Tag Archives: breast cancer

Angelina Jolie Pitt: Diary of a Surgery

Once again, the HBOC community is buzzing. If you haven’t already seen, Angelina Jolie Pitt has published another NY Times Op-Ed. This time about her choice and reasons for undergoing a bilateral salpingo-oophorectomy (removal of fallopian tubes and ovaries). She explains that she has been planning to have this procedure for some time, but recent test results pushed her to go through with it to reduce her risk.

She is careful to point out that this choice is her own and right for her after carefully considering options, but may not be for others. Surgery is not the only option.

I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

I am again so thankful that she chose to share with the world her genetic status and decisions related to her health. She is bringing global awareness to hereditary breast and ovarian cancer, what many organizations have been striving to do for years. Also empowering women and families facing hereditary cancer to discuss and seek out options available to them.

As I read and react to her piece, I think of my own family history and my health. I lost my mother to ovarian cancer a little over a year ago (29 year old sister to breast, great grandmother to ovarian, and have an aunt undergoing treatment for colorectal). We do not carry any of the known genetic mutations that increase risk of cancer (we are uninformed negative; read old post on the topic), however, my doctors and genetic counselor are convinced something is there, just hasn’t yet been identified. I am managing my healthcare assuming same. In just a few days I will be meeting with my oncologist for the regular bi-annual appointment, which will include the same blood test Jolie Pitt mentions as well as an ultrasound. I know that just like her, the moment those results are abnormal, my surgery will be scheduled. I have also done lots of research and considered other options, but already know this surgery is the right answer for me personally. It will greatly reduce the risk of ovarian cancer, just as the prophylactic mastectomy does for breast cancer. When is the question. I dread the aftermath, which includes surgical menopause, and have thus far been putting it off. Cross your fingers for me.

For more information about genetic mutations, hereditary breast and ovarian cancer syndrome, screening and prevention options, local support group finder, and much more, visit the FORCE: Facing Our Risk of Cancer Empowered website. Talk to your doctor about your family history and whether genetic testing is right for you. To find a genetic counselor in your area, check the National Society of Genetic Counselors website.

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Insurance matters

healthinsuranceThe topic of insurance coverage has come up a bit in the Facebook groups recently. There were some good questions. Having been through a few (ha!) surgeries, appealing rejected claims, and recently switching from one provider to another (United Healthcare > Blue Cross Blue Shield), I have a little bit of experience dealing with insurance and can share some thoughts and things to consider.

Please note: I’m in the US and have coverage through my employer. Different insurance carriers and their plan benefits will vary, so call your provider with any specific questions you may have for your own scenario. Also, I am sharing my understanding based on personal experience; my costs outlined here. If you have additional tips, feedback, or corrections, please send them to me. Would love to get some information about Tricare too.

  1. Know your deductible, level of coverage/cost share, and out-of-pocket max (OOM)
    These amounts will tell you how much of the costs you will be responsible for. The deductible is how much you must pay up front before your insurance kicks in (ex: $1,000 for me); cost-share is the portion your insurance (or you, depending on how it’s written) will pay after deductible is met (ex: 80% covered by insurance/20% for me to pay) up to the OOM; the OOM is the maximum that you will have to pay out of your own pocket for the plan year ($3,500 for me). All of these amounts are in your plan documentation. Also, your plan will have different amounts for out-of-network providers, as well as individual vs. family amounts.
  2. Get pre-authorization for everything
    This is an important one. Typically the doctor’s office will handle this on your behalf, but may not. If you are responsible, do this for every single provider (and facility) that will be participating in your procedure. If your doc’s billing department is handling it, make sure you confirm with them. It is not unheard of for insurance providers to reject a claim because proper pre-authorization wasn’t granted .. even if it is a qualifying procedure and the provider is in-network. If rejected, appeal (see #4).
  3. Confirm a provider is in-network
    Another one that can get you. Don’t assume that because your plastic surgeon is in-network, that the anesthesiologist will be too. Different providers and facilities will bill separately and they may not all have a contract with your provider. For each of my surgeries I got a bill from plastic surgeon (+ onco surgeon for PBM), anesthesiologist, pathology lab, and hospital.
  4. Appeal any rejections
    If your insurance provider rejects a pre-auth request or claim, find out why. There are many possible answers: they deem a procedure medically unnecessary or experimental, procedure coding issue, no required pre-authorization, a provider or facility is out-of-network, etc. See if your doc’s billing department will help resolve. If not or unsuccessful, appeal. Call and find out what the appeal process entails. If it’s a medical necessity issue, ask your doc to write a letter. If it’s an out-of-network problem, explain why you used that doctor vs. another one in-network. You may have to attend a hearing or submit documentation.
  5. Check when your plan year resets
    Deductible and OOM typically reset when your plan year does and this doesn’t always coincide with the calendar year. This is important when you expect to have multiple procedures. Ex: if you’re having mastectomy and reconstruction with expanders and then implants, you will have two surgeries. Say your plan year starts in August and you have the mastectomy in April followed by exchange in October, you will have to pay OOM twice. I am now on my third plan year, unfortunately, so 3 x $3,500.
  6. Women’s Health and Cancer Rights Act (WHCRA, 1998)
    You may have heard of a law that requires insurance companies to pay for these procedures. This is it, but there are some caveats. First, the WHCRA does not require insurance companies to pay for a mastectomy. Your scenario will have to meet the provider’s criteria to be eligible for that coverage. However, if a mastectomy is covered, then reconstruction and any resulting complications must be covered. Also, you must still follow the rules as far as pre-authorization, cost sharing, and in/out-of-network providers are concerned. This law doesn’t extend to Medicare or Medicaid, but those have their own mastectomy-related benefits. Here are some additional points from the extremely helpful The Breast Reconstruction Guidebook (get this book!):
Breast Reconstruction Guidebook Table 18.1

