Laura writes…

“After this cycle I’m taking the PET-CT results to the MDT to discuss ABVD vs BEACOPP efficacy chance on EFS. We also need more filgrastim to help prevent neutropenia and an X-ray and ultrasound to check PICC line positioning.”

When I entered the cancer world, a few months prior to my consultant uttering these words, I felt like I’d entered a parallel universe complete with totally different language. In many ways I had. Several weeks into chemo, I understood.

This glossary barely scratches the surface of the cancer dictionary (and I hope never to expand it further), but here’s the lingo I picked up from my ride on the lymphoma rollercoaster…

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• Benign what I hoped my strange lump was, but sadly wasn’t, which prompted the need for this glossary.
• We also want an X-ray report to say unremarkable nothing to be said about it. Nothing! The dream! Glossary ends here!
• Sadly, mine said abnormal, which led to considerable…
• Scanxiety the stress and worry induced by a scan appointment, 90% of which is due to mind-boggling hospital parking systems. These scan appointments include:

• X-ray quick and painless image of your insides, highlights include wearing a not-so-flattering hospital gown.
• CT scan an advanced type of X-ray where you are injected with dye, then lie in a doughnut with a weird smiley face that talks to you and tells you when to breathe.
• PET-CT scan injected with a radioactive tracer before the nurse rushes out, leaving you to lie in a darkened room for an hour contemplating impending doom. No muscle movement allowed, apart from being told to use a ‘hot toilet’ before laying in the scanning tube for a ridiculously long time. The machine doesn’t talk to you. A negative scan would be a positive result.
• MRI choose radio station to listen to over earplugs while strapped into a pneumatic drill. No movement allowed.
• Ultrasound covered in cold slime which is run over by a camera.
• Echocardiogram a type of ultrasound used to look at the heart and nearby blood vessels.
• ECG covered in sensors that monitor your heart’s rhythm and activity. An abnormally high heart rate could be a cause for concern, or a result of scanxiety.

• I then entered a period of waiting a cruel time in which it is impossible to focus on anything else, you become irritable and snappy with loved ones, and the tension can be cut with a knife.
• Waiting for test results seemed like the perfect time to Google friend or foe, depending on what mood you’re in when you search.
• The initial scans confirmed a sizeable tumour an abnormal mass of tissue that other people get, not you. This prompted a…
• Biopsy the use of an alarmingly large needle to take a small sample of cells from the tumour. They are then examined in a lab to see if they’re cancerous.
• Also necessary was a bone marrow biopsy a way of seeing if the cells in your bones are cancerous. A large needle was inserted into my hip bone (under local anaesthetic) to suck out some bone marrow (a squishy tissue that makes blood cells). If getting a needle inserted into your bone sounds painful, you’re right.
• The biopsy confirmed that my tumour was malignant cancerous/opposite of benign/the word nobody wants to hear. This led to hours in…
• Oncology the branch of medicine that deals with…
• Cancer aka THE BIG C abnormal cells dividing uncontrollably. Word we’ve collectively been taught to fear.
• Cancer can be metastatic there’s the main place where the cancer is, but it’s a pesky thing and can develop at other places separate to the main tumour too.
• Not to be confused with mediastinum the part of the chest between your lungs. A mediastinal mass (like I had) is quickly escalated as a serious cause for concern.

• My results showed I had lymphoma a blood cancer of the…
  • Lymphatic system a network of tubes throughout the body that helps to protect us from disease.
  • The lymphatic system is made up of lymph nodes help you fight off infection which in turn contain lots of lymphocytes type of white blood cells.
• Lymphoma can be split into:
  • Hodgkin Lymphoma often told it’s the good cancer/the young person’s cancer, at which point you have permission to scream in someone’s face.
    • Associated with Reed-Sternberg cells large, abnormal cells that resemble watching owl eyes.
  • Non-Hodgkin Lymphoma more common than Hodgkin, majority of patients over 55 on diagnosis.
• Often these are aggressive/high-grade/fast-growing they grow quickly.

• Next up was staging the extent to which cancer has developed and spread within the body. For lymphoma the stages are:
  • Stage 1 lymphoma is only in one group of lymph nodes (anywhere in the body).
  • Stage 2 two or more groups of lymph nodes, anywhere in the body, but either above or below the diaphragm (muscle below the lungs used for breathing).
  • Stage 3 lymph nodes above and below the diaphragm affected.
  • Stage 4 lymphoma that started in the lymph nodes has now spread to another organ, like the lungs, liver or bone marrow.
• If you have B symptoms fun bonus symptoms like night sweats, itching or unexplained weight loss, the letter ‘B’ will be added after your stage (‘A’ will be added if you don’t have any of these symptoms).
• In addition, if one of your lymph nodes is 10cm or more (“scary stuff” I heard the nurse say when she saw mine), it’s deemed to be bulky and ‘X‘ is added to the stage.
• Deauville score a somewhat confusing 5 -point scale that is also used to stage lymphomas.

• All this is discussed in the MDT multi-disciplinary team, have regular meetings to which you will be taken in the form of blood tests and scans. Included are:
  • In my case, a consultant haemotologist (could also be a clinical oncologist) vampires that deliver the bad news, often in the same tone of voice they use to tell you good news.
  • Nurses earth angels, who, amongst multiple jobs, act as emotional support/clean-up crew for the consultants bombshells. They keep the show running and complain about the other members of this list.
    • CNS (clinical nurse specialist) advanced practice nurse who can provide advice on specific lymphoma matters.
  • Pharmacist medicine expert
  • Radiologist read all the scans

• Once it was confirmed I needed chemo using drugs that are poisonous to cancer cells to kill them, we quickly moved on to looking at:
  • Pre-existing conditions any medical condition you have prior to a cancer diagnosis, which may affect the treatment regime and will be taken into consideration by your consultant.
  • Medical history often short as a patient in your twenties, will never be short again.
  • Prognosis an idea of whether the cancer can be cured or what the likely life outcome will be for each patient.
  • Consent to treatment/informed consent form that makes you think you have a choice. Includes your own death.
  • Clinical trials research trials testing new treatments.

