Two Years Post Bilateral Mastectomy

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Another year has past and I am now two years post bilateral mastectomy – which also means I am two years cancer free. Yay!

I want to keep doing these yearly updates because I remember when I first started looking for photos and information from people who had been through a bilateral mastectomy. There were lots of photos during surgery, and a few just after, but I found it really difficult to find photos or information showing things at two years, five years and beyond. I wanted to see what a reconstruction looked like down the track, as scars fade and things settle.

During this year I had my nipple tattoos done to finish off my reconstruction. I had them done by Aleisha of Pink Lotus Tattoo, who I highly recommend if you are in Adelaide. (Check out her great range of temporary nipple tattoos too which can be ordered online!)

The process involves two sittings, each around an hour long. The first sitting build up the base colour, and the second sitting reinforces it and adds in all of the 3D details like the shadows under the nipple and Montgomery Glands on the areola.

Nipple tattoos are perhaps a little more expensive than what you imagine. Some are covered by private health funds here in Australia, but these are usually the tattoos that are done by cosmetic tattooists associated with hospitals or surgeons’ offices.

This might seem like a good option because you will not be paying as much, but cosmetic tattoos tend to fade, and you will find yourself going back year after year to have them retouched. By paying more and getting a “real” tattoo, you will not have to go back every couple of years.

Having said all that, I think now, looking at these photos, I will possibly go back and get a touch up done in the next year. I don’t notice how patchy they look normally, but the photos show it, particularly in the different light I used for these (to show how the scars look)

My second session was in February, so I have had plenty of time for my tattoos to settle. I almost didn’t bother with nipple reconstruction and tattoos, but my surgeon insisted I would feel a whole lot more “finished” once they were done, and I have to admit, he was right.

Over the two years I have regained a little feeling in my breasts. Slowly the nub area has receded, so I have all my feeling under my arm where the lymph nodes removed and around the edges and cleavage areas. It’s just the centre area I can’t really feel.

There is something there though – I can feel it if I stick something sharp into myself, (I tested!) but I can’t feel light touch. I’m guessing this is how it’s going to stay, but who knows, maybe next year I’ll be even more improved.

I don’t have any pain or aches or weird feelings in my breasts. To me they are back to being like they were before cancer – something on the front of my chest I don’t think about a lot.

While I was never scared to look at myself in the mirror, I would have those occasional moments of catching a glimpse and on seeing no nipples, this whole breast cancer palaver would come front of mind. Now my subconscious doesn’t see anything weird, so unless I make a point of thinking about it, a fleeting glimpse of my boobs does not bring it to mind.

I had my annual check up with my surgeon in September. He’s not really checking me for cancer (although he did feel for lumps), that’s more my job throughout the year. Instead he is checking the integrity of the implants and for things like capsular contraction.

He had not seen my nipple tattoos, and was really impressed with the final results. He had recommended Aleisha to me (I had already discovered her online though) and he once again praised her work. He took photos again to add to my file.

The last thing he did was to give me the prescription for my next twelve months of Tamoxifen. It’s incredible to think I am almost already through two years of taking it (my anniversary is actually 24th December. What a Christmas present I will have in 2024!).

Talking about Tamoxifen, two years down, three to go, and I have gotten through another year without too many side effects. I have many small things that I wonder if Tamoxifen is causing or exacerbating, but they could also be put down to simply ageing, so I couldn’t be sure. Things like my eyesight starting to deteriorate quickly so I am going to need reading glasses soon, my skin seeming to be so much older and the arthritis in my hands seeming so much worse in the cold.

I am certainly feeling warmer at night I think. I am having hot flashes, but only after I have woken up in the middle of the night and gone to get a drink or gone to the toilet. After I lay down I will feel hot, but I don’t have any sweating or a raised heartbeat like to many other people report.

This happens at most once a night, and probably 2-3 times a week, so I can’t complain about it too much. In fact, since I am normally always freezing cold, it’s a nice relief for a few minutes! It will be interesting to see how I go as we go into summer.

