Written by Tiffany Nissen, Lived Experience contributor
I am one year in to my cancer diagnosis and the only thing I can compare it to is a fast moving train, which doesn’t slow down and one which there are not many stops to get off. You are firmly stuck to the seat!
But somewhere along the route I wondered if I was on the right train? I didn’t really ask enough questions at first and as time went on, I realised I wasn’t 100% sure of the treatment plan, and if that was right for me, my body and my life. Those early days were a big blur of appointments, words and terms I didn’t really understand, and an overwhelming sense of flight or fight. I know I didn’t fully comprehend or understand, as much as I thought I did at the time – in hindsight there were appointments I attended and listened, but I certainly wasn’t present to what was being said.
When you are dealing with a serious condition it is very stressful, and it’s important to have confidence in your treatment plan and providers. I didn’t want to second guess myself down the track. I wanted clarity and peace of mind so I could completely embrace my treatment plan, to the best of my ability.
Second opinions are a patient-driven process. Yes, I know it is the last thing you will feel like doing. It’s not automatic that these things happen so it does take some time and research from your end. But it is a worthwhile process, even if you are tired, confused, angry or dishevelled. All it takes is a referral from your GP and a discussion with your current oncologist and/or surgeon. Some people feel uncomfortable asking their doctor for a second opinion, but specialists are used to patients doing this. Honestly, we all get 2 or 3 quotes when putting in a new kitchen – why don’t we do it for our treatment plan which may involve life changing procedures? It is your right as a patient to ask for as many opinions as you like.
A second opinion can be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommended treatment plan and reassure you that you have explored all of your options. A second specialist can also answer any questions you may still have that you didn’t ask, or have the brain capacity to ask, in the first instance.
Even if you have started treatment, this is still an option you can research and explore if the current treatment plan doesn’t feel right for you. You may have questions about how well the treatment is working. It can also be valuable to get a second opinion at the end of a course of treatment to figure out the next steps for additional treatment or for monitoring for recurrence. In my case, my 3rd opinion oncologist agreed to follow a trial from America that was much more congruent with my personal treatment plan. We had both researched the results and risks and an informed decision was made together.
If you do decide to get a second opinion, make the most of your appointment. Go prepared. Here is a list of things you can collate for your appointment, but it’s also important to start to build a “health folder” of this information for your own records:
- online access granted to their team to scans and a print out of the report from every MRI, PET, CT, ultrasound you’ve done- start collating!
- recent blood results
- genomic testing results if this has been done
- treatment history with dates, chemo types, etc
- any histopathology results from tumour biopsies
- operation reports and discharge summaries from hospitals stays/surgeries
To summarise, some of the reasons why you may want to get a second opinion include:
- peace of mind
- ensuring you receive up to date advice and treatment
- getting a different point of view
- joining a clinical trial
- exploring and challenging advice from your first doctor
- not feeling at ease with your first doctor.
You may even find your case referred to a multi-disciplinary team full of oncologists, surgeons and radiologists who can weigh-in on your next course of action. Surely that can only be a good thing?
The decisions you make about your health care will be some of the most important decisions in your life. Please take the time to understand and consider all of your options – it is so important to be your own health advocate.
If you don’t know where to start, please contact Bloomhill nurses for support at firstname.lastname@example.org or contact us at the center on 07 5445 5794.
- Cancer Australia: Getting a second opinion.
- CancerCare: When to get a second opinion?
- PubMed: Clinical value of second opinions?
All information provided by Bloomhill is based on research and best practice guidelines. Our model of care utilizes the Clinical Oncology Society of Australia (COSA) domains of wellness along with available clinical evidence. Always consult your care team regarding matters that affect your health. This is a guide intended for information only.