5: Terms
Diagnosis: the identification of something, including of a disease or type of cancer or tumour.
Prognosis: the opinion of a doctor about how a disease may progress, whether and when there may be recovery or prospect of death. Prognosis may be difficult to express accurately. Not everyone wants or accepts a doctor's prognosis and there is in any case always a possibility of it being wrong. Use a prognosis as a guide to practical planning, not as a precise road map. Have full regard for the diagnosis, remember that the best indicator of prognosis is how you feel, not the other way around.
MRI scan: the most useful device for 'seeing' a brain tumour, which clearly distinguishes tumour from normal brain cells. MRI stands for magnetic resonance imaging, and it distinguishes between different water states in tissue. There is no ionising radiation, as with X-ray and CT scans. Its application throughout Australia is not complete. It is expensive, not everyone with a headache will be given an MRI. MRI has made possible diagnosis of brain tumour as never before.
CT : is more readily available than an MRI and is the tool of choice in certain situations, especially after an operation, where its view of oedema (fluid) and of blood vessels (particularly any leakage) is very important.
Histology: a branch of pathology where actual tissue is examined under a microscope to determine precise diagnosis.
Neurosurgery: the branch of surgery specialising in the central and peripheral nervous system, particularly the brain and spinal column. Very commonly, a neurosurgeon will be the first specialist a brain tumour patient will see.
Craniotomy: a brain operation where commonly a piece of skull is removed for access.
Minimally invasive surgery: in some circumstances and in some centres a craniotomy can proceed with smaller point of access.
Biopsy: an operation solely for the purpose of removal of tissue for pathologist's examination.
Debulking: the removal of the entire tumour mass or as much as possible.
Resection: “the partial removal of an organ or other bodily structure. As when the doctor says the cancer is resectable”. (Wikipedia)
Oncology: the branch of medicine that studies tumours (cancer) and seeks to understand their development, diagnosis, treatment, and prevention. A medical professional who practices oncology is an oncologist. See the Wikipedia discussion with more information here.
Radiation therapy (or radiotherapy): the medical use of ionizing radiation as part of cancer treatment to control malignant cells (not to be confused with radiology, the use of radiation in medical imaging and diagnosis). [Wikipedia]
Concurrent or adjunctive chemotherapy with radiotherapy: the combination of chemotherapy and radiotherapy applied to the patient over the same period of time.
Clinical trials: hugely expensive procedures. The expense means dependence of the whole process for the most part on drug companies. Given that brain tumour is a relatively small market compared with other fields of cancer treatment it is not easy to get drug companies into clinical trials for brain tumour. Phases of clinical trials cover safety, dosage and effectiveness. The account at Wikipedia is helpful -- especially in the description of the phases. You get the drug definitely in the bottom phase of a trial to see how much it hurts you in a short time frame. See the last line of this page to be assured that not all clinical trials are based on complete wisdom.
You get the drug maybe (half of you do, half of you don't) at later phases, while they figure out the therapeutic dosage rather than just the toxic dose and then move on to try to demonstrate that the thing works in terms of whatever duration of survival months compared with someone sitting in the sun sipping a soda.
It might be useful to think of participating in a clinical trial for malignant brain tumour as an altruistic contribution of limited time and comfort for the possible marginal benefit of mankind. If you think that this last is a mean statement ask the people offering the trial just what increment of survival the drug company may regard as enough to consider marketing the drug and just what amount of reduction of quality of life the drug company contemplates as reasonable before it would suspend the trial.
You may not participate in a clinical trial without giving your informed consent. Be very very informed, as if life depended on it.
Not good to get into clinical trial envy!
Chemotherapy: the use of drugs which are intended to kill cancer cells.
Neuro-oconcologist: a specialist oncologist who focuses on brain tumour, though also generally treating other types of cancer. There are few of these brain tumour specialists in Australia, just as there are relatively few brain tumours.
Tertiary health care centres: the highest ranking applied to a hospital found in major capital cities.
Rehabilitation: the process of working with a patient to regain everyday skills via the use of social workers, physiotherapists, occupational therapists and speech therapists.
A great virtue of treatment at a Tertiary Centre is that there will be a team of members of these core and allied health disciplines working together. It is, however, not always wise or practical for a brain tumour patient to move to the city for treatments; it is essential, however, to ask for local treating teams to be in touch with best current advice and practice.
Second opinion: the obtaining of an alternative opinion for another doctor. Medicare, the government's subsidised health system, allows you to seek a 'second opinion' and if you are in doubt about the adequacy of your advice, it's OK to say you would like to get a second opinion... remembering that with aggressive brain tumours time may be of the essence. Quite often members of OzBrainTumour will ask in the group for names of specialists others will suggest in their geographical area for a second opinion.
Inoperable: the term given to a tumour where the neurosurgeon is not prepared to operate. This may be for many reasons, the way it is situated in the brain – hard to get at, close to critical functions, too diffuse (as distinct from discrete), etc. It may also be the view of a surgeon that the patient's health or age (or combination of those) make surgery risky or inappropriate... inappropriate being a concept not just relating to the risk on the operating table and capacity to recover, but also as regards the balance between possible extension of life in time in balance with quality of life on any day. It is always possible to get a second opinion on surgery, but a decision to do the surgery rather than not it not necessarily the best decision just like that. Doing more is not necessarily doing better.
If you really want to get opinions and options ask hard questions, beginning with, repeatedly “WHY?” It is most often the case that a doctor will observe the patient and carer to see what information should appropriately be given. Many people want negligible information, are threatened by threatening information.
It is absolutely the right of every patient to decide what she or he wants to know or not know. Decide your policy on information, opinions and options thoughtfully with those you want in such consideration. Tell the doctors what you want to know. Help them help you.
If you want that second opinion, you need your MRI scans. If you do not have the photographic sheet images, you may ask for the images on CD-ROM. A hospital may give you a CD-ROM, perhaps take a blank CD with you. BUT, and it is an important BUT, doctors do not all use the same image software and it is possible another doctor will not be able to read what is on your CD.