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Getting a Grip on Anxiety While Fighting Lung Cancer

Panel Interview with Susan Varghese, RN, MSN at MD Anderson, Dr. Rebecca Suk Heist, MD, MPH at Massachusetts General Hospital Cancer Center, Dr. George Simon, MD, FACP, FCCP at MD Anderson, and Melinda Dunn, Stage IV Lung Cancer Survivor, Patient Advocate

At the LUNGevity Live Town Meeting at MD Anderson Cancer Center in March 2016, Andrew Schorr interviews the panel about understanding anxiety, depression, and the statistics of lung cancer. Susan Varghese begins by explaining that by patients talking and asking their healthcare team for help allows them to understand and then prescribe the appropriate care for them. Dr. Heist and Dr. Simon caution patients to interpret statistics with care because the are only averages, and not specifically about you. Every case and person are different. Melinda adds to that by saying she overcame her cancer by refusing to believe the statistics because “it’s not me, Melinda, it’s some group.”

Watch the full video below to hear all about anxiety and statistics from four lung cancer experts.

Getting a Grip on Anxiety While Fighting Lung Cancer from Patient Empowerment Network on Vimeo.

An Ounce of Prevention is Worth a Pound of Cure

An ounce of prevention is worth a pound of cure. It creates a sense of awareness and provides a window of opportunity for you. Sometimes it is a matter of accountability and sometimes it is about breaking old patterns.

When my father was diagnosed with heart disease many years ago, we started eating and cooking differently. That didn’t change my dad’s ways and he ultimately died of heart disease at 62 years old. I remember he used to eat and drink things that weren’t good for him and joke about it with me and then say: “Don’t tell mommy.” That was his choice. I made a different choice long before his passing to eat healthier. If I did eat things that weren’t healthy, my body sent signals to me that these foods weren’t acceptable to me anymore.

When my mom was in treatment for ovarian cancer I found myself in Medical Libraries looking for clinical trials that would save her. When she passed it was a catalyst for me to look into prevention for my own health. I went for genetic testing at NYU Medical Center. While I don’t carry the gene for breast cancer, I have to be cautious because of the history of cancer in my family. I diligently pursued my annual gynecologist exams and additional ovary scans and blood work. Additionally, I followed up with my 6-12 month mammograms.

The result of my taking my own action on proactivity toward prevention was a diagnosis of stage 1 invasive lobular breast cancer. To take it a step further, I was originally advised by my breast surgeon to only have one breast removed. I followed my intuition and chose a double mastectomy and that resulted in even more prevention. When my surgery was completed, I was told that the other breast was pre-cancerous. If I hadn’t been my own best advocate, I would have found myself in the same shoes at another time.

Since I was diagnosed at an early stage my Oncotype couldn’t justify chemo treatment either way, but I remain on Tamoxifen therapy for probably another seven years.

I have also been discussing ovary obliteration with my oncologist and another specialist because of my lineage of cancer. In all likelihood, I will have my ovaries removed sometime this year.

When I finished treatment for breast cancer and had reconstruction surgeries, I thought to myself: “Now what? Hmmm, I have focused for a year and a half on my breasts, now it’s time to get back to the taking care of my other body parts and I got back on schedule with my dentist, gynecologist and internist all in the name of self-care and prevention as I lead my busy life balancing career, family, fun and connection with others. I knew that if I didn’t exercise extreme self-care, I would be much good to others.

About a week ago, I am finished up 4 and 5 of Moh’s surgeries to remove skin cancers from my body. In order practice prevention, we have to know our bodies, face fear and get checked out.

In some cases, I do know that even prevention is not a cure, because my mother was one who religiously (not in a hypochondria mode) went to all of her doctors’ appointments, pap smears, etc., and still she was diagnosed with late stage ovarian cancer. The bottom line is prevention cannot hurt us like lacking in self-love will.

So….., what can YOU do to take an active part in your health? What does practicing prevention look like to you? It could be something as simple as changing your diet or scheduling doctor’s appointments that we hesitate to make because we are always caring for someone else. It could also be taking care of yourself in terms of mind and spirit and working on stress reduction? In what ways can you reduce stress and overload in your life?

This blog is being shared to create awareness and remove fear. Know your body! You are the only one who does. Practice prevention and self-care. Put yourself first so that you can be around to care for others. That is my message and my gift to you on this beautiful day!

