Tag Archives: Reconstruction

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?

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So it goes

It has been two years since I had my prophylactic bilateral mastectomy. January 22, 2013 was the day. At the time, I expected the breast reconstruction process to take somewhere around six months. Well, two years later I am uniboobin’ it once again and it will be at least another six months before I will have my next (last?) exchange surgery.

So it goes.

This process has not been easy. I’ve hit a couple of significant snags, but I still say this: I WOULD DO IT ALL OVER AGAIN. Knowing what would come my way, if I had to go back in time and contemplate moving forward, but not being able to change anything, I would make the same decision and do this all over again. I won’t lie, I have had bad days. They don’t come often, but they do. On those days I choose to take a deep breath and focus on the big picture and the positive. I consider the reason why I made this decision in the first place. I said NOPE to breast cancer and I would do it all over again. I choose to accept and look forward. So it goes.

Attitude


Here’s a recap of my procedures:

  • 01/2013 – Prophylactic bilateral mastectomy with tissue expander placement
  • 09/2013 – Exchange surgery
  • 10/2013 – Infection and left implant removal
  • 04/2014 – Expander placement and revision surgery
  • 09/2014 – Exchange surgery
  • 10/2014 – Right implant removal

In just a few days, on January 27, I will have surgery #7. During this procedure, Dr. M will be placing a tissue expander on my right side. Over the coming months I will again go through the expansion process until I reach 550ccs. My exchange surgery is scheduled for July 23. I feel like I’m a surgery pro at this point. The coordinator from the hospital called today and we very briefly talked about logistics of the day of surgery. She remembered talking to me before and admitted I received the condensed version of the spiel. Fine by me. I know the drill by now. I’m ready to go! Last thing to do is review my handy dandy surgery prep checklist and gather a few items.

Will I have a drain again? Will everything go OK? Will I have any more complications? I hope not, but if I do … so it goes. Shit happens. We deal with it, because we have to. Happiness (or misery) is in the heart, not in the circumstances.

Choosing implants

Saline versus silicone? Teardrop or round? Will high profile give enough projection? Choosing implants has been a popular topic in the Prophylactic Mastectomy Facebook group this week. While reviewing feedback of some of the other Ladies, I found myself questioning the choices I’ve made. After looking over my little list yet again, I reaffirmed that I have made the best decision for me. Here are the winners upvote and the losers downvote.

QuestionDisclaimer: Each person may give different levels of importance to the factors I list below and should discuss their options with their plastic surgeon. It is not my intention to convey that choosing anything different than what I chose is wrong. I am just presenting my logic. Right, wrong, or just plain stupid. 🙂 As always, I welcome your feedback!

Implant type

Factor Saline Silicone
Durability downvote upvote
Incision size upvote downvote
Chance of rippling downvote upvote
Natural feel downvote upvote
Sloshing downvote upvote
Leak detection upvote downvote

All the hoopla about the link between silicone implants and connective tissue disease, breast cancer, or reproductive issues is just that .. hoopla and unproven. It still caused the moratorium on use of silicone implants in the US in 1992, though. Because of this, breast implants are the most tested medical device out there. The moratorium was lifted in 2006. See FDA’s Update on the Safety of Silicone Gel-Filled Breast Implants for more details.

BreastReconstructionGuidebookTab6_1In any case, both types of implants are encased in a silicone shell. The one encasing the silicone implant is solid, but the saline one has a port (salines are inserted deflated and filled with fluid; silicones are pre-filled). Also, salines are more prone to ripple, causing folds in the shell. These two vulnerabilities are the causes of higher failure rates of saline implants. Although they come out on the bottom here, problems with silicone implants are more difficult to detect. Regular MRI screenings for “silent ruptures” are recommended for patients with these types of implants.

On the aesthetic side of the equation, the incisions needed for salines are smaller, but they are firmer and have been reported to produce a “sloshing” noise.

Implant shape

Factor Round Anatomical
Natural appearance downvote upvote
Natural feel/motion upvote downvote
Higher projection upvote downvote
Complication due to turning upvote downvote

From the various photos I have seen, I am not convinced that there is much difference in the aesthetic outcome, but in my head it makes more sense that anatomical (teardrop) implants have a more natural shape, so I gave them the upvote. While both shapes are filled with cohesive gel, the degree of viscosity varies between the round and teardrop versions. Teardrops may look better, but they are firmer due to the gel being more form-stable (read: solid). This consistency is what gives the implants the “gummy bear” moniker.

