Diagnosis

Diagnosis

On Wednesday, 28th April 2021, I received my breast cancer diagnosis.

They had found one tumour in my right breast: grade 1 invasive carcinoma.*

*cancer was also later found in my left breast.

Support team

I had my best friend and housemates drive me to the appointment – we had arranged that I would call them when I was finished my appointment.

Another friend met me inside, and they accompanied me into the actual consultations.

I rang my younger sibling once the consultation started and put them on loudspeaker – I think I only dropped the phone once, from memory…

Consultation

The diagnosis was a two-step process – first, we met with the Surgeon, and then we met with the Nurse Counsellor.

My appointment was at 10 am, and I think I was out by 12 (ish). They had told me to allow two hours, and they were efficient, without making me feel rushed.

All the staff I interacted with at the Eastern Health Breast Cancer and Cancer Centre were fantastic.*

*I have their names, I really need to write a proper thank you.

Acknowledgement and gratitude practice has been such an important strategy over the last 12 months for me.

The surgeon delivered the diagnosis, and explained the diagnosis well, complete with pictures. Diagrams always help!

Treatment outline

The surgeon advised that the cancers would need to be removed surgically. At the same time, lymph nodes would be removed. They would, before surgery, inject a dye that would stain the lymph nodes if the cancerous cells had spread. This procedure is called a sentinel node biopsy.

Chemotherapy and radiotherapy were both possibilities, separately or together, before or after surgery or both.

Endocrine therapy would be recommended based on whether my cancer was hormone-positive or not.

The surgeon recommended follow-up genetic testing but advised that was a lengthier process and the surgery needed to happen ideally within a month, but on the outside, within 3 months.

Nurse Counsellor

The Nurse Counsellor took over after the diagnostic aspect was delivered and discussed with the surgeon. They checked my understanding of the diagnosis, and explained all the support services and groups available, essentially walking me through the options.

Bilateral mastectomy

I spoke to both the surgeon and the nurse counsellor about a bilateral mastectomy. I had decided that the Angelina Joliè Solution was the path that I wanted to go down.

Interestingly, both the surgeon and the nurse counsellor said that was a very common, knee-jerk reaction to the breast cancer diagnosis. They both advised me to keep an open mind and discuss my options with my cancer specialist.

Next steps

The next step was to get a referral from my GP to a cancer specialist.

Honestly, how the fuck do you choose/find a cancer specialist?

I was in the fortunate position that my younger sibling has a long professional history in surgical theatre. Admittedly, in another state, but with lots of access to specialists. So we decided that they would ask their colleagues for recommendations.

Tears

We’d done so well to avoid tears, then at the end of the session with the Nurse Counsellor, I told my sibling I loved them.

It’s a phrase that doesn’t come easily to me, especially unprompted.

Tears all round.😔

I cried, my sibling cried, and that set off my friend.

And we’d been doing so well at keeping it together until then!

Tears are good for you, and I’ll be honest – there were many tears through this experience.

I’ve gotten much more comfortable with tears – I’m still pretty repressed on the “I love you” front, even though I think it’s important and I admire people who express their love for their friends and family freely. Like many things, it’s a work in progress 😁.

Care package

I was sent home with a care package that included pamphlets from a number of cancer related support organizations and services.

• Cancer Council
• Breast Cancer Network Australia
• EX-Med Cancer
• Australasian Lymphology Association
• Counterpart

Primary support commitment

Afterwards, my best friend and housemate picked me up, and I broke the news to them in the car.

I explained the diagnosis, the surgery, the possibility of chemotherapy or radiotherapy, the potential impact of those treatments, the expected time off post-surgery for recovery (6 – 8 weeks), and the overall prognosis.

We had to have a very real talk about the fact that I have no local family members, the new lease that we had signed, and whether it was reasonable of me to ask them to essentially be my carer for the duration. This friend is not my romantic and/or sexual partner – this kind of situation is a big ask.

They thought it was completely reasonable to make that request of them. That’s kind of an understatement – they actually thought it was ridiculous of me to consider that they would do anything else!

You can’t however, in my opinion, assume that someone is going to be your ride or die.

You have to obtain informed consent.

Courageous conversations

We discussed worst-case scenarios; surgical complications, metastasis, complications with chemotherapy, and the inability to accurately predict actual recovery time.

I expressed my wishes in terms of advanced care, what I considered appropriate medical intervention, and my views on organ donation and assisted death.

I’m not saying it was a comfortable conversation, or even that they necessarily wanted to discuss those last topics, but I needed to sign off on them, as it were.

These are courageous conversations that we all need to have, preferably when it’s not necessary – that line can disappear in an instant. Lack of knowledge can mean a lot of long term grief and guilt, for those you love the most. As a funeral celebrant, I have seen the lack of these discussions leaving a terrible legacy, and in some cases, causing significant rifts in relationships and families.

Aftermath

Then I got them to take me to the Pancake Parlour. I rarely eat pancakes, but that was what I wanted.

Was I eating my feelings?

Maybe.

But that short stack with strawberries was *amazing*. 😋

That evening, I spoke with my sibling again, and we did a recap / debrief on the day.

I spent the rest of the evening in contemplation, meditation, and devotion.

Postscript

Gentle Creatures (my version of “Reader“),

This blog post was surprisingly difficult to write. A feeling of tension in my body as I went through my paperwork, my notes, and my journal. There were multiple pauses and breaks just to acknowledge the trauma of hearing a cancer diagnosis. I felt anxiety and nausea, I was aware that my breathing became shallow a couple of times.

These are all symptoms of the anxiety and panic attacks I started to experience during this last year.

I’m incredibly grateful to my Beloveds who had more lived, first-hand experience of anxiety and panic attacks and who were able to share their strategies and coach me. I’m also grateful to my GP and my psychologist who gave me the professional support and treatment that I needed.

At least for me, this is why marking anniversaries, particularly the first ones, is so vital in terms of releasing the trauma of the event. Your body remembers, and often, at the moment, you are too busy coping and dealing to fully process. With a cancer diagnosis, you also are not ‘safe’ – it’s only the start of the experience, and you are very aware of that.

Cancer PTSD is a very real thing.

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