Today is the 4th of July and I’m celebrating – not because of anything to do with the USA, but because today I had my final radiation therapy session, meaning all the dramatic parts of my cancer treatment are over! My last post described my diagnosis with breast cancer, which was detected early thanks to the breast screening programme. This post is about my experience of cancer treatment, and I hope it may be helpful to anyone else going through the same thing. It’s VERY long because a lot happened – feel free to skip things or ignore it all! I found it very helpful myself to hear other people’s breast cancer stories. Each person’s experience is a little different, of course, but knowing what may happen can make it easier to cope. Some people sail through their treatment, while others have multiple complications. I had my share of complications, but have made it through in pretty good shape in the end.

I was diagnosed with breast cancer through the screening programme a few days before Christmas 2022, aged 60 years; I was a fit and active person with no signs or symptoms that anything was wrong. For those interested in the technical details, my final diagnosis, confirmed after surgery, was mixed invasive breast cancer. It consists of 40% invasive cancer of no special type (NST), also known as not otherwise specified (NOS): this is the most common sort of breast cancer. The other 60% of my lesion is invasive micropapillary cancer. That is much rarer and I’m yet to encounter anyone else with the same thing (do let me know if you have it!). I also have some ductal carcinoma in situ (DCIS), which is a pre-cancer, where the abnormal cells have not moved beyond the milk duct where they formed. My total lesion measured 32mm and is the highest grade, grade 3, meaning it is a fast-growing cancer. Micropapillary cancer is known to be aggressive and has a high rate of recurrence. In most people it isn’t picked up until it has already spread, so I am very lucky that mine was detected early. I had 5 lymph nodes removed (3 sentinel nodes plus 2 within the lesion) and all were clear of cancer, a very good sign that the cancer has not spread. However, there was lymphovascular invasion of the lesion, meaning there were small blood and lymph vessels involved; that means there is still potential that cancer cells have spread to other parts of my body. My cancer is strongly positive for receptors to the hormones oestrogen and progesterone, but negative for the growth factor HER2.

Surgery

Surgery is the most important part of breast cancer treatment: the aim is to get those nasty cells out! Some people have a mastectomy and others do not. The recommended procedure depends on the type of cancer and its size in relation to the total size of the breast. I have been buxom since puberty and for once the size of my breasts – generally a curse – was an advantage, as I did not need my entire breast removed and had a wide local excision. The surgeon took great care to ensure the entire lesion and adequate margins were removed; if that doesn’t happen a further operation is needed. On the morning of surgery I went to the breast clinic and sat in the mammography machine while a radiologist inserted a fine wire into my breast and through the area of concern. This was awkward but painless. It was also worthwhile since the surgeon did a great job and got everything necessary out.

As well as the tumour excision I had a sentinel node biopsy, where the lymph nodes that drain the area of the lesion are removed to check for any spread of the cancer. This was done through a second incision in my armpit. Again, great care was taken to identify and remove the appropriate nodes. The day before surgery I went to the nuclear medicine department and had an injection of radioactive tracer followed by scans to check it was detectable in the area of interest. During the operation the surgeon used a small scanner to check for ‘hot’ nodes. As a further check, once under anaesthetic I was injected with blue dye which makes the relevant nodes visible. This has some interesting side effects, which luckily I was warned about: my urine was fluorescent blue for a while, and my first poop after surgery was bright green! I still have some blue marks on my breast from the dye – I’m told they can take a couple of years to disappear completely.

My recovery from surgery was mostly straightforward. I spent one night in hospital, which was fine. I had been told that I would get very little pain and I did not quite believe it, but it was indeed true; I just took paracetamol and ibuprofen for a few days. My wounds healed quickly. I did the prescribed shoulder exercises, designed to keep the joint mobile, and was soon out walking again and felt pretty well, though tired.

I did eventually develop one complication, which is pretty common: a seroma. This is where the cavity where tissue has been removed fills up with serous fluid. If the amount of fluid is small it will be reabsorbed, but sometimes there is too much and it needs to be drained away. My breast gradually swelled up so I went to the breast clinic and, after checking it with the portable ultrasound machine, the specialist nurse inserted a cannula into my surgical wound and aspirated the fluid with a syringe. It was completely painless and I felt more comfortable once the extra fluid was gone. I ended up having this procedure three times because the seroma developed again, but the volume was slightly less each time. They drained 300ml the first time, so no wonder my breast was swollen!

