Saturday, March 11, 2017

It's not our fault!

One of the privileges I've experienced in writing this blog is hearing from others who have suffered through cancer - either themselves or through a relative. I hear from all stages and all types, people with all sorts of suffering from this disease.

One woman's letter particularly struck me, because it is something many of us feel at one point or another. With her permission, and some identifying information removed, I am sharing it:

"I came across your blog and found the most helpful post regarding early detection and awareness and just wanted to reach out and say thank you.  I have stage 4 metastatic breast cancer in lungs, bones, and liver.  I was diagnosed in September of 2014.  I have been battling horrific guilt in addition to the trauma of the diagnosis because I had been a busy full time working mom with kids who let my health appts. lapse. 

I had no symptoms whatsoever.  I had always had gynecological check ups through my mid forties and had no issues.  In my late forties my favorite doctor died and I didn't replace him.  I became complacent and let my health care lapse. I thought I was safe to start again in my fifties.  Not one biological woman relative had breast cancer in my family except a cousin whose mother not related to me had it. However my father had died of cancer in his early 70s, and so there were parts of me that were afraid of the screenings and delving too far into it.  But I was not worried about breast cancer.  So I just put my head in the sand, lived my busy life, and ignored it. 

In February of 2014 I had severe pain in my rib cage.  I could barely breath. I thought it was a heart attack.  My son took me to the ER.  My heart was fine.  They performed blood tests and ultra sounds of all my major organs.  Everything came out clean.  They thought is was an inflammation in the chest wall.  I did anti inflammatory meds and it disappeared in a few days.  So I thought I had a clean bill of health. 

 In August I was jogging, losing weight, eating healthy. But I had a chronic annoying cough. Then I got what appeared to be pneumonia.  Family doctor put me on antibiotics. (while at the doctor, ironically I made an appt. for my first mammogram). In the meantime, I kept getting worse regardless of antibiotics.  Memorial day weekend after the doctor reviewed a chest xray, I was sent to the ER.  My right lung was almost 2/3 filled with fluid.  I had low oxygen.  I was at risk for heart failure.  In the ER after blood tests, the word cancer was uttered.  The nightmare began.  I had stage 4 metastatic breast cancer in lungs and bones. It has since progressed to the liver. When I went to the breast center for a biopsy to determine the type for planning treatment, I was treated like a pariah because I had no screenings. 

I was consumed with guilt and rage at myself in addition to the sheer sorrow and shock that just levels you to the core.   I believed at that point that I would have been cured if I had not been so stupid.  I thought I let my family down, and I deserved to die.  I didn't deserve the care and the treatments and the help that those women who diligently kept up their appts. deserved. 

Then I began to read about the fact that no matter how much "preventative" measures women took, and no matter what diets and chemos and follow ups they had, it still spread in those who did everything "right".  I learned for the first time that some cancers never spread and we do not know why others do. Some women who do everything "wrong" as well as never go to the doctor will never get cancer.   It is a complex cellular biology that is not under the control of the victim and is not the fault of the victim.  And almost no one understands that we are not looking at the spread and cure as profoundly as we are looking at "catching it early".  People think it's a cold that if you catch it early and take the right medicine you can prevent it worsening.  People have no idea that it just does not work like that. 

 I am also somewhat disappointed with the women who brag about their "beating it" and will say that early detection saved their life, without acknowledging the women who are still dying. That mindset would seem to blame those who have late stage disease as having missed something despite doing all they could.  It definitely shames and blames those of us who didn't.

So thank you for speaking up and shedding light on this subject and helping those of us who are suffering to be able to let go of at least the guilt portion of everything else we have to deal with.  I am lucky for now.  I am still working and feeling relatively normal at this point in time on Afinitor/Aromasin.  I was on 6 months of weekly intravenous chemo last year, but now I have my hair back and this is a refreshing break that I can only hope will continue to work for awhile.... PLEASE.  We can only hope. I so hope you are "well" at this point in your life. 
Thank you for sharing your story. Stage 4 is a lonely place without those of you who take the time to reach out."

She rightly came to the conclusion that nothing that happened to her was her fault,  but many women do not figure that out and feel tremendous guilt.  If that is you, let me tell you here and now and in no unertain terms - getting cancer, at any stage, is NOT YOUR FAULT.

There is so much misinformation about breast cancer out there, and so much of it lays the guilt for this disease squarely on the sufferer.  Many people will blame you, unintentionally but surely, as part of their own belief system that if they do everything "right" it won't happen to them.  They are afraid, so they want to know they are not like you and they can't get it.  They ask you questions, like "didn't you get screenings?  Do you smoke?  Do you drink?"  They're trying to figure out what you did wrong and they are doing right so they can put themselves in the "no cancer" box.  It's just fear, but it makes you feel guilty.  Don't let it.

Being consumed with guilt is normal when you face this diagnosis, but let me reassure you - as one who has met thousands of cancer patients - nothing you did caused your breast cancer.  You didn't wear bras too tightly, you didn't eat too many cupcakes, not exercising didn't cause this disease. Thin, healthy, clean eaters get breast cancer and people who are overweight get it.  Men get it.  All you need is some breast tissue. As for screenings, they are even becoming controversial.  Many scientists and researchers now believe that mammograms aren't necessary in a woman with no history until age 50, and interestingly, many studies show that woman will find their own cancers at about the same time as a mammogram does anyway.  Once cancer is found, whether at Stage 1 or 3c, it can spread and become Stage 4, a year later or ten years later, and nobody has any clue why.  And, in 10 to 15% of people, like the letter writer, it is found at Stage 4 (called de novo).

A mammogram is a screening tool, it's not a magic cure.

We human beings very much dislike the idea of things happening without a reason. Religious people believe in God's will.  The rest of us put it on ourselves.  We forget all the obese people who never got cancer, all the alcoholics who died in their 80s without a cancer cell sneaking in - the drug addicts or homeless who are cancer-free.  There are people who don't see doctors for decades, and who have clean bills of health when they do go.  Then there is the one who skips an appointment or two and gets the worst news possible. There are babies and children who have had no time to do anything "wrong" who get cancer.  Life is full of mysteries and tragedies.  It is truly biological chaos and none of it is our fault.

One day, soon I believe, they will unlock the mystery of metastatic cancer.  Researchers will come to understand which cancers take up residence in other parts of the body and which ones don't.  And when they do, I believe they will discover that it is not anybody's fault and lifestyle is not involved. It will be a complicated interaction of proteins and biomarkers - it just happens.

The world is full of the inexplicable.   Don't feel guilty when one of those inexplicable things happens to you.

Thank you Tracy, Jennifer, Patsy for your generous donations.   I am honored that something I've written has helped you enough to want to contribute.

Also, for those who haven't found me yet, I am on Instagram where I post photos, mainly of my dogs, so follow me at butdoctorihatepin.  You can also find me on SnapChat, add butdoctorihatepink.  My tendency is to play with all the filters at once and not really post anything interesting but man, I love those filters!  Except the dog one, that needs to go now, don't you all think?  Of course, find me on facebook at  I post any news I may have there.