Tag Archives: mastectomy surgery

Nipples, pecs, bras, OH MY!

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I visited my plastic surgeon again to get a few more questions answered. Among them: what are we going to do with these nipples? I’m still waffling over keeping them and doing nipple reconstruction later. The reasons this is so difficult for me are many.

If they stay:

Will they die? Will they be in the right spot on my reconstructed breasts? What will the proportion be to my new breast size? Will I have any feeling left? Will I have permanent headlights? Basically, keeping the nipples intact leaves a few things up to chance. If the surgeon does a spectacular job and doesn’t snip any nerves or vessels that are essential to survival, we’re good; if something goes wrong, more surgeries will be needed.

If they go:

How much bigger will the scars be? Will I miss them? Will my husband be put off? How long until I can get some nipples back on these babies? Will the breast shape lose some projection and look a bit flat? Will I get 3D tattoos or something more creative? This seems like the less complicated route and nipple reconstruction is an option.

So what’s the verdict?

I don’t know. I’m still undecided. (See Let’s give them a chance for the update)

The plastic surgeon and I discussed these concerns and options. He did note that for each woman that undergoes a mastectomy as a preventative measure, about 30 are doing it after a cancer diagnosis. Saving the nipples is not a very safe choice once there are cancer cells in the body, therefore some surgeons don’t have much experience with nipple-sparing mastectomies. Out of the patients my plastic surgeon has worked with, there have been zero nipples lost. However, he is not the one that will be wielding the scalpel when the incisions are made. That lies in the hands of the other surgeon. When I recently met with him (see Speed Bump), he didn’t seem too keen on the nipple-sparing route. I am withholding making the call until I meet with him again and discuss this in more detail.

QuestionsOther questions from this visit with plastic surgeon:

  • Do we really need to snip the pec nerves?  NOT doing it isn’t really an option. It is done to create the pocket, but also for optimal projection. If the pec major remains completely intact (not sure this is even possible), this can cause “jumping boob” when you shake hands, reach for things, or even have a conversation, if you talk with your hands.
  • Will I have to wear a bra (ever)? No. I just want to take a second here and say “woo hoo!!!“ There will be an ace bandage wrapped around the chest for at least a couple of days post-surgery, but long-term a bra is not needed. Side note: As women age, they typically gain weight and the different types of tissue that make up the breast lose elasticity, so everything starts drifting south due to gravity. All of that tissue is removed during the mastectomy. Also, a piece of AlloDerm is implanted under the skin and acts as a sling for the breast implant (check out this 2 min video on YouTube – NSFW). Want a laugh? Check out this lady whose boobs sagged so low she just tucks them into her pants!
  • Should I use BioOil before and after surgery to soften tissue and minimize scars? Maderma and other products that help reduce scars are a waste of money. The most effective way to do this is to stimulate the tissue by applying pressure to it. One hour each day, take some “me” time and massage the scar tissue on the breasts.
  • Will you be performing the entirety of the reconstruction? Meaning: will any medical students/residents be practicing on me? Residents may be present to watch the surgery, but they do not participate. A surgical assistant will the stitching after everything is done.
  • When do you submit for insurance pre-authorization and does the general or the plastic surgeon complete the disability paperwork? The breast surgeon does his pre-authorization first, then the plastic surgeon submits the paperwork. Disability paperwork is completed by the plastic surgeon about three weeks out. By the way, the Women’s Health and Cancer Rights Act of 1998 (WHCRA) requires insurance companies covering the mastectomy to provide coverage for all stages of reconstruction of the breasts and  treatment of physical complications of the mastectomy (doesn’t matter if prophylactic). Note: this is IF the insurance company covers the mastectomy.

Breast Reconstruction Guidebook Table 18.1

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

Preparing for surgery

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I have seen many different lists outlining what you should do before surgery, what to take to the hospital, and how to make your life easier through recovery. Check out the Mastectomy Surgery Checklist from FORCE, a prep guide and a checklist from MyDestiny.

Here’s the list I kept for myself (after-surgery updates included) .

NotePreparing your body:

  • Get in the best physical shape you can manage before the surgery. The healthier the body, the more tolerant it is to trauma and the faster it recovers. ¤ YES! But lay off the push-ups and focus on core and legs. Note: I chose reconstruction via tissue expanders/implants, which directly impacts the pectoralis major muscle. Your doctor may offer different advice based on type of recon (or no recon). 
  • Constipation can be an issue after pain medication and anesthesia. Two weeks pre-surgery start getting more fluids (avoid caffeine), fiber, flax seed, prunes, or prune juice in your diet. You can also purchase an over-the-counter stool softener. ¤ Colace was the only medication that made me nauseous. I stopped taking it. Sunsweet prune juice did the trick. I went #2 on day five.

