Breast cancer: Practical advice from a working Mum
Self-examination: In case this is the only paragraph you read, please learn how to self-examine your breasts and do it every month. Breast cancer that is caught early is much more treatable, so if you have any concerns see your GP and get checked out. Don’t wait. More often than not, the lumps and bumps we find in our breasts turn out to be benign and completely harmless, so just because you find something it does not mean you have breast cancer.
Open and read our 5 point breast awareness PDF to get yourself fully informed on this topic.
There are lots of books and articles on breast cancer, so I thought it might be useful to write down some practical notes and thoughts from my personal experience – please remember that everyone’s experiences will be very different.
- A staggering 1 in 9 women will get some form of breast cancer.
- Men can also get breast cancer.
- The survival rates are increasing.
- If you find a lump or are concerned about changes in your breast - see your GP.
- I have learnt that there are many different types of breast cancer, and every case requires a treatment plan specifically designed for that individual.
- Nearly everyone I talk to knows someone who has been affected by breast cancer.
- Don’t be afraid to ask questions about anything you are concerned about and use the resources available in books and online.
- Learn how to examine your breasts and do it regularly.
Some positive things that have come out of it all:
- Discovering how wonderful and supportive my family and friends are (including many friends I had only recently met).
- Meeting many amazing women who have had cancer and making some lifelong new friends.
My diagnosis
In March 2008 I realised something was wrong. I examined my breasts and found an area that was more solid than the rest - as if I had suddenly developed a muscle in my breast. I booked to see my GP, who did not seem too concerned but referred me for a mammogram. Two weeks later, near to my 43rd birthday, I had the mammogram and then also had an ultrasound. The radiologist wanted to do a biopsy - it would be a stressful two-week wait for that appointment, and then three weeks until the results.
Everyone kept telling me not to worry, but in my particular case I knew it was probably breast cancer as by now my nipple had changed, and become inverted.
The surgeon and breast care nurse explained gently that I had breast cancer. I was almost relieved that at last, after a seemingly endless seven weeks, I could finally discuss treatment. The tears certainly flowed and the reality of the diagnosis set in.
The cancer had also spread to my lymph nodes, so they removed 11 out of the 25 nodes during surgery.
The surgery:
I had a mastectomy on the left side and was in hospital a few days.
- The nursing staff in Haywards Heath were wonderful.
- Pyjamas that button at the front are the best option due to the chest drains and tubes.
- I had some discomfort from my chest drains but the other women on the ward didn’t. I was in for a few days and then was able to go home, but you must be sensible and not overdo it. Accept ALL offers of help with shopping, ironing, housework, childcare etc and ASK for help. People are generally wonderful and are pleased to be able to do something useful, but they don’t always know what to do.
- As I had my lymph nodes out as well, I had to be extra careful with my left arm and shoulder to avoid getting lymphodema (swelling in the arm). This is potentially a very painful condition. So do the exercises you are given regularly and protect your arm. You can get DVDs and booklets from places like Breast Cancer Haven*.
The chemotherapy
Chemotherapy can be tough and will affect everyone very differently. I am hesitant to say much about my experiences as it is so individual, but I will write a few thoughts.
- The drugs: I had 6 sessions over a course of 18 weeks. The first three were a drug combination called FEC and the second three Doxetaxal.
- The treatment cycle: In each course of treatment Week One is when I felt pretty rough, Week Two I was on the mend, Week Three just getting back to normal, then ‘bam’ the next treatment. I found it important to have someone take me to chemo and back home again afterwards, but do tell them you might not be in the mood to chat that much!
- Sickness: I was very sick the evening after my first treatment, so they altered my anti-sickness drugs and I was not as sick the next time. Make sure you are really honest with your medical team, as they can alter your drugs to help avoid sickness. I also found I was very restless and agitated for the first couple of days after my treatment and had very strange dreams.
- PIC line: As the chemo drugs can be very aggressive on your veins, some hospitals like to insert a PIC line in your upper arm/elbow, rather than inserting a canula in the small veins in your hand each time. The line stays in for the duration of your treatment. I agreed to this, but in my personal situation both the lines I had became infected very quickly so I chose not to try again.
- Acupuncture: I had an acupuncture session before each of my chemo sessions, which I am sure helped with sickness and anxiety.
- Side effects: It is common to get various different side effects from the drugs – I got oral thrush which was horrendous, but they gave me some preventative medication for my future sessions. My eyes seemed more sensitive to light.
- Avoid germs: You do need to avoid people who are unwell and any risk of bugs or germs, as your immunity is very compromised. Your immunity is at its lowest 7–10 days after each treatment. At one stage, I did end up in hospital for nearly a week as my white blood cell count was at zero, which meant a high risk of infection.