Breast Reconstruction Guidebook Table 18.1

There’s also the Family Medical Leave Act, which applies to work protection and is not related to insurance coverage, but worth mentioning. FMLA entitles employees to take unpaid leave for family or medical reasons of up to 12 work weeks in a 12 month period and still have a job to come back to. There are some caveats to this one too. Read more about it on the Department of Labor site. Don’t forget Short Term Disability if you have that coverage. This will cover a portion of your wages, while you are out.

Whew, that was a lot. Did I forget anything?

Breast cancer and diet, cleanse edition

At this point we all know that maintaining a healthy diet, exercising on a regular basis, and avoiding known pollutants and carcinogens in our environment are all key to optimal health. To that end, we all make related decisions in our lives based on what we believe.

There are no guarantees that if we live well, we won’t get cancer or another disease. But, there is enough evidence showing that how we live and what we eat can impact our health. Why not give yourself the best fighting chance you can to stay healthy?
-Dina Coleman (Top Nutrition and Lifestyle Tips for Preventing Breast Cancer)

I feel like I should take advantage of the little control I do have over my health. I maintain a whole foods, plant based lifestyle .. I would say I eat healthier than the average Jane. I’ve never been one for fad diets, with the exception of South Beach, which was the beginning of my long-term lifestyle transformation many years ago. I have done 30-day green smoothie and other similar challenges. My most recent endeavor was a 21-day cleanse. I went through that program back in November and am preparing to do it again now. Join me!

The Fresh Start 21 Cleanse from the girls at Simple Green Smoothies is a really great program! It can be purchased and completed at any time, but there are four “group” events throughout the year. The next group cleanse starts on Monday, February 2. The SGS crew partnered with a holistic nutritionist to create awesome and tasty dishes, a full 21-day meal plan, shopping lists, and a handy dandy cleanse guide. There is also a Facebook group for cleansers to support each other, offer tips, ask questions, commiserate. Having completed this once before I will say that this program is really worth the $59 (on sale). That’s a pair of shoes or jeans or a couple of dinners out. The food is wholesome, healthy, nutritious, and really tasty. I’m excited to it is all again. If you’re interested in exploring the whole foods menu or just looking for some fresh recipes, get more info here.

You’re up

I got the call. Woo hoo! I got the call that made my day. It really made my month. There has been a cancellation and an earlier spot is available on Dr. M’s calendar. I’ve been bugging the Patient Care Coordinator for a few months now and have been at the top of the cancellation list, so the spot is all mine. My next surgery has been moved up to January 27!

That’s only two weeks away! I am ecstatic. Thee months into the six month wait, but I’ll take it!

During this surgery we are going to be placing a tissue expander on the right side, where we had to deconstruct after the last incident in October. I also got the exchange surgery penciled in for July 23. I’m at the top of that cancellation list too and may be up sooner. There is a slight chance that I’ll go right to implant and not need surgery #8, but I’m not holding my breath.

That is all. Just this awesomely good news. 🙂

 

Pinking of the NFL

I am a big fan of Spike’s Ink Master. It is an elimination-style reality show, where tattoo artists compete for $100,000 and a feature in Inked Magazine. On one of the final episodes last season, artists did post-mastectomy tattoos for breast cancer survivors. There were some beautiful pieces in there! Episode highlights here.

