One Year Post Bilateral Mastectomy

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I can’t believe it’s been a year since I had my bilateral mastectomy! That also means I am now one year cancer free. Woohoo!

I am so close to being completely finished with all my reconstruction, I just have my nipple tattoos to go, and the first sitting of that is booked in for early January. I’ve been excited to get to each step as I have gone along, and this is no different. It will be my first time getting any kind of tattoo, so another new experience for me.

Since my last update when the bandages were removed after my nipple reconstruction, my nipples have healed up nicely. They were huge at first, but shrunk slowly over the next few weeks to become a lot smaller. Now they are just a small bump, and I am happy with how they have turned out. They are big enough to give the idea that there is a nipple there, but not so huge that they are obvious in all my clothes. I can sometimes get away with not wearing a bra without them looking too obvious.

Talking about bras, I went and got myself professionally fitted for the first time since this all started, and I have to say I was shocked! While I don’t feel a whole lot bigger than what I was, I have gone up two or three sizes. I put this down to my boobs now being quite “solid”. They don’t squish down to nothing like they used to. They also don’t sag, so where they are is where they stay.

Unfortunately now because I have quite a small frame I am no longer in a size that I can easily pick up at Target for a few dollars, I’m going to have to go somewhere a little more specialised.

The scarring around my nipples has stayed quite red. It’s not sore, raised nor hard, just red. I’m not sure if this is due my pale skin tone – my other incisions have not had this same redness. I’m just really hoping that it will fade more over the next month because I have heard that sometimes tattooists will not do the tattoos if they are worried about the scars.

One Year
One year today since my DMX. Not perfect, but I can live with this.

Physically I can do everything I was doing before this all started. I have no residual pain, stiffness or aching. I’m still working at getting all my strength back in my pectoral muscles, but I am pretty close now. I have a lot of my fitness back; it’s no issue for me to hike 20km or to run for an hour.

It’s not quite one year since I started taking Tamoxifen, but it’s getting close. Thankfully I still don’t have any severe side effects, just a few small niggly things that may be side effects, may be just aging, or could be something entirely different. I will do an update post just on Tamoxifen soon.

Recently I have changed my diet even more. I was not eating meat, but now I have cut out dairy and eggs too, becoming completely plant based. While not too many studies show decisively that a plant based diet can beat cancer, there are quite a few studies that suggest it’s at least better than a diet with animal products. If you want to have a look at a couple of sources, have a look at these:

I have a much better cleavage in a bikini now though! (And no, I don’t care if my scars show)

Going forward, apart from the tattooing, I am done. I don’t see my surgeon again until September next year for my annual check on the implants. I won’t have any screening done (such as mammogram, ultrasound or MRI) because my cancer was deemed so early and totally removed. The only time I get more screening is if I become symptomatic again.

When I look back over the last year everything seems a bit surreal. I still can’t quite believe I’ve had cancer, removed my boobs and now have implants for the rest of my life. I see the struggles that others have gone through while walking the same path, and I feel like it has been too easy for me.

I hesitate to use the term “survivors guilt”, because I don’t feel guilty, but I do feel like I almost don’t qualify as a breast cancer survivor as my experience has been so much easier than other people. I haven’t had chemo nor radiation, I’ve not had any pain, not a single complication, I’ve been able to manage my worry and stress, and I am quite happy with the results of my reconstruction.

We all know from everything we read, watch and see in the media, that breast cancer is meant to be hard, but to me it hasn’t been. I have been surrounded by nothing less that total support from my friends and family, and not once have I been looked at with pity or treated as an invalid. I love that others are curious and want to learn about my experience – if my story can help them, I am more than happy to be open and share everything I have learned.

Cancer has changed me though. I think I am a stronger person for the experience. I know now that I can be tested and survive, flourish even. I focus a lot now on the power of thinking positive and consciously stopping the negative thoughts taking over. Oh, every day I still think about cancer hundreds of times, and I will always carry the worry of it coming back, but I’ve found a place where I am okay with those thoughts and they don’t run my life.

