What to Watch for After a Mastectomy or Bilateral Mastectomy

Doctor showing patient how to do a breast exam
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If you have recently had a mastectomy orbilateral mastectomy, you need to be aware of certain situations that can occur after having a breast or breasts removed. Being aware can help you cope with how your body feels and knowing when you need to seek advice or be seen by your surgeon.

There will be numbness in the surgical area; it may last for quite some time. 

Watch for any signs of infection, such as odor, swelling, oozing or pain. You need to be seen, as soon as possible, by your breast surgeon, if any of these symptoms occur. If you have had immediate reconstruction following your mastectomy or bilateral mastectomy, you need to also make your plastic surgeon aware of your symptoms.

Phantom Breast Pain: Many women speak of what is frequently called phantom breast pain, which is a feeling of pain experienced in what was the area from which the breast was removed. Phantom breast pain happens following a mastectomy just as phantom pain occurs after a limb amputation. The explanation medical science gives for this phenomenon is that the brain is continuing to send signals to the nerves in the breast area that were cut during surgery, even when the breast is not there anymore.

Following my bilateral mastectomy, I experienced phantom pain where my right breast used to be. Seven years later, I occasionally still get a feeling of being pinched from the inside in that same area.

Phantom breast pain is often described as: Pain and discomfort, a pinching sensation, throbbing, a feeling of pins and needles, a tingling or burning sensation.

If you have any of these symptoms, don’t self-diagnose yourself as having phantom breast pain; call your surgeon and make him or her aware of what you are experiencing. Be ready to answer whether these symptoms are transient, and if they are interfering with your ability to sleep, self care, or are making routine activities difficult to do.

Lymphedema: We have all noticed women wearing what looks like a tight sleeve on her arm. It is called a compression sleeve. Women wearing these sleeves have a condition called lymphedema, which is swelling of the soft tissues caused by a build-up of lymph fluid. This type of swelling can occur in the hand, arm, chest, or back on the side of your body where lymph nodes were removed by breast cancer surgery or damaged by radiation therapy.

What you need to know about lymphedema:

  • Lymphedema can occur soon after surgery. Be sure to inform your surgeon if you have any signs of swelling in your hand, arm or the trunk of your body.
  • Sometimes, lymphedema can last for years.
  • Lymphedema can show up months or years after cancer treatment is over.
  • Lymphedema might develop after an insect bite, minor injury, or burn on the arm where lymph nodes were removed or damaged.
  • Lymphedema can cause pain and other problems. Many women find it helpful to continue to see a physical therapist or physician who specializes in rehabilitation and that has extensive training in lymphedema management.

Since Lymphedema can happen days, months, or years following breast cancer treatment, it is so important to take steps to prevent lymphedema such as:

  • Avoiding anything that irritates the skin, and caring for hangnails and torn cuticles immediately.
  • Don’t wear tight-fitting clothing or jewelry.
  • Do not use steam rooms, whirlpools, saunas, or take very hot baths.
  • No sunbathing
  • Don’t take injections, have your blood drawn or have blood pressure taken on your affected arm. If you have had a bilateral mastectomy, speak with your surgeon about what parts of the body can safely be used for these procedures. For example, my surgeon recommended that I have all bloods drawn from my right hand in the future, as fewer lymph nodes were removed on my right side.
  • Know that playing tennis, golf and racquetball, as well as bowling are considered risky.
  • Avoid wear heavy shoulder bags.
  • The National Lymphedema Network recommends avoiding lifting heavy packages or objects such as grocery bags weighing more than 8 pounds. Heavy lifting of furniture or any other dead weight is not a good idea.

If you have reconstruction, you need to make your plastic surgeon aware of any pain or swelling you are experiencing.

Exercise: Wanting to get back the routine you had before surgery is only natural. However, you need to consult your surgeon and your plastic surgeon, if you had reconstruction, as to when you can begin exercising again.They will need to sign off on what exercises are appropriate while you are healing. You can ask for a referral to a Certified Cancer Exercise Specialist.

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