The secret world of breast cancer: 17 surprising things I wish I’d known

October is breast cancer awareness month. You are probably aware of breast cancer in some way. I was – for much of my childhood my mum was undergoing treatment for it, and shortly before I turned 10, she died from it. But despite that experience, I was blissfully unaware of many things about breast cancer until I was diagnosed with it last summer. Here are some of the things I know now that I wish I had known then.

1. There are many different types of breast cancer

Before I had my biopsy, breast cancer was breast cancer. As I anxiously waited for the results, Google searches would lead me to pages about ductal carcinoma in situ, an early breast cancer that doesn’t spread. In my head, I rehearsed the doctor telling me I had that. In real life, she told me I had that and another type – a “grade three” cancer that she said was “triple negative”. The way she delivered this told me this was much worse.

Prof Richard Simcock, chief medical officer at Macmillan Cancer Support, says there are four categories that are used to describe breast cancers and determine what treatment someone needs. First, doctors will talk about where it has developed from – usually it comes from the milk ducts (ductal) or from the glands (lobular). They will then look at the number and size of the tumours. The grades give an idea of how quickly the cancer cells are growing – grade three is the most aggressive and is most likely to spread. Finally, they look at what the cancer cells are sensitive to. The “negative” in mine meant that it wasn’t sensitive to certain hormones – which meant drugs I had heard of, such as Tamoxifen, would not work on it.

“Women often compare themselves to their neighbour or friend who has also had breast cancer,” says Antigone Johnstone-Burt, a clinical fellow in genomics at Macmillan, “but they may not have had the same type – they might say ‘my friend had chemo and she had a recurrence’ and we have to explain that theirs could be different.”

Also, triple negative is strongly associated with carrying a cancer gene. I don’t know what type my mum had, but if it was triple negative and I had known, that would have been a good reason to seek genetic testing years ago.

We should probably talk about breast cancers in the plural. I should tell people: “I had a breast cancer, or two.”

2. The treatment isn’t the same for everyone

For me, treatment consisted of chemotherapy, surgery and then radiotherapy. For others, things are done in a different order, or not all of them are needed.

Obviously, the less of this you have to go through the better, although there is something reassuring about the doctors throwing the kitchen sink at it. I have met people who were worried because they weren’t having all of the treatments. Don’t be afraid to ask why your doctor is or is not suggesting treatments.

3. ‘Chemo’ can mean lots of different things

The word chemotherapy covers a multitude of drugs delivered in a variety of ways. Chemo can involve just taking a heavy-duty tablet, or sitting in the hospital being fed the drugs intravenously. I had the latter, with a “port” in my chest so I didn’t have to have a new cannula put in my arm each time. Half of my chemo consisted of two drugs, paclitaxel and carboplatin, which my body coped with quite well. The second half was another two called epirubicin and cyclophosphamide (commonly known as EC). After my first dose, I vomited throughout an episode of The Great British Bake Off and beyond, and subsequent treatments were reduced as a result. Other types of breast cancer mean different drugs, and people might tell you they coped with EC but the paclitaxel was more difficult.

4. If you have one of the genes, your risk is huge

For the general female population, some studies show an 11% chance of getting breast cancer before you are 80. For those with the BRCA 1 or BRCA 2 cancer genes, the risk is up to 79% and 77% respectively.

“Having a BRCA mutation is like driving very drunk,” says Simcock. “You won’t necessarily crash but you are less safe than other people. There are things you can do to try to mitigate the risk, such as healthy eating and exercise, but the odds are stacked against you.”

I found out I have the BRCA 2 gene, and I suppose that helped me answer the question “Why me?”, which, Simcock says, many people struggle with. Sometimes, the closest thing to an answer for why they are present is “accumulated genetic errors” – these aren’t the so-called cancer genes, but subtle differences that have developed in your body and build up to the stage where you are at a higher risk of getting the disease.

5. You can look really healthy when you have cancer

I was riding my bike to work every day, playing tennis, eating well and looking as healthy as ever when I got my diagnosis. The only symptom I had noticed was pain, which I put down to a muscle strain until I poked about and found the lump. It was only a while after they began treating me that I started to look grey and old.

6. Your lymph nodes say a lot

Your armpit is home to up to 40 lymph nodes. When you have a lump in your breast, doctors will want to check them out because if the cancer has spread this is usually its first port of call. If it has, you might have to have them all removed. Even if it hasn’t, the doctors will typically take some of them out to check, even if you have a mastectomy or surgery to remove the tumour.

Do tell doctors if you’ve recently had a Covid or flu jab before your scan – I didn’t and this caused a lot of concern because my lymph nodes had swollen.

7. Chemo can push you into menopause

Yes, a stage of life that can come with so many downsides is just another thing to contend with when you are being treated.

Sometimes the doctors actively try to put you into menopause – 80% of breast cancers are sensitive to oestrogen and by suppressing your ovaries they are trying to stop the tumour from growing and spreading. For people with triple negative that is not an issue, so it really is just another side-effect.

Johnstone-Burt says some suffer with “really big symptoms” and that joint aches and night sweats can be a problem. Simcock says it can be hard to tell patients that they can’t have hormone replacement therapy because it could make the cancer come back.

I didn’t really notice it during my treatment, but now the hot flushes frequently wake me in the night and my joints creak. I am in my late 40s so there is a chance I will come back out of it – the doctors told me this could happen a year after my chemo ends – although that would mean I’d have to go through it all again at some point.

