The Many Names of Metastatic Breast Cancer (MBC)
I’m sorry, you’ve been diagnosed with what?
A look into the confusing terminology that comes with Metastatic Breast Cancer.
Do all of the terms and short forms of breast cancer lingo confuse the heck out you? You’re not alone. As someone fairly in the know about Metastatic Breast Cancer (MBC), I thought I knew everything. I consider myself well-spoken in the language of cancer as my mother had been diagnosed when I was in grade one and again in high school. I will admit though that when my sister was diagnosed with MBC, I had a whole list of questions. They had said it had spread to the liver (so I thought, how come it wasn’t considered liver cancer?) My other thought was “well they’ll just treat it similar to her breast cancer and she will be back at her summer paradise in no time (a.k.a the trailer) cancer free ”. So then began my journey into the confusing area of diagnosis linguistics.
Stage IV, incurable, terminal and cancer metastasis all mean the same thing as Metastatic.
By definition each word when associated to breast cancer means that cancer cells have spread from the breast and local area around the breast and has been found in other parts of the body such as the bones, liver or lungs. My little bubble of innocence burst. This perceived “speed bump” was now a “mountain” instead. We were now dealing with the side of cancer we never really discussed: deadly cancer.
When breast cancer spreads to another part of the body, it is still considered breast cancer.
For a moment my thought process went, “cancer in the liver means it’s liver cancer now, that’s a totally different cancer”. Which I assumed that if they’ve caught it early enough, she could do more treatment and it would go away. I was then introduced to the process of deciphering the difference between a new cancer and a cancer that has spread. The process for my sister was that they did a biopsy of her cancerous lumps on her liver. From those results the doctors saw the same genetic markers as her breast cancer. Meaning her Triple Negative Breast Cancer (type of breast cancer) markers were evident on her liver masses. This is how they concluded that her cancer was indeed back and had moved from her breast area.
A terminal cancer diagnosis doesn’t always mean death is imminent.
There are technically different stages of terminal cancer as well. Although everyone’s diagnosis is different and some only receive end of life care.
Here are some more terms:
In Treatment – Even in the face of a devastating diagnosis of stage 4 cancer many patients do receive medical treatment to shrink and stop the cancer cells from further spread or maintenance. This can be in the form of I.V or oral chemo, radiation, and some patients even have access to trails and new medicines that have hit the market such as parp inhibitors (targeted cancer treatment).
NED (No Evidence of Disease)– In some cases those affected by incurable breast cancer will experience scans that do not show concerning tumours. This does not mean that they are necessarily cured but it does sometimes mean a break in treatment.
Palliative Care – There is often a misunderstanding with this stage of care. Often people lump this with hospice and end of life care but that is not necessarily true. Palliative care often refers to adding additional layers of support. Focus tends to drift more to treating the whole person. Emotional support and the management of symptoms and pain are prioritized to promote quality of life.
Hospice Care or End of Life Care – When treatment has stopped working and there are no other options, there is the focus on comfort and pain management. At this point sometimes additional layers of support are added for family and care givers. Hospice workers provide a supportive environment with the focus on making the best of the last months/weeks or days. Patients are given the chance to discuss what this stage will look like during the palliative stage. I really wish we didn’t have to learn this language at all, but I have found that since learning these terms I have been a more supportive ally. You will never have all the right words to use when speaking to someone with MBC. My advice is just to remember to love them through this, as they will not have all the right words either.
Laura Rice is a member of Rethink’s Metastatic Breast Cancer Advisory Board and is a Wife and Mother of 3 young girls as well as a Freelance Graphic Designer from Collingwood, Ontario. While navigating life after Triple Negative Breast Cancer treatment, Laura found purpose through supporting those diagnosed with cancer as well as those who like herself carry a genetic mutation that predisposes them to developing cancer. Laura currently volunteers for the Canadian Cancer Society as a Peer to Peer support facilitator and Co Run Director for the Blue Mountain/Collingwood CIBC Run for the Cure.