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 facebook.com/butdoctorihatepink.  I post any news I may have there.





11 comments:

  1. I read an article recently that indicated that cancer cells can leave the breast and metastasize before a tumor even appears in the breast. So early detection is not really any help at all. If its going to escape its going to escape. If you're really lucky then its detected before anything has escaped and you get your boob cut off and everything is awesome. But they also think that many breast cancers will never metastasize and that they are doing too much surgery to prevent it. So either way we lose lose lose.

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    1. Yes, I've read the same rhing. We still have so much to learn about this process, it's ignorance to think there is enough of an answer to point fingers.

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  2. Parts of this resonate with me. I appear to be post cancer now, I was diagnosed with stage 2 breast cancer in 2012. The medical profession were totally non committal as to how it happened, reading around the internet people are less reserved!
    The 'eating clean' lot were the ones that really angered me. Many people claimed that eating clean would prevent cancer AND cure cancer. Of course there is no evidence to support these claims, and reading those kind of claims just made me really annoyed.
    I am fat, I have no family history, I am vegetarian, I exercise regularly. Only the first gave me a higher likelihood and I still really have no idea. It is so easy to blame yourself fro every illness wen you are fat, but I have chosen not to beat myself up about it.

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    1. I ate clean, and was thin. I should be healthy then, right? Guess what....not. Your weight did not cause cancer and seems like you were healthy otherwise, better than most. People who like to point a finger and feel superior should take two steps back and look in the mirror. I guarantee that there is one thing they do that, should they get cancer, somebody could use to blame them.

      Self-righteous people are the worst. And they also have a harder fall. Good choice on not beating yourself up because I think it would have happened either way. *hugs*

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  3. I got Stage 3 breast cancer at age 31 (I'm 33 now). Every time I tell someone I've had cancer, 9 times out of 10 they'll say, "Have you been genetically tested? Do you have the BRCA gene??" Yes, I've been tested, and NO I don't have the BRCA gene, in fact I have zero genetic mutations. I've come to think that a lot of this is more random than we are taught to believe, and has more intricate beginnings than we are aware of. I also think people like to point a finger at something to make themselves feel safer: "Oh you got breast cancer young because you have the gene" or "Oh you went metastatic because you skipped a mammogram/didn't eat enough vegetables/wore purple on a Tuesday" (you get the idea). Nobody wants to face the fact that it can happen to them, so it feels safer to be able to point to a reason why someone else got it and if they just avoid that thing, it won't happen to them. Just not true.

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    1. Very well said, and I believe you are exactly right.

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  4. Ann (and letter writer), very well said, but with one caveat:My cancer was extremely posterior, up against the chest wall, and detectable only by mammogram; it was not palpable at all from the outside, even my surgeon couldn't feel it. Granted, the fact that it was detected may not save my life in the end; but the recurrence statistics are better the smaller the tumor is at the time of detection and the fewer lymph nodes affected– obviously, these are only statistics and not prognostic for any individual, but we'd all like to get as many statistical odds on our side as we can, even if, as my oncologist always says, "Someone is going to be that one person." May we all continue to be NED; and may those who are not continue to live and thrive– and may a cure be found soon!

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    1. Hi
      I am the person in the letter. I am so happy that your cancer was detected by the mammogram. I so hope that you will stay cancer free!I do not negate the pain and fear that people go through at any stage of cancer and those who are cancer free deserve every ounce of the joy you experience in that!
      I just kept hearing people say that breast cancer is completely curable if you do the "right" things. Its not.I just want the "awareness" world to keep acknowledging that people are dying every day who were fully aware and that the fund raising world puts as much emphasis on finding a cure as they do the awareness and detection. In the meantime my heart goes out to all of you!

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    2. Oh by the way I haven't used my name on public sites because I am currently shielding an elderly mother and some others from the extent of my condition but I want to share my experience because the stories of others have helped me so much. Thank you Ann.

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  5. Thanks for this post. I was diagnosed with breast cancer at age 40. I'm now 42 and 'cancer-free,' supposedly. Unless I'm not. Time will tell. Even though I'm one of those people who supposedly 'beat it' and 'kicked cancer's ass,' phrases like that have always irritated me. I know people mean well when they say them, but honestly, but it makes it sound as if the individual has complete control over the outcome, as if those who come out 'winners' somehow fought harder? Honestly, I just did the recommended treatments and that's it. It's just luck, or some combination of genetics, or something. Something most definitely out of our control.

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  6. This is spot on. My BFF found her first lump herself. Had lumpectomy and radiation, and celebrated 5 years cancer free. Routine mammogram then found that the beast was back, and had gone to bone and liver. Chemo killed her more than it helped. Chemo stopped and she died two weeks later. We didn't expect it to be that fast. My anger comes from the push for "early detection" and "breast cancer awareness". We are all painfully aware! Unfortunately, there is no damned guarantee that treatment will work, or that the beast won't come back. That pisses me off, since I realized how little of each dollar that goes to Koman really goes to research.

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