Can’t believe we are already at chemo round 8, which means I am officially halfway through chemotherapy!
Chemo round 8! That means we are halfway through chemotherapy in terms of number of infusions!
It feels just like yesterday I was receiving my diagnosis when actually it’s been exactly 3 months today.
A lot of people say the diagnostic process is the most difficult part of the cancer journey. While I can’t say if that’s true since I’m still in the midst of treatment, in my case my cancer diagnosis was unequivocally the most traumatic experience of my life.
Well duh, they told you you have cancer, of course it was traumatic!
Actually no. In my case, I did not find out from a nice empathetic doctor who sat me down to tell me I had cancer while holding my hand, ready to answer all my questions.
I found out I had breast cancer when the front desk of the clinic that was processing my biopsy called me to authorise payment on my credit card for additional testing on the tissue sample, because they needed to narrow down my type of cancer. I only got to see an oncologist after three long days, filled with panicked googling.
So today I wanted to talk a bit about the diagnostic process: mostly the facts*, but sharing bits of my own experience too.
* I’m not a doctor - I do my best to research topics related to breast cancer and synthesise them in a digestible way, because that’s what I was missing and would have been useful to me when I was going through my diagnosis. None of the content here should be treated as medical advice. If you’re reading this because you’ve found a lump and you are scared - please stay calm and go see a doctor as soon as you can.
The Diagnostic Process
The diagnostic process usually consists of three elements:
➖ Examination,
➖ Imaging,
➖ Biopsy.
Examination
The medical examination done by the doctor should include checking both breasts and the lymph nodes in the armpits and neck on both sides.
Imaging
This usually means an ultrasound or a mammogram (or both). If any suspicious changes are detected in the imaging, the doctor will usually assign a diagnostic score on the BI-RADS scale from 0 to 6, where anything between 4 and 5 will require a biopsy. 6 is given post-biopsy, once the diagnosis is confirmed.
Imaging alone cannot determine whether the change is cancerous.
Ultrasound
An ultrasound scan uses sound waves to generate an image of the tissue. A bit of clear gel is spread on the skin and then the doctor / technician will move a probe around the breasts and armpits with the image displayed on the screen of the device. Ultrasounds don’t hurt, the gel might just feel a bit cold. The scan is very quick and results are seen on the screen as it’s being done.
Mammogram
A mammogram is an x-ray of the breasts and armpits. The breast is placed between a horizontal shelf and a moving plate, and squished like a pancake while x-rays are beamed through it and two photos are taken (one from the top and one from the side). Then the process is repeated on the other side. Super uncomfortable, but not really painful. The scan itself lasts up to 10 minutes, but it might take a few days to receive the images along with the radiologist’s evaluation.
Mammograms are not the most useful scan for younger women because of the density of our glandular breast tissue. Apparently looking at a lump on a young woman’s mammogram is like finding a polar bear in a snowstorm. However, they will still usually be done as a supplementary imaging technique once we are already in the diagnostic process. For older women mammos are the primary screening method and are best at detecting early changes to the breast tissue.
Breast MRI
The best imaging for young women is a breast MRI, but these are very rarely used in routine screening due to their cost vs the risk of cancer at a young age. MRIs might be used as additional scanning during the diagnostic process once somebody has already been diagnosed.
An MRI (magnetic resonance imaging) uses magnets and radio waves to produce images of the inside of the breast. First there is an injection of dye used for contrast during the scan. Next, the scan itself requires the patient to lie face down in a long narrow tube while your boobs hang in special baskets in the table. It sort of sounds like the machine cannot make up its mind which sounds to use, so there is knocking, whirring, clicking, thumping and banging going on. That goes on for about 45 minutes, during which you need to stay perfectly still, oh and also, it’s claustrophobic af. The results need to be evaluated by a radiologist, so it will usually take a few days to receive them.
My experience:
I scheduled myself in for an ultrasound because a few weeks earlier I had discovered a soft lump in my left boob. I wasn’t really concerned about it (I’m too young for it to be anything serious, right?). I was so unconcerned about it that I don’t even remember when I felt it for the first time, and what I was doing at the time. Checking it just became a thing to add to my to-do list, but I was so busy with work and with my relocation to Singapore, that it kept getting deprioritized. This was around mid-May (I think).
