How to Handle Back Pain After Mastectomy and Reconstruction

Dealing with back pains after a mastectomy and breast reconstruction

So, in another episode of "what they didn't tell me before I had this treatment"... I'm going to let you in on my big secret. Well, one big secret. I live with a lot of back pain. And by a lot, I mean... a lot. My back spasms at irregular intervals. Sometimes I can go for days or even weeks with little to no pain. And then pow! My muscles are cramping and spasm-ing like crazy.

I don't think the pains come out of the blue. Usually I've done something... lifted too many heavy things, played too much with my guy, sat in front of the computer in one place for too long, too many days in a row (usually tilted at a bad angle)... and so forth.

I am very human in the way that I am inconsistently taking care of myself in "new normal".

When I had my mastectomy in January 2009, I thought that I would be getting my reconstructed breast a few weeks/months later. I initially wanted to go into surgery for my mastectomy and come out reconstructed. Basically go under anesthesia with two breasts and wake up... with two breasts (one reconstructed, the other natural).

But, thanks to the team of tumors that invaded my body... and the places that they chose to live like squatters in, I was encouraged to have radiation therapy after my mastectomy (and before my reconstruction) to be sure that the cancer cells were eradicated.

Radiation would have been detrimental to the newly constructed breast. So, I had to wait. The process ended up being a 10 month wait, living with one boob.

*insert screw face here*

If I tell you that it was uncomfortable to try to move about the world with one big ass boob and flat like the pavement on the other side... I still wouldn't be giving you the real deal about how effing awful it was for me.

You say you have one boob and then no boob? Chile...

It was bad. But I got through it.

I decided to have the TRAM Flap reconstruction procedure. I didn't want an implant. After 4 months of chemo and endless doctor visits and a mastectomy and radiation... I did not want to put something in my body. Not even an implant.

But I wanted a boob. I needed a boob - for my sanity. So I researched and discussed it with my surgeon and decided that a TRAM Flap would be great. This procedure takes your own body tissue from your abdomen and uses it to create a new breast. In 2009 it seemed like a great option. I learned about a DIEP procedure but couldn't find an available surgeon to do the surgery. I couldn't even get on the schedule of the local doctor at Georgetown Hospital to even discuss it. And I didn't have the desire to keep moving about the earth as a lopsided girl. Just wasn't going to work.

It was all about that TRAM flap

The TRAM Flap takes abdominal tissue and abdominal muscles to create the new breast. The surgery is intense... I was in surgery for 12 hours. TWELVE HOURS!

I was in the hospital for a few days, in intensive care for the first day or so and then in a regular room for a couple more days. I could barely walk when I got out. Barely walk. Keep in mind, your core - your abdominal muscles - do a lot of work for your body; keeping you upright, giving you the strength to move, to carry things, to lift things, etc.

For a time, I walked seriously curved over and I was off-balance. Majorly off-balance.

Prior to breast cancer, my breasts were pretty large. I wore a size 36H bra. Yes... that is an H! Ya girl had some nice ta-tas. LOL... if you're into big breasts that is. But I was off-balance because while I replaced the flat side of my chest with a newly reconstructed breast, it was not the same size as my natural breast.

Then it was all about being LOPSIDED!

One side of me was an H-cup. The other side of me was a D-cup. My new breast was about half the size of my old one. And my surgeon would not do the reduction for my natural breast for a few months. She felt that having both procedures at the same time would have been too much for my body. I was, after all, still recuperating from breast cancer treatment. I wasn't as strong as I used to be.

Eventually, I was reduced and my balance was better. (Not perfect because the natural breast wasn't reduced enough and I'm still lopsided - UGH - but its not as horrible as it was) Yet, I kept having back pains.

And after a lot of tests, my oncologist concluded that it was just arthritis and something I would have to learn to deal with. So... I did. Deal with it. Thank you tylenol and motrin (sometimes percocet) and thank you heating pad!

Your back hurts but you can't pop painkillers like candy... what do you do?

The list of can't do's and shouldn't do's is long

I started experiencing lymphedema symptoms after my radiation treatment, which meant new problematic side effects to cope with. I was told that there is no cure for lymphedema. My advice was to avoid lifting anything over 10 pounds with the affected arm, keep the arm covered/protected from insect bites and to wear a compression sleeve.

