Mastectomy for Beginners

It's been four months since I had my mastectomy.

At the time I thought I was prepared for it.

I was not.

Looking back on it, the weeks following my surgery were probably some of the darkest of my life....both mentally and physically.

It had been awhile since I had had any kind of major surgery, but I figured that it couldn't be that bad. And I'd heard from many people that the surgery was the least worrisome part of the whole cancer process. So I went into surgery pretty optimistic.

I also went into surgery with the knowledge that I had a great surgeon and a great plastic surgeon. After shopping around for good doctors (a process that was much more stressful that actually having cancer), I ended up with a team out of the University of Colorado Anschutz Hospital in Denver. I was very confident in their abilities which is important when it comes to breast cancer surgery since there are so many different permutations and options for surgery.

Before you go into surgery, you have to know what kind of reconstruction, if any, you intend to have. Not that you can't change your mind later, but it makes things a lot easier if you can combine surgeries and get in any of the prep work necessary done all at one time.

I also had to decide if I was going to have a single mastectomy or a double mastectomy.

All of this seems like it wouldn't be that hard, but it is. There are lots of options. And no one tells you what you "should" do. They only tell you what you "need" to do. There seems to be a trend these days for women to have doubles so they "just don't have to worry about anything anymore." This I guess, is true. However, it also brings twice as much trauma and twice as much loss of sensation.

What I really needed to do was get that big honking tumor out of my boob. After chemo, it seemed like the tumor had shrunk a little. It was still big enough unfortunately that a full mastectomy, not a lumpectomy, was needed. After more tests, though, Dr. K and Dr. A determined that my tumor was far enough back in my chest that I could have a nipple-sparing mastectomy.

In a traditional mastectomy, breast tissue, skin, and nipple are all removed leaving a large scar across the front of your breast. If reconstruction is chosen, skin and/or muscle has to be taken from other places in the body and moved to the chest. Radiation complicates the reconstruction process since it basically cooks the skin and tissue that it irradiates and makes reconstruction much more problematic.

A nipple-sparing mastectomy, though, preserves the breast skin and nipple even though all the breast tissue is removed. The scar I have goes beneath the breast - sort of where an underwire in a bra would go - and isn't really visible once it's healed. I guess this is because my tumor, despite being over 6 cm, was in a good location.

So I lucked out, really. I had been having nightmares about being a Frankenstein's monster and not being able to look at myself in the mirror.

Instead, I woke up after my surgery with the equivalent of a numb, deflated left breast. Not quite as bad as what I had originally imagined, but still not my ideal look. The outside was relatively intact, but all the insides had been taken out. Because I had decided to eventually have reconstruction, my plastic surgeon had placed a plastic tissue expander inside my breast tissue with a small amount of saline inside - so my left side wasn't entirely flat, but it was definitely deflated.

Because I had at least 2 lymph nodes that had shown signs of cancer in my PET scan, I also had about a 2 inch scar under my left armpit where they had removed 17 lymph nodes. Before this whole cancer process, I had never really thought much about what the lymphatic system does. In short, your lymphatic system is essential both both your circulatory and immune systems. It moves body products (like plasma, glucose, proteins, immune system cells, etc.) through your body. It also provides a response to trauma, bacteria, viruses, etc. that invade your body. In short, when you have a swelling response, that is your body sending lymph to the site of a problem. The lymphatic system helps to bring lymph back from the extremities to two major lymph nodes in your neck for it to be cleaned, processed, and sent out again to the rest of your body.

So if you have cancer in your lymph nodes there is a higher chance that you cancer can spread to other parts of your body. Therefore, it's important to get rid of any of them that might have that cancer....as well as those that are a little further down the line that might have microcancer cells that have moved down from the tumor.

Removing lymph nodes brings problems, though, so they don't like to do it if they don't have to. While I was in my surgery, Dr. K did a sentinal node biopsy. Essentially, they find the node that drains directly from the tumor and they biopsy it to see if it has cancer. Mine came up positive, so they did a full axillary lymph node dissection. Thus, 17 nodes gone. Apparently they all come out in one big ball of goop.

Removal of lymph nodes means that your body could potentially have problems draining lymph from the affected area. This is called lymphadema, and it can strike at any time -sometimes years and years after surgery. For me it could cause my left arm to swell up and could be caused by a cut, a bee sting, injury, hot water (hot tub!), or maybe even nothing at all.