I finally signed up for an ultrasound after a big project at work had ended and I was visiting my parents in Poland for a few weeks. At this point it’s worth noting I had already moved away from Ireland, where I had been living the past 5 years, ready to relocate to Singapore to start my new job and join my husband after 2 years of long distance. Singapore was in strict lockdown and wasn’t allowing any travellers in. I was in Poland waiting for immigration to allow me entry. I was switching roles at Facebook, I had a bit more free time and I wanted to catch up on all my health check-ups. However, because I wasn’t living there permanently, I didn’t have national health insurance in Poland nor a GP. That’s why my story is probably a lot more psychologically brutal than most people will experience (I had to find doctors and arrange my own appointments, I didn’t have a leading physician to take me on the journey and I had to pay out of pocket for all the tests, which meant if additional tests were needed, I had to authorise payment each time).
So July 6 I had my ultrasound appointment. To be perfectly honest the morning of the appointment I almost canceled it, because I couldn’t really feel the lump anymore and so I thought it was probably hormonal. It was just one of many errands I had to run that day. I remember going into a Tommy Hilfiger store before the appointment and asking the sales clerk to put a dress on hold for me, cause I was planning on coming back after the scan.
During the appointment, after I pointed to where I found the lump, the doctor straight away said it did not look good. She gave me a BI-RADS 5 and told me to schedule a core needle biopsy as soon as I could.
A BI-RADS 5 means the diagnostician is at least 95% confident that the change is malignant. I didn’t know this and I was too freaked out to google it. I only found out what a BI-RADS 5 meant after I had already been diagnosed.
Several weeks later after my initial diagnosis I also had a mammogram and an MRI to help see if there were any other lumps lurking around. Luckily there weren’t.
About to get a mammogram. At this point I already had my cancer diagnosis. The mammogram was one of many supplementary scans I had to determine the extent and staging of my breast cancer.
Biopsy
If imaging shows a suspicious change that needs to be investigated, the next step is getting a biopsy. A biopsy is the only way to 100% determine if it’s cancer.
A biopsy is removing a sample of tissue from the lump and then evaluating it under a microscope. The two main types of biopsies used during the initial diagnostic stage are fine needle aspiration and core needle.
Fine needle aspiration
FNA biopsies use a thin needle to draw a small amount of tissue from the suspicious area. They don’t hurt more than a regular blood test. They aren’t that useful for diagnosing breast cancer - this test can at best state if there are cancer cells present in the sample, but not what type it is. There is a high chance of false negatives as well due to the tiny amount of tissue taken during an FNA.
Core needle biopsy
Core needle biopsies use a thicker, hollow needle to take a cylindrical (“core”) sample of breast tissue from the lump. A local anaesthetic is usually given first, cause this one hurts as hell. The doctor uses an ultrasound probe to find the exact spot, then makes a small incision in the skin to stick the needle into the lump. The biopsy needle has a spring attached to it to take the material out quickly. It’s quick and doesn’t hurt, as long as the anaesthetic is working. After a CNB there might a lot of bruising and swelling around the incision.
My experience:
My first biopsy was scheduled for the day after the ultrasound, July 7. I sat in the doctor’s office nonchalantly and bravely, still not quite believing that any of this was really happening. The doctor explained the procedure and started the ultrasound to find the spot.
While scanning the general lump area, he also checked my armpits. He said the lymph nodes on my left side look pathological on the scan and we should biopsy them as well. At this point all my bravery went out the window and I spent the rest of the procedure crying, hating myself for putting it off for so long and imagining my funeral. I didn’t know a lot about breast cancer back then, but somehow I was convinced that infected lymph nodes meant the cancer had already spread and I was going to die.
I hope I’m doing a better job at educating anyone who might be reading this ahead of a possible biopsy.
First of all, statistically 4 out of 5 biopsies confirm there is no cancer.
Second, lymph nodes are there to protect our bodies. They are the pit stops where cancer stops on its way to spread around the body. They are the first place where the cancer drains into, and so it isn’t that uncommon for lymph nodes to be involved. Breast cancer with lymph node involvement can still be stage 1.
The biopsy procedure didn’t hurt and the doctor, even though his bedside manner was shit, did an amazing job on the technical side as I did not even have a single bruise afterwards. I left the clinic knowing I had cancer, I mean it. The way the doctor spoke to me while explaining things, how he said “I’ll see you” instead of “Goodbye” when I was leaving, the way the nurse held my hand during the biopsy with the saddest look on her face.
