Tag Archives: Prophylactic mastectomy

The good old days

WARNING: NSFW / graphic content below.

It has been over four months since my most recent surgery (March 1, 2016) and three and a half years since I had my prophylactic bilateral mastectomy. As I’ve said before, I have no regrets and am glad that I made the decision to undertake this journey. The last few years have not been easy, but it has all been worth it!hood

Things look great! I would even dare to say they are perfect (see photo below). Of course, there are little things here and there; we are our own worst critic. For example: I lost part of my nipple to necrosis, which resulted in loss of pigment, so I’ve been considering a 3D nipple tattoo to fill that in. In all honesty though, after the complications I’ve dealt with and how long this has taken, I am ecstatic about the outcome!

I’m in a great place in all aspects of my life:

  • This is all finally behind me and I’m happy to say I’ve had nothing but love and support from my husband, family, and all those around me (including you!).
  • On a personal level: hub and I are about to celebrate 10 years of marriage and 20 years together, we’ve traveled a bit this year and will be going to Ireland as well as the motherland to see my family in September AND the FORCE conference in Orlando in October, I chopped off some of my long hair and am slowly making my way to blonde (I love it!), and I lost the 15 pounds I gained over the last three+ years.
  • On the work front: I love my job, which allows me to work from home, and I’m about to dive into a really exciting business opportunity (more details later).

It’s easy to say things are great when they really are great, but if you’ve been reading my blog for a bit, you may know that I’m a firm believer that your attitude really is everything. My anthem has been These Are The Good Old Days by PinkEven when they were shit days, they were still good days. I had the chance to say NOPE to breast cancer

Throughout this process, I’ve remained positive and never lost sight of my “why” for doing all this, which was to greatly reduce my risk of developing breast cancer. Although we are BRCA mutation uninformed negative, cancer has been plaguing our family. My sister was just 29 when she died from the disease (I’m 35). My mother was diagnosed with ovarian cancer and died just a little over a year later. My aunt is in remission from colorectal cancer. I’ve been discussing a salpingectomy with my oncologist and will most likely have that procedure before 40 (stay tuned) followed by an oophorectomy after 50. At the end of the day, I am glad I made the decision to be proactive. I will continue to closely monitor my health and make decisions that best address and mitigate my personal risk.

Because “these are the good old days and I think I’d like to stay” – Pink.

The results

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Another one behind me

It has been over three years since I started this process. On January 22, 2013 I underwent a prophylactic bilateral mastectomy to greatly reduce my risk of developing breast cancer and started breast reconstruction. Since then, I had a few complications, due to which the process took much longer than planned.
not-this-shit-again
On March 1, 2016 I had my 9th surgery. Fun stuff!

Honestly, at this point, I’m tired of talking about it (and feel like my friends and family are tired of hearing about it too). I figured I should at least tell you boys and girls, since it is part of my process and well, this is what the blog is for: to document my journey.

What I thought was my last procedure was in July 2015, when we swapped the expander on my right with an implant. After that surgery, I received IV antibiotics for a month (see post: PICC life). Things cleared up and three months out I went on vacay to Mexico, where I finally was able to wear a bikini without an expander! I enjoyed being done and was very much relieved.

Shortly after, I noticed a bit of a divot above my right side. At the time I thought: no biggie, things take time to settle and it wasn’t really that bad. Over the next couple of months, the divot got deeper and the implant dropped lower. By January I knew that the implant had bottomed out and surgery was the only way to fix it. After consulting with my plastic surgeon, I scheduled the procedure. Over the next two months I went back and forth on whether I would actually have it. On one hand, I was displeased with the outcome and did not like seeing it in the mirror; on the other, I have experienced multiple complications and was afraid of the possibility of more issues.  I had it. The PS did a pocket revision; easy surgery and super easy recovery.

465t377Although the tone of this post may not be entirely positive, I am in a good place. I feel great and still have no regrets about having the PBM. Somebody told me that it wouldn’t be easy and they were right. Totally worth it, though. However, I won’t say I’m done, because I’ve already declared that a couple of times and was wrong. We shall see where this goes. So far everything looks good.

Bralooza

Do you know that most insurance providers (in the US) cover post-mastectomy bras for women who have undergone a mastectomy? There are limitations, deductibles and co-pays still apply, and you might have to jump through some hoops. More info below photos.

