My Double Mastectomy w/ No Recon and Active Lifestyle

LoJo100

This is my first post, and I plan to become more active on the boards. They have been so helpful for me!

Not sure where to put this, so Mods, if it should be moved, let me know. I've been lurking for some time, and had a hard time finding a write-up of experiences with a double mastectomy with no recon, and trying to navigate getting back to the active lifestyle I had before all of this. So, I thought I'd share my story, so far.

I was diagnosed on April 24th, and was in surgery by May 25th. I even got to take a family trip up to the PNW and Canada where I did as much hiking as possible knowing I'd be out of the hiking game for some time after the surgery.

I was nervous, only because I'd never had surgery, but my entire team was incredible and the day of they put my mind at ease and the surgery went very well.

I spent one night in the hospital, had two drains (one on each side) and did do a little walk in the hallways the morning after the surgery. But, it was clear that this was going to be a longer game to get back to my pre-surgery hiking (4-6 mile hikes with elevation gain 800-1500', 3-4 times a week).

The Dr. discharged me and she didn't want me to do any stretches to give my lymph system a chance to heal. No lifting anything over 5 pounds and not pushing or pulling of any kind. I adheare to this regiment, reluctantly, but I trusted her, and I'm glad I did.

I did start taking walks around the block (.25-.5 miles, depending on how I felt) most days. I was slow, slow, slow but it did feel good to get outside and move a bit. The most pain I had was the rib cage that was now exposed for the first time since I was 11. The rib pain was real, and it whenI would stretch my chest out, it felt good and painful at the same time. The walking did help with this.

At the one-week post surgery appointment both drains came out. I did develop a seroma, but it wasn't painful or in the way, and has decreased in size consistently. It's almost gone at this point.

After the one-week appointment, she still didn't want me doing much as far as exercises, just small movements to lift my arms (but no climbing up the wall). Washing my hair was exercise enough during the first shower!

At week two, I saw the Dr. and at that point I was cleared to do exercises to bring ROM back. Wishing two weeks (4 weeks post-surgery), I had very good ROM. I met with a friend who had taught PT and she took me through a ton of great stretches, which increased my ROM to ~95% of pre-surgery ROM. This was by week 6 post surgery. I was surprised, and very thankful. I didn't know if no exercising for 1-2 weeks at the beginning was going to end up being a problem. Luckily, it wasn't.

I returned to work a little over 2 weeks post surgery. I started by doing 4 hour day, then up to 6-7 hours and leaving early to take a nap every day and then work a little from home. I've kept this schedule through chemo, with a day off on my fatigue day.

I started chemo on June 30th, which was 5 weeks post surgery (4 rounds of TC). So, I had no idea what to expect as far as SE's and my activity level going above a nice walk in the neighborhood. I started walking 2 miles every day starting week 3 post surgery, and the only time I decreased it was on my big fatigue day after my first round of chemo, so I only did .5 miles that day, but hey, it was something and did help the fatigue!

At week 7 (last week), to the day, I took my first real hike (4 miles, 1000' of elevation gain). I was on the upswing from chemo, and my upper body felt good and ROM was great. So, I put on my hiking boots and grabbed poles (so I could make sure my arms were up higher and less prone to lymphedema, which I have had no signs of thus far). My friend knew I may need to bail out at any point. But, I felt good enough to get to the top of the mountain, which shocked me!

I did a second hike this week two days before infusion #2 (3.8 miles, 800' elevation gain) and still felt good. Had my 2nd infusion today, so won't be back to hiking for 10 days or so, but if not for the chemo, I'd be back to my regular hiking and activity schedule, for sure!

I am very happy with my no-recon choice, especially after the first hike. It definitely was the right choice for me, and sped up the healing process. I do wear a prosthetics at work and even my sports bra has little inserts to create a look, and I am very happy with all of it. Thankfully.

I still have days that aren't great as far as energy level, mostly due to chemo, but I also know that I'm still healing from the surgery. I give myself the right to rest right now and try very hard to listen to my body so I don't overdo it too much. But when I'm able to get outside and into nature, I do it and it is so great!

I will do radiation after the chemo, so we'll see how it plays out during that time. I plan to continue my current approach.

I hope this is helpful to some of you who are wondering what a timeline might look like if you've chosen a double with no-recon and you're hoping to get back to previous activity levels.

See you around the boards! Thanks to everyone who has shared their story. It has been extremely helpful as I navigate this new world.

ksusan

Thanks, LoJo, and welcome. I had BMX without recon. I also adhered to recommendations about limiting lifting and stretching, but still walked every day. I gradually was allowed to work on ROM, and my only issue in this regard has been a little cording. In addition, my balance is off since surgery, so I have to watch my step. I walked (and Zumbaed) 2016 miles in 2016, and I'm on track for 2017 this year.

Wishing you continued luck!

Moderators

Welcome, Lojo, and thank you for sharing your story! We look forward to seeing you on the boards!

The Mods

LoJo100

Hi ksusan!

Thanks for sharing your story and your current plan to stay active! That is impressive (2016 miles in 2016 and on pace for 2017 this year!). Definitely gives me motivation to keep moving and keep working on ROM.

I had some balance things, as well, but they seem to be diminishing. I have noticed that when I put on my foobs, it lessens. I wonder if somehow my brain sees something there and it handles it differently. Hard to say.

Enjoy your walking and Zumbaing!

ksusan

Interesting idea. I'm not wearing foobs, which might be a good experiment.

LoJo100

I'm using foam inserts and they are comfortable and light. I like them for going out. I go flat around the house and when running errands a lot of the time. My Coobie bra is what I wear when exercisong or hiking. It has small foam cups and is very comfortable. I like a little compression when I'm exercising an the Coobie bra works well for this.