Chemotherapy

This was the part of treatment I dreaded the most, and it was indeed the most difficult: it made everything else seem easy! Many people with breast cancer don’t have chemotherapy, and some have it before surgery. I was referred to the medical oncology team after my surgery and once the final pathology results were available, because of the size and grade of my cancer. I met with the oncologist and oncology clinical nurse specialist, who discussed my situation with me in some detail and gave their recommendations. We hoped that I was already free of cancer following surgery and they were now planning to treat my risk of spread and recurrence.

They use prediction tables which combine the results of thousands of similar patients to show the likelihood of 10-year survival from your specific type of cancer, and the impact that various treatments will have on that survival. My risk profile showed that if I stuck with just local treatments (surgery plus radiotherapy), I had a 20% chance of dying of breast cancer in the next 10 years (plus a 9% chance of dying of some other random thing). That seemed a pretty high risk to me! They recommended a combination of 3 other systemic treatments which would act on cancer cells wherever they might be and bring that risk down. A 4-cycle course of 2 chemotherapy drugs (cyclophosphamide and docetaxol) would improve my 10-year survival chances by 5%. Because my cancer was highly sensitive to hormones, hormone blocker pills would improve my chances by 6%. Lastly, bisphosphanate infusions (which I’ll explain later) would add another 2%. So, overall, those 3 treatments would reduce my risk of dying of breast cancer from 20% to 7 or 8%. Worth doing, it seemed to me, and I agreed to go ahead.

Next came a rush to get a few things organised in the short gap before I started chemo. I had blood tests; I picked up a big package of prescribed medications; I went to the dentist because I needed a thorough checkup and all-clear before starting the bisphosphanate; I had my seroma drained for the final time at the breast clinic; I went to a helpful but full-on personalised compulsory chemo education session with one of my family; and I got my hair and headgear sorted out. Not all chemo drugs cause hair loss, but the ones for breast cancer do. There’s a procedure called cold capping, where you wear an ice cap on your head during the chemo infusion; it can prevent hair loss. However, it’s not available in most New Zealand hospitals, and in any case it doesn’t always work and sounds like quite an unpleasant procedure. I resigned myself to losing my hair. It was long, so I got it cut very short, thinking that would be easier. The Ministry of Health gives a grant to people who lose their hair for medical reasons and it can be used for wigs or headgear. I decided not to get a wig (and I’ve heard that many people who do get one end up not wearing it). That meant I could spend my grant on some good turbans and hats.

The actual chemotherapy infusion, which I had on day one of each 3-week cycle, was very straight-forward. It was given at the oncology day unit, which is equipped with comfortable chairs and beds and expert and kind nurses. I was able to relax there for a couple of hours with a book, plus music via headphones, being brought cups of tea on demand, as the cancer-busting drugs slowly dripped into me. The real issue with chemo is the side effects. You are given a range of drugs to prevent these, and those preventers have side effects of their own – it’s like a side effect train! For me the side effects began before I even had my first chemo, with the steroids I commenced the previous day. Those gave me gastric reflux and insomnia. The reflux was sorted out in my next cycle with another drug and I had no further problems with it.

As well as working on cancer cells, chemotherapy affects all fast-dividing cells in the body, and that’s the cause of many of the side effects. Think of all the cells lining the gut; blood cells developing in the bone marrow; the skin and of course hair. I’m prone to gut issues anyway and fully expected to have problems there: I did. Some of the anti-nausea drugs you are given cause constipation and others cause diarrhoea, so it is quite a balancing act! I did have nausea, which is extremely common, but I only really vomited once. Unfortunately, that was enough to cause me problems. I was sick late at night, and after taking my usual blood pressure pills the next day I became very dizzy. One decent vomit had been enough to tip me into dehydration, despite my efforts to drink enough fluids. I rang the very helpful oncology helpline, and the nurse advised me to report to the emergency department (ED). I was checked by a very thorough registrar and given a litre of IV fluids, a new anti-nausea drug and advised to lay off my blood pressure pills for a while. I started checking my blood pressure more regularly (I’ve got a machine at home). Even when I wasn’t dehydrated, it turned out that chemo had cured my longstanding hypertension – at least temporarily! Apparently this is not uncommon and I’m still using less blood pressure medication many weeks later. At my medical review before my 2nd round of chemo, the doctor altered my anti-nausea meds and I had less nausea after that.

