Tag Archives: HBOC

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

2016_7_12

 

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.

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!

PICC life

nofuncityGreetings from NO FUN City

It has been four weeks since I got the PICC (peripherally inserted catheter). That’s how long I have now been on IV vancomycin. I have been cranky and frustrated.

Why?

Following my most recent surgery two months ago, I developed a spot of redness. The cause was a mystery. No fever, swelling, discharge, or open wound. An ultrasound didn’t tell us much.

Suspecting an infection, my doctor and I agreed that antibiotics were the way to go. Two different oral types didn’t help, so we moved to the big gun, vancomycin, which is a broad spectrum antibiotic often used to treat staph. I was willing to try anything to avoid another surgery and potential implant removal. Been there, don’t want to do that again!

PICC xrayHow?

The vanco would be delivered intravenously, so I visited the hospital’s intervention radiology department and had a PICC inserted into my upper arm. I was told I would not need to be hospitalized for this treatment and sent on my way. Later that day I had a delivery of supplies and meds (holy moly, it was a lot of stuff). In the late evening a nurse came to hook me up to my new best friend. I chose to have an electronic pump deliver the meds on a programmed schedule, rather than administering the doses myself. This meant I would be lugging it all around with me 24/7.

My fridge was full of meds and my dining room table became the supply station and the place where every couple of days I sat with nurses that visited me to draw blood and change dressings. Over the course of four weeks I had 79 infusions and 13 visits by 7 different nurses. For showers, I had to plastic wrap my arm and bathe using only the other one.

PICClife

Initially this was a two week gig, but when the progress wasn’t satisfactory, we extended the treatment for another week, and then one more. Throughout I kept my doc updated via emails and photos. There were a few office visits in there too. My insurance covered all this at 100%.

Now what?

Although initially we saw improvement in the redness, a new spot developed in another area, and some days it was angry red and others not. Right now the spots are faint, but still there. After four weeks of treatment, we did a status check and weighed the options:

  1. Continue treatment
  2. Stop treatment and keep a close eye on it
  3. Go in there to get a tissue sample and send for cultures

At this point, I am not confident that what we are doing now is really helping, so we are going with #2. It is possible this isn’t an infection. We discussed this at the very beginning, but then it seemed like the best explanation. Since I had no open wound, we weren’t able to get swabs for cultures and I was not a fan of going in there as mentioned above. If this was an infection, the vanco would’ve nixed it by now. What exactly is going on, we don’t know for sure. It may be happening due to the physical stress on the tissue or some other thing we haven’t thought of. My body is weird … the various complications from the last three years are proof.

But for now, I am free of the pump and bag! To celebrate, I had lunch with friends and went bathing suit shopping for an upcoming trip to Punta Mita, Mexico. I can’t wait to lay on the beach and think about my next margarita instead of my next infusion. Fingers crossed that this will resolve over the coming days/weeks. It’s the last hurdle before I cross the finish line.

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 …

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