Whether saline or silicone, implants come not only in different shapes, but also either smooth or textured surfaces, as well as different projections. Due to the distribution of the gel within the implant shell, the same volume of silicone produces a higher projection in a round implant versus a teardrop one. The higher the projection, the narrower the base. With a 29″ rib cage, I need narrow implants and the round version offers the highest projection: ultra high.

And lastly, the fact that corrective surgery is required if the implant turns is a big one for me. When a round implant turns, you can’t tell, but if a teardrop is loose within its pocket, it is obvious. With the current state of my expanders (one sits higher than the other), I am nervous about this possible issue and want to avoid it.

So there you have it: I chose round silicone implants.

Check out this awesome video showing the difference between regular round silicone implants and their anatomical counterparts.

This is a video of me playing with a round implant that has been ruptured. You can see that this type of implant is also cohesive enough to not leak outside of the shell. It retracts just as the anatomical implant in the above video.

Source of Table 6.1: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

For those of you just joining us …

HELLOI’d like to take a minute to say welcome to new visitors and subscribers! Thanks for stopping by and checking out my blog. (I know you’re really here for the topless pics 😀 – see: My Photos)

I was recently contacted by a reporter who is writing a story about BRCA and hereditary breast and ovarian cancer (HBOC). I was more than happy to share my story, feedback, and reaction to Angelina Jolie’s New York Times op-ed. I thought adding that here is a great way to give the new readers a summary of my story, so here goes …

Recap

I’m 32, married, no kids (more: About Me). Neither I nor any of my family members carry any of the known BRCA mutations; however breast and ovarian cancer are prevalent in our family. My sister was 28 when she was diagnosed with breast cancer and died a year later. My other sister has a breast biopsy scheduled for next week. My mother is currently undergoing treatment for ovarian cancer.

I said NOPE to Breast CancerEven though I am BRCA mutation negative, I have an increased risk of developing both cancers based on my family history and was faced with the same decision regarding my breast health: choose surveillance, chemoprevention, or surgery. For the past 10 years I chose bi-annual screenings via mammograms, ultrasounds, and a few MRIs. I made a different decision and started planning for a prophylactic bilateral mastectomy when screenings discovered some issues (see: But why?) in March and then June of last year. I underwent the mastectomy in January 2013 and am currently going through the breast reconstruction process, which will end with the second surgery (see: We’re getting there) in September. I have consulted with my doctors about having my ovaries removed and will most likely be seriously considering an oophorectomy in about five years.

When I was preparing for my mastectomy, I spent many hours online looking for first-person accounts of the process and following recovery. I wanted to know every little detail related to the options and decisions I had to make: from which doctors to choose, to what type of reconstruction is available, to how to handle insurance coverage complications. I didn’t find many back then, so I started my blog, sharing my story and photos. I write my blog to give women facing HBOC insight into the experience of a prophylactic mastectomy if they choose to undergo one.

The “Jolie mastectomy”

I was immediately very excited when I read Angelina Jolie’s New York Times op-ed. I could relate to her story, as I had undergone my mastectomy just weeks before she had hers. More importantly, her name is known by millions of people around the world and now her story is too. She accomplished with one op-ed what many organizations have been striving to do for years – bring global awareness to BRCA and HBOC.

The essay described her very personal journey and reasons for making the decision she did. I echo her feeling that choosing to have a mastectomy was not easy, but I have no regrets. Although the decision to have surgery was right for me, Jolie, and countless other women, it is not the right decision for every woman and one that shouldn’t be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences. I think it’s important to note that Jolie’s experience is unique. She was fortunate enough to have a relatively complication-free recovery, but there are many women who experience severe complications following their mastectomy.

After her op-ed came the multitude of reactions, commentary, articles, blog posts. Many expressed their support of her decision, but others condemned her. Having made the same decision, it was difficult to not take it all personally. What they were saying about her and the choice she made, they were essentially saying about any woman that made the same decision. I have (thankfully) had support and encouragement from those around me.

