"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"

Well, not too often am I rendered silent.

You know it is hard for me to write when I am down, and these have been some difficult weeks.

I was so thankful to be able to contribute to the Breast Cancer Awareness efforts of Lancmoms.com. It got tough toward the end of the month, especially combined with the reconstructive procedure unexpectedly wedged into October. I have been struggling with splitting headaches--a leftover of the radiaiton treatment and I have been falling like a toddler learning to walk--it is crazy. I am gearing up for my first round of tattoos on December 2.

It knocked me back having to take time off from exercising again and dealing with pain and bandages, etc.. Exercise is such an integral part of how I manage my emotions, energy level and endorphins! Mentally and physically it has been a bummer.

But, if I was thinking of keeping to myself, last Tuesday changed all that. I have been fuming over the new guidelines to begin mammograms at 50 and to stop self breast exams. I am in absolute disbelief over this.

I will write more about this later this week, but I used my family connections tonight to make my voice heard. Michael had a meeting scheduled tonight with Francis Collins, decoder of the human genome and newly appointed Director of the National Institutes of Health (NIH). So, I was the greeting committee for Dr. Collins at the restaurant, as Michael met a colleague at Union Station in DC, to walk over to the restaurant.

I wanted just ten minutes with him.

I did give him a chance to sit down and then asked how many times he had been asked to comment about the changed guidelines for mammograms this week. He said about a thousand! I asked what his take was on it. (I am learning some self control!) He said he got wind of it two weeks ago and gave Health and Human Services the heads up that they better be prepared for a firestorm reaction. Wow, was he right.

I will leave you with the most important things that he said tonight and flesh the conversation out later. He said it is obviously not as black and white as the governemnt task force wants it to seem. (Face the Nation featured both sides of the debate this morning.) I said I thought it was ridiculous to add that women should not do self breast exams any longer! CRAZY! He agreed completely.

Michael and his colleague arrived, I left them to their meeting where the conversation continued. With all of the talk last week about "anecdotes don't make good science", Dr. Collins now has the face of a 45 year old mother of three, with no risk factors firmly in his mind. I am not an anecdote, and my survival matters, at least to the people in my little yellow house, but obviously to more people than that, because you are reading this!

He was most shocked at the fact of my "clean" mammogram in February 2008, progressed to cancer completely thorughout the left breast, including a 6 cm mass ten months later. His question was, "Was the cancer there in February 2008and it went undetected?" My question exactly. Dense breast tissue, nondigital mammogram. New calcifications spotted behind the left nipple, but no treatment recommended at this time. REALLY????????????

More later, I am fired up about this--surprise--and I have renewed energy to bring awareness to breast cancer.

Do your self-exam.

Schedule your mammogram.

JUST on the news--National Institutes of Health says to IGNORE the new guidelines!!!!!!!!!! YES!