Neck, shoulder and back pain due to imbalance after single breast mastectomy

Custard

I would like to hear from anyone who is suffering from the above. I had my surgery in 2004 but over the past 3+ years I have endured excruciating pain, and undergone every medical test, physio plan etc known and the overwhelming advice is that my problem is the imbalance. Apparently the scapula is overworking on the L side (mastectomy side) and twists the spine.. hence all my woes.

The L breast weighed 1.5kgs (as per the pathology report) I am a D cup and it seems common sense to me that there is no way we can balance that up with either an external prosthesis which weighs around 350 gms, and I do not want an implant for the left side and a reduction for the right. I am seeing a surgeon in a few weeks regarding having the remaining breast removed... and have heard that many suffer.... please let me know as I feel this should be highlighted for those affected.

It may be that a great number are suffering in silence, or putting it down to "ageing changes" !

Take care everyone, and thanks- Mandy

Custard

For me the choice is now a simple one as the pain is unbearable and I am not wanting to stay on heavy duty painkillers. I want to enjoy my life and be busy but find this chronic pain is very debilitating.. and for the family too. I am sure I am not alone with this problem, and many of us do not want reconstruction and reduction.

If we were told this may be a problem for large breasted ladies, then we could make a more informed decision in the early stages of surgical treatment.

Afraser

I didn't realise the extent of my spinal imbalance until I got my prosthesis 12 months after my mastectomy. Then I got some back pain as my spine readjusted. My breast was 1.3 kilos, so I really should have twigged something would happen. Fortunately more than three years later I have had no further problems. My prosthesis however weighs considerably more than 350 gms, so I am presumably better balanced. I agree that advice would help, I seem to have been lucky that the supplier of my prosthesis, who was excellent, has anticipated the need for body balance not just looks. Some people with prostheses, particularly in tropical areas, complain about weight and heat, but the weight may also be a positive thing in regard to their backs. My sincere sympathies for the problem, chronic pain is no way to live, even if the only solution is another mastectomy.

primek

I've heard of a number of women who have experienced similar issues. There also are quite a lot that choose to remain flat and fabulous. @SoldierCrab you may be able to offer advise and direction to your group. It may take some time after surgery to be pain free as your body adjusts and you might need additional physio to help with that but I'm sure eventually things will improve. I had a bilateral with reconstruction. Going from an E to a DD. The weight of both implants are less than 1 boob so it's been awesome not having the issues I did with weight with my pre cancer boobs. Kath x

SoldierCrab

hi Mandy, 
I help run a group on facebook  - 

Breast Cancer & Beyond- No recon, Flat, foobs and alive Down Under (Aust)
This closed group is for anyone who has undergone a mastectomy and is now learning to live with 
 NO reconstruction, or chose to wear foobs.
did you choose not to have reconstruction? 
did you have to reverse your reconstruction? 
are you contemplating it?) 

Whatever the case, we would love to see you here 
Many of us can understand the day to day issues unique to living without reconstruction following mastectomy, in Australia. We can figure it out together.

So feel free to open up and have a vent or express yourselves in any way you need to! We do not judge or discriminate! We believe in embracing each other and accepting each other's differences! No matter what!

You need information about services or where to go for foobs etc just ask. 
https://www.facebook.com/groups/bcnoffaaduaustralia/

Mandy I lost 8kg the day of surgery from my breasts alone  I chose to have a double mastectomy right up and no reconstruction.... 
My back and neck love me for it I couldn't believe the difference after my body healed from surgery and chemo etc. 

you and anyone else is welcome to join the group. 
Alice 
Aka
Soldiercrab

Unicornkisses

Hi Mandy, for bigger breasted women a single mastectomy is definitely an issue.
I was a DD bordering on an E
I already knew going into a breast surgeon for the first time that this would be an issue as I already saw a chiro for twisted spine problems.
my surgeon also warned that it could be  problem.

As I saw it my options were a breast reduction and other side reconstruction or a bilateral mastectomy.
I have dense breasts and have had problems with mammograms and ultrasounds not picking up lumps so removing the worry of the 'supposedly' healthy breast was definitely an option for me.

As we thought originally that I only needed a lumpectomy, I opted for bilateral reduction with my lumpectomy on the right side. But then I always hated my big breasts and wanted them smaller anyway. To be able to have them both reduced in one op was great for me. I am now a C cup and I love it.

However I now have to have a right side mastectomy due to more advanced than expected pathology after that surgery so we are back to the original dilemma.

I am having an MRI to rule out any issues with the left breast.
If it comes back with any issues I am having a bilateral mastectomy.
I am going to put myself on the public list for reconstruction and make up my mind during the waiting time whether I want to go ahead with it.

I might well decide not to.

If the left breast is clear I am having a single mastectomy and probably a DIEP flap reconstruction in a year or so
(I have to have radiation so will have to wait and have been told I can't have implants)
I ride horses and already have an imbalance problem so for me being lopsided is not an option.

I had to see a psychologist through the Cancer Centre at the hospital to come to this clear point in my head, otherwise I was lost in the decision.
Perhaps that would help you.

