Happy birthday to me! Today I turn 35.

As a gift for my birthday, I’d really love it if you could go and check your boobs please! 🍉🍉

So it’s my birthday. It’s the first once since my cancer diagnosis. I’ll say it upfront, there’s no point hiding it since the topic of this entire post is discussing the risk of dying: on my birthday I cannot help but wonder how many more of these I have left. I’m not trying to be morbid or get sympathy, it’s just a matter of fact: having cancer means that once in a while I have stupid thoughts about mortality. I can’t not think about it, especially on days like birthdays and holidays. To make matters worse, I’m in chemotherapy and so I can’t even get drunk to not think about it.

Anyways.

Last week I finished the first part of my chemotherapy regimen, i.e. I had the 12th round of Taxol (out of 12). As much as I’ve tried to celebrate this milestone, the cumulative effects of the chemo have hit me pretty hard this week and I’ve spent most of the past six days moping around our apartment in sweatpants, waiting for my fatigue and nausea to go away.

Is Chemotherapy Over Now?

Unfortunately not yet.

As explained in the post about my chemo regimen, I still have another four rounds of treatment ahead of me, but with different drugs and this time bi-weekly. The second regimen, called AC or by its pet name “the Red Devil” (due to its bright red hue and terrible side effects), starts December 3. I’m nervous and a bit scared (How bad is it going to be exactly? Does it like, burn your veins or something? Is it true that the nurses have to wear hazmat suits while pushing the meds into the IV? Am I going to be sick for a week afterwards? …and so on), but as per my usual MO, I try to look on the bright side and am excited at least about:

1. Not having chemo on my birthday,

2. Having a full two weeks of break between Taxol and AC.

My hope is that I’ll recover a bit more than usual with weekly treatments, and will be able to enjoy some quality family + friends time exploring Singapore. Let’s see how that goes - so far the furthest I’ve explored since chemo last week was opening the front door for my McDonald’s delivery.

Ultrasound Updates

This week I had an appointment with my surgeon (the doctor who will be performing the surgery to remove my tumour and lymph node(s) after I’ve completed chemotherapy). During the appointment I got an ultrasound scan to check how the tumour has responded to the 12 rounds of Taxol.

You guys! The first chemotherapy has worked quite well! I won’t say by how much the tumour reduced in size (cause I’m superstitious and really scared of jinxing it by sharing the exact numbers), but it’s much smaller than when we started, and also very transparent compared to pre-chemo.

When I first went to get a scan after discovering the lump, the image on the ultrasound showed a big, very black, very dense cloud-shaped blob on the screen. This was Larry the Lump and he looked fucking scary. This week’s scan showed a much smaller blob, and honestly it looked more like a shadow on the screen than anything else.

Although I am still well into chemo, this news got me really pumped for the next phases of treatment and for the future. My doctor said I might even be on track to get a PCR (Pathologic Complete Response - I explain below what this is and why it’s such a huge deal).

My Cancer Card Will Never Expire

This is something I never knew about cancer until I got it: it never goes away.

There’s a reason doctors never use the phrase “you’re cured” speaking to cancer patients, and it’s not because they’re scared of jinxing it. A cure is defined as no traces of disease and a guarantee that it will never come back.

What doctors will say to cancer patients if the disease has been removed through treatment is “no evidence of disease” (NED) or “in complete remission”. This means signs and symptoms of cancer have disappeared, which addresses the first part of the definition of a cure. Unfortunately no doctor is able to guarantee the second part, i.e. that the cancer will never come back.

Cancer is a sneaky fucker. Not only do the cancer cells grow in the tumour, sometimes they also break away from the original site and start floating around your body. A full treatment plan is designed to remove as many of the cancer cells as possible:

• Surgery is meant to remove the original tumour location(s), as well as some of the nearby lymph nodes, which is where the cancer will usually spread into first;

• Radiation is supposed to burn away any potentially remaining cells in the original site and in the lymph nodes;

• Chemotherapy and targeted drug treatments are aimed at killing all cancer cells, including those in the original location and lymph nodes, but also any stray cells that may have broken away from the tumour and might be thinking of settling down in other organs (i.e. metastasising).

