Meeting my cancer surgeon.
I can recommend both the practice coupled with Robert as my cancer surgeon without any hesitation.
Reminder – check your breasts!
After my diagnosis on the 28th of April, my younger sibling had asked the surgeons and specialists that they worked with for recommendations. Consequently, Robert’s name came up more than once. As a result of those recommendations, I arranged for my GP to write a referral and took the first available appointment.
Cancer Surgeon concerns
I was super apprehensive about meeting my cancer surgeon.
Firstly, what if I didn’t like them?
Secondly, what if I didn’t feel safe with them?
Thirdly, what if they were dismissive of my concerns?
My housemate drove me to the appointment, and my younger sibling facetimed in as my support person.
Meeting the cancer surgeon
I’d read up on Robert in the meantime. It was obvious that he had a lot of expertise and experience to offer. Beyond recommendations, and looking at his profile, I had no other way of assessing a surgeon.
I was more concerned about whether he would be a good “fit” for me, given my very ambivalent feelings about health professionals.
I employed my health/ medical statement. Under these circumstances, that statement sounded like this:
Health/medical statement – meeting my cancer surgeon
“I am neurodivergent, and I have a history of trauma and abuse. It’s important to me that you to explain what you are doing especially when you are touching me.”
“When we are talking, I may need you to repeat things. Also, I may need to write things down so that I can refer to them later”.
Robert seemed to take that in his stride well, and that made me feel a lot safer immediately.
He said to me that he would make notes for me and I could take them with me.
I’m sharing those notes below.
Refinement of diagnosis
He explained to me that I might hear different terms that meant the same thing as all language changes over time.
As a result of this, I needed further testing; blood tests and a Contrast Dye mammogram.
Robert advised that surgery was necessary. He thought at this point that a wide local incision with a sentinel node biopsy was the most appropriate course of action. Robert also explained that a mastectomy was an option at this time.
I asked about the bilateral mastectomy. Due to the fact that he was now officially (in my mind) my cancer surgeon, I wanted his opinion. His perspective was that based on what we currently knew, a bilateral mastectomy was a radical step. Part of his rationale was that there was no family history of breast cancer.
One thing I liked immediately with Robert was that he wasn’t rushing to absolutes. He told me all the options but explained that so much depended upon the clarification of the HER2 status, and factors like how what the test results from the tumour itself were and also the results of the sentinel node biopsy.
Robert told me that because my cancer was hormone-receptor-positive, endocrine therapy (also known as hormone therapy) was automatically part of the appropriate treatment options. He advised that he would refer me to an oncology endocrinologist for that step, and that would be post-surgery.
At this stage, the cancer surgeon thought, based on the size and nature of my cancer, that chemotherapy would not be necessary. That was subject to change, dependent upon the HER2 results.
Herceptin was only going to be a treatment option if the cancer was found to be HER2 positive.
Booking the Contrast dye mammogram
When Robert’s PA was booking the Contrast dye scan for me, they asked if I wanted to just do the left breast or if I wanted to do both breasts. There was a price difference of over AU$100.
I paused for a moment, and there was something that urged me to have the contrast dye mammogram done on both breasts – despite being more expensive. We were able to book that for Friday May 07th.
Cancer surgeon debrief with housemate
My housemate was driving for me that day – I was way too anxious to drive! I asked them to take me straight away after the appointment with Robert to have my blood samples taken so that was done. I had taken the day off to meet with the Cancer Surgeon, and I was going to have to take the Friday off as well.
Additionally… Trying to organise the moving, having inspections of our old house every Wednesday and Saturday. I was feeling very overwhelmed by it all. I was also in a massive Fibromyalgia flare. That flare seemed to last from May through until surgery in July.
In the car, my housemate asked me some questions that were profound – to the point I had to think about them for a few days.
The question was simple: what do you want right now?
I was all task-focused.
“Well, firstly, I want to go and get the blood tests done today. Then secondly, I have the scan on Friday. Thirdly, we have the second open house on Wednesday. So I need to go contact my manager and arrange to have the day off on Friday… Then after that, there is next open house on Saturday and…”
They asked me again. “No, what do you want right now? What do you need to navigate this successfully?”
It struck me – the answer was time.
I suddenly realised that I wanted time.
Time to deal with all the damn medical appointments. I was feeling increasingly guilty about all the time off work. The impact of my time off on my team was also concerning me by this time.
Additionally, I needed quiet time to absorb and integrate all the information I was getting. Then there was so much reading I wanted to do to educate myself a bit more and to ensure that I was making well-informed decisions.
In terms of my religious practice, I craved time to meditate, contemplate, pray, do rituals, make offerings.
We desperately needed time to get moving organised.
For the first time in my life, I experienced what I have now named face hunger. I desperately wanted to see my Beloveds (friends and family). I’m an introvert, this *need* was completely foreign to me!
My housemate (and chauffeur) observed that trying to work full time wasn’t going to give me that. They asked me to think in the meantime about what the best course of action for me was, right at this point, and moving forward.
We revisited the impact of surgery on our household, our move. My housemate reiterated their commitment to being my primary support through this, come what may. And they asked me to think about the time question.
I promised that I would.
Cancer surgeon debrief with sibling
Once again that night I was on the phone with my younger sibling. At this time we were making a point of having a debrief after the appointments. We agreed we were feeling very confident with Robert as my cancer surgeon. Together we reviewed the information from the day, fact-checking our understanding. The fluidity of the situation was also something we discussed at this time. Overall, I found I preferred to use the term fluidity instead of saying uncertainty. Linguistic frameworks were becoming a major coping strategy for me.
My younger sibling simply emphasised that we could only take it one step at a time. I like planning, it makes me feel in control. I had to release that or else I was just going to overthink everything. In other words, I think that is part of the reason language became so important to me through this experience. Overall, the way I talk about my experience is still important to me. I still get very terse now when other people attempt to reframe my experience using words they are comfortable with as opposed to the language I am using.
Hot tip: when speaking to someone who has cancer, listen actively to the language they use and then mirror it.
If people find that hard to deal with, they need to seek support from their support network. You are central – support comes in, and those around you need to learn to dump out.
I had already had an appointment with my psychologist the day before meeting with my cancer surgeon. Having a psych degree myself, I’m very pro therapy. We discussed my strategies around communication and decision making.
To clarify, perhaps it doesn’t seem important to have consistency or perhaps to even have a relationship with a therapist or GP when life is going ok. However, notably, the fact that I had a pre-existing relationship with a therapist proved extremely beneficial once I was diagnosed with cancer. I didn’t have to establish that relationship and rapport, I didn’t have to go searching for someone who was the right fit for me, I already had them as part of my wellness team. The same was true with my GP.
I would strongly recommend finding a GP you have a good rapport and build that relationship. Ditto with a counsellor or therapist.
Ensure that you are vigilant around your self-examination. Train yourself to check your breasts/testicles routinely, and monitor your bowel habits and your urine output. These are our body’s early warning signs, and we don’t have a lot of awareness of them.
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