L is for… Lymphoedema

20 Nov

Being an absolute klutz, the risk of lymphoedema really scared me and, before I understood it a bit more, I was convinced I’d get it straightaway. I knew nothing about it before being diagnosed with breast cancer (as if we didn’t have enough to bloody worry about!), but it is an important topic with significant risks, so I had to dedicate a post to it, describing what it is in layman’s terms for any newbies out there and sharing some tales from those who have developed it.

Remember, I’m not a doctor! I’m just repeating info I have been given at various forums and appointments with my LD nurse. Best to have an appointment with a lymphoedema nurse to fully understand your risks and how to avoid it.

LymphoedemaWhat is lymphoedema? This is when the lymph system can no longer effectively drain certain areas of  your body, meaning lymph builds up in the tissue, which then swells up. With breast cancer the most commonly affected areas are your arm, hand and breast on the side on which you were operated as you will have had at least a few of your lymph nodes removed, which may affect the effectiveness of your lymph system.

What are my risks? Everyone seems to get told different figures when it comes to the risks. My lymphoedema nurse told me about a third of women who had a Full Axillary Clearance (all lymph nodes removed, like me) will develop it, compared to 10% of those who had a Sentinel Node Biopsy (where they remove the first 2 or 3 nodes to test for cancer) – although your risk is increased to that of a Full Axillary Clearance if you have radiation to your axilla.

What can I do to prevent lymphoedema? Prevention is best as there is no cure – if it develops it can only be managed and treated so you then have to learn to live with it. There are a number of things you can do to reduce your risk of getting lymphoedema.

  • Avoid cuts, bruises and burns on your at-risk side. Be sensible like wearing protective gloves when gardening, oven gloves when cooking and rubber gloves when cleaning. Also be careful when shaving your armpit and around animals that are likely to bite or scratch.
  • Look out for early signs of infection – including redness, warmth, pain and swelling. If you notice anything see your GP immediately who will prescribe antibiotics to keep the infection at bay.
  • Always use your other arm for medical procedures like blood tests, injections and blood pressure.
  • Do not get a tattoo on your at-risk arm.
  • Avoid insect bites – use a strong anti-repellent or wear long sleeves.
  • Wear a high sun factor to avoid sunburn.
  • Do not lift or carry anything heavy – I was advised no more than 2kg. Particularly difficult if you’re a mum to little ‘uns.
  • Avoid straps that dig into your arm, hand or shoulder. This includes handbags, shopping bags and tight bra straps!
  • Avoid tight clothes, watches or jewellery that restrict your BC side.
  • Avoid extreme temperatures like saunas and steam rooms.
  • Do not do repetitive movements for long durations without stopping (like painting or exercising). Take frequent rests and stretch the arm.
  • Keep your skin clean and moisturised – clean skin is less likely to develop infection and moisturised skin is less likely to crack.
  • Exercise. Following surgery, stick to your physio plan. The gentle stretches keep your joints and muscles working and helps the lymph system develop new pathways to drain the lymph fluid. Once you have recovered, doing other exercise will continue to help your lymph system. I do pilates and swim. Be careful of sports and exercise classes that involve contact that could cause you to harm your arm or involve lifting weights.
  • Keep within a healthy BMI range. Being overweight increases your chances of getting lymphoedema – so best to stick to/get to a healthy weight.
  • Take some precautionary antibiotics with you if you are going abroad. Your GP should prescribe these for you in case you develop an infection in your arm or breast on your BC side.
  • Some lymphoedema nurses recommend wearing a lymphoedema sleeve on long-haul flights.

You can also get medic alert bands and bracelets to wear on your at-risk arm.

SnorkellingIf you DO cut, bruise or burn your arm, or develop an infection, it doesn’t mean you will definitely develop lymphoedema (just as you unfortunately can’t guarantee avoiding lymphoedema even if you follow all of the above and never have an accident). Initially I assumed it was game over as soon as I did anything to the arm. And I am SO INCREDIBLY clumsy that within weeks I’d banged it quite a few times, burned it while cooking and chopped the tip off my finger while chopping onions… Dufus. A month after my final radiotherapy I went on holiday with the intentions to be REALLY good. On the first day, fresh off my long-haul flight, I got sunburnt, bashed into some coral while snorkelling, resulting in cuts and bruises from my wrist all the way up to my shoulder and then topped it off with a couple of mozzie bites in the evening. I thought that was it. Game over. And waited for my arm to swell. Amazingly it didn’t. When I got home I booked an appointment with a lymphoedema nurse to get a better understanding of it all. She measured both arms, all along each arm at 5cm intervals and measurementscompared the measurements to see if there was any noticeable difference that could indicate the onset of lymphoedema. Luckily, no evidence of it so far (touch wood – I could obviously develop it at any time). She then showed me a diagram of the lymph system and told me how it works, and explained that some patients never get it as you always have some lymph nodes remaining in that area – either in your chest or under your collarbone – and your body can sometimes work out another way to drain the lymph fluid. But some patients’ internal plumbing means they will definitely get it. So while some people can put their at-risk arm through major trauma with no ill-effects, others can develop lymphoedema with no, or a very small trigger.

I’m obviously not advocating bashing your arm around like me! Best to err on the side of caution! I’m just illustrating that you don’t need to hit the panic button if you do cut, burn, or bruise yourself. Clean the cut or burn, apply some antiseptic if you have it, and keep an eye on it for signs of infection (redness, soreness, pus etc). If you develop an infection, go straight to your GP for some antibiotics to clear it up quickly, and take the pressure off the lymph system (hence why it is important to have some precautionary antibiotics if you are going to be out of reach of western medicine for a while).