Preparing your home:

  • Rent a recliner or a hospital bed. Alternatively use lots of pillows, buy a wedge pillow or get yourself a BedLounge. Because of drains you will not be able to sleep on your side and obviously can’t sleep on your stomach. Pillows are crucial if you don’t normally sleep flat on your back. Most women report that sleeping at a 45 degree angle seems to be most comfortable. Buy one of those c-shaped travel pillows to help support your neck. ¤ I borrowed an electric recliner from a friend. Covered it with a vinyl sheet and a sterile white one. BEST THING EVER.
  • Buy or borrow a TV tray type of table on wheels. Have it next to your recliner or bed.
  • Get a Tiddy Bear or a travel-size pillow for the car to keep the seat belt off your chest. ¤ Tiddy Bears are great! The key is to have two of them – one up high on the shoulder and one under the boobs.
  • Have a set of clean sheets ready for the day the you return from the hospital.
  • Move everything you will need during the day to waist level.
  • Buy paper plates, plastic cups, straws, food in/on smaller and lighter containers. ¤ Yes on the straws, but all the other stuff I didn’t really use.
  • Prepare and freeze meals ahead of time or have someone as the designated cook while you recover.
  • Buy or rent a shower chair or have a cooler handy. ¤ I sat on a small cooler.
  • Get a back brush for showering. ¤ YES!
  • Place bottles of hand sanitizer everywhere.
  • Buy a personal digital thermometer if you don’t already have one. Monitor your body temp (keeping infection in mind). ¤ Yup, this is important. Take temp daily.
  • Things for the nightstand:
    • Medications (track when and how much taken) ¤ Set an alarm clock/cell phone to wake up at night and take on a schedule, rather than wait for the pain to hit.
    • Gauze, tape, scissors
    • Rubber gloves
    • Hand sanitizer
    • Tissues
    • Chapstick
    • Snacks
    • Water
    • Note pad and pen
    • Books and magazines
    • Tablet/eReader and charger
    • Phone and charger
    • Camera ¤ This is important. I took photos every single day from multiple angles. They helped me keep track of the necrosis and were my go-to when I thought I developed a seroma.

Other handy items to buy before surgery:

  • Lanyard or a special bra with drain pockets (insurance may cover) or make your own drain pockets if you have a sewing machine (see vid below) ¤ A lanyard worked well for me.
  • Button down shirts
  • Dry shampoo
  • Alcohol wipes
  • Non-child-proof medication bottles
  • Tylenol

For the hospital (if staying overnight):

  • Button down top
  • Lanyard/drain pockets
  • Head band and ties
  • Toothbrush and paste
  • Face wipes
  • Throat lozenges
  • Chapstick
  • Eye mask, ear plugs
  • Back scratcher (meds will make you itchy)
  • eReader/tablet and charger (check if hospital has wi-fi)
  • Headphones
  • Tiddy Bears or small pillow for the seat belt during the ride home

Tiddy Bear Comfort Strap

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I came across this on Imgur and just had to share. I thought it was a joke, but Tiddy Bear is real! This is so hilarious, but so unbelievably relevant.

Tiddy BearsDo want for after surgery! The chest area is sore and sensitive during recovery. Many women who have gone through it recommend getting a little pillow or a stuffed animal to help keep the seat belt off the boobies. Tiddy Bear was created for that purpose by a woman who had surgery due to breast cancer. Check it out at TiddyBearComfortStrap.com.

Post-op update: These things are really great. I use them every time I drive somewhere and they do make the ride more comfortable.

Speed bump

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I have been seeing the breast surgeon since the spots showed up on the ultrasound in March. I expected to work with him and the plastic surgeon I chose. Well, that will not be so. During a recent screening appointment he threw a wrench into it. He doesn’t have regular operating privileges at the hospital the plastic surgeon operates in and vice versa. He thought he would, but with his current patient load, there just aren’t enough weeks in a month for him to do whatever has to be done in order for a hospital to grant those privileges to an “outside” surgeon.

That’s just peachy! Now what? Do I pick one of the other two plastic surgeons or do I find another breast surgeon? He suggested that I stick with the plastic surgeon and meet with another breast surgeon – one he highly recommends. So off to another appointment!

I met with Dr. K and discussed most of the specifics of what has been going on with me and where I stand now.  He’s available to do the mastectomy on the 22nd, he seems like he knows what he’s doing, he does think that this is a good idea, we got along just fine, and he’s originally from Jersey (good or bad – you decide). I feel like I don’t have much choice at this point, as it doesn’t look like the other surgeon can do it, but I know I don’t have to “settle,” so I’ll think about it and see if I’m good with this arrangement or not.

