A reshare from Advancedbreastcancer.net: A new Vocabulary, terms MBC patients need to know, A-H

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. I’d read a fair amount of medical records having handled a few medical malpractice cases as an attorney and representing people injured in a variety of ways for a few decades, so I thought I was prepared to interact with my medical team, interpret scan results, and participate in discussions with other patents.

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.  Yes, I still Google a lot of terms, but have had to learn which resources can be trusted.   Plus, sometimes I had to look up the definitions of the words inside the definitions!

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; I’ve also included some links for further reading.  Feel free to add terms/definitions in the comments!

1. Cancerversary/Metaversary — those dates related to the beginning or indicated milestones of a cancer experience.  Everyone marks or celebrates or ignores these dates in different and unique ways.
2. Cancer Muggles –– those people who have never had cancer and it is clear from their communication.  Choosing to educate or ignore these people who often inject themselves inappropriately into cancer related discussions is an individual choice.
3. Chemo-brain (a/k/a Brain fog, cancer-related cognitive impairment or cognitive dysfunction) — a long term side effect of chemotherapy marked by the inability to recall words, multi-task, and executive functioning.  Extremely frustrating.
4. Chemophobia — the fear of experiencing IV chemotherapy, which often grips the newly diagnosed but can affect anyone at any time.
5. Contrast — a substance injected or otherwise taken into the body so that structures in the body can be seen better/differently on a scan.  If you’ve had to drink the chalky substance for a CT scan, you will never forget it!  There’s also a least one where the feeling of having urinated can also be memorable.
6. Curative Intent versus Palliative treatment –– when a person has an early stage cancer diagnosis, they are treated with curative intent because there is a possibility of a cure.  Once a person has been diagnosed with Stage IV or metastatic cancer, the focus is shifted to palliative care (not to be confused with hospice care), which is focused on keeping the cancer in check as long as possible while focusing on quality of life.
7. De Novo (latin for “from the beginning) — describes a Stage IV diagnosis where there was never an earlier stage (0-III) diagnosis.  Around 10-15% of Stage IV diagnoses are de novo.
8. End Point — In clinical trials (how a medication is tested for efficacy), an event or outcome that can be measured objectively to determine whether the intervention being studied is how we know if the trial is successful. The endpoints (or what the researchers want to know) of a clinical trial are usually included in the study objectives.
9. EOL (End of Life) — describes in the weeks and months before death and preparation for this sacred time period can be neglected in view of trying to stay alive.
10. ER (Estrogen Receptor) — proteins that are on the surface of a cell which are activated by estrogen. The more receptors, the more sensitive the cell is to estrogen.  On a pathology report, the estrogen will be categorized as positive (+) or negative (-) and, if positive, may also have include a percentage of how positive/sensitive.  Typically, this percentage isn’t relevant for treatment purposes, but some trials will have a definition of whether the cancer is ER+ with a percentage.
11. Foobs — fake breasts, usually used in the context of implants after a mastectomy.
12. Genetic Testing — scientific testing to see if there is a change (a/k/a mutation) in your DNA inherited from your biological parents that means the risk of cancer is increased. This testing is usually done with blood or saliva, not tissue, and the results don’t change over time.  Important to note, direct to consumer genetic testing isn’t the same as testing available through a medical referral. If  you or someone you know has been diagnosed with an hereditary predisposition for cancer, you might be interested in checking out FORCE, a non profit supporting and advocating for thi
13. Genomic Testing — scientific testing performed on the cancer cells obtained through a biopsy to look at acquired or somatic changes.  Somatic changes aren’t in your DNA and represent the cancer cells changing in order to survive, so there can be differences over time.
14. Germline Mutation (a/k/a genetic/hereditary mutation) — a chance in the DNA inherited from your biological parents indicating an increased risk of cancer or other diseases.  If you have been told that you carry a germline or inherited mutation, a great resource to learn more is FORCE, which stands for Facing Our Risk of Cancer Empowered.
15. Ghosting — when people simply disappear from your life, causing a mixture of pain and relief and angst.  To read more about this, check out this article by a grief therapist who works with many cancer patients: https://www.breastcancer.org/podcast/cancer-ghosting
16. Grief Tourists — people who take advantage of the attention you are getting from your cancer diagnosis, usually on social media, but don’t actually offer any support.  To read more about this, check out this article: https://nohalfmeasures.blog/2022/05/12/grief-tourists-who-go-too-far, which references another advocate on a related platform.
17. H&P — stands for the combination of Herceptin and Perjeta (a/k/a poojeta), which is the standard of care when the cancer cells over-express HER2 (see the next post for this definition).

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.