Connecticut has the second highest rate of cancer in the U.S.

Cancer is prospering in Connecticut and ravaging our families, our personal finances, our life plans and our dreams. Even as more cancer treatment centers are built employing the latest technology and talent, it is taxing our healthcare system.

Cancer survivors are by default, super-users of the healthcare system for the rest of their lives. It’s not our fault. We are thankfully monitored regularly – at first by our oncologist, radiologist, and surgeon(s), barring any complications, such as cardiac stress or physical issues – who use x-rays, MRIs, PT-scans, CT-scans and the like to check our cancer status. And then, if we are lucky, our medical monitoring team slowly dwindles down to our oncologist. In addition we see physical therapists, cccupational therapists, social workers, plastic surgeons, psychiatrists, nutritionists, chiropractors, you name it, we may have the need for them.

Vast Majority of Breast Cancer Cases are Not Hereditary

This socioeconomic toll on our system can be effectively reduced IF we allocate funds to minimize environmental risk factors. Did you know that 90%-95% of all breast cancers are non-hereditary? When we think about the toll breast cancer takes on our society we must think about it in terms of each survivor’s lifespan.

Focus on Preventing Cancer

Why not step back and look at how we can get a handle on this epidemic in Connecticut from a preventive or interventional mode? How many people are taken out of the workforce prematurely because of cancer? I had seven people working at my company when I was diagnosed. I let them all go. Think about the economic impact of that…

Study Confirms Cancer Treatment’s Long-lasting Effects

If you’ve had cancer, I don’t need to tell you this, but… a study has confirmed that more than 60% of breast cancer survivors experience at least one treatment-related side effect even six-plus years after diagnosis, so says the results of a University of Pennsylvania study released April 9, 2012.

Speaking about the study, Kathryn Schmitz, PhD, MPH, an associate professor of Biostatistics and Epidemiology at the University of Pennsylvania who serves as a senior scientist on the committee overseeing creation of a surveillance model for breast cancer survivors said, “Our work provides the first accounting of the true magnitude of the post-treatment problems suffered by breast cancer patients, and serves as a call to action for proper monitoring and rehabilitation services to care for them. We can no longer pretend that the side effects of breast cancer treatment end after patients finish active treatment. The scope of these complications is shocking and upsetting, but a ready solution for many of them already exists in rehabilitative exercise.”

The study looked at side effects like postsurgical complications, skin reactions to radiation therapy, upper-body symptoms and functional limitations, lymphedema, weight gain, and fatigue.

Unlike orthopedists and cardiologists who frequently send patients for physical rehabilitation to ensure their complete recovery, oncologists and surgeons commonly view these side effects as “expected”  and “normal” and don’t refer patients to services to address side effects.

The good news is The American College of Surgeons Commission on Cancer has published guidelines that will REQUIRE that all accredited cancer treatment centers provide treatment summaries and survivorship health care plans to all their patients by 2015.

To read the complete news release about the study’s finding’s click here.

Where we are now…

Phew..I’m sorry the site was down. Life got busy, and work got in the way! But I have learned quite a bit more since I last posted. Many new posts to come! Thanks for becoming a twitter follower and a facebook visitor!

The Breast Cancer Fund’s Focus is Prevention

I’m a big fan of the Breast Cancer Fund. It is not as well known as the bigger Breast Cancer organizations, but the Breast Cancer Fund’s focus is on identifying and eliminating the environmental causes of breast cancer. I love the idea of looking ahead to ways that we can prevent breast cancer. It is my hope that there will be a day (maybe even in my lifetime) where breast cancer, and other cancer cases will be a rarity, rather than epidemic.

I eat organic, I exercise (but not enough), and I have changed my life and career to minimize stress, I am an educated and dedicated green advocate – personally and professionally. But honestly, like 85% of women diagnosed with breast cancer, I have no family history of breast cancer,  and it is my belief that my personal efforts can only go so far toward minimizing my risk of cancer’s return.

I live in Connecticut. In Connecticut we have the second highest rate of breast cancer incidence in the country according to the latest data. I recently heard verification of what I had suspected: Connecticut is a downwind state – which means we get other states’ pollution. Gee, thanks.