Going under the knife

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So what’s actually going to happen?  How does this work?

The prophylactic bilateral mastectomy is serious business.  The operation can range from four to over 12 hours – depends on what type of mastectomy (skin-sparing, nipple-sparing) and reconstruction (direct, delayed, implant, DIEP, TRAM, other flap, fat transfer) are planned.  It requires at least one night’s stay in the hospital and has a lengthy recovery (multiple-week’s-worth, not just a few days).  During a mastectomy the surgeon removes all of the breast tissue leaving little or none behind.  The breast reconstruction can happen or begin at the same time the breast tissue is removed: the breast surgeon removes the tissue and hands off the scalpel to the plastic surgeon who does his magic.

After consulting with both surgeons, I chose to have a skin-sparing mastectomy and go the two-stage implant route for reconstruction.  Sadly (or not – depends on how you look at it) I do not have enough extra tissue and fat to spare for some new boobies.  I’m still undecided on whether or not I want to keep my own nipples, but more on that later.

This whole procedure scares the crap out of me.  Even though I’m still two months out, I’m already nervous!  There are so many things that need to be considered and so many unknowns.  A few things are still up for discussion with the surgeons.  I have another list going and will be meeting with both of them again to get some more info to help me decide (updated a couple of answers post-appointment).

  • QuestionsDo we need to biopsy the sentinel node to see what’s going on there? Original verdict was no, but to be re-discussed with new surgeon (see Speed Bump). The answer is still no.
  • Should I keep my nipples? Eventually decided that I’m going to keep them.
  • Do we really need to snip the pec nerves? It is done to create the pocket, but also for optimal projection. If the pec major remains completely intact, this can cause “jumping boob” when you shake hands, reach for things, or even have a conversation, if you talk with your hands.
  • When do we do insurance pre-authorization? Breast surgeon does it first about a month before surgery. Plastic surgeon submits after that is granted.
  • How long will I be unable to shower, open my own water bottles, high-five, do the nasty, drive, work, etc.? Timetable for Healing is one of the sections in the Breast Reconstruction Guidebook and details the first four weeks post-mastectomy. You are back to most of your normal routine during week four.

Breast Reconstruction Guidebook Table 14.1

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

Aside from worrying about infections and other surgery complications, the thing that bugs me most is long-term limitations on physical activity.  During the procedure, the surgeons snip some of the nerves that are attached to the pectoralis major to create a pocket for the implant.  Because of this, the pec major atrophies and loses some of it’s function.  The pec minor learns to pick up the slack, but doesn’t fill the shoes.  Does this mean that I won’t be able to go rock climbing again?  How about wake boarding?  Eek!  Anyway, another topic to research and discuss.

Need to know basis

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Hubby has obviously been in on it since the first time the phrase “prophylactic bilateral mastectomy” came out of my mouth and wholeheartedly supports my decision to do this. Until a couple of months ago, the “circle” consisted of just the two of us. I’m still conflicted on whether this is something I’m ready to share with a wider audience, but I’m writing this blog, so here goes – widening the circle. I’ve shared my story with a few close friends and they have been extremely supportive. Getting past the initial concerns and discovering what this all means, they offer their ears, shoulders to cry on, time, opinions, and support.

The conversation with my family was hard. Mostly because I felt guilt (and still do) for adding this to their plate. My mom was diagnosed with ovarian cancer in June – same time I was going through my little “adventure.” I felt the lump the day before mom’s colonoscopy that lead to the discovery of a large tumor. My biopsies were the same day she had her initial surgery. Her diagnosis came when I was still waiting for my results. I flew to Europe to see my family in August and told my father and my sister. Dad’s reaction was much like my husband’s – terribly concerned, scared, angry that this is haunting our family. He listened to my thoughts, asked tons of questions, played devil’s advocate, but ultimately expressed his sincere and complete support of whatever decision I was going to make. My sister’s reaction was similar, but her point of view and concerns made me consider things I hadn’t thought through before. Mom still doesn’t know. She just had her sixth chemo and is recuperating before the next round of tests that will show us what is going on in there. If the tumor shrank down enough, her surgery is tentatively slotted for January. I’m holding off until we know where the chips will fall. We need her to focus on staying positive and giving this thing all she has got.

While I sometimes do have my moments of “girl, are you crazy?” or “why would you do this to a perfectly healthy body?”, I’m comfortable with the decision and ready to get this over with!