Waiting for the results was the worst period of my life. Unfortunately it took a full 18 days between the procedure and seeing the oncologist to hear the initial diagnosis (which wasn’t even complete at that point). This meant two things:
1) During these 18 days the lump grew some more, which given the high proliferation rate of my cancer was not great,
2) I spent 18 days in a state of constant, overwhelming panic, not being able to function, sleep or eat.
I was so scared I gave myself limits as to what I was allowed to research on the internet. I tried to distract myself with work, but facing a potential death sentence, I wasn’t able to focus on anything at all. I also felt tremendous guilt as I had ignored the lump for several weeks before checking it out, and I had missed my check-up in 2020 due to the pandemic.
The thoughts and feelings I remember having on the table during my biopsy - it’s cancer, the lymph nodes are pathological, you left it too late, it’s already spread, this is all your fault, you’re going to die and it’s all because you were too busy to prioritise your health - all kept whacking me on the head day after day after day, and it was all I could think about.
I felt disgusted and betrayed by my own body. I couldn’t look at myself in the mirror. For the first week after my biopsy I couldn’t even bring myself to shower, because touching my body made me feel sick to my stomach.
I hated myself, not just my breast, but my entire physical form and entity, because I felt I had brought this on myself. Truthfully I never took very good care of myself. I was a smoker for a long time. I used to drink a lot. I used to party way too much (with everything that sort of lifestyle entails). I never prioritised sleep or exercise. Most of my life I had an unhealthy relationship with food. At work I often let stress eat me up so much that all my cardio came from sitting at my desk with a resting heart rate of 140 BPM. I knew I needed to make changes, but somehow something more important would always come up.
While waiting for the results to come back, sometimes I had better days during which I felt a weird gratitude that this was happening to me, because maybe it was the wake up call I needed to finally get my shit together. But most days I felt like this was payback for all the fucked up things I had put myself through.
Three months later, I now know that only 30% of breast cancers can be tied back to risk factors such as alcohol, tobacco, not enough exercise or too much stress. Further, I will never know if any of these things contributed to my disease forming. Now that I am in treatment I can truly appreciate that it was indeed the wake up call I needed. For real though bod, you could have just given me a broken leg instead.
Diagnosis
The samples taken during biopsies are then inspecting by a pathologist under a microscope. They will determine if:
1) Cancer cells are present in the sample,
2) If so, if the cancer is “in situ” (localised to where it started) or “invasive” (creeping out into the surrounding breast tissue).
If the sample is confirmed to be cancerous, the lab will run additional tests on it to determine the subtype of cancer. In the case of breast cancer, they will check for hormonal receptors and HER2 receptors (I’ll write a separate post about subtypes of breast cancer).
My experience:
July 21 I got a call from the clinic asking me to authorise a payment for additional tests they needed to run on my biopsy sample, specifically immunohistochemistry tests (IHC) which determine the hormonal and HER2 receptors on the cancer cells. I’d done enough research at that point to understand they would only need to run these tests if the biopsy sample contained cancer cells.
July 22 I got another call letting me know my pathology results were available at the clinic for picking up. My mom picked them up for me.
They sat in an envelope on the table for a full 24 hours, silently determining my fate.
July 23 in the morning, I finally built up enough courage to open up the envelope and read the report.
It was invasive breast cancer and it was Grade 3 aggressive.
My hormonal receptors were negative and my HER2 receptors were inconclusive.
The cell proliferation rate was 90% (for reference, 20% is already considered high).
That evening I went to see an oncologist who explained the pathology report to me and diagnosed me with triple negative breast cancer (this was an incorrect diagnosis, but I will get to that some other time).
At that point I had already kicked into execution mode, since I had the last three days to process the news. I was calm enough to ask the doctor all the questions I had and really try to get an understanding of what I was dealing with, what my treatment plan might look like, what other tests I needed to get done and how long I had to start treatment. The priority then became to get me into Singapore as early as possible, so I could start treatment.
Further Diagnosis
After the sample is confirmed as cancer, the next step is to determine whether it has starting spreading. There are two stages of spreading (called metastasizing), regional and distant.
Regional spreading in the case of breast cancer refers to when the cancer has left its cozy little spot in the breast and goes into the closest lymph nodes. As mentioned above, it is expected that the lymph nodes will try to catch the cancer, and so it’s not uncommon for breast cancer patients to have the cancer cells in their lymph nodes. That doesn’t mean it’s not serious. It’s still totally curable though.