Even without nausea, chemo makes eating difficult. Your mouth, like the rest of your gut, is affected and feels horrible. You lose your sense of taste, so there is no pleasure in food or drink. In addition to that, you completely lose your appetite. I had to really make myself eat three small meals a day because I knew I needed that to keep healthy, but it wasn’t easy. There were some things that I could taste slightly – for example, gochujang, the spicy Korean sauce. Yogurt wasn’t too bad and I ate it regularly in the hope it would also help with the bacterial balance in my gut. The texture of food became really important. A smooth soup you can’t taste is not at all appealing. Apparently some people having chemo gain weight, because they nibble away at treat food a lot, but I couldn’t manage that and lost a bit of weight. I had a family member having chemo for bowel cancer at the same time, and eating was also a big issue for him. It was such a relief when my appetite recovered.

One thing that really helped me was keeping a simple diary, which a friend who’d been through breast cancer treatment a couple of years earlier recommended. As a bonus she was able to refer to her notes to tell me about her experience. When the second cycle of chemo rolls around, you can check your notes from cycle one and see a pattern developing – day x is a bad day because of y symptom, on day z your mouth will start feeling better, etc etc. It’s quite reassuring.

In the third week of my first chemo cycle my hair started coming out in big clumps when I washed it. Whenever I took a hat off it would be full of hair. This was quite depressing, and even though my hair was very short it also made a big mess. I decided to reduce the ongoing trauma by having my head shaved, which my sister kindly did for me. It was weird, but also a relief, to be bald. Ever since I have worn a hat of some sort 24 hours a day, even when I’m at home alone or sleeping – I get too cold otherwise! My hair, which normally grows quickly, has just started coming back in the past week or two. Apparently it can take 6 months to develop a full head of hair again. Mine is still too short to tell whether or not I’ve developed the well known ‘chemo curls’, where your hair grows back curly despite being straight previously! Happily for me my eyebrows did not disappear completely, though they did get thinner.

Things get complicated

During my second cycle of chemo things got complicated. As you probably know, chemo causes immune suppression, since the blood cells which fight infection can get very low. The day after each chemo infusion I had an injection of pegfilgrastim, a drug which stimulates the bone marrow to produce more blood cells. I’m told that since this started being given to breast cancer patients, their rate of serious infections and admission to hospital has dropped massively. I gave the injection to myself – it’s just into the belly – but you can get someone else, including the district nurse, to do it for you. Some people get bone pain as a side effect but I had no problem with that. I followed the advice given to avoid infections – I kept away from sick people, wore a mask when I was out, avoided crowds, stopped using public transport, kept away from garden soil and checked my skin regularly.

Still, you can’t avoid every infection. One day I noticed some redness on the skin of my breast. By the following morning the redness had increased in size. I had an appointment with the oncologist that day anyway, and by the time I saw him mid-morning it had really flared up a lot. As soon as he saw it, he said I needed to be in hospital on intravenous (IV) antibiotics. I had cellulitis – it eventually turned out that it was caused by some obscure bacteria (the oncology team had to google it!) that wouldn’t have been a problem at all if I wasn’t immune suppressed. So began an 8-day stay on the oncology ward. I didn’t really feel ill at all, but I was ill. I kept spiking high temperatures for days, so I had to stay on the IV antibiotics. The redness gradually reduced, but then it formed into an abscess around my surgery wound. The oncology team referred me to the breast surgery team, and I went to surgery on the acute list the next day to have the area drained and cleaned. My original surgeon was out of town, so one of his colleagues kindly did the procedure.

I stayed on IV antibiotics for 7 days in all, and it would have been longer if I hadn’t run out of decent veins! Antibiotics are tough on veins and I went through 5 cannulas, not to mention a few failed attempts. When you’ve had lymph nodes removed on one arm, they don’t use it for IV stuff, so I only had one arm to use and choices of veins were limited. Some people have special central lines inserted before they start chemo, but I didn’t have that because the oncology people thought my veins looked fine, and in fact there were no problems with them at first. In hindsight it would have been helpful! Now I was put on the list to have a PICC line (peripherally inserted central catheter) put in, but it has to be done under x-ray guidance and I kept getting bumped down the list by more urgent cases. Since my fevers had stopped, the doctors switched me to oral antibiotics, with the approval of the infectious disease experts. That was a relief! It also meant I was able to get out of hospital. I had a drain left in beside my breast wound, intended to prevent any more fluid accumulating. Cycle 3 of chemo, due to start the day after I was discharged, was postponed until I had fully recovered from my infection and surgery.

