So here I am, a 15 month breast cancer survivor at 38 years old.  Like I said above, the lessons I have learned along my journey have been great and trying.  I know that every cancer is different, as is every person, so the diagnosis and treatment options are so varied – but still, there are a lot of details that cancer patients going through treatment will share.  My hope is that my story will touch someone, be that a cancer patient or someone who knows someone who is, and it will help them in some way.

I didn’t keep a written journal throughout this whole journey (now I wish I had!), but I did start one when I was first diagnosed.  I will be taking excerpts from that journal, and I will be taking things from my memory and my heart and I will start from the beginning – starting with the next post.

I welcome any comments or questions you may have and will do my best to answer every one.

Final thought:  Breast Cancer Awareness Month starts in a few days (October) – throw a “Think Pink Party” to remind all your girlfriends to get their annual mammograms.  If not yet getting mammograms, then remember to do your breast self-exams – it’s what saved my life!

When I went to the breast care clinic, the nurse I saw told me that it moves too much to be a tumor and that it’s probably just a cyst.  She said that many women my age (37) get cysts.  She stressed the part about it moving too much to be a tumor.  I felt at ease; my panic was gone.  She also said that I should go ahead and schedule a mammogram, though, just to be safe.

And so I scheduled a mammogram, but for a couple weeks away since I didn’t think it was very urgent and I had to figure out who was going to babysit my daughters (1- and 2-years old at the time) while I went for the mammogram.  The date came and I went in for the x-ray and they told me that they saw something questionable, so they’d like to do an ultrasound.  They tried to make it sound like it was no big deal, but my heart started racing.  Not at all what I expected – I was sure, based on the reassurances I had gotten from the nurse at the breast care clinic, that I was going to be told it was a cyst.

The ultrasound confirmed that there was definitely something there and it was not a cyst, and they wanted to do a biopsy.  It may be a tumor, but many women my age have fibroadenomas (benign tumors) and it may just be that, since that is more common in women my age than cancer.  The fear and tears came pouring out anyway.  I tried to call my husband but my cell phone didn’t get any reception.  This was not at all what I had expected this day to be like.

I came home feeling scared and anxious, even though I had been put at ease somewhat and truly expected to hear that it was a fibroadenoma.  I just wanted to hear the results and move on.  Five days later, I received the call – BAM!  Invasive Ductal Carcinoma with Lobular features, grade 3 breast cancer is what I was told; that was two days ago.  All I could say was “Oh my God, I’m 37 and I have cancer!”

The first couple of days I was so angry.  I kept thinking that I nursed both my babies for 14 months each and that’s supposed to help prevent breast cancer, damn it!  Of course, I nursed them because it was best for them, too, so I have no regrets, but dang it was I mad!

I’m better now.  I’m calm. I’m strong.  I will get through this.  NO WAY am I leaving my girls!  NO WAY!  NOT AN OPTION!  I feel otherwise normal; at times I feel like I should be crying but I’m not and that surprises me.  I just really want to make it through this, no more bad news please.  I don’t need any more on my plate right now.  I have to deal with cancer on top of the move, and packing, and house buying and all the other logistical details – WHY ME?

Someone out there has a plan for me and I really hope that it soon becomes clear to me – and I hope it’s good, because this is a hell of a test I’m being put through.

We are moving across country in six weeks and I still have to pack up our house, but now I have to decide what type of surgery I want to have in a week – lumpectomy or mastectomy.  How do I decide??

According to the surgeon, the survivability of both mastectomy and lumpectomy is the same.  Lumpectomy is easiest and quickest, with a 10% recurrence chance vs. 3% with mastectomy.  Since I’m only a b-cup, a lumpectomy will probably really affect my breast’s appearance – especially when it starts caving in like the surgeon said it might after 6-12 months.

The surgeon said I will need radiation therapy if I have the lumpectomy, as well as hormone therapy (probably Tamoxifen) for 5 years.  With mastectomy, no radiation is necessary, unless it turns out that there’s lymph node involvement.