If you need help in this area or any other area of your cancer experience, reach out to me gina@newbeginningswithgina.com or visit my website: www.newbeginningswithgina.com.

I look forward to hearing from you!

Xo Gina

Finding the Right Care for You

Telling the Full Story

I’m a bit miffed at the moment. I was just on the cancer treatment center site where I received my care and the opening page reads in bold, “Ranked No. 5 in U.S. for Cancer Care”. Seriously, ‘No. 5’? It made me pause and think, why on earth would anyone want to be treated for something as severe as cancer by an organization claiming they’re ‘No. 5’?

Having gone through the experience of cancer treatment and knowing what I now know, I wouldn’t begin to consider being treated by ‘No. 5’. Fortunately for me I wasn’t, I was treated by ‘No. 1’. I was treated by subject Center that’s advertising ‘No. 5’, yet treated by same as ‘No. 1’? Confused?  Don’t because what I have to share is important to anyone diagnosed with cancer.

Cancer is complicated. Individuals diagnosed with the same type and stage is often different in symptoms, characteristics, and multiple treatment options from one patient to the next. There is no such thing as one size fits all when it comes to treating cancer. Thus you need to be cured by people who are qualified, knowledgeable, and above all, experienced. There are many moving parts in a cancer diagnosis; underneath, there’s a ticking clock.

For the record, I fired ‘No. 5’ following my diagnosis. They may officially be more like ‘No. 500’ but to me it didn’t matter, I knew they weren’t ‘No. 1’. During my initial visits, I met several of the team and didn’t like what I heard. Spare the details but trust had I stayed the course, doubtful you’d be reading this post. Determining your provider is literally a life and death decision, trust me.

Finding ‘No. 1’ requires research, networking, and a bit of luck. All applied in my case and I was fortunate to meet my oncologist. In the initial interviews, I brought along extra ears because you don’t hear every word the doctors communicate. Following the initial meeting with ‘No. 1’, my friend said, “You don’t need look further, he’s your guy.” I didn’t need the affirmation…but it helped.

I’m confident in every rated cancer center in the country there’s a ‘No. 1’ for a specific disease. Conversely there’s also a ‘No. 5’. So placing an overall rating or ‘quality #’ on the Center for validation of an overall one size fits all treatment is misleading. It is equivalent to rating a restaurant. They’re given ‘star’ ratings. You pretty much know what to expect given number of stars. However, when it comes to the food, some dishes are better than others with multiple chefs.

Randy and Renato MartinsThe point is you need to find a team of professionals knowledgeable about the recipe and how to bake it. The best way I know to accomplish is interview several, listen with a minimum of four ears, and make sure you are comfortable with the answers. If not, move on until you do. This is at the core of being an empowered patient and taking an active role in your healthcare. Something that is being stressed more and more as we move to a value based healthcare system.

‘No. 1’ he told me I would be treated with, ‘Intent to cure’. This is physician speak to get your mind thinking along the lines of living opposed to the alternative. What matters is treatment protocol and how adjustments are made along the way. In many cases what begins as a straightforward pathway quickly becomes finer tuned.

I was deemed operable following my first round of chemo. While on the table and wide open, I became ‘inoperable’ due to undetected infected lymph nodes. While splayed open like a gutted fish, my team of doctors debated best strategy for moving forward. Do we remove the lung, leave it, take out a portion, how long recovery from each, what next, etc.? Throughout they’re calculating potential outcome staying true to their objective of, ‘Intent to cure’. This is all transpiring real time while the anesthesiologist drip line keeps on trickling.

Making adjustments as new developments present themselves as described is not the work of a ‘No. 5’. It’s clear and straightforward, ‘No. 1’. Living proof is the most valid testimonial I’m aware of.

Before you put a label and a ranking on any organizations service, make sure you’re telling the full story. Not just what some independent association attaches from a myriad of data points. There’s a lot more under the hood than stating you’re ‘No. 5’ and posting for the general public. Personally, my Center, and more importantly the people within who treated me, is ‘No. 1’. That’s the bigger Story and one you can live by.

Being Your Own Advocate

Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.