My first few days at home were fine. As my break from chemo grew longer, my appetite and sense of taste began to return, which was great. Then I hit another major setback. Eight days after the operation for my abscess I woke in the early hours with a sore breast, which was something new. I took paracetamol and went back to sleep. Then, shortly after getting up in the morning, I noticed fresh blood going into my breast drain, which had drained very little before that. Next I spotted blood on my nightie and discovered I’d started bleeding out through the wound as well. I can tell you that it is pretty scary being home alone and bleeding – this was the worst part of my whole treatment experience! The bleeding wouldn’t stop, despite my attempts to put decent pressure on the wound, so I called an ambulance, and then my mother (who lives next door). I managed to hang on until both Mum and the ambulance arrived, but then I went into shock – I  was faint and clammy and shivery, my blood pressure was very low, and I started vomiting. Not good. The bathroom was like a crime scene with blood everywhere. The ambulance crew were wonderful. The bleeding stopped (the surgeons reckoned later that the breast cavity had filled with enough blood that it created a tamponade effect, putting pressure on whatever was bleeding and stopping it). Once the paramedics had – with considerable difficulty – got an IV line into me, they gave me fluids and drugs and I soon started feeling a little better.

Next step was the emergency department, where I went straight to one of the resuscitation rooms and got very quick attention! I wasn’t feeling too bad by then though. I had various tests and more IV fluids. I saw the breast surgery team yet again, and they decided to operate that afternoon to clear out the haematoma (lump of blood) that remained within my breast and check for any bleeding points. That surgery went smoothly and I was soon back in the surgical ward. The next day I saw my original surgeon – he’d been out of town again when I needed another emergency operation! – and he was happy with my progress. I got home again that day, complete with a new drain and still on antibiotics – I was to stay on both for another 10 days or so. I narrowly avoided having a blood transfusion. My blood count was very low on the day after the bleed, but since I had no particular symptoms of that they decided to wait and see how I went. I was tired, certainly, but I’d already been tired for months. Another blood test a couple of days later showed my count was improving.

A late bleed like this is, the surgeon told me, a ‘super rare’ complication. That means anyone reading this post is very unlikely to have that complication themselves – I was just unlucky! However, I wanted to be honest about my experience, and sometimes things go wrong. People outside the health professions are prone to telling cancer patients things like ‘you’ve got this’, ‘you’ll be fine’ etc etc, but that isn’t always the case. Things are indeed often fine, but I’m a realist and believe it’s important to face the truth: sometimes things get complicated.

Now I had an infection, a bleed, 2 acute operations and a low blood count to recover from, another cycle of chemo was getting further and further away. I saw the oncologist again, and he recommended that my chemo should now be stopped. It had got to the point where the risk outweighed the benefits for me. The longer the delay, the less effective any future cycles would be, and in any case each cycle was a little less effective than the previous one, so I had probably already had two-thirds of the expected benefit, despite only getting 2 of my 4 intended cycles. This decision was no great surprise, as the possibility had been flagged with me when I was in hospital with the infection. I was relieved that I wouldn’t have to go through more chemo when I was already pretty run down.

Bisphosphonates

Once my chemo was abandoned, I was booked into the oncology day unit for my first bisphosphonate (zoledronic acid) infusion – I’m to have these every 6 months for 3 years. This is a drug which strengthens bones and is used for various conditions, including osteoporosis. Bone secondaries can occur with breast cancer, but this drug is also given to people without secondaries who are having hormone blocker treatments, which increase the risk of osteoporosis. Recent studies have shown that it also reduces the recurrence of breast cancer.

The infusion didn’t take long (except for problems getting a line into my dodgy veins) and I felt fine. The next day I had side effects which I was prepared for – I felt completely exhausted and had general body aches. They only lasted one day. A week or two later I developed pains in various joints – an ankle, an elbow and my back – that each resolved after a few days.