Despite all these efforts, there’s no guarantee that treatment will destroy absolutely every single cancer cell in the body. And so cancer can come back, i.e. recur. Depending on the subtype of breast cancer, this usually happens within the first 5 years after completing treatment, but it can also occur within 10 years or even later.

In breast cancer, a recurrence can be:

• Local, which means the cancer comes back roughly in the same spot as the first time (e.g. in the same breast),

• Regional, which means in the same general area (e.g. in the other breast or in lymph nodes under the arms),

• Distant, which means the same cancer as before pops up in distant organs. For breast cancer this is typically in the lungs, liver, bones or brain. This is not lung, liver, bone or brain cancer - it is still breast cancer, but it has recurred and metastasised. A distant recurrence is metastatic cancer or Stage 4.

Local and regional recurrences are obviously difficult to deal with - having to go through the whole process again, chemo and surgery, and more scars and losing your hair again, and putting life on hold for another year.

Distant recurrences, on the other hand, are devastating. The current median life expectancy for metastatic breast cancer is 3 years following diagnosis. At this moment in time, even though there are new treatments being researched all the time, there is no cure.

Statistics show that the annualised average risk of recurrence within 5 years of completing treatment is about 11% for all breast cancer patients, with the highest risk occurring in the first 2 years from treatment at about 15% per year (source).

The overall lifetime risk of any early stage breast cancer patient developing metastatic breast cancer is about 30% (source). This means 3 in 10 women diagnosed with early breast cancer (Stages 0 through 3) will go on to develop Stage 4 - incurable breast cancer - at some point, some during their initial diagnosis (known as de novo Stage 4), some progressing if their cancer is resistant to treatment, some developing a distant recurrence after completing treatment.

The individual risk of a recurrence will vary a lot depending on several factors, including:

• Stage at diagnosis and size of tumour (the earlier the diagnosis the lower the risk of recurrence, partially because the size of the tumour is smaller at earlier stages),

• Lymph node involvement (the cancer having spread into lymph nodes increases the risk of a recurrence),

• Aggressiveness of subtype (cancers that are biologically more aggressive, like triple negative and HER2 positive, have a higher risk of recurrence),

• Genetic predisposition (patients with BRCA 1 and BRCA 2 gene mutations are at a higher risk of breast cancer recurrence, and also of developing another breast tumour independently),

• Lifestyle factors after treatment has been completed (obesity, smoking and a lack of exercise have all been shown to increase the risk of recurrence).

There are still many mysteries surrounding reasons why some people have a recurrence and others don’t. One explanation is that not all the cancer cells were destroyed during treatment, and those that remained passed undetected in scans after treatment. Another theory is that some cancer cells become “dormant” and as such, are resistant to chemotherapy at the time of treatment (this is because chemotherapy targets and kills cells that are rapidly dividing, so if they are not actively dividing, they won’t be killed); (source).

I love the thought of winning at cancer, but unfortunately that’s just not the way it works. There’s no “right way” of fighting cancer and a recurrence happening does not mean the patient did anything wrong. It comes down to bad biology and shit luck.

My ultrasound this week showed that I am doing well in my treatment - and the overachiever in me absolutely loves that. But the truth is this has nothing to do with how well I am battling my disease, how much power or strength I have in me, or how much of a “pink ribbon warrior” (gag) I am. It just so happens that my cancer’s biology seems to be responding well enough to the drugs I’m receiving. Lucky me, for now. This doesn’t mean it will stay this way. It doesn’t mean it won’t become resistant to treatment. It also does not mean that I have any sort of guarantee that I won’t have a recurrence.

That’s what I mean by “cancer never goes away”. Even after treatment is over, I will live with the fear of it coming back for the rest of my life. With HER2+ my risk is higher: 10% to 23% of early stage HER2+ patients will have a recurrence within the first 5 years (compared to 5% of patients who are not HER2 positive). We are also 5x more likely to develop a distant recurrence compared to HER2 negative patients, which then places us in the Stage 4 group (source).

Pathologic Complete Response

Earlier this week my surgeon expressed optimism that I’m on track to get a PCR, a Pathologic Complete Response. A PCR is when there are no signs of cancer in tissue following treatment, either chemotherapy or radiation therapy. The tissue is removed during surgery and then checked slice by slice under a microscope for remaining cancer cells.

