Demystifying chemotherapy

Pats and I attended a session called ‘Demystifying Chemo’, which was run by two senior chemotherapy nurses, and was held in the Macmillan centre at the hospital. As we’d been away on holiday it felt like ages since we had been to the hospital – such a nice feeling!

The workshop was scheduled to be a 3-hour session. Each person had a partner with them and we were asked to complete an initial questionnaire around what our preconceptions of chemotherapy and some of the side effects were. The nurses then went through the questionnaire and talked around each subject. I think everyone had different ideas and thoughts around differing areas and it was a really useful session. 

They also told us about the phone app called Cancer Emergency Response Tool (CERT) which is downloadable for free from the App Store. It allows patients to rapidly manage symptoms that need urgent hospital assessment and we were asked to input the hospital’s 24-hour emergency number which would be dialled from the app should it be needed.

We were all provided with a free A5 Macmillan chemotherapy organiser folder which held various sections relating to our treatment and pages to store important information and contact numbers. If we were planning to travel a distance they said it would be advisable to take the folder with us so that in the case of an emergency, any other hospital or medical establishment could see exactly what treatment we were having.

They recommended that we keep a record of how we were feeling throughout each of our treatments, recording our mood, levels of fatigue, what food we ate and medication etc. There was also a notes sections to record any questions, concerns or effects we wanted to talk to the chemotherapy nurse or our oncologist about. She also recommended that each time we come in for treatment to ask for a copy of the letter they send on to our GP to keep in the diary. When coming in to have our chemo, we should also ask the nurse to write down what treatment we’ve had and what our blood results are in the book.

The nurses said there would be days when we don’t feel amazing – the ‘sofa days’ they called them, but they recommended writing down one thing in our diaries at the end of each day that made us smile.

The nurses went through absolutely everything with us, explaining what chemotherapy does, how it affects the immune system and why they measure red and white blood cells and platelets (red cells carry oxygen, white cells are for the immune system and platelets are to do with clotting). The first day of our treatment is classed as day 1 and the cycle runs through to day 21. From day 1 to 7 our immune system will be at its lowest, slowly increasing from day 7 to day 14 and by day 21 it should be nearly back to normal.

They recommended that we invest in a digital thermometer. A normal body temperature is 37C and anything that is between 36-37C is normal and okay. If it’s around 35C or 38C that’s when we’d need to take action. I asked if we should take our temperature every day which they said no to – only if we were feeling unwell or had symptoms. I could see myself getting a little neurotic about doing that so was pleased they’d said not to!

They then went through a whole variety of potential signs and symptoms of an infection and how vigilant we must be in terms of spotting one – the side effects of chemo can be very similar to symptoms of an infection. No word of a lie, it really does put the fright into you when they say how quickly an infection can develop. You must not sit up throughout the night and wait until the morning if you have a temperature and you must call them straight away if you have symptoms. But they did re-iterate that it’s common sense, e.g. flu doesn’t come on instantly, it develops gradually with a few different symptoms. Following this part of the workshop, we could easily see that infection is likely to be a combination of symptoms rather than just one.

With regards to infections, they advised us to not come into contact with or to allow people to visit our homes who had been unwell, were feeling unwell, have a temperate or a bug or who have been in contact with ill people. I’ve since heard a tip of having an antibacterial hand wash at your front door and asking guests to use it upon entering your house!

We were also told not to have any live vaccinations or to have any for 6 months following treatment. We were also advised to get a flu vaccination.

The nurses talked about food and nutrition and said we should basically follow the diet of a pregnant lady. No pate, no unpasteurised soft cheeses, no raw or uncooked meats and no shellfish or undercooked eggs. We should wash all fruit and vegetables thoroughly (even bagged salad) and ensure that everything is well cooked. Don’t risk eating things that are past their sell by date.

