New cancer diagnosis – what to expect?
I’m writing this from the perspective of an (apparently) healthy mid 20’s female with no pre-existing medical conditions who has studied and worked in the health space so I had some, albeit little understanding of what to expect.
The first thing to be conscious of once you’re diagnosed with cancer is that things move quickly. Really quickly. If you want to get second opinions, do your own research, find other doctors/specialists or consider fertility options you have to do so immediately.
The rate at which you’ll be scanned and biopsied and introduced to teams of medical professionals is partly due to the urgency of beginning treatment as quickly as possible but also for your mental health. You can’t receive life-changing news like this then wait around for a month for scan results. I and most people I know who have been diagnosed in Australia have had conclusive results within 2 weeks.
People will tell you to process this in your own time and remember that you have choices and this is all true. However, if you wait too long you’re at risk of being denied options as doctors sign an oath to cause no harm to their patients and if delaying treatment risks disease progression, they may not be willing to let you explore other avenues while the clock is ticking. For example, one of the first concerns I raised was my fertility. I was put in touch with a fertility doctor with whom I spoke 2 days later and started injecting myself with hormones for egg collection the following day. It was made very clear to me that any fertility options were only allowed to go ahead if they did not slow down my treatment.
The best thing to do once you’ve been diagnosed and are waiting to speak to the specialist that can hopefully answer your questions is to write those questions down. Have a note in your phone and every time you think of something add it to the list, this will help you not only remember your questions but help you get back on track in the limited time you have. Doctors are very good at what they do but they are also human and I have found they can get very distracted which is not ideal when you’re asking some of the biggest questions you will ever have in your life.
.The biggest questions I had going into my first consult with the sarcoma specialist were:
- How do I tell my parents?
- What are my fertility options?
- Can I keep working and living my life?
- What does my treatment time frame look like?
- How do I afford all of this?
Once you have an idea of what you are working with it’s not possible to wrap your head around how much your life is about to change in the short time before you start treatment. How you want to tell people or not tell people or enjoy your time outside or cry into your pillow is completely up to you. This is your news and how it is shared is your choice. I decided not to tell anyone until I knew my official diagnosis and what treatment looked like, I also largely ignored what I was about to come up against and chose to enjoy my time as much as I could before going into long hospital stays while channeling my lack of control into researching the heck out of the surgery I was going in for.
Once treatment had started I struggled most with not putting pressure on myself to have as much energy, socialize or do as much as I thought I should be able to. Chemo works in cycles, these will look different for each type and stage of cancer and will be individualized. I found that after getting through one full cycle I had more of an understanding of what symptoms I would likely experience at each stage of the cycle.
Ask for help when you need it. A lot of people in your life will offer help and it can be tiring saying thank you all day every day, but when you need it, accept help. I still struggle asking for help but I could not do this alone.
People will stop asking what you’ve been up to and instead always ask you how you are feeling which I found annoying when I wasn’t feeling good. Ignoring messages until you feel better is ok. It’s also ok to bulk message updates rather than giving everyone the same story on loop.