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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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Living Beyond Breast Cancer posted on Facebook a link to Laura Tasheiko’s breast cancer journal. I love the paintings and the way she processed her journey with them. I plan to spend more time there.

I also loved this post, “The tyranny of positive thinking.”

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I am having more pain in my left shoulder, numbness down my arm and tingling and numbness in my left hand and fingers.  It isn’t as painful as it is annoying. The more painful my shoulder is, the more numbness I have in my hand.  In the area where I had radiation treatment, I have a lack of sensation in my skin, but pain underneath in my muscles, especially under my arm and around my shoulder-blade.  I sometimes have a sharp pain when I reach for something over my head. Other times there is no pain, just a stretching sensation in my skin.

I thought it might be temporary, but it is happening more often and lasting longer. 

I’m wondering whether this is a typical side effect of radiation therapy or if it’s a sign that I’m developing lymphedema.  I’m also wondering if I should have been doing some range of motion or other exercises to prevent this, and whether exercise will help prevent it from getting worse or even make it better. No one has given me any information about this. But, no one told me that self-massage would prevent the fluid buildup around the surgery site that makes it difficult to get a good ultrasound reading until after it was already a problem. I don’t know why, since it is simple and works in a few weeks.

I will talk to my doctors about this when I see them in January. In the meantime, I found this November 2009 article online:

Many Breast Cancer Surgery Survivors Report Lingering Pain

Women at the greatest risk for chronic pain were ages 18 to 39 and had undergone breast-conserving surgery, or lumpectomy, in which doctors remove only the tumor and some surrounding tissue. Other risk factors for persistent pain included radiation therapy, which is directed at the breast area to destroy any remaining cancer cells after surgery.  There are several reasons that breast cancer survivors experience pain such as nerve damage or injury from the surgery or radiation, but in the future, nerve-sparing surgery may help take the sting out of this persistent pain, according to study authors. . .

Another doctor adds. . .

“Pain decreases quality of life and should be a cause to reach back out to the surgeon or radiologist and ask for a referral to a physical therapist for intervention,” says Kneece, who is also the author of “Your Breast Cancer Treatment Handbook.” “Most pain can be addressed and reduced or eliminated.”

And this – which I suspected, and so have been doing some stretching exercises on my own:

Physical therapists can help women develop a plan to reduce or eliminate pain. In general, range-of-motion exercises after surgery can help reduce the risk of pain, according to Kneece. “If not performed, there will be a fibrous tissue which forms in the area restricting motion and causing pain when the arm is stretched,” she says.

I want to find out if this is early lymphedema, or if it may be the results of fibrous tissue. Either way, it is getting worse, but it sounds like it can be addressed:

“If one notices increasing swelling accumulating in the affected limbs or trunk, it is likely an early warning sign of lymphedema and she should be evaluated by a fully certified lymphatic drainage therapist,” says occupational therapist Cathy Kleinman-Barnett, a lymphedema specialist at Northwest Medical Center, in Margate, Florida.

“The additional fluid buildup can cause abnormal sensations such as tingling, aching, [and] heaviness, and should diminish or stop with range-of-motion exercises, stretching, and massage to stimulate lymphatic flow,” she says. “There is help available, and women should not have to live in pain.”

This article was in CNN Health

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Resources for Women with Triple-Negative Breast Cancer from Living Beyond Breast Cancer  

Order Guide to Understanding Triple-Negative Breast Cancer, created by LBBC in partnership with the Triple Negative Breast Cancer Foundation (download brochure, order brochure).

“This publication offers helpful information, whether you have just been diagnosed or you are moving forward after treatment. Learn common terms your doctor may use and what might increase your risk for developing this type of breast cancer. Get the facts on treatments, and find out how to deal with myths about this diagnosis. If you have finished treatment, sort through post-treatment concerns, including follow-up testing and managing the fear of recurrence. Read the experiences of real women affected by triple-negative breast cancer and tips from healthcare professionals.”

“Read our publication on Triple-Negative Breast Cancer: Treatment Update and Tools for Healthy Living with Lyndsay N. Harris , MD, and Suzanne Dixon, MPH, MS, RD (transcript, audio recording). Hear the latest news on triple-negative breast cancer from medical and nutrition experts. Dr. Harris gives an overview of the biology of triple-negative breast cancer and explains how it differs from other types of breast cancer, who is at high risk and targeted treatments in the pipeline. Ms. Dixon explains how a low-fat diet and vitamin D may affect your risk of recurrence.”

“Listen to an audio recording on Triple-Negative Breast Cancer: Understanding Treatment Options and Post-Treatment Concerns (audio recording) with Ramona F. Swaby, MD. Learn which groups are affected more often by triple-negative breast cancer and why. Dr. Swaby discusses available treatment options including a review of the latest research in targeted and biological therapies, how to manage follow-up care and the importance of participating in clinical trials to further research development.”

Living Beyond Breast Cancer

Triple Negative Breast Cancer Foundation

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More about Carolyn Scott Kortge, author of  The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection

Recent post – Spirited Walking and Pheasants

 

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Here’s a post from Awful Library Books that’s worth reprinting here. Beware of outdated information on cancer in books that have been on the shelf too long in your small town library – which might be the first place lots of us go to find information when we get a diagnosis.  Check the publication date and remember — there is a lot of new information on the causes, types, and treatment for cancer.

Helpful Cancer info!
November 20, 2009 · 12 Comments

You can fight cancer and win
Brody
1978

Medical topics that are obviously dated REALLY chap my MLIS, folks! I know Jane Brody is a respected health writer, but she would not depend on information from the 70’s. I am sure those of you old enough to remember the 60’s and 70’s can remember that a cancer diagnosis almost equaled a death sentence. This kind of material needs to be weeded pronto! I would like to suggest that everyone in public library drop ‘cancer’ into your catalog search and see how many “old” things come up! Holly and I find WAY too many floating around out there in library land to be very helpful.

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Breast Cancer Trials

Breast Cancer Trials
Breast Cancer Trials is a website where people with breast cancer can sign up to search for breast cancer treatment trials by entering information about their medical condition and treatment.

BreastCancerTrials.org was developed specifically for women and men interested in breast cancer trials. On the website you can learn about the benefits of taking part in a clinical trial and what questions to ask before you do; use the trial matching service to find trials that might be right for you; contact research sites through a messaging service; browse trials. You can also sign up for an email service to alert you when trials that match your information become available.

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