My darling hubby was the first to ask if we were allowed to drink alcohol whilst having treatment (which all raised a laugh!). The nurse said she had meant to bring this up herself but had forgotten and said that yes we could have a drink, not to go mad obviously, but if we wanted to have a drink we could towards the end of the cycle and not to have any at all the night before our treatment either. She said takeaways were also allowed!

Chemotherapy works by attacking fast dividing cells – cells that are in the process of splitting into two new cells. Cancerous cells keep on dividing until there is a mass of cells. This mass of cells becomes a lump – a tumour. Because cancer cells divide much more often than most normal cells, they are more likely to be killed by chemotherapy.

The way chemotherapy drugs act by killing dividing cells also explains why chemotherapy causes side effects. It affects healthy body tissues where the cells are constantly growing and dividing. The skin, bone marrow, hair follicles and lining of the digestive system (gut) are examples of cells that are constantly growing and dividing. Your hair is always growing, your bone marrow is constantly producing blood cells and the cells of your skin and the lining of your mouth and digestive system are constantly renewing themselves. We learnt that the lining of our mouths is renewed every 3 days! You obviously don’t notice this as new cells regrow and we swallow the dead ones.

The nurses suggested we buy a soft toothbrush and use a salt water mix to rinse the mouth out after eating. They specifically said not to use Corsidol mouth wash either.

They then talked about hair loss and skin changes. The hospital give you £120 towards a wig through their own supplier. You can’t have your hair treated with colour or a perm due to the chemicals. If hair loss was a side effect of the chemo we were having we can use henna or organic hair colour when it starts to grow back.

This useful infographic shows the detailed effects of chemotherapy on the body in an interactive format.

Finally at the end of the session we were shown around the day unit where we would be having our treatment. Hand sanitisers are everywhere in the hospital, but more prevalent here due to patients’ immune systems being compromised. Even the door handle into the ward has a sanitiser that dispenses gel upon gripping it. 

It was here that I ended up getting really upset. I saw a lady with a head scarf on who was wheeling the trolley she was connected up to that was full of her chemo drugs off to the loo with her – another kick of reality. That is actually going to be me in a few weeks’ time I thought. Another lady got upset too and whilst we shed a little tear, clinging to our husbands, the nurse who was with us was so lovely and supportive. Even another patient who was having treatment at that time came up to me and reassuringly put her hand on my arm. She said that seeing it here like this is the worst part, that when you’re actually having it it’s all okay.

We were there for over 4 hours in the end and although there was so much to take in, we were so pleased we’d had the opportunity to attend. I think the nurse said they were the first hospital to run these sessions, and statistics show that those who have attended are far less likely to call the emergency number as they are better educated as to the effects and symptoms of their treatment. I don’t know if these sessions are being run nationally but if you are about to undergo treatment I would thoroughly recommend attending one.

My Mum and Dad had very kindly sorted an issue I’d had with my car after it had been fixed in the garage, and after we had collected it from them, Pats and I drove back home separately. Pats’ parents were due round for dinner that evening and I have to admit I did shed a few tears in the car on the way home – they needed to come out after taking all that in!

Conventional vs alternative cancer treatment? 

Anyone who has been diagnosed with cancer will be all too familiar with the feeling of being bombarded with information. From booklets, leaflets and info sheets from the hospital and charities, to books and the myriad of information available on the internet (some of which isn’t necessarily true or helpful and a lot of it is very frightening). It’s easy to feel very overwhelmed by your diagnosis and with the whirlwind of beginning treatment there is so much to take in.

Well meaning friends and relatives filled my inbox with research, statistics, things to try and I filled my time reading books, websites, blogs and articles. I welcomed information on alternative treatments, and was grateful that people had been kind enough to think of me and send on different possible avenues to explore. I was also reading a book called “Choosing To Heal: Surviving the Breast Cancer System” by Janet Edwards, which I’d picked up in the library section of the complementary therapies centre where I was having acupuncture. I’ve always been interested in, and have regularly used complementary therapies such as reiki, reflexology, acupuncture, aromatherapy and crystals etc.