I’ve been very optimistic at each step with this and have been kicked in the ass twice now, which is starting to make it hard to remain optimistic.  But, as they say, the third time’s a charm – or something like that – right?  I’m speaking of the lymph node involvement.  I pray that my lymph nodes are all negative for the presence of cancer.  This is the third huge step and it has to be a good outcome this time!

I think I’m going to go with the lumpectomy.  It seems to make the most sense.  I just want the surgery quickly so I can get it out of me before it grows any more.  I want to finish packing and get to or new home, or what I’m hoping will be our new home.  I don’t know how long short sales take, but the bank is taking its time getting back to us about our offer – c’mon, stop making us suffer!

That’s all I can handle for today.

My surgeon visited me after the surgery to tell me that it went well, but that the sentinel node biopsy was positive for signs of cancerous cells, so she had to go ahead and do the axillary node dissection.  Scary.  She said that the pathology report will indicate how many nodes were removed.  

I felt much better once I got home that evening.  It was great to see my babies!

It took a good day and a half to get the pain medicine steadily into me, and it has not completely taken the pain away.  I came home with a drain coming out from under my arm and it is so uncomfortable.

Moving my arm hurts a lot, but I can’t just let it hang down because then it pushes on the drain and that hurts, too.  The back of my arm is completely numb and I keep getting sharp, burning pains inside my arm.  The doctor said that it’s normal because of the nerves that she had to cut through to get to the lymph nodes.

Chris has been a wonderful nurse to me as well as a Mr. Mom.  He’s lost it with the girls a couple of times, but I talk him out of it.  He hasn’t once complained about making breakfast for all of us each day and doing some clean up around the house.  I think he’s really worried about me but he won’t talk about it or show it at all.

I received a call from my surgeon a couple days after the surgery and she said that I need to come back in to have more tissue removed.  The lumpectomy removed all the invasive cancer but there’s still a little bit of non-invasive (in situ) cancer that’s on the edge of what was removed she explained.  She needs to clear out 1 edge that has a “positive margin”.

What they look for in the pathology report are negative margins, which means no cancer was found anywhere on the edges of what was removed.  As for the lymph nodes, 18 were removed and only one was positive – good sign.  I guess that means that it most likely hasn’t spread.

Thank you God for finally allowing me to hear some (sort of) good news!

On July 14^th I’ll go back for the second surgery to take out more tissue – it will be simple and faster than the first time.

I guess with the positive lymph node I’ll have to have chemo.  I still can’t believe that this isn’t just a bad cold or the flu or something.  Last night I really broke down with fear because I realized, I think for the first time, that I could die from this.  I’m pretty sure I won’t, but there’s no guarantee.  There’s also no guarantee that an airplane won’t fly into my house right now and kill me.  That’s life, I guess, and I’m going to do my damndest to change mine.  I want to be healthy and damn it I want to be skinny again!!

Pathology particulars:  Invasive Ductal Carcinoma, Grade 3, Stage 2, NER2 negative, Estrogen- and Progesterone-Positive.

My first thought went to my babies – this means that they each have a 50/50 chance of also having it; what a horrible feeling to know that I did this to them.  Even though I had no clue I had it, I feel so guilty.  At least they’ll grow up knowing and being vigilant about it so they can remain healthy and hopefully they’ll never ever get this.  My poor babies.  They don’t even have a clue how serious what I have is, but I guess it’s better that way.  I’ll make it though this hurdle, too.

When I saw the surgeon next she highly recommended I have a bilateral mastectomy and oopherectomy to reduce my risk or recurrence or of getting a new cancer.

Here are some facts about cancer and BRCA2 gene mutations:

For most people who get cancer, the mutations in the genes happen at random and do not run in families. This is referred to as sporadic cancer. However, in some families, mutations that increase the risk for cancer can be passed down from one generation to the next. These types of cancers are referred to as hereditary cancers.  Approximately 5% to 10% of breast and ovarian cancers are associated with inherited mutations in cancer susceptibility genes.

