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??

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!

Apparently the weight gain is from 1) steroids that they pump into you with the chemo and 2) chemo makes your body basically go into menopause – or “chemopause” as some call it – which involves a slowing of the metabolism, and, thus, weight gain! Now I have body image issues on top of everything else!

I don’t know what I would have done, or could have done, differently had I known, but I find it ridiculous that this is not told to patients beforehand.  Do the doctors and nurses think that we’d consider not having chemotherapy if we were told ahead of time that it will make us gain weight?

The recovery was much more difficult than I had anticipated and the pain much more severe.  I couldn’t bend over or stand completely erect.  I couldn’t twist my torso.  Getting in and out of bed was very hard, too – I had to use a large step stool because holding my leg up too high was painful also.

After the initial few weeks of recuperation, I did not look anywhere near normal.  Perhaps I didn’t ask the plastic surgeon enough questions about what to expect, but then I had no idea what to ask having never been there before.  I thought that after a few weeks of recovery and healing I would have a flatter belly and nice, new, perky boobs. 

That was not the case.  I was left with pouches of fat on my hips where the hip-to-hip incision was done.  The surgeon said that it was normal because of how they removed skin and pulled skin down to reattach …something like that.  Anyway, he said that it will be fixed.  He keeps saying that he’ll “fix anything that’s not perfect” every time I see him.

My boobs are not so perky and they seem to continue onto my sides and it’s gross.  I can’t wear a bra because of that extra skin and puffiness on the sides.  He says that will be fixed, too.

I guess I should feel reassured and maybe I was naïve to think that I would look great and transformed several weeks after the surgery.  I will try and be positive and patient and see what happens after 6 months.

Well, my oncologist wasn’t exactly thrilled with that answer.  She wanted to take my case to the “tumor board” and get more opinions.  She did and then told me that out of 5 radiation oncologists there, 3 said yes and 2 said no – it caused some controversy apparently.  She asked me to go to another radiation oncologist for a second opinion and so I did.   This time, I was told that, although it’s borderline, I should just do it because I’m young and I have young kids and I should do everything in my power to improve my chances of survival and minimize potential for recurrence.

My Oncologist agreed that I should do everything I could to improve my chances, too.  Soooo…reluctantly, I agreed to do it only because I couldn’t think of a good enough reason NOT to.  I was to receive 28 sessions of radiation.

The radiation itself was easy, but going 5 days a week was a pain in the ass.  Toward the end I was quite sore and raw in a few places in my armpit area.  The sore spots in my armpit began to welt but I thought it was just my wounds healing – so did my Oncologist.  It started to spread down my inner arm to my elbow and it itched like MAD!  I thought I had bed bugs or scabies!  A week and a half later I saw my radiation oncologist for a follow up and she took one look at the rash and told me I have Shingles. Apparently no one bothered to tell me that cancer patients sometimes develop shingles from their weakened immune systems.  Had I known this, I would have sought treatment sooner for this rash – as it turns out, I found out that shingles is best treated when the medicine is started within 72 hours of the rash showing up.  I was well beyond that.

The medicine I was given did not help at all.  It itched beyond anything I could even try and explain.  After 4 weeks of having this rash, I woke up one morning in serious pain all over and I had swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection!!

When I left the hospital, the rash and itching was not better.  The infection was better, but I had to go home with a drain coming out of my armpit; it came out a few days later.

After 8 weeks of suffering, I went to see my Oncologist for a follow-up visit and she, like me, had had enough of this rash!  She sent me to see her husband, who happens to be an Infectious Disease doctor, that day.  He told me that it looks a lot like Shingles, but he’s never seen nor heard of shingles appearing on the radiation site like the rash I had.  He thought it may just be an allergic reaction to the radiation!

He sent me to a dermatologist for a skin biopsy. The dermatologist agreed.  She told me that although Shingles can last for several months, it’s the persistent nerve pain that lasts and not the actual rash.  This was the first time I had heard that!  So she took the skin biopsy and the results came back a week later indicating no sign of shingles, but there was a bacterial infection.

She gave me a topical steroid cream to help the rash and itch (finally something to help the itch!), another topical ointment for the bacterial infection and an oral antibiotic – Amoxicillin.  After just two days, the rash started to go away and the itching dissipated!  Hallelujah!

I truly believe that the radiation therapy was ‘the straw that broke the camel’s back’ and that had I not done the radiation, none of this shingles/staph infection/allergic reaction crap would be going on – I know I can’t do anything about it now, but I’m really pissed that I decided to go through with the radiation even though I really didn’t feel it was necessary!

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.