The more I read about the “cancer system” and possible alternatives to conventional cancer treatment, the more confused I became.  How could the hospital be recommending treatment to help to cure me, yet be part of a system, or ‘establishment’ that wasn’t looking after my best interests?

I know some are particularly dead set against conventional cancer treatment and I fully respect others’ own individual views. I admire and am pleased for those who have walked away from medical treatment and have had successful results. It’s such a personal, and difficult, decision to make. When you’re still relatively young, or at any age for that matter, and are looking down the barrel of a weapon loaded with cancer – with your life being the gamble – I decided it was a risk I personally didn’t want to take.

I know that there are many amazing professionals working every day to help people battle and fight this disease and to help find a cure and extend people’s lives. The progress that has already been made in terms of increasing survival rates over the years would not have been possible without the research and advancement in medicine and technology. If I had been born a few decades earlier my prognosis probably wouldn’t have been as it is today, and for that I must be thankful.

Once I’d finally made the decision everything seemed a little easier to cope with, no questions over your head about whether it was the right or wrong thing to do. Now I just had to crack on and get through it.

Results of re-excision op and meeting my Oncologist

I’d been at home pretty much 24 x 7 for the few weeks after my surgeries, due mostly because I couldn’t drive after my ops and my car was in the garage having its gear box and cam belt fixed. We won’t even go there with how much that is costing, but thankfully my dear parents came to the rescue with a loan to cover it! But I’d also felt like being a hermit. I wanted to shut myself away from the world – home was my haven, it felt safe, secure and, most of all, private.

An old colleague had been in touch over the last few weeks having heard about my diagnosis. She’d offered to come and pick me up and take me out for a drive in her new car and go for a picnic. It still touches me deeply just how kind and generous people are.

I’d been feeling sick to the stomach thinking about what they might say at the appointment that afternoon. Would it have grown since the last op? The IVF could have showed its effects..feeding it when I thought it was all out. Would the margins not be clear again and they’d tell me I’d need a mastectomy. Jesus it really was utter torture.  Be positive I kept telling’ve no reason to think negatively about it. Other than the previous appointments I’d had that ended in horrid news. Stop it!

The trip out at lunch, eating a picnic by the sea, really helped lift my spirits and completely took my mind off the results – it was just what the doctor ordered.

Later that afternoon Pats and I waited in the normal waiting room at the breast services department. After a while I was called through and we passed my surgeon in the corridor. We were shown into a consulting room and introduced to the doctor – an Oncologist. He was a really lovely chap, slightly eccentric and he had a light hearted, easy going and humorous manner about him.

He quickly told us that the operation had been a success, there was nothing left and that the margins of the tissue they removed were all completely clear. “Yey!”, I exclaimed. No more operations needed. Oh my God I actually wanted to kiss him – what a relief!

After a quick re-cap of my medical history, diagnosis and treatment to date the doctor went on to talk about chemotherapy and why they wanted to offer it to me. Whilst he said that everything seems to have been removed successfully they know there is a possibility that some cells could have escaped before the operation. They wouldn’t definitely have escaped, but some might have and there is a risk that people who have an operation for breast cancer can run into problems with breast cancer in the future. It might be a completely unrelated cancer on the other side, but there is also a risk that it will come back in the breast. Ways to reduce that risk as much as possible are having the surgery as well as radiotherapy to sterilise the remainder of the breast in terms of any potential cancer cells left behind.

He went on to say that there is also a risk  that the cancer may come back somewhere else in the body. To reduce that risk as much as possible they offer drug treatments that go all around the body, and because some cells may have escaped before the operation this will ‘mop’ them up effectively.

He said it’s much more likely that I’ll be fine and if they don’t give me any treatment I’ll be fine, but by having chemotherapy they can take approximately 25-30% off that risk and roughly another 25% off by having hormone treatment. The reason for the chemotherapy is to reduce the risk – it’s not a guarantee but it does take a fair amount off the risk.