So between the removal of the breast tissue and the removal of the lymph nodes, I had a good amount of cutting done in my body that severed a bunch of nerves. At this point, I have no feeling in my left breast, in most of my armpit, and in the back of my upper arm. The feeling is not expected to return. I also couldn't really move my left arm due to all the tissue damage underneath. On the bright side, I no longer sweat from my left armpit, so I'll save a little money on deodorant. :)

After all the cutting, I was in quite a bit of pain for about 4 weeks....especially when I was trying to go from standing to sitting to laying down and back. I also came out of surgery with a pretty bad cough from the intubation they had to do so I could breathe during surgery. This wouldn't have been bad except that when you cough you use all your core muscles which in my case were severely traumatized. The cough was probably the worst physical part of the recovery.

So physically I was dealing with the loss of my breast, disfigurement, pain, loss of movement in my left arm, loss of feeling in part of my body, and the threat of lymphadema. I still had no hair, and felt pretty darn depressed from the weight I had gained from chemo and steroids. Oh, and on top of it all, they put tubes into the surgery site that drain unwanted blood and fluids out of you through suction into gross little grenade shapes bulbs. You have to measure the amount of yucky stuff coming out of you daily until you get to the right amount so the drains can be removed. They hurt, they're gross, and they make it really hard to shower, use the bathroom, or move. It was awesome.

Mentally, I was dealing with all of this PLUS the fact that my lifestyle may have to change for the rest of my life.....AND the fact that I have no way of knowing if this cancer is going to come back in the future and I might have to go through all of this again.

As I said, this was a pretty dark time for me.

I felt the farthest from strong, courageous, brave (and whatever other adjectives people were throwing at me) that I have ever been in my life. I felt defeated. I felt sad. I felt like I had no control over my life. I did not feel like things were going to be "fine" as everyone kept telling me. I did not feel like "I'd forget about all of this once I felt better".

But no one likes a whiner. So, for the most part, I tried to hold myself together.

After about two weeks, I was pretty much back on my feet movement wise. Getting up and down was still hard, and I was on pain killers so I couldn't really drive. I also wasn't very comfortable sleeping. As a side sleeper, having to sleep on my back was very uncomfortable. I couldn't sleep on the hurt side for obvious reasons. And I couldn't sleep on the unhurt side because gravity is a bitch. With limited arm movement, getting dressed is pretty uncomfortable, too. And the drains had to be hidden under bulky clothing because they're gross and no one wants to see that.

But eventually things got a little better. The drains came out (kind of like watching a tape worm being pulled out of someone....those suckers just kept coming!) leaving round little scars. My cough eventually went away (after about 4 weeks), and my core muscles started healing so I could move with less pain.

I went back to work even though I shouldn't have. I wasn't ready. Mentally or physically. Work did provide a little bit of a distraction, but it also made me keenly aware of the physical side of my recovery every step of the way. Having to pretend like everything is ok when you're in pain and have constant reminders in the mirror that you've been disfigured is tough.

Because I had radiation and eventually reconstruction ahead of me, I also started the process of filling up my tissue expander as soon as my incisions were healed. This sucked.

A tissue expander is a temporary implant with a one way valve that can be filled slowly with saline in order to get your breast skin to the proper size. Eventually, the tissue expander is replaced with an implant or with natural body tissue. In a normal body, your breast tissue is on top of your pectoral muscle. However, in order for the body to hold a tissue expander in place, the expander has to be placed under the pectoral muscle. This feels really weird. What this also means is that as the tissue expander is filled your muscle gets stretched. In addition to feeling weird, this is also really painful.

Many women fill their expanders slowly over a few months with about 40 cc's of saline at a time. Because I was at a higher risk of cancer recurrence due to my lymph nodes being involved, I had to get on with my radiation treatments pretty quickly. This meant that I needed to get my expander filled to the right amount as soon as possible. My expander had between 60-80 cc's added every week (sometimes twice a week) for 4 weeks so I could get up to size in time. (Once you start radiation, your skin pretty much gets cooked making it more fragile and tight so it's hard to expand it.)

What this meant was that even as I was recovering from surgery, I was also putting myself through incredibly painful procedures every week. More than once, I found myself sitting in bed crying from the constant pain. The only thing that got me through it was the knowledge that the pain had an end date.

By the time I started radiation I had been through physical therapy so I could get my arm above my head for treatment with minimal pain and my left breast was the size and hardness of a softball. I tried to pretend like I was doing "just fine". Sometimes I was; sometimes I wasn't. I would have been really easy to stay in that dark place. And I'm pretty sure that if I hadn't had such incredible support all around me, I might have stayed there.

Mastectomy is not for beginners. But you don't really have a choice. You have to keep moving forward. So that's what I'm doing.