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My BC Story (Sent to the Tryon NC bullentin)
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Ladies, get copies of everything from your doctors. Mammogram reports especially. If you can get an MRI instead of a mamogram, DO IT !!! If there's a Lump, DO SOMETHING, TAKE Charge.

October is Breast Cancer Awareness Month
 From Someone With Stage IV
 This month is for awareness of self exams and mammograms.  Thank God for it too. I was one of those people that maybe did a self breast exam once or twice a year. I wasn't concerned about getting breast cancer. It only happens to those "other" people. Last October I was living in Norfolk VA at the time and our local news channel reminded us everyday that it was Breast Cancer Awareness month and to do self exams and go for mammograms each year and so forth. So one morning I decided I'd check myself while in the shower. There it was, a lump big as a gumball. It shocked me at first. Then I thought, oh it's just one of those fibroids that my family doctor said I had last year.
 Let me take you back 15months prior to this lump. My doctor thought she felt fibroids and  sent me for a mammogram. It came back saying  something to the effect about some nodes (probably benign) in each breast and  recommended a follow up  mammogram the next year. (I found this out later when I finally got copies of all my records). When I went into her office to find out the results of my mammogram. She said cut back on caffeine and that I had some fibroids. She didn't even say I needed a yearly mammogram. My advice to you ladies, get a copy of the report from the mammogram reading.
 Now, fast forward 15 months after this. I've found the lump and I get on the internet. My lump didn't fit any characteristics of cancer lumps according to the internet.  Majority of the internet sites all repeated that lots of women find lumps that are usually benign. What a relief I was thinking. I didn't have any more sick time at work because I had to use it all up staying home with my always sick child. So I blew it off for a few weeks. I waited until November to go to the doctor because of other problems and then I told her, by the way, how about checking out this lump. Let me clarify that this was a new doctor.   She said I'd need a mammogram. I go get the mammogram within a week. They also did an ultrasound. The reports came back saying that it was a hematoma. Lump caused  from an injury. I told those people I had had no injury in that spot.  My doctor sent me back again. They just did the ultrasound and said hematoma again. This time my doctor sent me on to see a cancer surgeon.
 All this time for mammograms and ultrasounds took me all the way to Christmas. By this time I had educated myself on this matter. My lump had almost doubled in size. I had also discovered a lump on the side of my neck. This is common sign of super clavicle lymph node metastasis, cancer spreading.  Not a good sign at all. My surgeon told me that because I had gotten a new tattoo on that side of my body, it may be the cause of the lymph node in my neck and armpit swelling.  He said because of my age, 38, no one in my family with breast cancer and having breast fed two chances of having cancer was going to be like being struck by lightening.  I was a little angry with his manner and could feel the lightning striking my blood pressure. My reply, "I want a fine needle aspiration today." So he acted like this was unnecessary, maybe because of insurance issues, but he reluctantly did it. This procedure was completely painless. They numb you up first and then with a tiny needle they just get samples from within the lump. They were going to call me on Friday with results. Friday came and went, I knew my answer. I didn't want to call because I knew they weren't going to tell me on the phone. I had an appointment the following Tuesday anyway. These few days of waiting were the worst of my life.
 Can you believe that 15 months after my last mammogram, I was diagnosed with stage IV.  Most of you didn't even know there are stages. There is 0-IV.  My stage is terminal. Nobody talks about this stage.  I'm on an internet support group of stage IV ladies. We lose our friends all the time and the last one we lost was 42, she lived 2yrs after her diagnosis.  Some in our group were first diagnosed at early stages and then after a few months or years were restaged at IV. I believe our youngest member is 33. So how did the American Cancer Society come up with the age 40 for yearly mammograms? We want people to be aware of these things about breast cancer. We are trying to start a campaign for Pink & Black ribbons. The public makes Breast Cancer out to be all fuzzy, pink and cute. There is nothing cute about nausea and vomiting. I got some of the meanest stares at my bald head that I couldn't hide well enough with most hats.  Our real situation is mostly unknown by the public. Most people think that after chemotherapy is done, you're cured. Hello, there IS NO CURE. It makes me angry when I tell someone that I'm currently NED, which means there is no evidence of disease. They seem overjoyed that I'm cured and always say I knew you'd be OK because they know someone that has had cancer now for 20yrs. NED only means there are no detectable tumors in my body right now.  Cancer cells are still circulating in my body and I live with anxiety of it coming back when and where. You may not even  know that stage IV also means your cancer has spread to your lungs, liver, bones, skin or brain. This is what makes it Stage IV. In some cases, multiple places. This is when it becomes pretty painful for most.
Take charge over everything you want done from the doctors. Inform & educate yourself. If you find a lump, don't let the doctor blow you off. Get the Fine Needle Aspiration. IT IS THE ONLY SURE WAY to know if it's cancer. Not the mammogram, not the ultrasound.  I walked in the Relay for Life this year. They gave us a shirt and called us all survivors. I'm surviving at the moment. But a survivors is someone who goes through an ordeal and they made it through, the ordeal is over. My ordeal will only be over when I pass.  I want people to know what it's also like for someone that knows they're death is closer than they ever had imagined it to be. Family & friends will mourn for me one day. Some are mourning now. They will be loosing just me, I'm loosing ALL OF THEM. 
 I've just  finished up my Hospice Volunteer training. The training has helped me to see things differently about death and dying process. I highly recommend anyone that would like to volunteer, please do. I'm sure if you just wanted to go take the class they would not mind, there are no strings attached. It took me two weeks to get the nerve up to call them. Hospice sounded so scary to me. I called a local minister before my first hospice class and told him I'd like to attend his church, that I needed to get "closer to God".  It was so strange that in my first class at Hospice, they said that in the ancient days long ago, people stayed around dying people to "be closer to God". 
 I'm sorry if I've written something here that someone didn't want to know.  I just can't fluff this subject over with a BIG PINK BOW!!! Anger is one of the stages of the grieving process. I'm asking on behalf of many many women around the world to take some action in supporting breast cancer and other cancers in real ways. If you have some resources, use them, please.
Susan Andrews
Diagnosed 1/04