My recommended treatment plan includes neoadjuvant chemotherapy, which is chemo given before surgery. Some patients will have adjuvant chemo instead, which is chemo after surgery. (Also some breast cancer patients won’t require chemo at all, or will have it both pre- and post surgery). With neoadjuvant chemo, I’ve often moaned to my friends and family that I hate still having the tumour in my body vs having it removed in surgery straight away. I know I’m in treatment, and I trust my doctors that this is the best treatment plan for my type of cancer, but this stupid thing is still in me, potentially growing and spreading, and there’s nothing I can do about it.

Here’s the thing though: if I had gone for surgery first, and then chemo, there would be no way of telling how well my cancer is responding to the drugs. As explained above, with my type of cancer there is a high risk that there are some stray cancer cells that broke away from the tumour and are circulating in my system, waiting for the chance to settle down and start metastasising. With chemo before surgery, the doctors are able to look at the tumour and see if it’s responded to the drugs. Of course it’s not guaranteed, but the outlook is more optimistic if there are no cancer cells left in the tissue by the time we get to surgery. If the tissue that’s been cut out during surgery (the tumour and the lymph nodes closest to it) contain no cancer cells, there’s a chance that any circulating stray cells would have also been destroyed. That’s why a PCR is so important.

Is surgery still required if the tumour is completely destroyed by chemo?

Yes, because there’s no way to tell if it’s gone without cutting it out and checking for cancer cells under a microscope. The imaging technology that currently exists (i.e. ultrasounds, MRIs, mammograms, PET / CT scans) is not accurate and detailed enough to tell if any microscopic cancer cells were left behind (source).

Does a PCR guarantee that the cancer is gone and won’t come back?

Nope, unfortunately not, and at the moment there is nothing that guarantees the cancer will never recur.

Even with a PCR, it’s still possible that some of the cancer cells became dormant and so were not killed by chemotherapy.

But research has shown that patients who have had a PCR following neoadjuvant chemotherapy have an average reduced risk of recurrence by 80%, regardless of subtype and treatment regimen (source). Amazing as this result is, the caveat is that the study only looked at 3 years following treatment, while more data is still being collected. Doctors don’t have enough information to confidently say if PCR is significantly correlated with long-term survival.

PCR and Risk of recurrence in HER2+ patients

I wrote previously about targeted treatment for HER2 positive breast cancer, including that both Herceptin and Perjeta combined have not been used long enough to generate a lot of data regarding recurrence and survival following this treatment regimen.

One optimistic data point is that a PCR is more likely to occur when a HER2+ patient is treated with anti-HER2 targeted drugs, either one or the other, or in combination (source).

Another really optimistic piece of information is that not only does a PCR reduce the risk of recurrence in early stage HER2+ patients by 67%, but also those who had a PCR while treated with combined Herceptin and Perjeta before surgery and afterwards as well, had a recurrence rate of about 5% (source).

Thoughts About the Immediate Future

It’s my birthday today. I’ll spend it similarly to how I’ve always spent it.

I’ll do a yoga class in the morning. I’ll put on a nice dress and make-up, and this time also a nice wig, and my husband and I will go out for a really nice dinner. This time no wine. I’ll post lots of stories to my Instagram and I will have a really nice day. I’ll start taking out the Christmas decorations the day after my birthday, as per tradition.

This year is different because I can’t help but think stupid thoughts about mortality. However, I’ve promised myself I won’t discuss cancer, metastasis, recurrences or anything even remotely medical for the rest of the day, as soon as I publish this post.

Instead I will focus only on the day ahead of me. I will need to learn better how to take it day by day, otherwise I will drive myself crazy with the recurrence-related anxiety and fear.

Today, silently, I will send out some positive vibes into the universe, thanking whatever good forces exist out there that the biology of my cancer is so far responding well to treatment. I will think happy thoughts about the doctors treating me and those who have been researching treatments for cancer, thanking them for everything they’ve done to help their patients. I will hope with all my strength for a PCR for me and for all my breastie friends I’ve made over the past few months. I will cross my fingers and hold them till they go numb. If I could, through sheer power of will I would wish Larry to fuck off where he came from and hope he never, ever, EVER comes back.

I will close my eyes and as I blow out the candles on my cake, wish really really hard for good luck for the future.