Brenda5

It can be a bit of stress too. My shoulder and neck rising up to a headache had completely stopped in the week I had no appointments but the morning I visited the psych nurse it came back again. She told me it can be a stress thing and if bad, put heat packs on it. No appointments today and no sore shoulder and neck either.

Custard

I agree Brenda, I have noticed the reduction in pain level if the day is going well but it still is there to a degree. The twisting of my spine is tangible and I have developed a habit of shrugging the left shoulder... hope that stops lol!

By the way I googled "reduce back pain with single mastectomy" and our discussion came up, with my name (I have been on the BCNA online for over 10 years and that was the way we all started off), but with their help altered it to Custard today. Still Mandy in Launceston though HAHA!!

Brenda5

I only had a little breast removed so cannot relate to the weight loss issue on that side however I did go through a period of shoulder pain behind the scapula which was driving me barmy. My big son, about 180kg stood up behind my chair and gave me a massage in that area. He said he could feel like a knot there and while he was rough and it was painful he got right to the bottom of it and the pain went away.
 After that I started to replace some of the tasks of my main arm which is the no breast side with my other arm. Just easy things like lifting things down from shelves and stuff. I think you do have to get some development in the slack arm so you get a balance.
Also in sleeping, I have noticed since there is no breast to impede my laying on that side, my arm tends to over curve in sleeping. I tilt my pelvis so I am not putting pressure on the shoulder while sleeping. I also got a pillow top cover for my mattress which has helped my shoulder and hips a lot.
I massage myself in the breast less arm and side many times a day as it just seems to like tightening up by itself. I still get phantom stabbing pains in my chest which are fleeting but that shoulder is good now. 

Custard

Hi all, I have had my remaining breast removed and cannot believe the difference. After some physiotherapy to balance up the twisting spine, I am terrific. The weight was 1.5kgs, same as the original cancer Left breast, and within a few days the neck pain left quickly followed by the shoulder then back pains. The surgery was on 31 July and last weekend I went on a tour of caves in the NW of Tassie, down and up hundreds of steps, dodging stalagmites and stalagtites, and climbing ladders and I had NO ill effect at all!
I would encourage any woman who is suffering imbalance to chat to their doctors, and as a hint, all male medicos I dealt with were not supportive but the girls were!! I wrote a poem - 

Although you
were “identical” and part of a pair,

I always
preferred you, for comfort and usefulness

It wasn’t
hard to compare.

Not that
your pal was unattractive in anyway,

But you dear
left breast, was the one I wanted to stay.

 

Then after
feeding my two babies, with several bouts of mastitis

The years
flew and I was confronted with a nasty diagnosis.

You were
removed within a week and harsh treatments followed on

It took many
months (years) for my brain to feel we had won.

 

Happy events
and experiences followed through the sun filled days

But soon
that joy and fun times became a grey haze.

Chronic
excruciating pains occurred in neck, shoulder and back

Even my
groin was hurting and we all sensed this was something to attack.

 

Endless
tests, appointments, dollars and health professional plans

Resulted in
the only recommendation was to remedy that imbalance.

So your dear
twin, which by now was really tired

Was in the
line for me to say “You are fired”.

 

That in
itself caused many to have angst and worry

And loved
ones, for that I am sincerely sorry

But just one
week on, I know I should have done this years ago

My twisted
spine, caused by Right breast, has already started to straighten

And the
gnawing ache below my shoulder blade has flown!

 

Ah dear
breasts, I owe you much, but in the end you both let me down

In differing
circumstances,

Now I am
liberated, free from appendages and ready to face the world breastless.

 

 

The
strangest thing that you weighed the same, even after a gap of many years,

And as my body
aged and changed shape, you stayed true to your peer.

Life is
ahead with only normal “ageing changes”

There is a
smile on my face, a twinkle in my eye, watch out world, I am dangerous.

primek

Lovely. So glad you have noticed an improvement. 

majo

Hi Mandy I had my masectomy exactly 12 months ago  on my first visit back to my surgeon  he told me a lot of his big breasted ladies opted to have their second breast removed  because of backache , I put that on the back burner  but I see him Tuesday   so have started really thinking about it about and I am going to go with the other masectomy . Actually apart from the drain the,op wasn't bad at all .  Also it will have its advantages  no more poor shoulders it indented with bra straps  from holding big boobs up , no more chafing in the summer ,tops that fit  better,,  no more more mammograms, being able to choose a smaller size boob like I used to be , sounds good  by the way I am nearly 76 , majo 

Zoffiel

While  I miss my boobs, @majo, clothes fit better and it's nice to know that my buttons will stay done up. Good luck. Marg xx

Custard

Hi girls, well it is almost 4 months now and I am feeling terrific. Even my lower back pain (L3,4) has improved which was totally unexpected. I only wish doctors had suggested this as remedy five years ago, and did not have deaf ears to others in the same situation! Looking forward to 2018.. I have even bought a gorgeous Jantzen mastectomy swimsuit and walking heaps to tone the bod. Love to you all! Mandy

SoldierCrab

@Custard
 that is awesome to hear Mandy so glad it has been a good choice for you. 

Alice 

primek

@Custard Fantastic that it has improved so much.