DECEMBER 18 — In the week since my last column, I have made a switch to the public healthcare system and found myself hopping from not one but two hospitals.
I had initially planned to go to Kuala Lumpur General Hospital (HKL) but a reader sent an impassioned email to me that made me change my mind.
Dear Lina, if you’re reading this, yes I did go to the Universiti Malaya Medical Centre (UMMC) as you suggested.
Alas, I ended up having to be referred to HKL after all but that’s a story for later.
Lost in a maze
I was rather unprepared for my visit to UMMC.
All I knew was there was a “breast clinic” on Wednesdays.
“Breast clinic? Did they tell you what floor?”
To their credit the random staffers I asked for directions did their best to help me find my way.
After 15 minutes of walking in circles and my achy knee threatening to give way, I was very much tempted to just run home.
My inner drama queen wanted to just lie down in the hallway in protest but I had other things to do, damn it all, so eventually I found the promised land.
For other seekers of breast ailment succour, here’s a quick guide:
The Breast Surgery division, part of UMMC’s General Surgery division, has outpatient clinic consultation sessions every Wednesday from 8am to 5pm.
While there are limited walk-in slots you will have a better chance of seeing a doctor if you bring a referral letter.
Surprisingly many people I know do not know this one caveat — it makes a big difference in what you’re charged, depending on where you get your letter from.
You will pay more if you are referred via a private GP or hospital so if money is tight, find the time to visit your nearest Klinik Kesihatan.
My friend did think I was slightly mad to rush right after a dilation and curettage (D&C), aching and bleeding, without painkillers mind you, just to get a letter.
I would suffer that again just not to pay a lot more after blowing through nearly RM10,000 in the last month just to get a diagnosis as well as remove suspicious uterine polyps.
Seeing all my appointments, procedures and expenditure detailed in a spreadsheet was sobering but I also think I now deserve a “Congratulations! You did not have a nervous breakdown!” plaque.
Within a month, the cost of all the doctor visits + diagnostics + unexpected procedures (D&C): Nearly RM10k
— Erna Mahyuni (@still_ernamh) December 12, 2024
Private tests are expensive but they're fast and buy you time to get treatment earlier.
Not everyone is as lucky. pic.twitter.com/lN3LuJC3MB
What’s next?
Something else I appreciated was that after I spoke with surgeons, I was introduced to a lovely volunteer from the Breast Cancer Welfare Association (BCWA).
She let me know about BCWA’s initiatives including peer counselling and handed me a helpful guidebook about what to expect as a cancer patient.
“Contact me any time!” she said, as she handed me her BCWA business card.
Unfortunately, my whirlwind series of procedures were still not over.
The very next morning I had to purchase a very large needle for RM462 and hand it to radiology so they could use it on me.
The needle had a fancy name: UltraClip Dual Trigger Breast Tissue Marker that you can have a look at if you’re as morbidly curious as I am.
After all that, how did I end up needing a referral to HKL?
The answer, dear readers, is money.
Cancer is expensive
My cancer type is triple positive — meaning that my tumour cells have oestrogen receptors, progesterone receptors, and higher than normal levels of human epidermal growth factor receptor 2 (HER2) receptors.
It constitutes 10-20 per cent of all breast cancers and while it is a fairly aggressive cancer, it is also very treatable because it responds well to existing treatments.
The suggested treatment for my current stage (Stage 2b) is neoadjuvant chemotherapy (chemotherapy done prior to other treatments) along with an infusion of a drug called Herceptin to target the HER2 protein.
I was also asked if I wanted to add another drug to the mix, Pertuzumab, but alas it costs RM10,000 a dose and is not subsidised anywhere, and I would need at least one dose a month, which would add up to a lot more than I earn a year.
UMMC being a semi-government hospital would not be able to subsidise Herceptin for me so the only thing they could do was refer me to HKL in the hopes the latter could do what they couldn’t.
When positivity is essential
I won’t lie and say that this has all been easy, or that I’ve been unbothered through it all.
It is easy to dwell on dark thoughts when faced with the enormity of a cancer diagnosis.
Living is so expensive.
Death would be quicker and cheaper.
Why bother, why bother.
I like giving myself timed pity parties — let myself cry for an hour or give myself an afternoon to “rot in bed” as Gen Z calls it.
Then I get up and get on with whatever I need to do because the earth still spins, the sun still rises, and right now I am still breathing.
My mother was given just months to live decades ago and she angrily declared that it wasn’t up to doctors to tell her when she would die.
Why too, would I give up, when my diagnosis is what some other cancer patients wish they had instead?
Maybe I can’t get that new expensive drug but I can still get chemo and radiation.
I can still get surgery, still easily get to the hospitals I need to go to, and I don’t have to pray I get into a study because my cancer is so rare that existing treatments don’t work.
Having breast cancer, one of the most common and heavily researched cancers there is, means that I have an excellent prognosis and all I really need to do is show up.
“Asalkan usaha, Na, boleh saja tu,” (As long as you try, Na, it can happen), my mother would say and I will remember that on this long, storied journey, wherever it leads in the end.
* This is the personal opinion of the columnist.