After the TRAM I was told to be careful with over-extending myself because my core is weaker now that some of the muscles have been moved. I'm also learning that hernias are possible and abdominal bulges are not uncommon for patients of TRAM flap procedures.

*sigh* All of this??? Damn.

I thought I was getting a new boobie with a side of tummy tuck for my 40th birthday. Perhaps I should have thought twice about that implant situation. Talk about a bad gift idea (and to myself no less).

So, here I am a few years later, my lymphedema is manageable but not great. I would like to go back to physical therapy and/or find a licensed lymphatic masseuse and physical therapist that can help me to reduce the size of my arm with that fancy machine they have and to wrap my arm weekly. The compression sleeves help but they aren't as effective (to me) as the bandages. It would also help if I regularly gave myself lymphatic massages. I have a great video... just need to take 20-30 minutes every few days and get it done.

My core is weak. I take the blame for that because I think I need to ignore the fearful stuff I was told and that I read online... and get into the work of working out. But I am afraid. I can't lift much on one side, my belly is weak and hell... I'm not that young anymore.

How to cope then?

This is where it all gets funny. When I was looking for answers to my back spasm problem... I discovered only a few options. Most of what I read basically said...

,,,yep, that's a side affect that happens to a lot of women. Yep, its awful and it sucks. Welp... you're alive though. *sucks teeth*

That's my interpretation anyway. #useless

I am ENTIRELY too tired of basically hearing/reading/being told that whatever my side effect complaint is... to just suck it up because I'm alive. Yes. I am alive. But can I get some quality of life concern happening too?

However, I did stumble across two suggestions for relief. The first suggestion was botox. Yep... the same botox that people put in their face so that they don't look old, can be used to stop my back muscles from doing the spasm dance.

Uh... I'll take HELL NO... for $1000 Alex.

We're not doing the botox thing. At least not now. The other suggestion seems more reasonable. Yoga.

From the reading that I've done... it seems that yoga is like the greatest thing in the world for me. Unfortunately, I am the clumsiest person I know... and picturing myself doing yoga seems well... hilarious and unproductive. Hilarity aside though... I will be using basic yoga moves to help get beyond this back issue. I'll keep you updated on the clumsy yoga chronicles.

To recap all that I've learned - that I didn't know before:

I had no idea that lymphedema was possible after my mastectomy. I was told that since I'm young it was not likely to happen to me. *insert screw face*
I was told that there is no cure and the best thing I can do for my lymphedema is not to lift heavy things and to rest my arm. I'm also supposed to sleep with it elevated to give the lymph fluid a chance to move back towards my trunk. *insert screw face* I sleep like a wild woman... that's never going to happen.
I wasn't told that removing my abdominal muscles for my reconstructed breast would affect my core strength (or give me crazy tummy spasms occasionally too). *insert screw face*
I wasn't told that hernias or abdominal bulges were a possibility either. *insert screw face*
I wasn't told that my quality of life after my mastectomy and reconstruction was going to be marginalized by the side effects that I cope with. *insert screw face*
I was told to be careful with exercise, but I wasn't told to look for low impact exercises that would be good for my body without putting too much stress on the parts that were weakened by surgeries. Yoga and swimming... coming right up! *insert screw face*
I wasn't told that because I was a younger woman, it was more likely that I would have pain problems after breast cancer surgery than my older pink ribbon sisters. *insert screw face*
I was told by my oncologist that over-consuming Tylenol would be a problem for my liver. However, I wasn't given an alternative plan of action to cope with or offset the pain. I rarely take Tylenol now, unless the pain has driven me to tears. But Tylenol works! LOL... so, I just don't take it around the clock like I used to. *insert screw face...again*

If you're experiencing back pains after your mastectomy or breast reconstruction... you are not alone sister. Not by a long shot. I've decided to try to bring yoga into my life. But there are other options dependent on what type of pain you're having. Take a look at the links I've shared below for some good information. And definitely talk to your doctor or medical team about your pain management.

That's all for now...

~Nic

Resources and information:

Komen Foundation - Breast Reconstruction information

Mayo Clinic - Information on pain after breast surgery

NY Times article - No easy choices for breast reconstruction

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