Monday, October 24, 2011

Susan Niebur - Atrophysicist, Survivor, and Mom

Guest blog from Susan Niebur. Susan is a four time cancer survivor, astrophysicist, and mom of two happy little 4 and 6 year old boys. Susan is now fighting metastatic breast cancer in her spine, neck, ribs, and hips, with chemo and pain meds, still looking for that "new normal."


I am alive today because of research funded by organizations like the American Cancer Society and the federal government.

I was diagnosed with inflammatory breast cancer in June 2007. I had a year of chemotherapy, surgery, and radiation, all developed by really smart researchers funded through the efforts of men and women like you. The treatments worked, and I have *lived* for 4.5 years while my babies grew up and went to school. I am grateful, so grateful, for that.

But the cancer came back. Now, like 150,000 other women and men in America, I am living with metastatic disease. Metastatic breast cancer, as some of you know all too well, is when the cancer moves away from the breast and recurs in the lungs, the liver, and other vital organs.

Now, I’m going to let you in on a dirty little secret: No one dies of breast cancer confined to their breast. Some of us die from treatment, but most of us die when the cancer has moved to our vital organs and shut them down. We die of metastatic disease. There are treatments we can try, but there is no cure.

When I was diagnosed with metastatic breast cancer this year, I was reassured that there were 20 chemotherapy drugs that we could try. We tried one. It worked, for a while. Then it stopped working. Three of the 20 drugs are in short supply right now, so I can’t have those. There are sixteen drugs left.

I will be on chemotherapy once a week, for the rest of my life. That is, until we’re out of drugs that work. That is why I believe we need more research. All of us with metastatic disease — and the 30% of women whose breast cancer will spread and become metastatic — will die without more research.

Oh, and — Research on metastatic disease is woefully underfunded, at just 3% of all breast cancer research.

Fight with me. As I fight for my life each day at radiation or each week at chemo, join me and the American Cancer Society as we fight for more birthdays.

Wednesday, October 5, 2011

Online And On-Site Support From Cancer Networks

Online And On-Site Support From Cancer Networks

Support networks are important for anyone, but they are vitally important for those affected by cancer: survivors, family, and friends. Research links cancer support groups to improved emotional health and an enhanced quality of life.

Peer support is the main reason most people join cancer survivor networks, and that support comes through online and on-site programs. The cancer survivors themselves generally provide online content, and group members typically lead the community meetings.

Membership in most cancer survivor networks is free, although many groups welcome donations. Some groups are open to anyone affected by cancer, either directly or indirectly, while others are established especially for the benefit of survivors themselves. Whether someone is facing a treatable skin cancer or going through extremely difficult and painful mesothelioma treatments, joining a cancer survivor network can be invaluable.

The Benefits Of Community Support Groups

Most cancer survivors already have the support of their doctors, loved ones, neighbors, and colleagues. What they need most is the support of someone who has “been there.” On-site support groups allow cancer survivors to establish the special relationships necessary to cope with the disease.

Cancer survivors can find support in their healthcare communities, churches, civic centers, and even schools. Hospice centers provide support for end-of-life challenges.

Cancer support groups allow those affected by cancer to interact with each other. Group members share personal stories, exchange firsthand knowledge, and recommend resources. Most of all, they develop important connections that doctors and loved ones, though well meaning, simply cannot provide.

The Benefits Of Online Support Groups

Online networks are ideal resources for cancer support. They help cancer survivors find each other, and give them a sense of belonging. Online groups are a place to share feelings and frustrations honestly, openly, and even anonymously, if desired.

There are many great survivor networks on the Internet. Cancer Care and Cancer Survivors Network are two to consider. Some groups are open to people with all cancer types, from breast cancer to mesothelioma and other malignancies. Some networks are designed to support people with specific cancers. For example, “Reach to Recovery” supports breast cancer survivors and “Man to Man” offers prostate cancer support.

Joining an online support network offers many benefits. Cancer survivors can create a profile, access other member pages, and interact with each other. Blog comments, email, chat rooms, instant messaging, and discussion boards allow them to communicate freely. And online sources provide links to helpful resources, programs, and services, as well.

By: David Haas