You and your medical team
Some tips for your medical appointments:
It can be hard going to your doctor to hear a diagnosis or to get updates on what is going on. Remember this about you, so it’s important that the appointment is on your terms. Most importantly, don’t think you are dumb if you don’t understand what you are being told – it’s a complex subject, you’re not an expert, and you’ll might not be thinking as clearly as you usually do. So…..
Write down a list of questions to take with you
Take a support person (this is really important – not just because you have someone who knows what is happening straight from the medical professional, but that person can help remember what was said, including by taking notes)*
Ask to record the appointment on your phone so you can listen later or have someone with you taking notes
Don’t be afraid to ask questions – and as many as you like.
If you have any difficulties understanding what your doctor tells you keep asking for the information in a way you can understand. It is the doctor’s responsibility to explain it to you.
Ask to be sent a copy of your results and any correspondence regarding your medical care
*If you have three people in the appointment we can almost guarantee everyone will hear something a little different – so someone taking notes or recording the meeting is really useful
Once you have received a diagnosis of ovarian cancer your health will be managed by a team of doctors and health care professionals. These may include:
This is a a general Gynaecologist who has completed additional years training in gynae cancers. They will generally co-ordinate your care and generally perform any surgeries required.
If you live in the regions your care may be managed by a general Gynaecologist with an interest in gynaecological cancers. These professionals may be great, but note there is some evidence to suggest that outcomes are better when you are managed by a Gynaecological Oncologist rather than a general Gynaecologist. You should ask your doctor whether being seen by a Gynaecological Oncologist is a possibility.
Medical Oncologists each have an area of interest and expertise. Yours will have specific expertise in gynaecological cancers. They prescribe medical treatments (including chemotherapy and targeted drugs).
Radiation Oncologists generally have an area of interest and expertise. Yours will have a specific expertise in gynaecological cancers and brachytherapy. They prescribe radiation treatments.
Will look at samples of tissue taken from surgery (biopsies) under a microscope to look for cancer, and determine what type of cancer you have.
Will interpret ultrasound, CT (computerized tomography) and MRI (magnetic resonance imaging) scans looking for signs of cancer.
This stands for Multidisciplinary Meeting and is the name for the meeting where the specialists above meet with each other to decide the best course of treatment.
You may be given a contact for the Gynaecological Oncology nurse. They can help if you have any concerns about your health and can pass messages to your specialist.
Some ovarian cancers are inheritable. This can have implications for your family members but also medical treatments. A genetic counselor can arrange for testing for this.
Your own GP
Can help with day-to-day concerns such as cancer marker blood tests, post-surgical wound care, sleeping pills, antidepressants, and side effects of treatments. They will receive correspondence from all the other doctors and health professionals you see and as such are a good place to start if you have questions in between the specialist appointments.
Will listen and give you coping strategies. Usually this will be provided free of charge by the District Health Board. It is important to find someone you connect well with. It is okay to ask to see another psychologist if the initial one is not a good fit for you.
Can assist you in regaining strength following operations and treatment. The charity PINC can help you find a physiotherapist who has expertise in women with cancer and can sometimes provide funding for treatment (https://www.pincandsteel.com/programs/pinc/).
They work in the community and are specially trained to treat some of the common issues women have following treatment including incontinence, vaginal prolapse, and painful intercourse.
They specialise in treating women with lymphedema which can be an uncommon treatment side effect of treatment