Dr. Susan Love's Breast Book
Susan M. Love  More Info

Breast Ultrasound
A. Thomas Stavros  More Info

Breast Cancer Husband : How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond
Marc Silver  More Info

Take Charge of Your Breast Cancer: A Guide to Getting the Best Possible Treatment
John S. Link  More Info

Breast Pathology: Diagnosis by Needle Core Biopsy
Paul Peter Rosen  More Info

Our Mom Has Cancer
Adrienne Ackermann  More Info

Pathology of The Breast
Fattaneh A. Tavassoli  More Info

Rosen's Breast Pathology
Paul Peter Rosen  More Info
If you want to take control of your end, this book is a resource

Final Exit (Third Edition) : The Practicalities of Self-Deliverance and Assisted Suicide for the Dying
Great Book especially if you plan to join Hospice

On Death and Dying
Elisabeth Kubler-Ross  More Info

Dying Well: Peace and Possibilities at the End of Life
Ira Byock  More Info

Ethical Wills: Putting Your Values on Paper
Barry K. Baines  More Info

Hello from Heaven : A New Field of Research-After-Death Communication Confirms That Life and LoveAre Eternal

Life After Life : The Investigation of a Phenomenon--Survival of Bodily Death
Raymond Moody  More Info
This Book gave me lots of encouragement

The Afterlife Experiments : Breakthrough Scientific Evidence of Life After Death
Gary E. Schwartz  More Info

Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition (Patient-Centered Guides)
Musa Mayer  More Info

After Breast Cancer (Patient-Centered Guides)
Musa Mayer  More Info

Holding Tight, Letting Go: Living with Metastatic Breast Cancer
Musa Mayer  More Info

Night Studio

Examining Myself: One Woman's Story of Breast Cancer Treatment and Recovery
Musa Mayer  More Info

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