Then came the pieces referring to BRCA as the “Angie gene” or the procedure as the “Jolie mastectomy.” I do agree with the post I recently reblogged (see: Semantics) – in a way yes, this trivializes other women, their experiences, their struggles. Women (and men) all over the world deal with the realities of carrying a BRCA mutation every day. The decisions, uncertainty, major life changes, and disruption are a huge part of their lives. For some, not a day goes by that BRCA and cancer aren’t on their mind. Most have watched a loved one deal with cancer and worse. Majority don’t have a famous name or a famous face. Some publicly share their stories via articles, blogs, support groups, and other venues. Jolie hasn’t done anything extraordinary. The “Angie gene?” She’s no pioneer. I have nothing against her and reiterate that I’m ecstatic that she decided to share her story, but she made the same decision thousands of women have made before her and will make after her. Hearing someone say “oh, you had the Jolie mastectomy” makes me cringe and smile at the same time. While I’m peeved by the categorization and potential assumption that I chose this option because she did, I understand that this is the only point of reference some people have and welcome the opportunity to talk about HBOC and BRCA.

3/7/14 update: A few things have changed since I wrote this post in June 2013: mom’s treatment was not effective (or rather TOO effective) and she died in November, my sister’s biopsy results were clear, but she is now prepping for an oophorectomy, my September surgery was NOT my last one,

Nipple delay

Wondering what a nipple delay is? I was too! I hadn’t heard of this procedure until Angelina Jolie announced to the world that she underwent a prophylactic double mastectomy and this procedure was part of the process.

Since that announcement, many different articles and opinions have been published. A lot of them positive, but a few negative. That’s another post for another day. A few pieces did provide more information on the nipple delay procedure.

Breast Reconstruction Guidebook Figure 1.1What is nipple delay?

During the nipple delay procedure, the surgeon makes an incision in the skin and severs the breast tissue and blood vessels directly beneath the nipple (it remains attached to the surrounding skin). Due to this, the nipple is no longer dependent upon the blood supply directly beneath it and becomes accustomed to getting its blood supply through the skin. According to the Pink Lotus Breast Center blog, it actually recruits additional blood flow not previously established.

This is an uncommon procedure. If it is elected, it is performed some time before the mastectomy; two weeks for Angelina Jolie.

Why have a nipple delay?

Surgical nipple delay is used to decrease likelihood of nipple necrosis, which can occur because of loss of blood supply and can lead to nipple loss, following a nipple-sparing mastectomy.

Breast skin is fragile after mastectomy. If it’s exceptionally thin after the breast tissue is cut away or is handled too roughly, it may die. The same result may occur if the breast surgeon severs too many blood vessels that feed the skin or uses eletrocautery too aggressively and burns the inside of the skin, which may then blister and die.
– Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

I was not informed of this option prior to my own nipple-sparing mastectomy. My compromised blood flow resulted in necrosis on my left breast and I lost a nipple. If you are interested in reading about my bout with necrosis (including photos) and the hyperbaric treatment I underwent in an effort to thwart it, please read Tissue necrosis.

Related articles:

Source of Figure 1.1: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

Day 2 of recovery

Total hospital stay after my prophylactic bilateral mastectomy was just a tad over two days. I was not up to or interested in any friends/other family visiting while I was there. Sitting up in bed was challenging and exhausting enough.

The morning of discharge, I saw both surgeons, had a few more hospital staff visitors, and got the discharge paperwork. Prior to surgery I made a list of questions we had to get answered before leaving the hospital, so we gathered the info:

  • QuestionHow and when do I empty the drains? A nurse demonstrated how to do this properly. The drains need to be emptied at least twice per day.
  • Do I need to change the dressings? No, leave as is until the follow up appointment and further instructions from the plastic surgeon.
  • When is my follow up appointment? Friday morning (3 days post-op).
  • Can I shower? Not right away. Take a sponge bath or use baby wipes, until told otherwise.
  • Who do I contact in case of emergency or if I have questions after-hours? Call the plastic surgeon’s office. If after-hours, the answering service knows how to reach him.
  • When do I get the pathology results? They will be available in about a week. Make an appointment with the breast surgeon.
Pink Passion gown

Pink Passion gown

I put on the super-awesome gown that was dropped off by the local Pink Passion Breast Cancer Support Group coordinator. It opens in the front, has flaps on each side of the chest for easy access, and has huge inside pockets to hold the drains. The hubby got the car warmed up and brought it to the front door, where I was taken in a wheelchair by one of the nurses.

Finally home

Borrowing a recliner is the best thing I did to prep for the recovery. It is an electric one, so I don’t have to pull the lever to use it. It is set up downstairs in the living room, with a bunch of the stuff from my checklist spread out around it. I could rest and sleep comfortably without worrying about turning over in the middle of the night.