Radiation therapy

Radiation therapy (RT), aka radiotherapy, was the easiest of my treatments, though it’s a weird sort of experience. A short course of RT is standard for people who’ve had a wide local excision for breast cancer: the aim is to catch any stray nasty cells that may still be lurking in the remaining breast tissue. Some people also have RT to the chest wall after mastectomy. After an appointment with a radiation oncologist, I had a planning scan. This took quite a while, because as well as doing the scans the radiation therapists measure you all up and figure out the exact position you will lie in during treatment, and document that. I got my first tattoos! These are just tiny dots – three of them – which they use to line you up each time you have treatment. I can hardly see them myself.

The radiation therapists also spent quite a bit of time at the planning appointment explaining everything to me and helping me practise my breathing. Because my RT was done on my left breast, the same side as the heart, they got me to hold my breath during treatment – expanding the lung moves the breast further from the heart, to reduce the risk of radiating the heart. You have to expand your lung to the same amount each time, so you breathe through a snorkel connected to a machine which, at the moment required, only lets you breathe in the prescribed amount of air. I had a panic button I could use if I couldn’t hold my breath for long enough, but I didn’t need to use it. Staying perfectly still and holding your breath for 25 seconds is a bit challenging. I did find it easier each time though.

Because everyone is a different size and shape the planning of the RT to be delivered is quite complex and takes time. Three weeks later I started my 5-day course of treatment. The actual treatment is very quick – the therapists spent more time positioning me exactly right each day than they did delivering the radiation. You don’t feel anything at all from the radiation, and the machine does not enclose you in the disturbing way of an MRI or nuclear medicine scanner.

It’s still early days for me, but I haven’t had any troublesome side effects from RT yet – the therapists explained they may still hit me in the next week or two. My skin was a bit pink after my first treatment, but I have sensitive skin so I expected that. It hasn’t got much worse so far. I’ve got some special cream I was given to apply twice a day to the treatment area to prevent and treat any skin issues. Other common side effects are fatigue and breast swelling/tenderness.

Hormones

Having just finished my 5-day course of RT, tomorrow I start a 5-year course of hormone-blocker tablets! These are very important in preventing the recurrence of my cancer, which is highly sensitive to oestrogen and progesterone. Side effects are similar to what you may get during menopause. It’s not very long since I had pretty bad menopausal hot flushes, so I expect those might return.

Fatigue

In the information you’re given (there’s a lot of it!) about the various cancer drugs and treatments there’s one thing that always recurs as a side effect: fatigue. When I was first diagnosed with cancer, my GP told me that I should expect to feel tired for a year and that was wise advice, I reckon. The tiredness is both mental and physical – of course those things are closely related. I was tired before I even began any treatments. Getting a cancer diagnosis is an emotional thing and I had trouble sleeping for a while and got very tired from that. Waiting is one of the hardest things: waiting for results and a diagnosis and then waiting for the each treatment to begin. I tried a few things to relax, including meditation and lavender oil through an infuser. My GP prescribed me a short course of sleeping pills. I didn’t ever take them, but she suggested just having them there as back up might help me sleep better – it did! Eventually I became resigned to my situation and began to sleep better (except during chemo, when you get a short course of steroids with each cycle, making it very hard to sleep).

One of the best things I did in the few weeks between my diagnosis and initial surgery was to prepare things to make it easier later when I was low in energy. This was a lesson I’d learned from previous experience. In June 2022 I had a wide local excision for a melanoma near my wrist (yes – I was diagnosed with two unrelated cancers a few months apart; fortunately the melanoma was not deep and hasn’t spread). I hadn’t realised how disabled this would temporarily make me: I ended up with no use of one arm for a bit, and then limited use for months afterwards. Since I was unprepared, I had to rely on ready meals for quite a while, and because I’m vegetarian and have a few food sensitivities the choice was limited. (I wrote a post on this blog about vegetarian ready meals if you’re curious about those). This time I was determined to be better prepared, and filled the freezer with homemade meals I knew I would like! If you live alone or don’t have another cook at hand, I highly recommend this.

