"How did you find out?"

This is the most frequently asked question, once someone learns you have breast cancer.  Or the question goes , "Did you find the lump or did your doctor?" Then assumptions are made and someone asks, "How many mammograms had you missed?"  The answer to those FAQ's are, in my case, respectively:  I knew something was wrong because I had chronic breast pain, which intensified, from late summer to late October.  I didn't find a lump, but noticed that my breast was gel-like in the painful area.  I had not missed any regularly scheduled mammograms, and had my most recent one in February 2008, 10 months prior to diagnosis.

Here's the thing.  Every woman you talk to, who has received a breast cancer diagnosis, will answer those questions differently.  There are a few lessons here.  You need to know your breasts.  You need to be persistent about getting any differences checked out.  When I went in for the appointment, my doctor did say that pain is not usually associated with cancer--of course, we both wanted to hope for the best and there were no other warning signs. Simply having a mammogram does not keep you safe.  You should receive a written copy of your mammogram report and compare the written text to the previous year's mammogram.  Notice for yourself any differences that are mentioned.  Be assertive if you have any doubts.

The fact that every woman's experience with breast cancer is so unique brings up another important aspect of being the parent, friend, sister or co-worker of the woman diagnosed with BC.  "My friend was diagnosed 10 years ago and she is doing GREAT!", or "I have a co-worker who is going through the EXACT SAME THING"--doubtful!  No single case of breast cancer or course of treatment is exactly the same.  Every BC patient's life situation and support network varies widely.  So, resist all temptation of telling her everything will be fine.  First of all, it may not be fine.  Secondly, even if the cancer is eliminated and she lives another 50 years, she will never be the same.  She may lose both breasts (and all of the functions that go with those breasts), or she may have multiple lumps/tumors removed and never know when another will appear, or she may lose her hair during chemotherapy or she may lose her job because she wasn't able to take an FMLA.  The possibilities for change are endless.

There are possibilities for change in the "GOOD" column too, but it is never the right thing for anyone, other than the cancer patient, to verbalize that. When your friend tells you about her diagnosis, bite through your tongue before you even think of telling her what good things might come of this. There is one, and only one thing to say.  

"I am sorry."  That's it.  Nothing more.  

Journal entries from February 2009-September 2009 @ caringbridge.com enter "kirstenmurray"

Today I took the train home from 30^th Street Station for, what felt like, the millionth time in the last nine months.  I had appointments at the Hospital of the University of Pennsylvania (HUP) that spanned the entire day.  As Michael and I left the house at 6:30 this morning we talked about how different it felt to be headed for the appointments today.  I only had a slight case of “nerves” today, as opposed to the all-out dread I have felt about the numerous other hospital visits.  But there is always that little voice of doubt.

So we revisit the day of the mammogram and sonogram, on Christmas Eve day 2008, no less.  But, before I left the Breast Center the day before Christmas, I met with the doctor who reviewed all of the images that were recorded.  We were going to schedule a biopsy after the first of the year.  Why weren’t we doing it that day?  Why more waiting?  All this “we” talk—there was no “we” about it.

So, our holiday had a bit of a cloud over it, but I managed to mostly push it out of my mind—except for the fact that my left breast was constantly sore and was now one full cup size larger than the right breast, with some discharge.

I had to wait until January 6 for the biopsy because there was no room in the schedule prior to that.  My 19-year-old son, home on break, was the designated driver that day.  The biopsy didn’t go swimmingly.  Apparently, my breasts are very dense, which turns out to be an important factor. You don’t want the details, but suffice to say, it was much more painful and scary than I anticipated.  You lie flat on a table, with your breast dropped down through a hole in the table, the table is then raised to a height of about five feet and everyone works on you from below—I felt like an old jalopy in for a tune-up.  The darn needle got stuck—not a very thin one at that.  So, I left with fluids oozing, a hematoma forming and my breast packed in ice.  On my way out, I set up my consultation, to which I was told to bring my husband, friend or other family member.

The most vivid afternoon, for me, was the “consultation” with a doctor of radiology, four days following my biopsy.  We pulled up to the Breast Center and my husband said, “Whatever happens today, everything is going to be okay.”  I told him it would be okay, because there was no way this was cancer.  We gave each other a nervous kiss and went inside.

Sitting on the absolute edge of the brand new couch in this clutter-free, faked-up living room, our only conversation was the joking about Michael’s newly broken hand—just casted that morning—no lie!  A doctor entered the room—a doctor whom I had never met before, followed by a nurse carrying the equivalent to a semester’s worth of books in her arms.  Big clue—went right by me.  They joined in on the kidding about the broken hand for a few minutes and then silence.

The doctor cut to the chase and after telling us that I did have breast cancer, doled out lots of information that fell on my deaf ears (this must be why they say to bring someone else--to hear what is said while you are reeling).  I even missed the part about the cancer being throughout the entire breast, and that meant a mastectomy.  I could not breathe, all I wanted to do was race out of that artificially serene room.

I had my wits about me enough to ask how I could have a “clean” mammogram 10 months prior and now I had cancer.  He said two things that every woman should know.  The first thing is that the mammogram I had in February 2008 was NOT A DIGITAL mammogram and that I have very dense breast tissue, so perhaps it didn’t show up due to those factors.  Too late for me, but not for you or someone you love.

What I want to say here is that younger women generally have denser breast tissue. “Breast density refers to the proportion of fat and tissue in the breast. If someone has low density, it means there is more fat in one’s breast compared to tissue. When a mammogram shows dense tissue, it’s difficult to distinguish between cancer and dense tissue because both show up white. Dense breast tissue is one of the leading risk factors for breast cancer.”  New Haven (CT) Register, June 28, 2009 (go to http://www.nhregister.com/articles/2009/06/28/life/doc4a45884495b9d987722898.txt for complete article, along with areyoudense.org)  Connecticut governor and breast cancer survivor, Jodi Rell, signed into law that mammography reports are required to include information about breast density.   This should be true nationally, not just in Connecticut.

I walked out of that room and building a different woman.  I was now a member in that club that no one wants to join.  I couldn’t feel the bitter cold wind, but every sound was magnified a million times.  I could hear the frozen grass blades crunch under my boots.  I entered a period of ultra-heightened perception, a state that I remain in.

So on the way home from HUP today, I was completely soothed by the gentle motion of that very familiar and comforting  train.  I collapsed in utter relief, hearing today that I do not have any evidence of cancer left and my irradiated skin is so healthy that I can now schedule the areola construction.  This moves me to another milestone in this journey. Words cannot begin to express what this means to me and I am ready for a peaceful sleep.

How we told our kids, our extended families and our friends for next time.