I get six bras and six camisoles per year under my current plan. I recently visited a local mastectomy boutique for a fitting and left with four Coobie bras, two Anita bras, and two camisoles (+ third on order). I will return in the spring when Amoena releases new colors and styles to pick up three more camisoles. The experience was relatively hassle-free and since I already met my out-of-pocket maximum for the year, they were all covered at 100%.

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How does it work?

I started by calling my insurance provider to check level of coverage and to request a list of providers. Post-mastectomy bras are considered medical devices (the code is L8000), so I got a list of places that sell all kinds of devices, which didn’t really help. Then I contacted a local mastectomy boutique: 1. to ask if they work with my insurance provider, 2. determine what I needed to do before I came in, and 3. to make an appointment. I provided my surgeon’s contact information and my insurance details. The boutique reached out to my plastic surgeon and obtained the required prescription and details. They also contacted my insurance provider and secured pre-authorization. A week later I got a call that all was set. They really made it easy.

Some insurance providers work with stores like Nordstrom (appointment required). Those that don’t may reimburse after the fact. Also, stores carry different stock, so if you want Coobie bras, you may need to call around. Keep looking until you find a place that works for you. There are options. Nordstrom will even remove underwires for free (so I hear).

There are providers out there that post their policy online and you may see caveats such as “covered instead of reconstructive breast surgery” or that a breast cancer diagnosis is required. Don’t give up. You may still get coverage if your surgery was prophylactic and you chose to complete reconstruction. You could be asked to prove medical necessity though. The insurance department at the boutique will help you with this. However, if your provider does cover these, keep in mind that your deductible and co-insurance may still apply. Also, they may only cover “basic” bras, so no bejeweled magic lifting contraptions. 🙂

 

Reintroduction

I said NOPE to Breast CancerI never really worried or thought much about cancer … until my sister was diagnosed with breast cancer at the age of 28. At the time, I was 21 years old, naive, in college, worried about what plans I had for the weekend, and didn’t really grasp what that meant. More than ten years later, my sister is gone, my mom is gone (ovarian cancer), my aunt is in treatment for colorectal cancer, my other sister just had her own scare, and although I am BRCA mutation uninformed negative, I underwent a prophylactic bilateral mastectomy and started the breast reconstruction process on January 22, 2013. I said NOPE to breast cancer.

Making the decision to undergo such a drastic surgery was both very difficult and extremely easy at the same time. It came after 10 years of vigilant screenings, when anxiety gripped me every six months as I prepared for my sonogram, mammogram, or MRI, anticipating the results to be the worst. When a screening discovered suspicious lumps, I knew that the time had come.

The reconstruction process was long, painful, and complicated (documented here on my blog). More than two years and eight surgeries later I can finally say I am done! No regrets. If I had to go through this all over again, knowing what complications were in store, I would make the same decision in a heartbeat.

It is not the right answer for everyone facing breast cancer and one that should not be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences.

There are many resources out there that can help. The My Destiny Foundation and its Facebook support group has been there for me for the last three years, since the days I was making surgery prep lists and had lots of unanswered questions about my upcoming procedure and following recovery. The group is a family of strong women from all over the world that support each other, laugh together, cry together, and everything in between. Visit www.mydestiny-us.com to learn more. If you need support, request to join the Facebook support group. See you there!

Srsly?

At this point, I don’t really know what to expect. Is this ever going to end? I have already lost an implant twice: one year apart, one per side, both a month out from exchange surgery, but for different reasons. I am 3.5 weeks post-op and worried.

michaelscottnoooI’m paranoid at this point, so I check things over a couple of times per day. Two weeks after my exchange surgery, I noticed a new spot on my right breast, the one we just exchanged. Part of it was hidden underneath the hypafix tape that was still hanging on, so I removed that to investigate what was going on underneath it. It was below (but not including) my incision, about an inch in diameter, and red. #FML #WTF #SRSLY. Please, not again! That familiar feeling of dread washed over me. I sent photos to my plastic surgeon looking for some feedback and reassurance. The response began with:

“I doubt this is anything serious, but with you, one never knows. …”

We emailed a bit more and a Bacrtim (antibiotic) prescription was called in to my pharmacy. Fast forward a week: the spot is still there! Some days it is darker and wider than others and I’ve been keeping my PS updated by email. I am now seeing a hint of blue, which is not a good sign. This is really deflating, but I am really trying to keep my shit together and take it one day at a time. This sums things up nicely:

“Your breasts do not make sense. I remain hopeful and a little concerned. …”

I completely agree: this does not make sense! It popped up 2 weeks after surgery, I have not been using any products on the skin, I am not wearing bras or tight clothing, there are no other areas that look like this. Is it an infection? I’m back on Bactrim for over a week, why isn’t it going away? Do we need to switch to something else? Or do I just sit and wait? I go in to see the PS on Monday.