Another weird side effect I think I am having is even more sun sensitivity. I am pale skinned and get sunburned easily at the best of times, but I have noticed this year as we go into summer that I am particularly bad.

I talked to my skin specialist (I get checked yearly for melanoma since my Dad has stage four and I have inherited his skin!) about how I seemed to be getting sunburned even through sunblock and clothing on mild days, and she confirmed that it could be a side effect of the Tamoxifen! Great, just the side effect I need when I am already at high risk!

I have also noticed that if I really push myself with long days, a lot of work and probably some travel, I get really fatigued – one of the most common side effects of Tamoxifen. I don’t just mean a little tired, I mean completely exhausted! On a recent camping trip, the last three days of nineteen days straight travelling & working, I climbed into my tent for a little rest at about 6:30pm – and didn’t wake up again for twelve hours!

That was only the tip of the iceberg though, it actually took me about three more days after that before I stopped experiencing that “hitting the wall” feeling in the middle of the afternoon. I am trying to be more aware of not pushing myself so hard so I don’t get to that stage in the future.

So how do I feel about my boobs after two years? It’s weird, I actually don’t feel any different about them than I did before breast cancer. They are simply there. They are certainly not perfect, what with the scars, being a little misshapen in places and with not much feeling, but I don’t feel bad about that.

I still put Bio Oil on my scars every day. I don’t massage the scars like I did for the first twelve months, just rub it on like any normal lotion. I imagine I will probably keep doing this for at least the next year.

The good parts are that I have cleavage for the first time in my life, and they are no longer saggy. I can get away with not wearing a bra if I don’t want to – although I usually do wear one, mostly out of habit I think.

As to what type of bra I wear – against common recommendations, my everyday bras are again underwire. That’s what I have always worn and I am comfortable wearing them again. My surgeon never advised me not to wear them. The reason given to avoid underwires is often a worry that the wires will dig into an area and not be felt because it is numb. This doesn’t concern me because I have enough feeling in those areas to know.

For hiking/walking/light exercise I am still wearing the Amoena compression bra that I bought after exchange surgery. (You can see it here). Even after 18 months (worn 24/7 for the first 4) these bras are holding up quite well. I am starting to think I need to go out and buy proper sports bras now, so I will do that sometime soon.

At night I wear a soft bra from Target (the Australian version) I bought between my DMX and exchange. I don’t have to wear a bra at hight, and sometimes I don’t, I just like to think that the implants are being held a little more in place while I sleep.

When sleeping, I continue to sleep in my favourite position – on my stomach! I don’t have any issues with sleeping that way at all (apart from the irrational worry about squishing my implants lol).

Talking about irrational worries, any cancer survivor will tell you that the thoughts about recurrence never go away – and it’s that way with me too. Every little ache and pain brings on the worry. Luckily I am able to quench these thoughts fairly quickly and they don’t play on my mind.

I did have a few days of back ache a couple of weeks ago that particularly got me thinking – then my rational brain would kick in “You’ve had back pain all your life (I have slight scoliosis), you’ve been working twelve hours a day slumped in a desk chair in front of your computer, you just did two five-hour days tensed up in the drivers seat out on the highways – no wonder your back hurts!”

So all in all, it’s been a good year, I’m moving forward after all the surgeries and getting on with life. It almost seems like a bad dream now, but I have the scars to prove it wasn’t!

So if you are in the middle of this all right now, please know it will get better. While I have to admit not everyone has the results I have had, also know that there are certainly people who come out the other side only minimally affected – and that could be you too!

Want to read more of my story? Try these posts

• My Bilateral Mastectomy with Tissue Expanders
• Nipple Reconstruction – The Decision & The Procedure
• Bilateral Mastectomy Pictures

For some breast cancer information, click through to these posts

• What to Take to Hospital for Breast Surgery
• Tips for Coping with Breast Cancer
• Ten Questions to Ask Your Doctor After a Breast Cancer Diagnosis

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