BRCA2 mutations lead to markedly increased lifetime risks for breast and ovarian cancer.  Although the exact level of risk can vary among and within families, the current estimates of cancer risk for individuals who are positive for mutations in BRCA2 are:

• Risk of breast cancer (in women) up to 34% by age 50, up to 85% by age 80
• Risk of breast cancer (in men) up to 7% by age 80
• Risk of second breast cancer in women up to 50% by age 70, up to 12% risk of primary breast cancer within 5 years of the first
• Risk of ovarian cancer up to 2% by age 50, up to 27% by age 80
• Risk of other cancers (prostate, melanoma, pancreatic) may also be increased above the general population

BRCA mutation carriers have the following management options available:

• Healthy lifestyle – a high fiber, low fat diet and regular exercise, alcohol only in moderation, no tobacco products.  It’s not yet known to what effect, if any, lifestyle factors may have on hereditary breast and ovarian cancer susceptibility.  However, they may benefit many aspects of a person’s overall health.
• Surveillance & screening – for breast cancer in women, mammograms, clinical breast exams and self-breast exams on a regular basis.
• For ovarian cancer – pelvic exams every 6 to 12 months, as well as transvaginal ultrasound, and annual CA-125 blood test. Currently, there is no evidence to prove that these tests are effective in reducing ovarian cancer mortality.
• For pancreatic cancer – reports indicate increased risk in families with BRCA2 mutations; however, there currently are no proven screening methods for pancreatic cancer.
• Risk reducing surgery (for breast cancer) – prophylactic mastectomy. Studies of the effect of risk reducing mastectomy in women with BRCA1 & 2 mutations report that the surgery decreases the risk of breast cancer by 90%.
• Risk reducing surgery (for ovarian cancer) – prophylactic salpingo-oopherectomy (removal of the ovaries and fallopian tubes). Studies of women with BRCA 1 & 2 mutations who underwent this procedure report a risk reduction in the range of 95% or more. This procedure performed on women before menopause would also reduce the risk of breast cancer.
• Chemoprevention (for breast cancer) – several chemotherapeutic agents such as Tamoxifen and Raloxifen may have a role in reducing risk of breast cancer in high-risk families.

Chemoprevention (for ovarian cancer) – birth control pills reduce the risk in the general population. One study reports that this effect may also apply to carriers of BRCA 1 & 2 mutations, in whom the risk may be reduced by as much as 50%.

I had a port surgically implanted in my upper right chest area for the chemo; it saved my veins from having to be punctured every time with an IV.

I started chemo in September 2008.  It was really horrible.  It hit me every time about three hours after treatment ended and it lasted about 10 days.  I felt tired, dizzy and nauseous constantly.  It was horrible.  And it was cumulative, even though the doctor said it would not be.  It was so bad that I refused to have the 4^th and final dose – I just couldn’t take it.  I told the doctor that I felt as though I should be admitted to the hospital to have this chemo.  It was just too much for me.  I was going through this hell and had to take care of my girls, too, and it was just so hard.

Forgot to mention, my hair started to fall out on day 13, the day before my second round, so I had Chris just shave it all off right away.  Why bother going through it gradually?  He didn’t realize how emotional it would be for me and he just laughed.  The girls took a couple of days to get used to it, but they handled it pretty well.  I chose to use a scarf to cover my head; the wig that I had purchased beforehand was too itchy and hot.

While I took a few weeks off, I found a new oncologist at a breast cancer center much closer to home.  I was a great place.  I started Taxol there and it was like night and day compared to the A/C.  I was tired on the day I received the taxol, but that was just from the Benadryl that they give you to avoid allergic reactions, but that was it.  Actually, I often felt exhausted a few days later because I felt so good that I was doing too much.  I kept forgetting that my body was still receiving chemo and going through a lot and I shouldn’t over-do it.