This season there is also a breast cancer-related episode and it airs tonight (November 18 @ 10pm EST on Spike). DeAngelo Williams of the Carolina Panthers appears as a guest judge. He talks about his mom and her four sisters who all died from breast cancer. The artists are designing a piece to honor DeAngelo’s family. What he doesn’t say in the previews, and I’m not sure if he mentions in the full show, is that his mother and her sisters all carried a mutated BRCA1 gene, which they inherited from their father, DeAngelo’s grandfather. He and his two sisters are negative for the mutation.

What does this have to do with the pinking of the NFL? I don’t watch football and don’t follow the athletes at all, but I have noticed that there’s an awful lot of pink out there. I did not know DeAngelo’s story or that he is largely responsible for the players of the NFL wearing pink during Breast Cancer Awareness Month. His mom was the inspiration behind the idea for players to start wearing pink cleats five years ago.

Breast cancer has affected me to my core. I’ll never forget the loss of my family members. But it also allowed me to use the platform I have in the National Football League to bring awareness all over the country. -DeAngelo Williams

In the BC and HBOC worlds there has been a lot of talk around awareness (aren’t we all aware?), the love or hate for the month of October (aka Pinktober), and pinkwashing, but that’s another topic for another day. I am just sharing the previously-unknown-to-me sotry of the pink in the NFL. Are you going to watch tonight? I am!

Related articles:

FoobieFitness.com

You’ve seen me mention the amazing Casey Eischen and her post-mastectomy exercise program, I’m sure. I’ve done it more than a couple of times. Foobie Fitness, which started with Casey’s YouTube channel and a community page on Facebook, recently became an official non-profit! Today Casey and her team launched FoobieFitness.com aiming to help not only women navigating breast cancer-related journeys, but anyone interested in disease prevention, nutrition, yoga, and the overall cancer-free lifestyle. Who isn’t interested in saying NOPE to cancer?!? Make sure to visit this awesome resource!

FoobieFitness.com

 

My feedback featured as a Success Story on FoobieFitness.com:

 “The Coach Casey post-mastectomy exercise program is was what really helped me make a speedy and successful recovery after my prophylactic mastectomy and tissue expander reconstruction over a year ago. I knew that my range of motion and mobility were going to be severely impacted by the traumatic procedure, so I began searching for the right program that I could begin right away and would help me in my recovery. I found just that in Casey’s videos.

I started doing wrist bends while still in my hospital bed and I slowly progressed through additional exercises in the following days. Each time I played that YouTube video I was doing better than the day before and I attribute that to this program!  I talk about and recommend it whenever the opportunity presents itself. I still do it as of the day I write this, having had additional reconstructive surgery just four weeks ago! Casey has always been positive, encouraging, and willing to offer additional advice and tips. She even created a clean and simple nutrition plan to supplement the exercise regimen. Thank you Coach Casey for helping me and countless other women get through this!” – Nope2BC.com

On a side note: I had my second fill today bringing the expander to 400ccs. I have also moved my exchange surgery out a few weeks to September 11. The story continues.

Breast cancer and diet, green smoothie edition

If you’ve ever watched Forks Over Knives, Fat, Sick and Nearly Dead, Food Matters, or read any of the multitude of books out there, like Anticancer, that support a whole-foods, plant based diet and lifestyle, you already know that eating clean offers protection against cancer and even suppression of any disease already present (cancer or otherwise).

“Let thy food be thy medicine and thy medicine be thy food.” – Hippocrates

Mushrooms, flaxseed, soy, collards, kale, carrots, berries, tea, legumes, nuts, oats, and on and on and on. Superfoods can help ward off heart disease, cancer, cholesterol, and more. But it doesn’t work when they’re deep fried, slathered with unhealthy, high-fat dressings or sauces, or barely there in whatever you are eating. You can eat them raw and whole or join me and smoothie it up! I am in for the SimpleGreenSmoothies.com 30-Day Green Smoothie Challenge. It starts January 1 – that’s TOMORROW. Get your blender ready and stock up on some leafy greens and fruits. It’s time to get healthy (or healthier). Click below to sign up for the challenge. You’ll get emails with details and recipes + shopping lists every Thursday.

Do you already drink green smoothies? Got some great recipes to share? Are you using any boosters like chia/hemp/flax seeds? Coconut oil? Let me know what works best for you!

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