T-minus

WARNING: NSFW / graphic content below.

The final countdown has begun. T minus seven days until my exchange surgery! That’s right, just one week left. This will be surgery #8 in the mastectomy and breast reconstruction process, which started January 22, 2013. The goal is to replace the tissue expander on my right with a squishy implant. On one hand, I am very excited about this surgery, as it should be my last one. However, I am also incredibly anxious. This process was supposed to take about eight months and two surgeries. Here we are 2.5 years later with #8 on the horizon. I’ve experienced a few complications that have drawn it out and caused me a lot of grief. In any case, this time next week I will be home and it will be behind me. I can focus on healing and moving on with my life!

Surgery prep

As I prepare for next week, I think about what supplies I need to gather. I’m dusting off the good ol’ Checklist that has helped me get my stuff together each time. I’ll be using the abbreviated version from my Box o’ recovery crap post, which lists the things I keep on the night stand:

  • MedicationsRecovery aids
  • Lanyard (I will very likely have a drain)
  • Measuring cup
  • Rubber gloves
  • Alcohol swabs
  • Scissors
  • Tape
  • Digital thermometer
  • Back scratcher
  • Tiara (of course!)
  • Tissues
  • Chap stick
  • Cough drops
  • Water
  • Snacks
  • Hand sanitizer
  • Lotion
  • Note pad and pen (to track meds and temperature)
  • Camera
  • Kindle
  • Phone and charger

That should do it.

Status update

Yoda fucksI haven’t posted a photo since the tissue expander placement, six months ago. Slacker! My expansions went OK. That side is a different shape and size than my implant, of course, but not too bad. We stopped expansions at 450ccs, which is the volume of the implant on my left. There are a few things off at this point, like my nipples not being “level” and some weird divot in my cleavage, but honestly, at this point, I’m almost all out of fucks to give about these details.

So here I am, On the left in photo I am sporting a tissue expander in 450ccs. On the right I have a Mentor round, smooth, high profile, silicone implant in 450ccs (10 months after exchange).

IMG_3801

A few months after surgery I’ll evaluate the state of things and decide how much the details are bothering me and if there is anything else to be done. Maybe that divot will fill out (it’s OK in a bra) and the nipple-level thing won’t be as bad. Things will be different with an implant and maybe they’ll be symmetrical and just right.

One thing I know will definitely follow is a tattoo by Amy Black. I still haven’t decided if it will be just a 3D nipple fill or something artsy fartsy and covering more of my chest wall. We shall see!

FORCE Conference, BSO, HRT, and more

This past weekend, I attended the 9th Annual Joining FORCEs Against Hereditary Breast and Ovarian Cancer Conference in Philadelphia. This is the only event of its kind; created by and for the members of the HBOC community. To say that this event was awesome is a gross understatement. It was an amazing weekend packed with relevant content and activities.

Leading researchers and experts in related fields presented on latest research. I learned about newest options for cancer screening and prevention. Most interesting to me were the sessions related to ovarian cancer, since I am currently considering a risk-reducing bilateral salpingo-oophorectomy (BSO).

My personal takeaways on the topic of Ovarian Cancer: Early Detection and Prevention, presented by Dr. Beth Karlan, Cedars-Sinai (slides):

  • Taking tubes only (salpingectomy) and sparing the ovaries is a reasonable intermediate step for younger women (I’m 34). It is still recommended to remove the ovaries in natural menopausal age (early 50s).
  • Taking one ovary does not change age of menopause.
  • In general, there is no need to remove uterus at time of BSO or salpingectomy alone, based on current info and this varies by individual.

The tube-only and one ovary option is very attractive to me at this point. However, if I choose the BSO, surgical menopause will very shortly follow, so I also attended a session about Managing Menopause Without Hormones by Dr. Ann Steiner, Penn (slides) and Dr. Diljeet Singh, Permanente (slides). If you’ve been reading my blog for a bit, you may have noticed that I maintain a plant-based lifestyle and stay away from processed or synthetic products. When it comes to managing menopause symptoms with hormone replacement therapy (HRT), I am hesitant. I understand there are bio-identical hormones available and Premarin is an option, but I am uncomfortable with the idea of any HRT, because essentially I will be introducing something my body didn’t produce itself naturally/synthetic. After this great session about other options for managing symptoms, I stuck around to ask each of these experts their opinion on HRT for someone like me, who will need to be on it for 10+ years. Would they recommend HRT to manage long-term issues (osteoporosis, heart disease, loss of cognitive function, etc.) or can these symptoms be successfully managed without HRT? I didn’t get a clear answer and the advice was conflicting, so the jury is still out. If I choose to spare an ovary or both, this will be a non-issue, but nonetheless it was great to learn about the non-HRT options.