8. There is a tablet for everything

It is reassuring to find that pretty much everything that happens while you are being treated has happened to someone before, and the doctors and nurses always have an answer.

It is more alarming when they give you drugs to combat side-effects before they have even happened. It is like the worst party bag ever – a collection of drugs to stop you from vomiting or running to the loo. Sometimes, taking one thing means you might need to take another to combat its side-effects. My white blood cells dipped as a result of my chemo so I was prescribed some injections to help. These could cause severe bone pain, so I was given some painkillers in case this kicked in. If I took them, I would need to take something else to protect my stomach lining. The good news is that my bones didn’t hurt.

9. It involves talking a lot about your bowels

You will be surprised how many people – doctors, nurses, other patients – want to know how often you have been to the toilet and what it was like. In my first week of treatment, the answer was “not for days”. I was in huge pain until my partner was dispatched to the pharmacy three times in one day to buy different laxatives.

Pretty much everything they give you to make you better can have an impact on your insides, and if, like me, you are given immunotherapy, the doctors are particularly alert to the dangers of colitis. Be prepared to lose any inhibitions you might have about describing what goes on in the bathroom.

10. You can save some of your hair

One of the worst side-effects of many chemo drugs used to treat breast cancer is hair loss. Before I started my treatment, the oncologist told me that without any intervention I would lose my hair within about three weeks and it wouldn’t grow back until after the treatment ended.

The intervention available is a cold cap: a hat that chills your scalp while you have your chemo and protects the follicles from receiving too many drugs. It is horrible. You spend hours suffering the worst brain freeze headache of your life, and as your hair thins – which in many cases it will before your treatment ends – it gets more painful. But for me, it was worth it. I was able to keep most of my hair through my first lot of drugs. On the EC (epirubicin and cyclophosphamide combination), it started to fall out: a week after the treatment I would wake to a bird’s nest of hair on my pillow and feel dreadful. But there was still enough to stick out from under a hat and give the impression of a headful. I know I couldn’t have coped with cutting off or losing the lot, and the wigs I tried did not help.

Other people take control and get theirs cut or shaved. This would make for more comfortable chemo sessions, but if that’s not for you then the cap is worth a go.

11. Nasal hair is really important

When you hear about chemo and hair loss you perhaps don’t think of anything below the scalp, but it affects everything. On the plus side, I didn’t have to shave my legs all summer. On the negative side, I realised that nasal hair has more than one job: as well as stopping things going up your nose, it stops things coming down. When my nose started dripping, I realised the hair inside had all gone, and I missed it. I never left home without a tissue again.

12. Fatigue isn’t the same as tiredness

Before all of this, I thought fatigue and tiredness were synonyms, so when I was warned of the former I expected to feel a bit like I’d had a late night or a very busy day. How wrong I was. There were days when I felt I was dragging myself along, days when I felt it took all the energy I had – and a big buildup – just to get out of bed. One day I was sitting on the sofa and thought about how I would like to get up and pick up a magazine that was on the other side of the room, but I didn’t have the oomph to go through with it. The Olaparib tablets I am taking for the next few months have fatigue as a side-effect. I keep forgetting and then wondering why some days I just want to sit down. If you are an active person this can be a bit of a shock.

13. You still have to be vigilant if you have a mastectomy

Having a mastectomy does remove most of the breast tissue, but there is still some left, and that means there is a chance the cancer could return. Radiotherapy reduces the risk further, and there are tablets and other therapies that are designed to tackle lingering cancer cells and stop them from developing in future. Even with all of these, the fear of recurrence lingers.

14. They weigh your breasts before reconstruction

Before I went in for my mastectomy and reconstruction, the plastic surgeon told me they would weigh my breasts to make sure that the implants they used would be the right size. The day after the operation, he told me how much they weighed. I’m not going to share that detail but I will say that it has added a new dimension to following recipes.

15. Some people choose knitted knockers

Not everyone opts for reconstruction. I was discussing my upcoming mastectomy with someone in the hospital and she asked if I wanted to see her “knitted knocker”. I wasn’t sure Ihad heard her correctly, but there was only one answer either way. She reached into her bra and brought out exactly that – a handmade woollen prosthetic. She said she hadn’t fancied the idea of implants pressing down on her. Others choose to stay flat.

16. There are lots of places to get advice

Cancer charities and those devoted specifically to breast cancer have websites, phone lines and centres that you can turn to for help and information. Breast Cancer Now will put you in touch with someone who has been through the same thing as you and can give you advice. Future Dreams has support groups and practical courses, including a headscarf-tying course that I can recommend. Macmillan and Maggie’s have people to help you claim benefits if you are struggling with your finances.

17. It doesn’t necessarily put everything else into perspective

After one of my friends was diagnosed with cancer, their partner told me they no longer sweat the small stuff, and I have spent a long time wondering if that would happen to me. It hasn’t yet. I can spend hours dwelling on trivia.

The diagnosis did show me one very important thing: my main ambition is out of my hands. Out of all the things that went through my mind – I have never been to Australia, never written a novel – the most worrying was that I might not see my son grow up. The thing I want most is to watch him become an adult and there is only so much I can do to ensure that ambition is fulfilled. In the meantime, I will still be swearing at Haringey council’s parking permit website.