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Diagnosed at 39 with Stage IV IDC breast cancer, grade 2, metastatic to the liver, and ER/PR+ and Her2-negative.

Tuesday, September 2, 2014

A wealth of Information

One of the things I like to do is collect information. A just-for-fun quiz on Facebook the other day said I was a Yenta. A total busybody who wants to know everyone's business. It's not quite untrue. I don't gossip or share other people's personal details, but I like being in the know, I like information. And when something happens, I hit Google and start searching for that information.

I found a wealth of things that were relevant to my breast cancer diagnosis. They either pertained to breast cancer directly, or they were part of the metastatic reality. I keep a public collection of these links available to other cancer patients, and some of them are linked in the righthand column of my blog, but I want to highlight a few of the information sites, along with some blogs, today.

The first is METAvivor which I've mentioned several times in the past. A non-profit group, 100% of their donations go to research specifically for metastatic breast cancer. It's run by people with or impacted by MBC, so they understand the importance of MBC awareness and advocacy. They are the creators of the Metastatic Breast Cancer ribbon and colors. seen to the left.

Next is the Metastatic Breast Cancer Network. Like METAvivor, they funnel donations toward metastatic breast cancer research. They're also credited for making October 13 the National Metastatic Breast Cancer Awareness Day. They are probably the most organized site for information on MBC on the web.

While not strictly metastatic in topic, I'd be remiss if I did not spotlight HIS Breast Cancer Awareness. With all the pinkwashing, men are so often overlooked for breast cancer. Men can and do get it, and because of the lack of understanding and awareness, it's usually stage III or IV by the time it's caught.

Another important source of information is Advanced Breast Cancer. They have a detailed FAQ as well as a comprehensive listing of various standard forms of treatment for MBC, listed by both trade and generic name, and the type of treatment.

By far one of the best sites of information and support for young women any stage of Breast Cancer, including the oft-ignored Stage IV, there's the Young Survival Coalition. With more and more women under the age of 40 getting a breast cancer diagnosis, there's a growing membership and their Navigator packets, which are free, are extremely helpful.

For research studies and clinical trials, there's the Army Of Women, which also welcomes men, and women who aren't diagnosed with breast cancer. You sign up and from time to time, if there's a study or clinical trial that you might qualify for, you get an email alerting you to this fact. It's entirely voluntary, just another source of information that you can choose to act on if you please.

If you find yourself in need of assistance with medication or treatments, visit the Patient Access Network Foundation. They cover far more than just Metastatic Breast Cancer, and they're an invaluable resource for many.

Another good resource that's free for use is the My Wonderful Life. It's a funeral planning website with a great deal of flexibility. And they also offer a program to allow you to pre-pay for your funeral. You can determine what you want to happen to your body on the event of your death, you can write your own obituary, you can write letters to loved ones that will be delivered after you pass, and give you the peace of mind knowing that you've worked out the details in advance so your loved ones don't have that additional stress of planning a funeral.

Wish Upon A Wedding isn't the only wish foundation for adults. There's also the Dream Foundation, which is the adult version of Make-A-Wish, and like WUW, it's not specific to breast cancer. On the specific-to-breast-cancer end, there's the Little Pink Houses of Hope, offering a week-long retreat for those with breast cancer and their families.

Before I move on to highlighting some blogs of other Metsters, there's another site that features a wide variety of links. Someone took the time to track down all the Breast Cancer Freebies and other support resources out there

Now onto the other blogs.

Telling Knots is a poignant and powerful blogger, with thoughts covering not just the metastatic breast cancer experience, but life in Israel in the middle of political and military conflicts.

Regrounding is a blog run by the president of METAvivor, Lori Marx-Rubiner, and covers many aspects of cancer, research, and advocacy. 

Uppity Cancer Patient is a blog from one woman with metastatic breast cancer, and discusses some of the realities and issues women with MBC face.

There are more blogs out there, but these are the ones I read, and the ones that deal with Metastatic Breast Cancer that I know about. Feel free to comment with links to more that fit the criteria of having a focus on MBC.

It's my hope that someone will read this entry and be introduced to a resource they hadn't previously known existed, and their life will be richer for the help and information it provides.

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