Lymph node removal - side effects

I am booked to have a right side mastectomy and lymph node clearance on 19th December.

Does hte fact that I have to have all the lymph nodes removed mean that I will be likely to have to have chemo.

I have ILBC, ER+ PR+ HER negative.

I’m also very concerned about some of the possible side effects of surgery that were outlined when I was consented for surgery, not just the lymphodema, but other things, such as a winged scapular, permanent loss of range of movement in the shoulder (I have had frozen shoulder for nearly two years, and it has been awful), nerve damage and so on. I know the latter two are rare, but how do you cope if it happens to you?

Of course, my mind has gone immediately to the darkest place, but I can’t stop it.

Thanks in advance for your help

Karen

Hello casey4jc

Thank you for your post. It is understandable to ask whether you will be likely to have chemotherapy following mastectomy and lymph node removal.

Whether you are offered chemotherapy treatment depends on a number of factors including the grade, size, stage of the cancer, whether the lymph nodes are affected. This will be something your treatment team will discuss with you. It may be worthwhile talking through whether chemotherapy is likely with your treatment team or breast care nurse as they know about your individual pathology results so far. You may find our information on pathology here helpful. It explains about the decisions that are taken by your team when offering different treatments for breast cancer. An individual’s medical history and any other health conditions are also taken into consideration.

Your specialist may use a computer programme such as NHS Predict to estimate what benefit might be expected from treatments such as chemotherapy or hormone therapy. This programme uses individual information about the person and their breast cancer alongside data from large research studies. Sometimes it’s very clear that someone may benefit from having chemotherapy. But in other situations, it may be less clear. If this is the case, the doctor will often leave the decision to the individual.

Sometimes the Oncotype DX test may be considered for people whose breast cancer affects one to three lymph nodes under the arm if the benefit of chemotherapy for you is less clear.

It is natural to feel concerned about the potential side effects following lymph node removal. Side effects such as lymphoedema which is swelling caused by a build-up of lymph fluid along with other side effects can feel very worrying. Lymphoedema can happen as a result of damage to the lymphatic system following surgery and/or radiotherapy to the breast or armpit (axilla). Other risk factors include being overweight and infection in the arm or hand.

It’s not clear why some people develop lymphoedema and others do not but lymphoedema can develop soon after treatment or may occur many years later.

Symptoms of lymphoedema include swelling in the arm, hand, fingers, breast, or chest wall on the side of the body where you had your surgery or radiotherapy. The arm can feel tight and uncomfortable, and the skin can become dry.

There are ways in which to help reduce the risk of lymphoedema developing so do talk this through with your breast care nurse and maybe ask if you could speak with a physiotherapist about the other problems you are worried about before your up-and-coming surgery. By talking through any anxieties and worries before, during and after breast cancer treatment it may help you to cope.

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s 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 to your concerns, talk things through and signpost you to more support and information. 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

Helen

Breast Care Nurse

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