatment is to eliminate any cancer cell that may have been left in and around where your tumor was located.  You may have radiation treatments immediately following your surgery (if you are not going to have chemotherapy treatments) or after all of your chemotherapy [chemotherapy] treatments are completed.

Radiation may have some side effects while you are undergoing the treatments.  Some women get them and some don’t.   The most common side effect is fatigue – eating a high protein diet may help fight radiation fatigue.

The other common side effect is burns. They can range from a slight tingling sensation to blisters and peeling, like a severe sunburn. There are several creams that help this.  One highly recommended cream is Biafine cream.

The biggest drawback to undergoing radiation therapy is the fact that you have to go every day, five days a week, Monday through Friday, with the weekend off, generally for six to eight weeks. (more…)


Adjuvant vs. Neoadjuvant Chemotherapy

When therapy is given to patients with no evidence of cancer after surgery, it is called adjuvant therapy. Surgery is used to remove all of the cancer that can be seen, but adjuvant therapy is used to kill any cancer cells that may have been left behind but can’t be seen. Adjuvant therapy after breast-conserving surgery or mastectomy reduces the risk of breast cancer recurring.

Even in the early stages of the disease, cancer cells may break away from the primary breast tumor and spread through the bloodstream. These cells don’t cause symptoms; they don’t show up on imaging tests; and they can’t be felt during a physical exam.   However, if they are allowed to grow, they can establish new tumors in other places in the body. The goal of adjuvant chemotherapy is to kill undetected cells that have traveled from the breast.

When chemotherapy is given before surgery is called neoadjuvant therapy.  Generally, neoadjuvant therapy uses the same chemotherapy drugs that are used as adjuvant therapy (only it is given before surgery instead of after).  The goal of neoadjuvant chemotherapy is to shrink large cancers so that they are small enough to be removed with less extensive surgery.  Some breast cancers are too big to be surgically removed at the time of diagnosis. These cancers are referred to as locally advanced and have to be treated with chemotherapy to shrink them so they can be removed with surgery. (more…)