I think I’ve also become even more intolerant to (for want of a better word) bullshit! I was never one to conform to the norm before, but even more now I am living the life I want to lead. Take me or leave me, I will be okay either way! I am better too at “not sweating the small stuff”. I don’t know if it’s because my life is a lot simpler or if I have truely learned to deal with things better.

Celebrating one year cancer free with a rare glass of bubbles

I can’t let this go without a brief mention of Covid-19. In a kind of weird way, it made life easier on both accounts to be dealing with Covid-19 and breast cancer at the same time. While this is definitely not the case for those who have had chemo and therefore their immunity is suppressed, for me it meant it was easy to stay home, rest and recover as well as I could.

I didn’t have to worry about social outings or all those extra things that I might have been expected to do to in a normal year. I’ve had two surgeries during Covid, but luckily here in South Australia our cases have been exceptionally low, so while of course there have been precautions in place and some things have changed, it wasn’t too bad.

So now, it’s onwards and upwards! I’ve ticked off that first year of being cancer free, let’s hope for many more!

Want to read more of my story? Here are some of the key posts

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  1. Josie, I have to thank you for being so open and sharing your story. My journey started in July of 2020 when I was diagnosed with DCIS, originally in one breast and then both following an MRI biopsy. I had triple lumpectomies and similar to you, they did not achieve a clean margin on any of the 3 areas. My surgeon strongly recommended a bilateral mastectomy. It was a tough decision but I knew I had to do it. Mine was done Dec. 15th. They were able to do one implant, but had to do a tissue expander on one side. I have one more fill on that side before the final surgery and my plastic surgeon has recommended we swap the existing implant for a slightly different size based on how it has settled. Your descriptions of pain levels and progress have greatly mirrored mine. I reread your section on the swap surgery today and it gives me great comfort going into this next phase. I’m anxious to hear about the tattoo process, as the nipple reconstruction decisions are next on my radar. Thank you so much for being so open and honest about your experience. It has helped more than you know. Best wishes for continued success in your journey.

    1. Thank you Joyce. I will be putting something up in the next week or two about the nipple tattoo process. Good luck with your continued treatment.

  2. I had my nipple reconstruction almost 4 weeks ago and they are HUGE! When you said yours were huge, how big were they? They look perfect now.

    1. They would have been sticking out almost a centimetre I would say! Not a pretty sight for of sutures too 🙂

  3. Thank you for sharing your story. I also got cancer during Covid and didn’t need to do chemo or radiation. I only had one (34G) breast removed, but after 16 months, I am finally starting reconstruction. You look great!

  4. Thanks for this amazing blog as I am in the “reading, reading, reading, waiting” game right now. I am really just starting my journey. Regular mammogram in late Feb 2024, abnormal results, diagnostic mammogram April, biopsy in May. I have invasive carcinoma with lobular and ductal features in my left breast. I can’t bear the thought of leaving potential bad cells behind so I am having a double mastectomy with possible direct to implant but probably expanders on 7/15 so surgery is coming up fast. All 4 doctors I have seen have encouraged lumpectomy but I can’t get my head around that. I am curious to compare my US surgical experience with your Aussie one. I have been told that I will prob have one night in hospital. Here in the US that protocol has changed post Covid because of hospital bed availability during the pandemic. Most Surgeries during Covid were done as outpatient. I understand but it blows my mind that going home might be standard procedure. Thanks for being so open and for all the good info. All the best.

    1. Thanks Vicki, I’m glad I can help. It really does make this all worthwhile for me.

      I often get questions about DMX vs Lumpectomy and I always say it’s about which fear is bigger: recurrence or losing your boobs. For me (and you) it’s recurrence, and our mental health is just as important as our physical health.

      Good luck with your surgery. I promise it’s not as bad as we imagine beforehand.

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