He said the lymph glands were clear which is good and that means the risk is low. The tumour was grade 2. Grade is what it looks like down the microscope – 1 being where the cells are trying to look normal and 3 where the cells are “higgledy piggledy”, so grade 2 is in between. The staging (mine is stage 1) relates to size and how big the tumour is and whether any lymph glands were involved. He said you could have a big grade 1 tumour or a small grade 3 tumour. Mine was 24mm so it wasn’t big but it also wasn’t small. He said that overall if they combine all that together then there’s a good chance that without any treatment the cancer won’t come back – but there’s an even better chance with treatment that it won’t come back. All the drug treatments reduce the risk of running into breast cancer problems in the future.

He did ask if I wanted to look at the exact risk to equate to the exact benefit, which whilst I was inquisitive I was more than happy to go on the basis of what they recommended was best for me. He said every Oncologist up and down the country would advise the chemotherapy, radiotherapy, Herceptin and hormone treatment to reduce recurrence risk and that’s what the team at the hospital has advised for me.

I asked what difference the grade 2 and HER2+ diagnosis has on my rate of survival. The doctor had spent 4 years in a laboratory studying HER2 so this was his area of specialism. Traditionally HER2 positive meant that the tumour is more likely to be aggressive and that the cancer is more likely to come back. That has been a mantra in and around the Western world for the last 20 years, but he said that the more we learn about HER2 positivity the more we learn about sub-types of cancers.

He said HER2 positive tumours tend to be grade 3, not low end of grade 2 which mine was and they tend to be oestrogen receptor negative, not strongly oestrogen positive like mine was. He said that ladies with a big grade 3, oestrogen receptor negative, HER2 positive tumour tended to have a poorer prognosis, but that has been changed radically by Herceptin making it much, much better.

He went on to say that the tumour I had was different to the typical HER2 positive tumour. It was very strongly oestrogen receptive positive, which makes it less aggressive in some ways and it was also low end of grade 2 – these are all things that are less risky. But it was also HER2 positive and he said he thinks they’re going to be finding out as time goes by, that Herceptin has less of an impact on survival because my survival is better than that of an average HER2 positive tumour. He said he didn’t think there is anybody brave enough not to offer me HER2 treatment today, but possibly in 10 years’ time they might not be offering ladies with my type of tumour Herceptin treatment as it may play less of an important role.

In my case there are all sorts of things that put my tumour in a better prognosis group and whatever my risk is, chemotherapy will take 25-30% off that risk. Hormone treatment will take another 25% off the risk and then Herceptin will take another 40% off what’s left so it’s shaving a lot off the risk.

We then went on to discuss the side effects of chemo and he said  they’re able to get people through it pretty safely these days. He said that chemo does come with a bad reputation these days of causing nausea, vomiting and hair loss and all sorts of things, but that they’re much better at managing the side effects of chemo. Typically there will be 6 lots of treatment – once every 3 weeks (a total of 18 weeks of treatment). I would have a cycle of chemotherapy and then go and see him in the clinic just before the next one and have a blood test, and if all okay I will have the next chemo a couple of days later.

They use very good anti-sickness tablets today and he said that most people aren’t sick. Some mild to moderate nausea is common, but more than that is unusual and if I am one of the few people who are sick they would change the tablets. He said that it does make people pretty tired, more tired in the first week then they go back towards normal …and then they do it all again!

The doctor said that breast cancer chemo does cause hair loss – but it does come back, and sometimes its curly! He then went on to talk about the cold cap. I mentioned the concerns I had having heard that the chemo wouldn’t therefore go to that part of my body. He said they wouldn’t offer the cold cap if there was any increased risk of recurrent breast cancer. It works reasonably well for 30% of people. I asked if he would recommend it and he said it’s a personal choice – if I wanted to give it a go I should give it a go. He put me down to try it. He said it would make the chemotherapy session last longer as I would need to have the cap on for 45 minutes before the chemo starts and for 45 minutes afterwards too so I would be in the chair for 1.5 hours longer. He also said that they also offer a heavily subsidised wig which I said yes to.