I also used that preparation time to get a bit fitter, to help me cope physically with treatment. I love walking and get out most days, but it’s a bit of an amble. I started walking more briskly and a bit further and noticed a big change in my fitness. I’ve kept walking almost every day throughout treatment, though sometimes I couldn’t go far, or even walk to the letterbox without getting breathless. There were a few times when I was chained to the house by gut issues. Recently I’ve started finding it easier and can walk a little faster than I have for months.

The exhaustion is a real issue and you have no choice but to adjust to a slower pace of life. There are some periods when being a patient is like a full-time job, with frequent hospital appointments. But overall I’ve spent a lot of time sitting quietly at home – I’ve got through a lot of books! Luckily I don’t mind that, but I know it would be very hard for some people. Social activities are exhausting. Keeping up with household chores is tricky, but I’ve got by with letting standards slip and doing just a little bit on any one day rather than having a big cleaning or laundry session. I’m very privileged in that I’d already retired and didn’t need to worry about going to work – there’s no way I could have managed that most days. My voluntary sessions at a plant nursery have fallen by the wayside for now. Things that require a lot of mental concentration are tricky – I tried them once or twice but felt completely exhausted afterwards. This piece of writing is the most brain work I’ve done all year, and it’s a good sign that my mental energy is improving.

I’m a very independent person, used to doing everything for myself, and it was quite an adjustment needing support from others rather than being the person giving it. However, I realised I had no choice but to get help with some things, and as someone pointed out, people who care about you are pleased to have something practical they can do to support you, so it helps them as well. My family and friends have been a wonderful support throughout. Often that’s been emotional support, which is critical, but sometimes it’s been practical too. For example, my sister from out of town stayed for a few days and did various activities I had no hope of managing at that time – washing windows, mowing the lawn, vacuuming, etc. I usually love gardening, but I’ve done hardly any all year and have paid a gardener to come once a month so things don’t get totally out of control. I hope to get back gardening a bit in the spring.  

The health system

The media is forever telling stories of failings in our health system, and there are certainly issues there: it’s clear that the staff are overworked and under-resourced and people can’t always get the treatment they need. But my experience of the health system has been very good. One advantage of having a serious but common condition is that there’s a streamlined setup for dealing with it. Cancer is still treated with urgency – I know that’s not the case for all health problems. I got all of my treatment in a timely way, except that my initial surgery was probably a week or two later than recommended, thanks to the Christmas break intervening. When I was referred to medical oncology (for chemo etc) and later radiation oncology, I got form letters from those services explaining that they did not expect to see me within the deadline required by the Ministry of Health. For radiation oncology the wait was expected to be 12 weeks rather than the required 4 weeks. However, in both cases I was actually seen within the recommended times. Not everyone will have such a positive experience, but the reality is that people are prioritised according to need. Having an aggressive cancer that was potentially curable if treated promptly no doubt bumped me up the list.

When I think of all the people who have contributed to my treatment, it’s quite overwhelming. At Dunedin Hospital they have included numerous nurses (in surgery and oncology wards, the breast clinic, oncology outpatients, operating theatres and emergency department); doctors (surgeons, oncologists, radiologists, pathologists, emergency doctors, anaesthetists and all of their registrars and house officers); radiation therapists; radiographers and the people who run all the fancy scanners; pharmacists; physiotherapists; laboratory technicians; phlebotomists; receptionists and other admin staff; food service staff; healthcare assistants; orderlies; cleaners; and probably some others I don’t recall or who work behind the scenes. These people were, every one of them, competent and caring. Beyond the hospital, I have been very well cared for by my GP, local pharmacist, oncology district nurses, ambulance crew, Cancer Society field worker and Breast Cancer Foundation chat group members. All I can say is a very big THANK YOU to one and all!

Useful resources

BreastScreen Aotearoa is New Zealand’s breast screening programme.

The New Zealand Breast Cancer Foundation funds research and also provides great support for people with breast cancer. I found their online private peer support chat group helpful, and they have some great online information.

The Cancer Society provides all sorts of support for people with cancer and their families. Its booklets about various forms of cancer are simple to understand and a great resource. There’s one on breast cancer and another on DCIS and you can download them here.

A book I found really helpful is The Complete Guide to Breast Cancer by Trisha Greenhalgh and Liz O’Riordan, two English doctors (one a general practitioner/primary care professor and the other a breast surgeon) who have had breast cancer themselves.