Today is World Ovarian Cancer Day. Know the signs!
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.
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 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.
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.
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…
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The 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.
- 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.
- 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).
- 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.
- 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.
- 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.
- 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!):
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?
WARNING: NSFW / graphic content below.
I recently attended a local FORCE support group meeting. As always, it was fantastic! Our group meets quarterly, varies in size from five to 20, in age from 20 to 60ish, and is comprised of mostly previvors (in various stages: just found mutation to done with surgeries), but also women currently undergoing treatment, as well as survivors. There’s something for everyone facing hereditary breast and ovarian cancer to relate to. I highly recommend you find a group near you and attend at least one meeting. You may find that it’s not for you, but it’s worth a try. Find a FORCE group near you by visiting the local support page. Other organizations also have in-person support group meetings, so check with your doctor or do some googling.
Sometimes we have guest speakers come to share their research, work, products, or information relevant to our community. Our most recent guest was tattoo artist Amy Black of Amy Black Tattoos and Pink Ink Fund. Since 2011 Amy has been specializing in nipple and areola repigmentation as part of the breast reconstruction process for patients post-mastectomy due to breast cancer or as a prophylactic measure. Her 3D nipple tattoos look like the real thing! See for yourself below. Amy also founded the Pink Ink Fund shortly after beginning nipple and areola tattooing in response to seeing clients concerned about costs and having no health insurance. Amy’s work both in restorative tattooing and supporting the community is amazing! I plan on paying her a visit once I am done with my reconstruction. In addition to 3D nips, she also does touch ups, repigmentation, and artistic designs.
Here are some examples of her work:
Amy is located in Richmond, VA. If you are interested in contacting Amy, click here.
WARNING: NSFW / graphic content below.
So far, so good. Things are looking good and healing well after my latest surgery two weeks ago when a tissue expander was placed on my right side. I am not loving the discomfort I have. Feeling no pain, but the tightness is definitely there! It is that elephant-on-your-chest feeling. Not as bad as after original mastectomy, but still very uncomfortable.
I have not been doing my stretching and range of motion exercises on a regular basis, so time to get back to those at least once per day. No lazy days! I am a fan of the Coach Casey Eischen post-mastectomy exercise program. She designed it specifically for women recovering from breast cancer related surgeries after she had her own PBM and noticed a void in this area. Check out FoobieFitness.com for exercise tips, videos, and nutritional information. Here is the video with level 1 & 2 exercises. These helped me a lot after my original surgery two years ago and each one after that.
And here’s my progress pic: two weeks after tissue expander placement on my right side (left in pic).
First expansion: March 4. Exchange surgery: July 23, 2015.