Tag Archives: BRCA

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.

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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.

Nipple tattoos

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. Pink Ink FundAmy 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:

1 5 4 6 3 2

Amy is located in Richmond, VA. If you are interested in contacting Amy, click here.

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.

2015_1_31 front

The day after

IMG_2641Yesterday was the seventh surgery of my breast reconstruction. I was a little worried, because of the snow, but it was just a dusting for us, so it still happened.

After three months uniboobin’ it again, I got a tissue expander on the right side. I don’t know yet how many ccs were put in with it. I will find out at my follow up appointment with Dr. M on Friday. The procedure took a little over two hours, as there was some scar tissue that also needed to be cleared away. I got a drain :(. Boo! This time it is not coming right out of the middle of my armpit, but rather on the side. Not complaining about that one. Armpit drains are no fun at all!!!

Yes, I am in pain today. It’s not as bad as initial TE placement after the PBM, but it’s not far from it. Staying on top of the pain by setting alarms on my phone and sticking to a schedule. Also popping Arnica Montana to minimize the swelling and bruising.

I tried to get ahead of the post-op constipation and started downing prune juice Monday. Have been eating lots of fruit, veggies, granola. Also drinking a lot of water, green smoothies, and Smooth Move tea. Fingers crossed that I go soon. No a fan of the bloating and discomfort. Got another pair of compression knee highs as well as the tread socks as hospital souvenirs. I’m sexy and I know it! Today I’m just lounging in bed, reading, Facebooking, and loving my BFF, the backscratcher.

IMG_2640

What’s next?

We wait six weeks for the body to heal and then start the expansion process. Once I find out how much was put in, I’ll have a better idea of how long this is going to take. I typically do 50cc expansions every two weeks. When we hit 550ccs I wait another four weeks before exchange surgery. Right now that is  scheduled for July 23, but I may be able to go sooner again. We shall see!

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.