- Nails: One horrible side effect for many people is that your nails become weaker and you may lose them completely. I lost the nails on my fingers, but not my toes. They are still not as strong as before, although a friend said hers are the opposite and much stronger now.
- Hair-loss: I decided to try the ice-cap to try and avoid losing my hair. A friend of mine had success with it. However, I hated it! I don’t like being cold and it was like plunging my head into a bucket of ice. I chose not to use the ice-cap and did gradually lose my hair. Also, many women do lose their eyebrows, eyelashes and some body hair (although annoyingly the hair on my legs seemed to remain intact!). Your hair grows back and you forget quite quickly.
- Wigs: Some women buy a wig straight away, some don’t wear one at all. I did eventually buy a wig, although never really enjoyed wearing it. As it was coming up to Christmas I wanted to look ‘normal’ when socialising and in photos - vain I know. Your breast care nurse will give you information about suppliers. Book an appointment, have plenty of time, take someone with you whose judgement you trust and have fun trying some wigs on! Some people opt for something completely different, others want to have a wig that is very similar to their real hair. I had hoped to have a few different wigs for fun - but they are expensive!
- Hair re-growth: It is quite common for your hair to grow back differently to how it was before – thicker or thinner, or maybe curly! A big section of my hair has been growing back with a dodgy 70s crimped look, which has finally grown out now. As I result I still have my hair short, although I want to grow it longer again. There are some positive points – it is thicker and I don’t need to have highlights at the moment! Find a good hairdresser, if you don’t already have one, someone you can really talk to, who can cut your hair well as it grows back. My hairdresser has been fantastic – very supportive and encouraging and lots of fun as well.
The radiotherapy
Radiotherapy can be hard work, as it requires going to hospital every weekday for 3 or 5 weeks, which is very tiring. If the hospital is a long way from your home then the travelling can really tire you out.
- Make sure you get lots of information before your treatment starts, and ideally a tour round the radiotherapy unit - this really helped alleviate my anxiety about what to expect.
- As I had my lymph nodes removed, I had 5 weeks of radiotherapy. The last two weeks just on the under arm area.
- I drove myself most days for my 5 weeks of treatment, but once or twice a week friends or family drove me there to keep me company and break up the routine. I was quite happy to be there on my own, but many people like to have someone with them.
- The first session takes a while, as they are setting everything up specifically for your treatment plan. After that the sessions are very short – my last two weeks I was only in there for a couple of minutes – after a 35 minute drive to get there.
- The treatment involves removing your upper clothes and lying in an awkward position with your arm raised for a short time! The staff leave the room while the treatment is happening. It can be a little uncomfortable lying there but apart from that it is fine.
- Moisturise, moisturise, moisturise! This really is important. Your medical team can recommend which unperfumed products to use, although I used a special aloe vera gel from the Penny Brohn Centre and had no problems with my skin on my neck, chest and under arm. I may have had the same good results using one of the standard products such as E45. However, no-one mentioned that it is important to moisturise your back as well so I did have some problems with the skin on my back which was red and itchy for a while.
- People had warned me that radiotherapy does make you tired. I felt fine for the five weeks of treatment and then a couple of weeks later tiredness really hit me. Again, everyone will react differently.
The Herceptin/Lapatinib trial
My type of breast cancer is the one in five breast cancers that overproduce a protein called HER2, which makes the cancer particularly aggressive and fast growing. Herceptin is a drug given to block the HER2 protein. I was asked if I would take part in a trial to test Herceptin with another drug called Lapatinib. After thinking it through for some time and talking to various friends with some experience in this area I agreed to do the trial. I ended up on the ‘arm’ of the trial, which included taking both drugs for 12 months.
- Herceptin is taken intravenously, once every 3 weeks for 12 months. I did not have any noticeable side effects, although my veins were a bit wrecked after the chemo, so the nurses did sometimes struggle to get the canula in. After the first few treatments, I had a nurse come to my house for a couple of hours for my treatment, which was great as it meant I did not have to travel down to Brighton and I could just sit and read or watch TV, or chat with the nurse. It is worth asking to see if homecare nurses are available in your area.
- Lapatinib is on trial so it is unlikely to be widely available for many years (although I believe it is already used to treat advanced cancer). I had to take tablets every day in the morning half an hour before food for one year.
- It felt wonderful when the year was up and I finished the treatment.
- The trial lasts for 10 years in total.
The Tamoxifen
Tamoxifen is an anti-oestrogen drug that was developed over 30 years ago. It is used widely to treat breast cancer.