I’ll address that in my next post.

Be well.

Exercise Reduces Lymphedema Risk by 70%

Wow! The importance of exercise – weightlifting in particular – has never been so clearly illustrated as in the results of this clinical trial conducted by the Abramson Cancer Center at University of Pennsylvania. The report from the trial was first published on December 8, 2010.

Called the PAL Trial (an acronym for Physical Activity and Lymphedema) the results provide:

• good advise to help Lymphedema Survivors keep Lymphedema in check,
• minimize its progression, and
• a way for cancer survivors to help prevent lymphedema from developing.

Click here to read about the PAL Trial.

Advances in Lymphedema Detection and Treatment

“On April 19, 2011, the Avon Foundation for Women, in partnership with the Lymphatic Research Foundation and the National Lymphedema Network, assembled a group of leading scientists and clinicians expert in breast cancer-related lymphedema to discuss the advances being made in the early-detection and early-intervention of upper extremity lymphedema, how such advances are improving management of the impairment and the need for clinical standardization of care.”

They published a great report entitled, “Recent Advances in Breast Cancer-Related Lymphedema Detection and Treatment”. Here is the report. I have highlighted areas of critical information. (If you’d like to read or pass on the unhighlighted version here is the link.)

This report is right on. When I told my surgeon that my first experience with lymphedema had landed me in the emergency room the day after Christmas, he said, “Gee, we rarely see it.” That surgeon was the head of the Breast Center at a leading hospital, one of 65 in the country designated as a National Cancer Institute (NCI), and he acted like lymphedema was a rarity. His short comment, dismissal actually, ended our conversation. And that was a disservice to me. I lost respect for him that day, and thereafter sought out a new surgeon.

Fortunately, I have not needed a breast cancer surgeon, but I knew then, and I am even more clear about it today, that he was not treating me with the respect every cancer patient deserves. If he had offered to help me find some answers – answers he obviously didn’t have at the time, I would be in much better shape as a cancer survivor with lymphedema. I don’t blame him for not having the answers, but I do blame him for not having compassion. That’s a crime. And a shame.

Read my next post, “What happened to you?” to hear about my new fabulous surgeon and the day I walked in with my arm wrapped with compression bandages.

To find out more about the Avon Foundation for Women and information on this report click here.

Why doesn’t anyone know about Lymphedema?

Okay, I’m a little dramatic. Sure, some people know about it, but not many that I come across. There are 2.3 million breast cancer survivors in the US (according to the American Cancer Society, Breast Cancer Facts and Figures 2010) and I happen to live in the state that has the second highest rate of breast cancer in the country and I don’t see any other women (or men for that matter) walking around with a lymphedema garment on.

I know three women who wear lymphedema garments. So that’s four of us with Breast Cancer-related Lymphedema (or BCRL, as the clinical trials refer to it) – in five years of survivors. I attend a breast cancer support group and my fellow survivors are absolutely terrified of getting lymphedema. I think the fact that so few of the area practitioners acknowledge it, or about it in a way that gives survivors information and an action plan adds to the fear. For me the fear of the unknown has always been worse than knowing what I am facing.

When I am out and about, people sometimes casually ask me what I did to my arm. The confused look on their face – when I tell them it is related to breast cancer treatment – lets me know this is the first time they have heard about it. Let’s face it, how many people are going to strike up a casual conversation with the person next in line at the store about their experience with a life-threatening disease?! “Excuse me, could you hand that pack of gum, and how did that cancer treatment work out for you?” It just doesn’t happen.

The medical community needs to do the next right thing and address lymphedema so that breast cancer survivors have the tools to deal with it. Depending on who’s statistics you read, 22%-33% of breast cancer survivors will develop lymphedema. That’s one out of every 3 or 4. Think about the women you know who have had breast cancer. I’ll bet we all can think if 3 or 4. Now picture one of those women wearing an arm and hand garment. That would be an accurate picture of the state of survivorship these days.

I don’t like lymphedema. It has been a real burden, a ‘game-changer” as they say. But as I have repeatedly said about cancer treatment and the resulting lymphedema, “It sucks. But considering the alternative, I’ll take gratefully take it any day.”