Talking more about side effects he said that the chemo can cause a sore mouth, constipation, diarrhoea, sometimes a rash and photosensitivity so I would need to wear a hat/sunblock when going outside. He said the other thing they get most concerned about with chemo is that it supresses the immune system – it will go down and then come back up again. Chemo targets fast dividing cancer cells, but also cells in the body that help fight infection. So if I did get an infection when my immune system is supressed it could potentially become serious quickly.

He went on to explain that they have a system whereby if I did have a temperature whilst having chemo I would have a special number to call which has an oncology nurse at the end of the line 24×7. If they thought I might have an infection brewing, they would get me into hospital, give me antibiotics by IV and ask questions later. The degree of immune suppression is not as much as is for bone marrow transplant, but it’s enough for occasionally infection to become a serious infection quickly. He said the mortality risk associated with chemotherapy is very low and its focused around the type of people who sit at home and don’t want to bother anybody and end up with an infection. He said they have this big mechanism for giving antibiotics to lots of people when most of them probably would have been alright but they just want to be sure. He advised it would be good idea for me to get a digital thermometer.

I was offered a one-to-one session with a senior chemotherapy nurse or alternatively we could attend a group session called ‘Demystifying Chemotherapy’ that is run by two senior chemotherapy nurses. The doctor said the session was very popular and gives a chance to connect with others going through the same experience, plus other people will ask questions that I may not have thought of.

He then went on to discuss the potential effects that chemo will have on my fertility. It affects the ovaries and breast cancer chemo is fairly typical at affecting ovarian function. At my current age (the risk increases with age), there is a 50% chance I will go into early menopause. It’s more likely – 85-90% – that it’ll stop my periods. But there is the chance it will switch off my ovaries permanently.

He said there is a chance that my ovaries could also sneak back on line, and I may not notice. Apparently every now and then he gets ladies turn up at his clinic saying they haven’t had a period for two years but that they’re pregnant. It does tend to happen to people in their early 30’s but it wouldn’t be impossible to happen for someone in my age group. I will also be on Tamoxifen and they don’t like people getting pregnant on Tamoxifen because it can cause foetal abnormalities. They therefore like to “plan” a pregnancy so if I wanted to get pregnant, I’d have to come off the Tamoxifen, wait 4 months and then try, going back onto Tamoxifen afterwards (for 10 years in total).

Is there any evidence that getting pregnant increases risk of recurrence of breast cancer he asked? No, apparently there isn’t. He said there are two conversations to have – one is what is the risk of having a child and leaving it without a mother if the woman has a problem with breast cancer – in my case that risk is very low due to all treatment I’ll have had. He said there are some scenarios where he would advise ladies against it due to the risk of the cancer coming back.

The other is what is the risk to me of getting pregnant? There are retrospective controlled case studies that have followed pairs of ladies of a similar age who have had a similar type of breast cancer. There doesn’t seem to be any difference in risk of recurrence in those who have had a child and those who haven’t. He said that as a medical establishment, they don’t recommend getting pregnant until 2 years after treatment has finished. This is a time that is apparently plucked out of the air – there is no science behind it!

The doctor advised that I have a peripherally inserted central catheter (PICC) line fitted. I mentioned that I don’t have a problem with needles or injections, but he said that the “red dragon” chemotherapy drug, Epirubicin, that I’ll be offered can have a nasty effect on veins (but this is incredibly very rare). It’s more common to have problems trying to find a suitable vein and it can be painful trying to get the cannula into the back of the hand. The PICC line is a thin plastic wire inserted into a vein using ultrasound. There is a valve sticking out of the end and it needs flushing once a week.

After he had answered of all my questions we finished the session and Pats and I walked away feeling relieved we’d received good news about the surgery, but were also worried about the potential side effects of the chemotherapy.