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Monday, 10 March 2014

My story in a little (okay a lot) more detail

On April 18, 2013 I was diagnosed with stage III breast cancer, more specifically invasive ductual carcinoma (ER+, PR+, HER2-).  I started to have mammograms in 2010 when I was 42 years old.  In 2010, 2011, and 2012 I received the "all is good come back in a year" letter.  I never knew mammograms could miss cancers.  There were no posters or signs telling me this in the waiting room, only posters explaining how mammograms can pick up small lumps that one might not be able to feel.  That is tumours the size of a grapefruit or orange seed.  I also knew mammograms could detect lumps that turned out to be benign, that is a" false positive", but I didn't know they missed cancers in such large numbers in premenopausal women (1 in 4 for women between the ages of 40-49).  Oh, how I wish I could have been a "false positive" rather than a repeated FALSE NEGATIVE!!!!

In January 2013 my right breast was a bit itchy.  I "googled" it and attributed to hormonal changes as the itchiness went away. In February, it came back and went away again but I noticed my right breast seemed a bit swollen.   Again, it seemed hormonal.  I booked a mammogram for April 2, before my knee surgery and then spent spring break in Victoria with my parents.  When the symptoms came back in March, I worried something was wrong.  I came home from the hospital after my knee surgery on April 4 to find a message calling me back for more mammograms.  I hobbled in on crutches, had them and was then called back for a core needle biopsy of the breast and fine needle aspiration of the lymph nodes.   On April 18, 2013, I got the news nobody ever wants to hear!  "I am sorry, but you have cancer."

Longing to become a mother and to have a little one to cherish, I started the adoption process in May 2011.  I visited my future child's country in May 2012 and thought I had found a young girl but less than a month after I was home I learned she was no longer available.  I continued to wait.  At the end of February 2013 I was matched with a little girl who was 3 1/2 years old.  The perfect age in my eyes for so many reasons.  I was meant to go and meet her in May when my knee was strong enough to travel.  Unfortunately, after my diagnosis I had to call the agency and give her up.  This was the hardest thing I have ever had to do.  A couple of people have asked me why the agency couldn't  hold her for me, I am afraid international adoption doesn't work that way!  It is another long, emotionally fraught, challenging and complicated journey filled with many ups and downs.  Although increasingly difficult due to increased regulations and one organization's beliefs, it usually results in a happy ending. 

Back to the breast cancer, within a month of diagnosis, I started dose-dense AC/Taxol chemo.  Four rounds of each, two weeks apart.  It was brutal but I made it!  I had many side effects and can post about some of the more unusual ones later.  I would Google my problem and almost always get a link to the MacMillan Cancer Support website or the the Breast Cancer Forum discussion boards.  (See links to these on the right handside.)  A week after the first chemo I decided to have my hair shaved off rather than watch it fall out.  I had been told this was easier than watching it fall out in clumps. Let me tell you this was so easy compared to the phone call I then had to make up giving up my little girl.  I knew my hair would eventually grow back but my little girl wouldn't be coming home!  Going into summer, I decided to go the hat route and found a great website called, Hats, Scarves and More.  I have a big head, in circumference that is, and this website has some hats for those of us with this problem. 

Fast forward through the chemo (May-August), to 28 days of mega-dose radiation (Sept/Oct) from all angles and sides (breast, lymph nodes, collarbone, chest wall), to my surgery (late Nov.), a right modified radical mastectomy with axillary dissection.  There was no possibility of reconstruction due to the size of the tumour.   My dear surgeon said she didn't want to spare anything (leave enough skin or tissue for expanders) as she wanted to give me the best chance of living to a ripe old age.  I am so grateful to her for her skill and expertise.  I have to share here that for me losing a breast is nothing compared to the loss of being a mummy!  I have to wait a while to see what happens (ie: recurrence due to being Stage III)  before I am able to return to the adoption process.

I  have "soldered" (my surgeon's words about my progress during chemo) through all my treatments and only in January arrived at a point where at the end of active treatment I am left wondering what happened!  Life at the end of cancer treatment is HARD!   I find myself feeling vulnerable, anxious about recurrence, fragile and not to mention easily fatigued.  All of these I am reassured are normal at this point in the battle, or what is called "end of active treatment".  A CT scan in January identified an enlarged lymph node under my left arm and spots in my right lung.  A few days later it was confirmed that the spots in the lung are scaring from the radiation.  They are in the correct place to be that.  On Wednesday, March 5, I learnt that the biopsy was negative and there is NO cancer.  I can't tell you how good it feels to be a false positive.  Yes, there were a few stressful weeks, but I'd go through it again to hear the words, "It was clear.  They couldn't find any cancer." 

From the beginning of my battle I wanted to do something to share what I wished I had known, that is mammograms miss tumours and especially so in premenopausal women.  I just haven't had the strength, other than through emails to friends, to go about doing that.  According to a book I was given to read, and as I have mentioned in an earlier post, 25% of tumours are missed by mammograms in women between the ages of 40-49!  Through my experience, I also learned that mammograms have difficulty identifying tumours in women with dense breasts.  Never once was I told my breasts were dense.  If I had, I would have done something to protect myself.  I would even have paid for private imaging if necessary.  I am hurt and upset that I was never "red flagged" and sent to a specialist so that my cancer might have been caught at an earlier stage.  I have worked hard all my career (23 years) to "red flag" children in my classroom that I have concerns about.  Working hard with school-based team, we do our best to get them help, but that is another story!  If I'd known what I know now, I would have asked the mammogram technician if my breasts were dense!

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