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Archive for the ‘Breast cancer’ Category

Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery

Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery 
Finally! A book about TNBC written by a woman who’s been through it—Patricia Prijatel, founder and editor of the blog Positives About Negative.
  • One of the first books exclusively for women facing hormone-negative breast cancer
  • Author Patricia Prijatel tells the story of her own diagnosis and treatment and includes her full pathology report with annotations to help readers understand their own
  • Describes the science behind the disease and its treatment in clear, accessible prose
  • Endorsed by Medical Advisory Board: breast surgeon Carl Scott-Conner, MD, PHD; pathologist Renee Ellerbroek, MD; clinical trial coordinator Madlyn Ferraro, RN; and health and fitness specialist Rochelle Kirwan, RD

More about the book from publisher Oxford University Press.

Be sure to follow Patricia’s blog for the latest news and resources on triple-negative breast cancer, including updates from the San Antonio Breast Cancer Symposium.

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It has been a long time since I’ve posted anything in the breast cancer journal. My journaling has taken another path – it is not online, and it is not about being a breast cancer survivor. My mother died in August and a lot of what I have been writing about privately describes my journey through grief.

On August 11, 2010, I went to Denver for my check-up with the doctor at the imaging center and my oncologist. The doctor at the imaging center looks at the mammogram and ultrasound results during my visit, so I knew by the time I was on my way home that I was still NED (no evidence of disease). My oncologist wanted me to have another mammogram and a visit with her in six months; after that, my mammogram schedule would be once a year. She reminded me that it was almost five years since my diagnosis, and at the five-year milestone, my risk of recurrence would go down so significantly that it would be about the same as for all other women in my age category.

On my way home from the hospital, I called my family to let my mother, who was out of town for a medical procedure, know that my check-up was good, and Mom was very happy about that. The following day, unexpectedly, my mother died during the procedure.

Now it’s January, and in one week, it will be five months since my mother died, which seems impossible. And a month after that, it will be time for my six-month checkup, the last one before my anniversary, and a month later, it will be March, five years from my diagnosis, and the milestone that has been my goal: stay cancer free for five years.

In the meantime, I am not feeling well – I am so tired, I am not sleeping well, I have headaches, I was not eating right. For a while, I didn’t have much of an appetite. When I did, rather than going back to my  low-fat diet, I began eating comfort food. This week, I brought home bags of fresh green vegetables and am determined to start eating right again. I fluctuate between feeling relief of getting to that five-year mark and the nagging stress of not feeling well and needing one more round of tests before the anniversary to make sure I am still okay.

Things that go through my head, that I try to dismiss:  Why am I so tired – as tired as I was when I had cancer? Because my cancer is back, or because I am grieving and not sleeping well?  What about my headaches? When reading, why do I see “red bed and butter” instead of “rye bread and butter”? Why am I having trouble with my speech? Because I’m getting aphasia, or because I didn’t rest well? Why am I so forgetful? Are these real and lasting memory problems, or is it just stress?

Those are things I wouldn’t admit to my friends, but somehow am okay with posting on the internet where other survivors can read them, because I know you understand what I’m talking about.

Underneath all of this, I somehow feel settled about things. Although I hate it when people say my mother “is in a better place,” I believe that my mother is okay and that she will always be present to me in ways that are more palpable than memory, because she is my mother, and she will not abandon me (a wonderful thing a friend said to me). I believe that I am probably still cancer free and will get through my checkup okay and that the lumps under my arm are from something else and will go away. And if they aren’t gone in two weeks, I will make an appointment to have them checked, as I do with other things that don’t go away. I believe that grief is a non-linear, inescapable process, part of being a human being, and I vow to try to learn from my children, who have lost their fathers, how to live with it with dignity.

And I believe that even if I don’t remain cancer-free, we are all playing our part in the unrelenting and majestic evolution of the cosmos, and I believe in what some people call the communion of saints or souls, and some people call the cosmic consciousness, and, as my sister says, “I believe in the seen and the unseen.” And I hope to learn courage from others who have gone before me.

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Many visitors to this site have arrived here from Google searches asking whether Elizabeth Edwards had triple-negative breast cancer.  I’m copying information here from the Positives About Negative blog.
“Several readers have come to this site by Googling questions on whether Elizabeth Edwards has triple-negative breast cancer. She does not. Hers is responsive to both estrogen and progesterone. In its archives, WebMD has an interview in which Edwards talked about her cancer, its diagnosis, and her treatment.”

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Elizabeth Edwards, RIP

“I have been sustained throughout my life by three saving graces — my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined…..Live daily with hope and the daily effort to have a positive impact in the world.” -Elizabeth Edwards

Elizabeth Edwards Dies of Cancer http://www.webmd.com/breast-cancer/news/20101207/elizabeth-edwards-dies-of-cancer

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I don’t know why it took me so long to discover the Positives About Negative blog by Patricia Prijatel, who writes as a survivor of triple negative breast cancer. Her blog is full of information about this type of cancer.

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http://www.nature.com/news/2010/100330/full/news.2010.160.html

The latest ruling, delivered on 29 March, is the result of a lawsuit brought in May 2009 against Myriad Genetics, based in Salt Lake City, Utah, and the University of Utah Research Foundation, which hold the patents on the BRCA1 and BRCA2 genes. Mutations on BRCA1 and BRCA2 are responsible for most hereditary breast and ovarian cancers. A woman who tests positive on Myriad’s BRCA test has on average an 82% risk of developing breast cancer in her lifetime and a 44% risk of developing ovarian cancer, according to the company.

The patents, which Myriad has actively enforced, grant the company the exclusive right to perform diagnostic tests on the two genes. The company charges over $3,000 for its BRACAnalysis test. In 2009, Myriad’s revenues from molecular diagnostics grew by 47% to $326.5 million. BRACAnalysis accounts for the lion’s share of those revenues.

The plaintiffs in the case included individual physicians and patients as well as the Association for Molecular Pathology and the American College of Medical Genetics; they were represented by the American Civil Liberties Union (ACLU) and the New York–based Public Patent Foundation. The American Society of Human Genetics and the American Medical Association also filed briefs in support of the plaintiffs’ challenge to the patents.

The plaintiffs called the patents illegal on the basis that they restrict both scientific research and patients’ access to medical care and that patents on human genes violate patent law because genes are “products of nature”.

Complete article http://www.nature.com/news/2010/100330/full/news.2010.160.html

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I found more sketches and notes I made just before, during and after I had radiation treatment and have posted them in the section The Parts I Left Out.

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