Regional spread at the diagnostic stage (I.e. before going into surgery), is determined by an FNA or a CNB biopsy of the lymph node. Regional spread can also be determined during the surgery, at which point the doctor will either remove the sentinel lymph node and testing it in the pathology lab (“sentinel” being the guard, the first lymph node that the cancer usually drains into), or by injecting a special dye into the breast to see if the cancer is present in the lymphatic system (and surgically removing the ones that get dyed).
Advanced spreading means that the cancer has metastasized into distant organs, beyond the breast and the lymph nodes. In the case of breast cancer, the cancer will usually spread into the bones, liver, lungs or brain. Advanced spread means the cancer is at stage 4 and incurable. You can read more about it in one of my previous posts.
To determine the existence and extent of advanced spread, doctors will recommend some more scans, either full-body (e.g. PET scan, CT scan) or ones focused on a particular area of the body (abdominal ultrasound, bone density scan, chest x-ray, etc.).
PET scan (positron emission tomography)
This is a full body scan which checks how the body is working in real time. It starts with an injection of sugar and a radioactive tracer, followed by 30 minutes of napping (no phones allowed so you don’t stimulate yourself cognitively). The rationale here is, cancer cells tend to be metabolically more active than normal cells and so they will absorb more of the sugar and tracer, leading to any tumours lighting up like a Christmas tree in pictures taken by the PET camera. The scanner itself looks like a big doughnut. It’s less claustrophobic than an MRI because the doughnut moves over your body, but your head mostly sticks out on the other side with full access to fresh air. The scan takes about 45 minutes, is not as loud as an MRI and presents an opportunity to take a nap. PET scans are incredibly good at determining whether the cancer has spread outside the breast. They are very expensive though, so insurance will usually only cover them if there is reason to believe the cancer might have spread, or if the patient has an aggressive subtype (like triple negative or HER2+).
CT scan (computerised tomography)
A CT scan uses x-rays that rotate to take pictures of the entire body. It involves drinking or being injected with another type of contrast that will help with the imaging. Sometimes it’s done by the same machine that does a PET scan, so sometimes the two imaging types are combined to create even more detailed, precise pictures of what’s going on in the body.
My experience:
To finish up the story of cross-continental diagnostics, after putting together my plan on July 23, my husband starting working on expediting my entry approval into Singapore. This is a whole other, kind of amazing story I will talk about another time. The important thing was, by the morning of July 29 I was granted approval to enter Singapore. On August 2 (Monday) I flew out of Warsaw and landed in Singapore on August 3. I had to go straight into hotel quarantine for 2 weeks (Singapore’s COVID precautions). I left the hotel on August 17 (Tuesday) at 11:00 AM and one hour later I was in the hospital with a full three days of tests ahead of me. By the end of that week I had all the additional tests and screenings done, results in and a treatment plan finalised.
I had two sets of biopsies on my lymph nodes, because they were in fact, as the doctor had cheerfully told me on the table, pathological. I had a fine needle aspiration which returned negative, as well as a core needle biopsy taken by my breast surgeon here in Singapore just to be safe. This one also returned negative.
Fun fact: my lymph nodes on the left side are reactive on all the scans I’ve had: ultrasounds, mammogram, breast MRI and PET/CT scan. But the biopsies I’ve had both say there is no cancer in them. What’s most likely is my lymph nodes are still reacting to the COVID vaccination I had in July.
Since no regional spread was detected in my lymph nodes, normally I wouldn’t need any additional tests to determine distant spreading. However, I am incredibly lucky to have amazing health insurance through Facebook, as well as a leading oncologist who cares deeply about my anxiety levels, so I also had a PET/CT to confirm that 100%. The tumour did in fact light up like a Christmas tree! It was also kind of weird being able to see what all my internal organs look like. I quite like the shape of my liver.
Today is October 23 and I am three months down the line from initial diagnosis. That’s a full quarter.
At work we pace business performance in quarters and set ourselves quarterly targets. And so since I’m staying away from work during my treatment, let me do a quick quarterly business review of my Cancer Q1: “Despite massive headwinds in the first weeks of the quarter, primarily driven by denial, guilt and anxiety, treatment is now progressing smoothly with performance ahead of goals. Bloodwork is within healthy ranges. The tumour is shrinking at rates far exceeding expectations for the period (55% vs 20% goal with translates into an over-attainment of 230% against target). All stakeholders have expressed satisfaction with the progress. Looking ahead towards Q2 we have high expectations of finalising chemotherapy and scheduling in surgery while maintaining healthy blood results. Some challenges anticipated in the energy management field which should be mitigated with lots of nap time.”
Onwards and upwards.