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

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. Port (a/k/a portocath)— an access point to veins that is inserted under the skin, typically in the chest.  The port consists of a rubber access point and a tube inserted into a large vein close to the heart.  Some ports are “power ports” in that contrast for scans can be injected; others don’t allow contrast.  Not to be confused with a PICC line, which is usually in an arm or leg.
2. PR (Progesterone Receptor) – proteins that are on the surface of a cell which are activated by progesterone. The more receptors, the more sensitive the cell is to progesterone.  On a pathology report, the progesterone 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 and there aren’t treatments that are FDA approved to target this receptor yet.
3. Progression — when the known cancer sites or mets are growing and/or when there are new areas of cancer growth.  Typically, when progression occurs, treatment changes are necessary because progression indicates the the cancer has mutated to be able to get around whatever medication a patient is taking.
4. Progression Free Survival (PFS) — this is typically an end point (see definition in the first post) of a clinical trial and measures how many patients have not had progression (cancer spreading further) at some set time.
5. Red Devil — a rather tongue in cheek label for doxorubicin, also known as Adriamycin because it’s red, it makes your urine red, and causes all kinds of side effects.Scanxiety — the feelings one has before/during/after a scan once you have already received a cancer diagnosis.
6. Spoon theory — a way to explain how cancer fatigue affects a patient receiving treatment, that we wake up each day with a finite amount of energy or spoons and once they are spent, there are no more.  To read more about this theory, check out this link: https://en.wikipedia.org/wiki/Spoon_theory.
7. Stable — when scans show that the cancer isn’t growing or there is a variety of small growth or regression in a variety of sites.  While NED or NEAD appears to be the goal, reaching stability means treatment is keeping the cancer in check and some of live for years in stability.
8. Stage IV (a/k/a metastatic) — this is the final/terminal/incurable stage of cancer when cancer cells have traveled from the original site of the cancer and taken up residence (metastasized) in other locations in the body.
9. SUV uptake — a value on a scan, particularly PET Scans, which demonstrates higher metabolic activity.  The “brighter” or higher the value, the more active that area is.  What can be confusing is that organs doing their job can often light up and that’s not a bad thing.  It’s when there are particular points or areas of activity within an organ or bone that is lighting up by itself that raises concern.
10. TPA (a/k/a Tissue Plasminogen Activator) – medication that can be injected into a port to dissolve tissue that has grown inside the tubes connected to the port that prevents blood return. Can take time for TPA to work and this can increase the appointment time.
11. Treatment holiday — taking a break from treatment for a time, often this is done when scans show no evidence of disease for an elongated time period.  Often a very tricky decision for patients to prioritize quality of life over treatment.
12. Trial (a/k/a clinical trial) — how a medication is tested for efficacy.  A medication that is approved by the FDA (in the US) to be prescribed to patients has been through all three (3) trial phases.  One important note on cancer trials is that no one gets a placebo.  Patients participating in trials either get the standard of care or the experimental medication.
13. WBC (a/k/a white blood cells; also neutrophils and ANC, the absolute neutrophil count) — results from bloodwork that can indicate that the immune system isn’t functioning well, also known as immunocompromised.  Many of us live for years with a compromised immune system; at the same time, it is important to know that there are interventions that can help and wearing masks is a must.

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.