Breast cancer survivors might not be hearing the full story about their recovery from their Breast Surgeon, especially in regards to oncology rehab therapy available to manage common impairments: scars and adhesions and limited arm movement.
In Australia, people who have surgery to remove cancerous tissue in the breast, rely heavily on their surgeon to provide a life saving surgical procedure AND to have reasonable consideration for their future cosmetic and functional outcomes. But there can be big differences in what "good" or dare I say "normal" outcomes are.
The figures on post breast cancer side effects have not changed over the last 8 years: at least 50% of women, in Australia are experiencing at least one "adverse" side effect years after surgery, which means these people are experiencing moderate to severe arm pain, numbness, reduced arm movement. And to be fair, these side- effects are following not just surgery, but chemo and radiotherapy.
Important conversations are missed
I saw Brenda* today, and she recalled her 12 month post surgical appointment: "the Breast Surgeon took no more than10 mins to review my progress. He visually checked the breast scar and claimed a great scar result. He didn't touch the scar, he didn't check my arm movement".
Brenda clearly remembers thinking "he sooooo does not have any idea about living with breast scars" and decided not to bother the Doctor with her concerns about daily stiffness, fluctuating pain and huge area of numbness at the side of her breast. So this meant there was no conversation about what conservative treatment was available to help with the side effects specific to the breast cancer surgery.
Thankfully Brenda was a nurse and had experience working with many great Doctors who had little awareness of rehab or post-acute care. Brenda wondered whether she, as a patient, may not be hearing the full story about her recovery and so started searching the internet to see if there was help for her side effects.
Choosing oncology scar/adhesion treatment with me was a long shot for Brenda, as she really had no clear feeling about what was really limiting her arm movement. She just knew it was harder to do the usual things at home and worried about how this might impact her returning to work.
This is not unusual, as the movement limiting impairments can lie well below the skin and are not visable to the untrained eye. For Brenda, the surgery was deep, this meant there was deep scar tissue as well as the surface scar and she could not feel most of this.
The gym program Brenda worked so hard at, was not able to stretch this deep tight tissue.
Deep cording is often missed
Within a couple of treatment sessions of hands on massage using my favourite method, Lewit Barrier Release, Brenda's breast and shoulder skin started feeling more supple and stretchy, the breast tissue became softer, and then could we start feeling deep cording at the side of the breast which extended into the arm.
Axillary lymph node dissection can result in deep scaring and adhesions which has the potential for adhering to nearby lymph structures that travel under the skin. The side trunk lymph vessels travel into the side breast, cross the armpit and then into the inner arm to the hand.
From my clinical experience, finding cording if it is present, is really important because the conservative treatment for this is quite specialized. Although treatment is varied across the world, there are mant therapists like me who believe that the treatment must be at the site of the breast surgery- where the scar tissue formed.
So we have jointly agreed on a treatment goal: gain as much stretch, movement and then strength in the breast/chest, trunk and shoulder blade area. The plan is for fortnightly sessions to move into monthly sessions and then on an as need basis.
Chemo-brain is part of the story
In our early sessions we also identified chemo-brain as being an issue for Brenda. She was having trouble remembering the important details of conversations with family and especially in our treatment session when I talk way too much about how the body works. Don't worry Brenda! Your home treatment reminder is in the email: point form.
Chemo-brain is poorly named, as the research has found that brain changes occur soon after diagnosis and surgery. Brenda has taken charge of her brain fog by reducing her usual multi tasking behavior. We are also trialling Vagus Nerve stimlation to the ear, which involves a TNS machine and ear clips for 30 mins each day. There is some great research about Vagus nerve stimulation for pain,sleep, anxiety and depression. The rehab plan now has a 6 week in-home Vagus Nerve trial, where Brenda and her family will test the results.
The Story is not concluded yet
Brenda is celebrating her birthday next week and was quick to say she feels grateful for every day and every year.
In a busy world, it is hard to have long enough conversations: the time and the brain capacity to hear the whole story.
Breast Surgeons are real busy: do not wait for them to start a "full story"conversation, but you can ask a question that should only take 30 seconds to answer.
do you know an oncology rehab service provider?
I feel honoured to work with women like Brenda who are looking for a richer and fuller story, one that actively seeks more, during their recovery phase.
Connect to make your initial appoitment either face to face or by video conference.
Not sure? Not ready to take a leap of faith? Connect to have a 15 min complimentary online discovery session.
Read more about why Vagus nerve stimulation should be considered after cancer here (pdf away from this website)
* Brenda is not my patient's real name, but she is a nurse who has worked many years in Neonatal care, and she wants to get back to her work.