Family matters

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It was time to make the call. I decided to do a little digging into my family history. Mom’s grandmother (her mom’s side) had ovarian cancer, my grandfather (dad’s side) had prostate cancer, my dad had an issue with a tumor near his kidney, my mom was just diagnosed with ovarian cancer, one sister was 28 when she was diagnosed with breast cancer and died just a year later, and my other sister is healthy and has not been affected thus far (knock on wood).

Although my own genetic test results were negative for the known BRCA mutations, my updated family history and recent personal history bumped me into the “high risk” category. Thus far everything that came my way via experience and information gave me more reason to move forward with the procedure. Other than the risks that go hand-in-hand with any major surgery, there was nothing significant that made me question if this is the right thing for me.

What if the MRI uncovered that the masses in my breasts were cancer? What if it was a false-negative and by the time I felt the lumps myself, it was too late? Will I ever trust another ultrasound or MRI? And if I don’t do this and down the road breast cancer comes into my life, will I be able to live with the decisions I make now?

So that’s it. Say tootaloo to the boobies. Time to part ways.

Now what?

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I made appointments for consults with the three plastic surgeons.  Not being too familiar with the procedure, I made a list of the questions that immediately popped into my head.  Then I made Google my new best friend.  After many hours online and a ton of information and photos, most of my general questions were answered.  I narrowed it down to the ones that were more specific for me (I now know the answers, so including them as well):

  • QuestionsWhich procedure would be best for me? Nipple-sparing bilateral mastectomy with two-stage breast reconstruction.
  • What are the risks for that type of procedure? Nipple or breast tissue necrosis, infections, seroma, capsular contracture – NSFW, ruptures, rippling, cosmetic issues.
  • Can I see before-and-after photos of previous patients/work?
  • What is the time frame for the whole process, from start to finish? Up to six months if there are no serious complications.
  • Which hospital?
  • What would be expected of me? Get educated, prepare self and home for recovery, focus on the positive.
  • What are the surgeon’s qualification and experience?

The point of the consults was to determine who I would like to work with if I wanted to move forward. I remember thinking “How can I decide based on a 30 minute conversation? What should I really consider?” I met with all three of the surgeons recommended. After talking it over with my husband and doing some more Googling, I decided I wanted to work with Dr. M. I based this on a bunch of different things including years of experience, the details we discussed, his demeanor, our “chemistry,” the before-and-after photos of his patients (many binders of them), and the fact that he is well known for DIEP flap reconstruction, which is very complicated and requires microsurgery, so this one should be easy, right?

I already had a breast surgeon, I just picked the plastic surgeon, now all I needed to do was to schedule it.

But why?

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I never really worried or thought much about cancer until my sister was diagnosed with breast cancer when she was 28 (10+ years ago). She died a year later. So … annual mammograms began in my mid 20s and mid-year ultrasounds were added a few years later. The topic of a prophylactic bilateral mastectomy came up on a couple of occasions, but I didn’t think I had enough reason to seriously consider it. So far, so good.

In March 2012 an ultrasound spotted some issues. Three separate masses were present – two on the left breast, one on the right. They developed in the six months since the last mammogram. Based on quantity and consistency, the oncologist thought they were cysts. Rather than doing a biopsy to draw fluid for testing, he recommended that I first undergo an MRI screening. At this time I started doing some casual research on prophylactic bilateral mastectomies.  Waiting for test results was hell, but when they eventually arrived, they were good – no cancer. Whew! High five!

Fast forward to June 2012. I felt something unusual during one of my monthly self-exams. The lump I felt was in one of the three spots where the ultrasound found issues. Another ultrasound confirmed that two of the three spots had increased in size and were now palpable. Fine-needle aspiration biopsies were done and results sent for testing. I got names of a few plastic surgeons in my area and left with a plan to start the conversations, no matter the results. The biopsy results were negative for cancer, but there were abnormal cells detected. I already knew I have “extremely” dense breast tissue/fibrocystic disease (which can make diagnosis of cancerous tumors more difficult). I was told to continue my self-exams and keep regular screening appointments as I had in the past.

You’re doing WHAT?

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January 22, 2013.  Seems so far away, but I know it’ll be here before I know it.  That’s the day I’m having a prophylactic bilateral mastectomy (PBM) and start the breast reconstruction process.  A PBM is an elective, preventative procedure which surgically removes breast tissue (see more details under WHAT IS A PBM?).  You’re doing what with WHAT?  Ya, I am doing it.  I have thought long and hard about what this really means.  I have discussed this with family, friends, and doctors.  I have done hours of research, almost ad nauseam.  After considering all of the factors, the risks, the benefits, the uncertainties, the consequences, I know this is the right decision for me.