What can you expect during your cancer screening, diagnosis, treatment and beyond?
Well, that depends!
It depends on which part of your body is affected by the cancer, the nature of the tumour and how early it was diagnosed.
It depends on the type of treatment you need and how your body is affected by that treatment.
It depends on your general health and how much support you receive from your family and friends
It probably depends on other things too!
Your treatment will be prescriptive – it will be customised to you specifically. Even if you meet someone who seems to have the same cancer as you, don’t be surprised if their treatment is different. You are unique!
Your treatment will be “person-centred”, which is the medical term for “tailor made”. Your treatment and therefore your experience will not be exactly like anyone else’s, but let’s try to describe what many cancer “journeys” involve……
At various stages of your cancer treatment you will meet the members of Your Team.
Your General Practitioner (GP) will probably be the first team member to speak to you about your cancer diagnosis. He/she will refer you to medical and surgical specialists, and will also be the person who continues to monitor your health after your cancer journey is complete and you are no longer visiting the cancer specialists. It is important to keep in regular contact during the process as well. It makes sense doesn’t it?
If you would benefit from surgery in the treatment of your cancer, this will possibly be done first, before any other treatment. From time to time chemotherapy and/or radiotherapy is done first to make the surgery more effective, but your team will advise you about this. Following surgery, your surgeon will almost certainly send the tumour that was removed to a pathologist and will meet with you regularly during the 6-8 weeks following your surgery to check your wound, your recovery and your general health. Your surgeon will also discuss the pathology results with you, but be aware this report can take several days or even weeks to be available. This can be a really nervous time! Some people find talking their worries over with someone who has been through a similar experience (link to support groups), or getting in touch with their cancer nurse coordinator (link to CNC) can help. There is plenty of further information in the support and resources section.
Your treatment will possibly be coordinated by a medical oncologist who you will visit regularly, especially if you are having chemotherapy. Your relationship with the oncologist may last for several years, although your visits will most likely reduce in frequency from fortnightly or monthly to annually.
If your cancer is of the type that chemotherapy targets, it will probably start a few weeks after your surgery when your wound has healed and you have recovered. This type of chemotherapy may be called “adjuvant” (treatment that is given in addition to the primary, main or initial treatment) and is given even though the surgeon may be confident that the cancer has been removed. The chemotherapy given before surgery is called “neo-adjuvant”. (Therapy that aims to reduce the size or extent of the cancer before using radical treatment intervention)
Clinical trials means researching better chemotherapy drugs and/or better ways to deliver the treatment. In the South West, suitable patients have the opportunity to be part of several international trials. If your oncologist thinks you may benefit from one of these clinical trials, you will be invited to meet with the Clinical Trials Coordinator (Link to Your Team/Clinical Trials Coordinator) at St John of God Hospital in Bunbury prior to starting chemotherapy as your prescription may be different if you choose to participate in a clinical trial. It will be your choice to participate or not, and you will be given information and have an opportunity to ask questions before making your decision.
Chemotherapy is given in cycles, usually every 2-3 weeks, with time in-between to recover and do some of your usual activities.
Some chemotherapy is given intravenously (through a small needle that is put into a vein) in the Oncology clinic. You will be given a comfortable recliner chair to sit in, and treatment can take anywhere between 1 and 6 hours (take a good book or get used to daytime TV!). Alternatively, chemotherapy may be given slowly through a pump that you wear for 2 days. You can wear the pump at home, returning to have it removed once treatment is completed. Chemotherapy can also be given as tablets. Some people have a combination of intravenous therapy, take-home pump and tablets.
In the chemotherapy clinic you will meet the Oncology Team which comprises specialised nurses, administrative staff and a team of Patient Care Assistants, Pastoral Care Practitioners and volunteers who are on hand to make you a cuppa or to sit and chat.
Chemotherapy may affect your hair. It may thin or fall out. Try to focus on the fact that this is the effect of the treatment and not the disease. Try to tell yourself that chemotherapy is your “friend”, not your enemy. It will come to an end. The team will talk with you about options during this time, including wigs and headscarves (link to psychosocial support team/wigs and other) which may make you feel more comfortable.
Before each chemotherapy cycle you will be required to have a blood test to ensure that you have recovered enough to have the next treatment. You will also be asked to keep a diary where you will be encouraged to keep a record of how you are feeling and any symptoms you experience. There is more detailed information about chemotherapy on this site for you to read when you are ready.
If your cancer is of the type that generally responds to radiotherapy treatment, you may start radiotherapy before chemotherapy is completed. You will visit a radiation oncologist and have everything explained to you with opportunities to ask questions. At a visit soon after, you will be prepared for the treatment through a simulation or planning appointment. This pinpoints the area to which the treatment will occur and often involves the use of a CT scanner.
Radiotherapy is usually given every week day, but you may have a day off every now and then. It usually takes about 6 weeks. The radiotherapy team will explain your specific treatment plan at either your first or second visit.
Your Radiotherapist will see you a few weeks after your last treatment to ensure that you have fully recovered and any side-effects you experienced during the treatment have resolved. At this time your Radiotherapist will write a letter to your oncologist advising that the treatment has been completed and you will be asked to make an appointment to visit your oncologist. There is more detailed information about radiotherapy on this site for you to read when you are ready.
At this stage you can probably congratulate yourself on having the major part of your treatment behind you!
Your oncologist will continue to see you every 3 or 6 months and will examine you to ensure you are recovering as expected. Any tests that may be required, such as blood tests or CT scans will be ordered at these monitoring visits and your GP will be kept up to date.
Many people experience changes other than the obvious physical changes during the time they navigate their cancer treatment. For example, some people say that things that were important to them before their diagnosis become less important and that they have different priorities in life. Some people undertake major changes to their lifestyle, particularly in relation to diet and exercise, because achieving optimal health becomes important. Some people take early retirement to seek opportunities to enhance their life while others use this time to seek redirection and pursue goals that had been put on hold, embarking on a whole new career. There is plenty of further information in the support and resources section.
So, what can you expect? Again, the answer is – that depends on You!