On top of that, I discovered a lump in the same breast at about 11 o’clock. We are both puzzled by it and can’t explain what it is. It was not there before surgery and Dr. M didn’t note any lumps while he was in there during surgery. Maybe it’s another stitch knot, not yet dissolved (one of these little assholes cost me an implant last time). He suggested that it may be a surgical staple, but not 100% sure if those were used; there’s nothing about them in my post-op report. My immediate concern is the suspicious red spot that won’t go away. To be continued …

Happy ending?

WARNING: NSFW / graphic content below.

One week after exchange surgery, during which my right tissue expander was replaced with an implant, I am feeling fantastic! My recovery has been going very well and I like what I see. The surgery took a few hours; I was home by 2pm. I left the hospital in a bra and with a drain exiting my right armpit. I suspected I would have one, so while still a big bummer, it was not a surprise. The pain level was low overall (maybe a 3). The following days were uneventful. I spent the weekend home alone, mostly reading and sleeping.

Pain Scale

Drain tubeAlthough my level of activity was low, drain output was 80mL for the first couple of days, so it had to stay in a bit longer. During my second follow up appointment, on Monday, the drain was removed. About a foot of tubing, which was placed in the pocket around the implant, was pulled out (see pic on right: from the black stitch just under the hand, all the way down!). This is usually not painful, just weird. Good riddance! Feeling so much better with that thing out of me. Dr. M declared that things were looking good and ordered a follow up a week later.

So, how are things looking? You tell me!

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Mentor round, smooth, high profile, silicone in 450ccs. Left in pic: 1 week, right: 10 months.

IMG_3901I am still swollen and bruised (Arnica helped), but the result is pretty darn good, considering the circumstances. I’m hesitant to celebrate, however. With my history, I have a few more weeks to go until I can breathe a little easier. The issues I experienced after my last two exchange surgeries (see: Houston, we have a problem and Déjà vu) both happened about a month out. So, fingers crossed that this is my happy ending! I can’t wait to move on with my life.

Long road of expansions ahead

WARNING: NSFW / graphic content below.

The follow up appointment after tissue expander placement surgery was Friday. The drain output was not high, but too close to Dr. M’s threshold for removal (50mL), so we decided to leave it in until Monday. I Had an opportunity to see how the incision is healing. So far everything looks goodt. I have been arnica montana and have very little bruising.

Low healthOverall feeling OK .. as long as I stay on my med schedule. Slowly trying to ween off of it, but not in a big hurry. Last night I didn’t set an alarm to wake up and take meds at night. Well, my body woke me up at 6 with a not-so-gentle reminder that I just had surgery. That was not pleasant at all.

The prune juice, Smooth Move tea, water, pears, and other fruit worked their magic. I went #2 on second day of recovery, but still have a bit of bloating and discomfort. TMI? If you’ve ever had general anesthesia surgery, then you understand how important this is. If you haven’t, then I hope you never do! Pain meds, no food/drink after midnight, inactivity, and anesthesia cause constipation. 

At the appointment Dr. M removed my dressings, which means I can now take a shower. I’m excited to do that today. Reviewing an old post (Shower time) and gathering supplies while I wait for hub to get home and help. This time around I didn’t get any tape or glue on my incision. If you recall, it was a suture knot that caused my last complication and the removal of the implant. To avoid that scenario, Dr. M used a single-filament type of suture (vs. braided) and only placed sutures and knots where absolutely necessary.

I also found out that my tissue expander is filled with 100ccs. We are filling all the way up to 550ccs, so that’s a long way to go. I start the expansion process six weeks post-op and will be getting fills every other week. In the past I have done 50ccs per fill, but may be doing a bit more this round to speed things up a little bit. Looks like July 23 may be just right after all.

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