A reshare from AdvancedBreastCancer.net: A new Vocabulary, terms every MBC patient needs to know, H-O

Many of you are aware that I have been writing for AdvancedBreastCancer.net for the last several years. You can read all the articles I’ve published there via this link: https://advancedbreastcancer.net/author/abigail-johnston-esquire, I wanted to share here a series of articles I wrote for them that many of you made suggestions for some time ago …

When I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017, I was astonished at how many of the medical or colloquial terms were utilized by medical people and patients.  Boy did I have a lot to learn.

Adjusting to acronyms and typically utilized medical jargon can be a big part of how the beginning of a diagnosis feels overwhelming.  I found myself wishing many times in those early years that I had a dictionary to guide me since there are so many conflicting things online.  Since having a handy list was something that would have helped me, I’ve worked to gather a list of terms that may be helpful for others living with MBC– please note that the definitions are in my own words unless otherwise indicated and are specifically worded to focus on the metastatic (a/k/a Stage IV) experience even if there is a wider definition.  Feel free to add terms/definitions in the comments and consider reading the post with the first part of the alphabet!

1. HER2 (Human Epidermal Growth Factor Receptor 2) — a protein involved in normal cell growth.  If a cell is truly HER2- (a/k/a Her2 0), then this protein is expressed normally. HER2+ is when there is an over expression of this protein on the surface of the cancer cell, which allows the cancer cell to grow quickly.  There is a new category of HER2 known as Her2 low.  On a pathology report, you may see +1 or +2 to indicate this new low category.  To be HER2+, you may see +3.  Anyone who doesn’t see this information on your pathology report might want to consider asking for biopsies to be re-tested!
2. Hospice care (not to be confused with Palliative care) — is a term describing the supportive care provided when a doctor certifies that a person has less than six (6) months to live.  Life saving treatments are typically not available while comfort care is prioritized.  Palliative care is that supportive care given while there are still life prolonging treatments like chemotherapy or targeted therapy. Also check out my friend, Jennifer O’Brien, a/k/a The Hospice Doctor’s Widow.
3. IV (Intravenous) — fluid is pumped into the body through a tube that is inserted into a vein.  The bags of fluid are typically hung on a pole to allow gravity to also assist and the tubing connecting the bag to your vein is run through a pump.  Anyone who has heard the screeching of these pumps will never forget it.
4. Line of treatment — this references the number of treatments a patient has been on since their date of diagnosis and can be a way of including or excluding a patient from a clinical trial.  Once a person has been on multiple lines of treatment, they are known as “heavily pre-treated.”
5. Liquid Biopsy — tests performed on blood to look for information about active cancer when a tissue biopsy isn’t possible or feasible.
6. Magic Mouthwash — a prescribed solution used to treat mouth sores caused by some forms of chemotherapy and radiation therapy.
7. Markers (a/k/a tumor markers) — tests that look for different levels of protein or other indicators in the blood that may indicate that cancer is growing.  Different oncologists follow some or all of the following markers: CEA; CA15-7; CA27-29.  Not to be too confusing, but some doctors don’t test for these markers at all.
8. Med Onc (Medical Oncologist) — a doctor who treats cancer using medication.  There are other types of oncologists and here is a great article describing the different roles if you want to learn more.
9. METS (metastasis) — locations of cancer outside the original source. For instance, I have metastases or mets in my bones where the cancer spread when it left my breast. Sometimes these locations of cancer elsewhere in the body are called lesions or tumors and there are different descriptions when the areas are more or less active.
10. NEAD (No Evidence of Advice Disease) — this category is typically reserved for those of us with bone mets since breast cancer that has spread to the bones will often show up on an X-ray or CT scan as a black spot in the bone even if the cancer has died or is no longer active.
11. NED (No Evidence of Disease) — since those of us with MBC are typically in treatment for life even if no scan can detect the presence of cancer, we cannot achieve the coveted status of “remission.”  No evidence of disease acknowledges that no scan can detect the cancer any longer but we are not released from treatment.
12. Never Trust a Fart (a/k/a shart) –– a rather tongue in cheek description of the indignity of uncontrollable diahrea, which is often a side effect of various medications.
13. Ogliometastatic — a term describing a patient who has less than six (6) metastatic sites.   Patients who are ogliometastatic often receive different treatment than those with a higher disease load.
14. Onc (Oncologist) — a doctor who treats cancer.  See the previous article and the definition of medical oncologist for more information.
15. OS (Overall Survival) — this is typically an end point (see definition in the first post) of a clinical trial and measures how many patients are alive at some set time.  Some medication can improve time of stability but not improve the overall life of a patient, which is why different end points of a trial are usually included.
16. Outlier (a/k/a unicorn, exceptional responders) — terms that describe a person who has lived with metastatic disease longer than the median or average.  Some define outliers as those who have lived five (5) years or more with metastatic disease.

As I write this post (and keep your eyes open for the next part of the alphabet!), terms keep coming to me, so please do add in terms I’ve missed here or via the communities at AdvancedBreastCancer.net.