Bathroom breaks

Prune juice

Prune juice

Getting the medication dosage and timing right took a couple of tries, but once I got it nailed down, I was doing great. The trips to the bathroom decreased since I was off the IV, but I made it a point to try to go every four hours when I woke up for meds. I was conscious of the fact that I hadn’t gone #2 yet, but not freaking out. Since the stool softener (Colace) was the only thing that got me nauseous, I stopped taking it and started downing Sunsweet Prune Juice. This worked! Also, each time I got up, I took at least two laps around the house to get the blood flowing.

Drain management

Emptying the drains was a bit overwhelming at first, but became just a normal thing we had to do. Hubby and I did this two times per day. Gear: rubber gloves, alcohol swabs, measuring cups, note pad, and pen. Each reservoir was emptied, the volume recorded, the port/hole wiped with an alcohol swab, the drain “charged,” and the fluid flushed down the toilet. The drain tubes were interesting (one might also use the word “gross”) to look at. There were clots visible in the lines, but not a problem. The fluids kept draining, so everything was good.

Clot

Clot

More fun stuff coming next, but first, an important announcement from Grumpy Cat, a.k.a. Tardar Sauce.

Day 1 of recovery

Mobility

Although getting in and out of bed got easier, I was still unable to manage a trip to the bathroom in under 15 minutes. A nurse was called in each time I had to go. The feel-good button, the call nurse/TV remote, the oxygen tube, and the finger pulse oximeter clamp had to be removed before I even sat up. The IV bag was attached to the stand, we gathered up all four drains, hubby made sure my naked ass wasn’t completely bare and off we went. By about noon, we were able to do it without a nurse.

I started doing range of motion exercises while still at the hospital. If you haven’t already seen the video from Casey Eischen in my Post-op exercises post, make sure you check it out.

2/1: Check out a more recent post about exercise and nutrition: Foobie Fitness

Drains

Drain

Drain

On the day of surgery and day 1 of recovery nurses emptied my drains. They weren’t the typical JP bulb-type ones, but oval hemovac spring evacuators. Each reservoir was labeled left/right and anterior/posterior. The fluid collected was measured and then recorded. Emptying them was not difficult; keeping them untangled was. Rather than coming out of my sides, the tubes exited my armpits. This placement made for a lot of discomfort anytime my arms were moving (= all the time).

Wound dressing

There was gauze and tape in the armpits for the drain tube sites; the incisions were covered by sterile strips; and the whole chest was wrapped in an ace bandage. Due to the meds, I didn’t feel much pain, but did feel discomfort and pressure – like an elephant sitting on my chest.

Dressings

Dressings

Food

DOsOn the day of surgery I was on a liquid diet, but it wasn’t even relevant as I was not hungry at all. I downed crackers and a lot of water. Hall’s Vitamin C cough drops helped with the dry mouth and throat. There was a menu in my room and food service staff came around collecting orders. I was worried about constipation, so I focused on high-fiber snacks and meals. Breakfast of choice was plain, bland, tasteless oatmeal. Lunch: dressing-less garden salad. Dinner: mushroom soup.

Spirometer

Spirometer

Spirometer

In-between meals and trips to the bathroom, I did breathing exercises using the spirometer. It is a plastic box with a tube attached to it, used to get the lungs back up to full capacity and to prevent pneumonia. You inhale through the tube and try to keep the ball in the air. This gizmo came home with me to continue the exercises.

Pain management and discharge

Typically patients return home after one night’s stay in the hospital. The throngs of nurses, residents, coordinators, and doctors (I really lost count) make their rounds in the morning to see how things are going. My breast surgeon determined I was in great shape and ready to go. The nurses started the process to ween me off the morphine and transition to my prescribed narcotics (Demerol). Don’t know who or why the call was made to give me something different than what I would have at home, but they started me on Norco. Pepcid AC and Colace joined the party too. This is about when the morphine itch started. The back scratcher was my best friend.

I just needed to see the plastic surgeon for his blessing to head home. He ended up with a couple of emergency patients and did not make it to see me. After we spoke via telephone I had the option to go home and start on the Demerol or stay another night and get a prescription for Norco filled when the pharmacy opened. I opted to say and not risk being in pain without access to a remedy.

That night was uneventful. On to Day 2 of recovery.