Hi,
I had my treatment 1.5 years ago. Mastectomy for ILC, radiotherapy (rather than clearance) for 3 positive sentinel nodes. No chemo, and on long term hormone therapy. I am 52.
I am still suffering significant mobility issues with my arm. I have swelling under my armpit and all along my sternum, which also feels very lumpy. Recently these areas have become quite painful, which restricts mobility even more and also wakes me up when I turn at night.
I had 6m of physio but they could not overcome the movement restriction and pain, so that ceased. I still do the full wack of post-surgery exercises, even though that also makes no difference at all.
I would like to know if this is normal, or if there is anything I should be worried about (cancer recurrence being the obvious concern). I went to a support group and asked if anyone else is suffering the same things, but I was the only one.
Other bit of info is that a recent CT scan showed ‘curvilinear ground glass opacity’ from chest wall to across the top of my lung. Waiting for follow up scan in a few months to confirm the oncologists opinion that this is just radiotherapy damage.
Thanks for any advice.
Hi Katone,
Is this Lymphoedema?
I get weekly manual lymphatic drainage massages from someone specifically trained to treat people who’ve had mastectomies so not your ordinary spa masseuse.
She also gave me this link for self-massage.
https://www.youtube.com/playlist?list=PLekVty32TyUmoDKIuzNUE3ppOuSzxn9hA
I had a seroma after my mastectomy and started developing small cording under arm so I went to the sauna 4 weeks post op. Something I always did regularly before. It really loosened up all my muscles, the cording disappeared and I could stretch and move my arm. Never did my exercises again. I returned once a week to the sauna and only stopped now I’ve started chemo.
My surgeon was fine with the sauna as it was dry heat and as long as I listened to my body while inside and he even wrote about it’s effectiveness in his letter to my GP.
Have you talked to anyone about a referal for Lymphoedema treatment and compression garment?
Just some suggestions but I’m not a specialist.
Good luck
Hello,
I’m sorry to read of your troubles, but I am echoing the previous reply re: lymphoedema? In my memory I recall a friend’s neighbour who was left with similar problems that you describe, and it impacted greatly on her day to day getting on with life.
There are referral places/clinics specifically for lymphoedema issues, maybe you are lucky enough to live in an area where somewhere is available to you? And hopefully a BCC Nurse can advise you further.
So sorry - wishing you better days.
Hello Katone
Thanks for your post. It’s understandable you want to know if having restricted movement, pain and swelling under your arm and sternum is normal following treatment for breast cancer.
Swelling and ongoing pain can sometimes happen after surgery and radiotherapy for breast cancer. However, as the swelling has continued, you may need to be seen and assessed by a lymphoedema specialist, as @healing24 and @Paulus suggest.
Lymphoedema is swelling caused by a build-up of fluid in the body’s tissues. It can occur as a result of damage to the lymphatic system, for example because of surgery or radiotherapy to the lymph nodes under the arm and surrounding area. You can talk to your treatment team about this and whether they think you may need to be referred. You can also let them know the area feels lumpy. The way lymphoedema is managed varies and will depend on the individual situation. It is important to first speak to a specialist before doing any type of massage to the area.
Restricted arm movement can also sometimes happen and may persist. This may be due a number of reasons, such as nerve damage or swelling after treatment. Although, your physiotherapy sessions have not helped it is important to try to continue with the post-surgery exercises to keep as much movement as possible.
You also mention you now have pain that wakes you up in the night when you turn. Ongoing pain and discomfort can develop some time after surgery and radiotherapy has finished. The previous link has suggestions on how to manage this. I wonder if your treatment team are aware that the areas affected have recently become quite painful which is further restricting your arm movement.
It’s important to be sure of causes of your symptoms in order to know how best to treat them. It sounds like you have had a recent CT scan which is being followed up in a few months to confirm radiotherapy damage. However, it may help to talk to your treatment team or breast care nurse again about your concerns and the best way your symptoms can be managed.
Our Someone Like Me service might be able to match you with a trained volunteer who may have had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Best wishes
Teresa
Breast Care Nurse
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