They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor’s expertise and patients’ own thoughts and knowledge. With the ever increasing developments in cancer research, it has become harder for oncologists to understand everything about each specialized form of a certain cancer. As Lisa points out, all that patients need to know about is their own cancer, so they can dedicate more time and energy into researching than a doctor may be able to. Being an active participant in your cancer journey is the best way to feel confident in your decision making.

Being Your Own Advocate from Patient Empowerment Network on Vimeo.

A European Patient Advocate Speaks Out

(Editor’s Note: Christine Bienvenu is on the Board of Trustees of our sister organization in Switzerland, the Patient Empowerment Foundation)

ePatient Advocacy

In hindsight, I can honestly say that my ePatient advocacy started in 2008, when my eldest son was diagnosed with Asperger’s Syndrome. With Switzerland rather behind (at the time) in its knowledge about – and treatment of – Asperger’s, I could only find information and communities online that was based in North America. With absolutely nothing like it available here in Switzerland, I decided to create an online platform; today, we are some 300 members who care, share, and support. Our son is thriving in the mainstream schooling system, thanks to our advocating, as parents, for him.

In 2010, my world imploded when four words were uttered: “Triple-Negative breast cancer” (TNBC). Within a year, I’d had 6 rounds of aggressive chemo and a double mastectomy. As for my son, I became my own advocate in TNBC, reading, researching, and asking questions, connecting online with breast cancer patient communities in North America.

There was nothing like it here in French-speaking Switzerland. Health Care Social Media (HCSM)? Unheard of. Patients as partners? Nope. Online patient communities? Way too virtual. While indeed outstanding, the Swiss healthcare system today is highly paternalistic.

So there I was, trying to come to terms with my triple-negative diagnosis, with no local online community to connect with, yet wanting to be able to make empowered, well-informed decisions, and desperately hungry for support from patient peers and access to quality content.

 Social Media and Online Community Expert

Time and treatments marched on. With it, my passion and interest in digital health, HCSM, and patient empowerment grew exponentially – so much so that I became a certified Social Media and Online Community Expert. My thesis involved creating a social media ecosystem with multiple channels (blog, Facebook group & page, Twitter account & LinkedIn page) that would concentrate all breast cancer-related information for French-speaking Switzerland into one easily-accessible space, open 24/7…

A few good girlie brainstorming sessions later, “Seinplement Romande(s)” was born. For those who don’t speak French, “sein” means “breast”. “Simplement” means “simply”. Melding the two, I created “Seinplement”, playing on the notion of the breast and simplicity. The word “Romand(e)s” is a nod to the French-speaking Swiss. As soon as it was launched, the platform took off. Today, members from a number of French-speaking countries are able to connect.

Two weeks before I was due to defend my thesis, I found out I had relapsed. Let my cancer get in the way of earning my diploma?? I.Think.Not. I defended my thesis. And then tackled another 15 rounds of chemo and 28 rounds of radiotherapy. The cancer was knocked into remission by year-end.

HCSM Patient Expert

During my treatments, I focused on promoting patient advocacy and empowerment through social media, connecting with the communities I had founded, meeting ePatient Dave deBronkart and volunteering to translate his “Let Patients Help!” book into French (“Impliquons les Patients”, available on Amazon), attending classes, speaking at international conferences (including the digital health conference, “Doctors 2.0 & You” in Paris in June 2014 and June 2015), and meeting with medical professionals keen on empowering today’s patient. In the meantime, I’ve been hired as Health Care Social Media (HCSM) Patient Expert by both the Geneva University hospital and the Lausanne outpatient university clinic.

On this journey, I’ve seen the importance of having an open-minded, communicative medical team. Last spring, I changed my entire medical team. Trust me: Not easy here, where respect for the “White Coat” is both deeply ingrained and rarely challenged. As hard as it was to do, that very change may have just saved my life…

Access to Clinical Trials

This past July, I yet again relapsed. This time, my new oncologist is young, dynamic, open to participative medicine and shared decision-making. She’s also a researcher. The advantage? Access to clinical trials. In fact, she had the wisdom to do a biopsy to see if my Triple Negative status had changed, and indeed it has: I am now HER2 positive.

Thanks to her discovery, I can benefit from a more targeted treatment plan – something I wouldn’t have had access to if I had still be considered a Triple Negative patient. Only Time will tell. I’ve only just begun my treatments. What I do know, though, is that I will do everything in my power to keep up with advocating for patient empowerment.