• The chemo world intersects heavily with the world of phlebotomy the collection of blood and associated procedures.
• Bloods can be taken from a PICC line an alternative to becoming a pin cushion or a cannula thin tube inserted into a vein.
• Other terms often mentioned are:
  • ESR (erythrocyte sedimentation rate) a blood test that shows whether you have inflammation in your body (likely high if you have cancer).
  • White blood cells (WBC) help the body fight infection and other diseases, constantly monitored during chemo.
  • FBC (full blood count) provides information about the cells in a person’s blood.
  • Transfusion donated blood given to you if you aren’t making enough of your own.
  • Irradiated blood blood that has been treated by radiation to prevent Transfusion-Associated Graft-versus-Host disease, a long name for a condition that you really really don’t want.

• Still with me? We’re only just getting started! Now onto the world of active treatment treatment given to cure the cancer.
• Obs nursing observations to monitor your body, like temperature, blood pressure etc. Done before every chemo session.
• Chemotherapy your friend, poison, or liquid gold, depending on who you talk to. It consists of:
  • Pre-meds your appetiser
  • Cytotoxic drugs your main course
  • Saline flush dessert
• Your chemo is defined by the regimen sets out which drugs, what doses, what frequency etc. For lymphoma alone, these regimens include:
  • ABVD, BEACOPP, R-CHOP, BEACOPPesc… the list goes on (and on). Each letter corresponds to one of the drugs.
• Sometimes multiple regimens are used, the first one being the first line treatment.
• The drugs are administered through a chemo pump your noisy dancing partner for trips to the toilet and you leave each session with an administration summary your bill at the end.
• Chemo is given in cycles if a cycle is 28 days, you’ll have treatment on, say, the 1^st and 15^th day to give your body time to recover before the cycle starts again.
• Some people have bad reactions the nurses are trained to respond quickly (with more drugs) but it’s scary to watch.

• Chemo leaves you immunosuppressed having a weakened immune system.
• So your neutrophils type of white blood cell are constantly monitored to prevent you being neutropenic low number of white blood cells which can lead to neutropenia your body can’t fight infection.
• Because of this you must shield feel on edge around everyone everywhere.
• Up until THE BIG C, my main concern over the last few years had been Covid aka the small c a right pain when trying to shield and adds an extra layer of stress to an already highly stressful situation.
• All this means you need to carry an alert card cancer treatment can cause serious, life-threatening side effects. This card will allow you to be seen quickly in A&E if necessary.

• Fortunately most of the side effects other effects caused by the drugs aren’t life-threatening, they’re just pretty miserable. Some common ones are:
  • Fatigue “I’m tired all the time too” the masses say. “You just need to do less and nap” I think, as I sleep for 16 hours and wake up exhausted.
  • Hair loss the worst (chemo targets rapidly dividing cells which affects hair follicles)
  • Anemia the opposite of Popeye
  • Constipation utterly shit, because none will come out
  • Diarrhea the result of trying to overcorrect the above problem
  • Sickness/ Nausea bleugh
  • Peripheral neuropathy a tingle in your fingers and a tingle in your toes
  • Chemo brain I was thinking of something, but it’s gone, I’ve lost my words. Oh wait, nope, I’ve forgotten again. What day is it anyway? Could also result from new lingo overwhelm.

• As if all that wasn’t enough, the chemo drugs are often accompanied by steroids straight from the devil, leave you wired, tired, irritable, and generally a joy to be around.
• Also likely necessary are G-CSF (granulocyte colony-stimulating factor) injections tell the bone marrow to produce more white blood cells, making you less vulnerable to infections.
• An example is filgrastim has you up all night singing ‘back bone connected to the hip bone, hip bone connected to the thigh bone, thigh bone connected to the knee bone…’ as every single bone and connection in your body becomes apparent.
• Also relevant here are emotions will knock the wind out your sails if the drugs haven’t already. Hard to know which are caused by having cancer and which are caused by the treatment for having cancer.
• Which leads on to mental health will inevitably take a hit under the weight of a cancer diagnosis. Will be pushed to the limit during and post treatment.

• All this treatment will hopefully lead to remission tests and physical exams show that all signs of your cancer have gone.
• Or partial remission some, but not all, signs and symptoms of cancer have disappeared. This leads to:
• Active monitoring/surveillance/watch and wait what it says on the tin, a confusing and stressful time where the effects of the chemo are the same as the initial symptoms of the disease, thereby making the period feel less watch and more worry and wait.
• This period also generates more acronyms:
  • CMR complete metabolic response – no evidence of disease using the current tests
  • NED no evidence of disease
  • DFS disease free survival
  • EFS event free survival
  • PFS progression free survival
  • PTFU patient-triggered follow-up
• Relapse return of the disease, will be discussed IMMEDIATELY after being told you’re in remission, thereby dampening the good news.
• As will the chance of second cancers a completely different cancer to the initial diagnosis.
• And late effects side effects that show up months or years after treatment. They say that cancer is the gift that keeps on giving after all…

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