My hair started to grow back a few weeks before I finished the Taxol.  A few weeks after I finished the Taxol, my eyebrows and eyelashes started to fall out!

She was diagnosed in 2002, at 52 years of age.  No one talked about genetic testing then.  No one talked about red flags.  Because she was diagnosed after 50, it was just thought to be a sporadic cancer, especially since there was no family history; she was the first.

There are a few factors that could possibly point to hereditary cancer, they are:  multiple family members with cancer; early age of onset; multiple cancers in the same individual; occurrence of rare cancers; and Ashkenazi (Eastern European) Jewish heritage.  My mom and dad are both of Ashkenazi descent.

No one told any of these factors.  No one told us that there was a genetic test available.  When I told my OB-GYN that my mom had been diagnosed with breast cancer, she said I didn’t need to worry about getting mammograms until age 40.

When I was diagnosed, I was 37.  That, in and of itself, was a red flag.  Add to that the fact that I had the family history, and the Ashkenazi heritage – no one hesitated to discuss genetic counseling and testing with me.  Why must they wait until someone already HAS cancer!

Of course I chose to be tested and the result was positive for a BRCA2 mutation – the “Jewish Panel” they call it.  I’ll get into what this means shortly, so keep reading.

Genetic testing isn’t cheap; it costs around $3,000-$5,000.  Most insurance companies will not pay for it unless there are those significant red flags.  Even though my mom had one red flag, given her age at diagnosis and lack of family history, her insurance company would most likely not have paid for a genetic test. 

My mom went to her Oncologist with my results and she was scheduled immediately for genetic counseling and testing.  Once I was diagnosed, however, her insurance company agreed to pay for the test without a problem.  Her results were positive for a BRCA2 mutation – surprise!  Also, she was scheduled for a breast MRI to have a baseline.  That MRI showed a 3mm mass that was of slight concern, but the doctors told her they’d recheck it in a few months.

We both chose risk-reducing surgery.  We both decided to undergo a bilateral mastectomy with reconstruction and a bilateral salpingo oopherectomy, or removal of ovaries and fallopian tubes.  The removal of the ovaries and tubes was a no-brainer for both of us.  Ovarian cancer is known as the “silent killer” because it often goes undetected until it is too late.

My mom had her oopherectomy surgery right away as I started chemotherapy.  I then had my bilateral mastectomy and reconstruction, while she waited so she could help take care of me.  Once my recovery was manageable, she was ready to have hers.

So about six months after that baseline MRI, she was ready for surgery and was sent for a pre-op MRI.  The mass had grown to 9mm.  The doctor said that nothing good grows from 3mm to 9mm in only 6 months.  We knew it was bad news, but were also relieved that at least she was already scheduled for the surgery and that the tumor will be coming out.  By the time she had the surgery, the tumor had grown to 1.2 cm.  It was malignant and was a different kind of cancer than what she had had the first time.  She’s currently going through chemotherapy.

Three weeks ago, I had my ovaries and tubes removed.  I am in remission.  My mom will be a two-time survivor.

The moral here is that if my mom had received the genetic test when she was first diagnosed with breast cancer in 2002, this may have turned out very differently.  Had she had the test, it would have showed the mutation, then my sister and I would have had the test and I would have known way before I ever got cancer that I was at risk (by the way, my sister was tested and does not have the mutation).  My mom and I would then have discussed risk-reducing surgery, and if we chose to do that, it could have prevented me from ever getting cancer and my mom from getting cancer a second time.  However, that’s not the way it happened and it ultimately took my getting cancer to trigger the genetic testing.  Without that, my mom may not have found that new tumor until it was too late.  Therefore, even though it nearly killed my mom to find out that her daughter had cancer, it saved her life.

My mom’s doctor never even talked to her about genetic testing.  Doctors need to be more aware and open to all possibilities with the care of their patients.  And insurance companies need to be more willing to pay for testing when there’s the potential to save hundreds of thousands of dollars for cancer treatment.