- I am taking Tamoxifen for five years, which involves taking one tablet every day.
- I have been lucky, as I have not suffered some of the side effects that many women have, such as hot flushes. It may have caused other minor niggly side effects, and may also have contributed to my developing fibroids and polyps in my uterus, which I had to have removed under general anaesthetic.
- Combined with all the other drugs and treatments I have had, my menstrual cycle has still not settled back to normal.
Telling your children
Everyone needs to decide when and how much they are going to tell their children, with a lot depending on their age and personality.
- My daughter was five at the time and we bought a great book called ‘Mummy’s lump’ to help explain what was happening. It looked like all her other books, with lots of pictures, and was very useful.
- After the surgery, my daughter didn’t want to sit on my hospital bed or cuddle me initially, until we realised she was worried that it was contagious like chicken pox. As soon as we explained that she couldn’t ‘catch it’ she was more relaxed.
- I personally think it is important to tell your children what is happening, but perhaps not the potential seriousness of the situation.
- Remember older children will hear things at school and on TV about the ‘Cancer’ word, so better to inform them of the facts and talk to them yourself about what is happening. Older children can also help and support you during treatment.
- You will need the help and support of partners, family and friends to help with young children during your treatment.
- I also found the reaction of other children interesting – some were fascinated by my hair-loss, wig, then very short hair, and openly asked me questions. Others ignored the situation completely.
- If you are concerned at how your child is coping during or after your treatment, there are lots of people who can help, so see your GP or contact a cancer support centre, such as the Olive Tree Cancer Support* or Breast Cancer Haven*.
Complementary therapies
- I have enjoyed complementary therapies for many years, and believe that acupuncture, reflexology, and massage have really helped me during my breast cancer treatments.
- There are some wonderful centres offering support and complementary therapies around the country. If you live near Crawley in Sussex, go to the Olive Tree Cancer Support – a wonderful and nurturing environment, with many different treatments and seminars available, and lots of support.
Other thoughts:
- Nutrition: There are many different views on the links between diet and breast cancer, which I will not go into here, but I think everyone agrees eating a variety of healthy fresh food is very important. Eat lots of Superfoods and have treats in moderation. Many of the websites have great recipes and useful nutritional information, as do centres like the Penny Brohn Cancer Care* and Breast Cancer Haven*.
- Supplements: I chose to take the advice of my oncologist regarding specific supplements, as some may affect the impact of the chemo drugs.
- Support groups: everyone is different, but I found my breast cancer support group very important when I was going through my treatment. It was great to be able to talk things through, hear what other women were experiencing, cry and laugh, with a group of women of all ages going through a similar experience, over a very important cup of tea! I have made two very good friends through the group, who I see regularly to have a good natter and moan about breast cancer, before chatting about everything else going on in our lives.
- Breast reconstruction: This is not for me at the moment, but I know two women who have had successful reconstructions this year, which they are very happy with.
- Specialist underwear and swimwear: The choice of post-surgery mastectomy bras and swimwear is improving. There are some specialist websites and shops now selling pretty, colourful bras and more stylish swimwear – you just need to shop around. There is a list of some suppliers at the end of the article.
And now ...
It was wonderful to pass the two-year all clear stage. I still worry about every niggly health issue in case it signifies something more serious, but on the whole the worries lessen as time goes by. I have a mammogram once a year, and still have my trial check-ups, which means I see my oncologist more frequently than patients not on a trial. I still get tired sometimes, although my oncologist reassures me that it is very common in breast cancer patients.
I think the increased publicity and awareness about breast cancer is fantastic, but I am still amazed at how many women still do not check their breasts regularly.
*Also read Dr Alistair Ring’s article on Breast Cancer Awareness in the Focus Health section.
*Useful information:
Breast Cancer Care: www.breastcancercare.org.uk
Breast Cancer Haven: www.thehaven.org.uk
Cancer Research: www.cancerresearchuk.org
Macmillan: www.macmillan.org.uk
Olive Tree Cancer Support: www.olivetreecancersupport.org.uk
Penny Brohn Cancer Care: www.pennybrohncancercare.org
Books - Mummy’s Lump: http://www.breastcancercare.org.uk/healthcare-professionals/publications/health-and-wellbeing/*/changeTemplate/PublicationDisplay/publicationId/18/
Post surgery underwear and swimwear:
- About the girl: www.aboutthegirl.co.uk
- Betty and Belle: www.bettyandbelle.co.uk
- Chantilly Rose: www.chantillyrose.co.uk
- Eloise: www.eloise.co.uk
- Nicola Jane: www.nicolajane.com
- Marks and Spencer: www.marksandspencer.com (search for post surgery)
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