The Diary: Cancer will not Win. Ch.2: Appointments and Genetics

I spoke to the nurse at the GP clinic. At first I was referred to the Mater hospital, because I didn’t have private health insurance for hospitals.

It’s public, and that’d likely sustain a lot of the costs.

Unfortunately for me, they are understaffed and overworked, and my GP received a letter saying that they wouldn’t be able to allocate me an appointment for some time.

My GP, being the super great doctor he is, was not at all happy with this. I was told that I could see a surgeon at private rooms who may also work through a public hospital. Of course, this would incur out of pocket costs, but would be quicker in the long run.

Of course I agreed - I’d rather things done sooner than later.

I’d already had quite a few out of pocket costs between the GP, ultrasounds, biopsy, and other appointments. What could it hurt, really?

I was referred to a specialist who worked both out of the private rooms and and the hospital - but her books were full until the following week, and I was offered an appointment that same week with a different doctor, so I took it.

I definitely believe that this was possibly my best choice during this time, because he has been absolutely incredible at pushing all of my referrals through quickly.

I saw Dr Park at the private rooms. He first asked what I understood of my diagnosis, to which i replied "I have provisional stage 2 breast cancer." He confirmed this, and told me I'd need to get further imaging done to confirm the size and stage. I had to change into a hospital gown, and I had an ultrasound and mammogram done within the next couple of hours, at the rooms.

Waiting in the rooms to have the imaging done was the longest part of the appointment. I was surrounded by older women in a small waiting room, all of whom seemed comfortable talking with eachother, but I myself am too socially anxious to start a conversation in a group of people I don't know, so I sat in silence and listened instead.

They called me into the ultrasound room, and the nurse and I chatted about how she got into her role, and what she was looking for on the scan. She explained to me that she was looking for mostly sections on the scan that were like a void. I'm still not entirely sure why, but it was comforting to learn.

The mammogram was next - something that generally women and people assigned female at birth only have when they are older than I am. It was uncomfortable, squishy, as you could imagine. the paddles press down and try to find more anomalies in the tissue. It didn't hurt, but it was still uncomfortable.

Once the imaging was complete, I was called back into Dr Park's room.

He confirmed that the tumour looked to be about 31mm - a little larger than the original ultrasound showed - but he didn't seem too worried about this, which has largely been one of the most comforting things about the whole process.

He told me that I would also need to make an appointment for an MRI. The reasoning for this is that being young, I have denser breast tissue, and it is much harder to properly identify the definitive size of the tumour, especially for what it is - lobular carcinoma. He explained that this specific type of cancer can often be underestimated - I was later told that the reason for this is because it forms in the lobes, not the glands of the breast, and spreads out moreso than glandular. It is also the second most common type of breast cancer, which is interesting, if nothing else.

Dr Park also explained the benefits of genetic testing. If you know me, you know that I love to learn about things that I don't usually understand, so I was very interested in this part - he would refer me to a geneticist who would test my blood for markers of certain genes. This could be integral to my family's health as well - considering that i have 3 siblings assigned female at birth, and the BRCA (common breast cancer gene) can also increase the risk of prostate and pancreas cancer in males.

More on that later.

I was given the referrals I needed, and sent on my way.

I called up that day to make the appointment for my MRI. It was scheduled for later that week. Super fast, prioritised. Again, comforting. I'm so grateful still that I was put through as an urgent patient.

I was also contacted by the Geneticist for an urgent appointment - this one had to be my phone since they are about 2 hours away from me - but I was fine with this. Dr Mathilda was really lovely, and we spoke for a while about genetic testing. I wrote down a bunch of notes on what she had to say, while Connor listened in from the side.

Some of the most important notes on my notepad are:

• "genetic testing to help prevent further cancer" - what this means is that if my genes are found to be faulty, it'll then determine the next steps into what types of cancer I could be susceptible to, or that my family should look out for as well.
  

• "If any genes are faulty high chance of breast and ovarian cancer" - this is in reference to the BRCA gene. It can also determine your risk of ovarian cancer as well as breast cancer
  

• "Screening every year" - Once my initial treatment is complete, the cancer doesn't go away. That's why you never hear someone say they're cured of cancer - only "cancer free". I will have to return every single year, to get tested once again to make sure the cancer does not reappear.
  

• "before radio - if mastectomy can avoid radiation - if radiation then skin integrity isn't great for recon" - This one is in reference to genes and how they affect the outcome of radiotherapy. Some genes, if present, are more susceptible to radiation, and if they are present, it's a better route to go down to have a full mastectomy instead. This isn't something I've discussed with Dr Park just yet - and hopefully won't have to - but it's something to keep in mind for the future.
  

• "TP53 - don't google yet" - Dr Mathilda called this the scary gene. It in itself only has a 5% chance to appear in people 30 and under - which is comforting - but it can be the cause of a lot of different types of cancers and other bad stuff. I've taken her advice, and not done any research into it - and I'll advise you not to as well.
  

• "BRCA - prostate + pancreas cancer in men" - this is super important. I had no idea that this gene can pose an increased risk to anyone regardless of their assigned gender, but now I know this, I'll be talking with my whole family once I find out if it is in my system or not.
  

• "yes no maybe test results" - This one is in reference to the fact that test results can come back inconclusive. Which is a little scary, but that's okay.

There are a couple of extra notes on the notepad that I won't bore you with, some squiggles and little things, but these are easily the most important notes that I took down.

Overall, the appointment was very eye opening on how the genetics do play a part in this whole situation, and I enjoyed learning about it all - which is a little strange to say, but again, learning new things, silver lining, yknow?

Next: Chapter 3: Next Steps