I will be discussing this topic again with my gyn onc in October, when it is time for my bi-annual screening (TVU and CA-125). At this time, I know I will be having some risk-reducing surgery in the future, but have not yet decided which type and when.

dinnerOne of tbeBRCAwarehe other awesome things about the conference is that many other women (and men) from our relatively small HBOC community attend (650 this year), so it’s an opportunity to finally meet in-person some individuals I’ve been chatting with online. Also, got a chance to catch up with those that were there last year. Loved spending time with my FORCE buds!

And lastly, THANK YOU FOR YOUR SUPPORT to all those that came to visit nope2BC and bought jewelry. All the proceeds are donated to FORCE and with your help, we raised a lot of money! Hope you enjoy your pieces.

Will you join us next year? The 10th Annual Joining FORCEs Against Hereditary Breast and Ovarian Cancer Conference will take place in Orlando, FL, October 6-8, 2016. I’ll be there!

FORCEconferenceOrlando

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.

Tissue expansion

And we’re off! We have begun round three of tissue expansions. I initially got 100ccs during the expander placement surgery to which we just added 50ccs for a total of 150ccs. We are going all the way up to 550ccs, so this is going to take a while. Started off slow with only 50ccs to see how I would tolerate it this time around. So far, so good. I’ll be asking for more next time.

What is tissue expansion?

Reconstructing the breasts after a mastectomy can be achieved in a few different ways, including using tissue from other areas of the body or breast implants. In some scenarios chest skin and muscle are first expanded (stretched) before the breasts are reconstructed. A post from a couple of years ago further explains how this works:

Tissue expanderTissue expanders, which are like “pre-implants” (pictured on left), are inserted underneath the pectoralis major muscle. They are similar in shape and size, but are more rigid, unnatural, and uncomfortable. A round magnetic port in the top half allows for insertion of a needle, without compromising the expander. The tissue expanders are slowly filled with saline to stretch said muscle and the skin that covers them, until the desired volume is reached.

Breast Reconstruction Guidebook Figure 7.1

The process of filling the tissue expanders is pretty quick and uneventful. First the nurse uses a little plastic contraption with a metal pin at the end to find the magnetic port in the tissue expander. Once the center of the port is identified, the nurse sanitizes the area and injects the needle attached to a syringe holding the saline. She then slowly pushes the plunger until all fluid has been injected into the expander. This takes less than one minute. After completing the fill, she places a little round band-aid over the injection site. The end. This procedure itself is painless.

The hours or days after a fill, however, can be uncomfortable and this will vary from one fill to the next and from one woman to another. Some women have no pain at all, some experience a gradual increase in pressure and pain, and some are surprised going from one completely painless fill to another one that knocks them off their feet. During round one I was fine until about fill 6, which was not fun. Days after 7 were so uncomfortable, that I split fill 8 in two. Some women take muscle relaxers or pain meds before their appointments.

Here are a couple of great videos explaining the process:

Source of Figure 7.1: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

Featured Image -- 2945

Regulating the Next Generation of Genetic Tests

nope2BC:

Very important topic, especially for those of us who are BRCA mutation uninformed negative. Thank you, FORCE. Hereditary breast and ovarian cancer syndrome is not just BRCA.

Originally posted on Thoughts from FORCE:

Gene sequencing – also known as genetic testing – is the process scientists use to analyze DNA in search of mutations and variations in an effort to discover more about the connection between genes and traits, health and disease. Since the discovery of BRCA 1 in 1994, the sequencing of genes to find mutations has held importance for people with cancer in their family. With advances in biomedical technology, scientists have developed ways to process thousand of genes at the same time (in parallel) and at lower cost than earlier sequencing methods. These next-generation – or “next-gen” – sequencing (NGS) methods have brought opportunities and challenges to the field of genetics. NGS has allowed the development of panel tests that can look for mutations in many genes, including newly identified genes that might increase cancer risk. One of the challenges involves developing regulations to ensure that the resulting information is…

View original 976 more words

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?