What are the symptoms of lymphoedema developing? 

The main symptoms are:

  • Swelling – either noticeable swelling compared to your non-BC arm, or if your watch, rings or clothes suddenly feel tighter.
  • Change in feeling of the arm. This could be pain, aching, heavy-feeling, tightness or stiffness. Please note that surgery itself causes these symptoms, but best to get any weird feelings checked out…just in case.
  • Changes in skin texture. This could be dryness, flakiness, tightness of the skin feeling stretched or an orange-peel effect.

If you develop any of these, book in to see your GP, breast care nurse, lymphoedema nurse or surgeon ASAP. Again, they don’t necessarily mean you have developed it – it could be down to something like cellulitis or a blood clot – but whatever it is, you want to get it sorted!

How do you treat lymphoedema?

The main treatments are below.

  • Compression sleeve and gauntlet. You will be fitted for a lymphoedema sleeve and glove which compresses the tissue to stop the fluid from building up. 

lymphoedema sleeve

  • Manual lymphatic drainage (MLD). This is a form of massage performed by an experienced therapist which encourages the lymph fluid to move away from the swollen tissue so it can drain away.
  • Simple lymphatic drainage (SLD). This is a simpler form of the MLD – which you are taught to do yourself at home.

For more information please see the Macmillan website, Breast Cancer Care website or The Lymphoedema Support Network website.

So far, I have been lucky, but know quite a few ladies who haven’t been quite so fortunate and developed lymphoedema pretty soon after their surgery. A few of them have kindly allowed me to share their experiences and advice:

“I have it in my upper arm which is mildly swollen permanently and never really went down after the post-op swelling. My chest wall also has LD. The swelling is a pain – sometimes my hand gets enormous and looks deformed. The swelling does go up and down but never back to normal. When it aches, I have to put the compression sleeve and glove on as I know that it will swell up shortly afterwards. It’s a mildly sickening ache. The NHS sleeves are in a zombie-flesh colour. The arm and sleeve are different colours of zombie-flesh so look odd.  I don’t have to wear the sleeve/glove constantly but am meant to wear it if it is aching or swollen and before any exercise, including housework and driving.  It aches horribly when driving, even with the gear on.

I have MLD from the LD nurse every few weeks and she has taught me some simple strokes to do at home. Mine is classified as “mild” even though my hand can swell to twice the size.

With regards everyday life, I have to be careful with which clothes to wear – both to cover up my sleeve and the swelling and also to ensure that they are not too tight or restrictive. The compression sleeve can also be uncomfortable and can chafe. It’s also a bugger when washing hands! The glove has to come off and the sleeve’s hand-anchor has to be rolled back. The glove also gets very grubby very quickly.”

“The first indication I had was a heavy feeling in my arm and hand with no obvious change in size. My arm would ache and it was more annoying than sore. I was a right-sided node clearance and right-handed so the more active I became after treatment the more I realised there was a potential risk of lymphoedema as my hand felt tight and would swell at night. However the trigger was when my hand ballooned while I was decorating. The main trigger for me is using it too much – I therefore wear a glove and sleeve when I do specific tasks like housework, writing and decorating. I wear it to work as I’m office based and typing triggers it off. Luckily I caught mine before it took hold so to speak and I can control it. Prevention is better than a cure. If anyone suspects they have it, it must be checked ASAP. The sleeves and gloves are provided in nude (yuck) however I now have a couple of black sets which people strangely don’t notice as much . Mine mainly affects my hand , but my arm can swell too. 

So the main symptoms for me was a heavy, achy arm , then tightness and swelling at night and lastly the ballooned hand when using it too much. I only wear the sleeve when at work and occasionally at home. I can play on it at home to avoid nasty tasks!!!!!”

“My lymphoedema started 3 months ago, almost as soon as rads had finished. Mine is in my breast which is very swollen, red and hot, and the skin all over breast is like orange peel. I am told by specialist that this is the first classic sign of LD. The pain is a constant throbbing with shooting pains that travel all the way down to fingertips. I wear a crop top style sports bra as it supports it well and feels more comfortable with it on.”

“Remember American Tan tights? Welcome to the world of American Tan arms. As there are different makes and sizes, it can be a question of trial and error to find a sleeve that fits without pinching while still giving the right sort of compression. Manual lymphatic drainage (MLD) can be REALLY helpful, but it can be a bit of a lottery for how often you can get it on the NHS. In the meantime, you can do Self Lymphatic Drainage (SLD). For best results get into the habit of doing this regularly, to keep the lymphoedema under as much control as possible. 

Something else to watch out for if you have lymphoedema is any scratches or insect bites, which could result in cellulitis, a very painful inflammation of the tissue in the affected area. A useful tip is to keep a travel tube of antiseptic cream or wipes with you wherever you go, in case you do get scratched.

If you have lymphoedema in the hands, you may need to wear the rather sexy gauntlets. Unfortunately, they can get dirty quickly, so get hold of a box of latex gloves (if you’re not allergic to latex, of course) to keep in the kitchen, and shove a few in your bag too, in case you do anything messy when out and about. Use them whenever you’re preparing food, eating anything messy or sticky, and when using the loo.”

Thanks girls! If you are really not getting on with the tan compression sleeve, you can ask your GP or LD nurse to prescribe you a black one (some will, some wont – and some chemists wont dispense them) or buy an alternative sleeve or cover. You can buy patterned covers like My Tattoo Sleeve online. There are many more companies in the States that do sleeve covers and coloured and patterned lymphoedema sleeves – but be wary if you are buying an actual sleeve as you need to make sure that it fits your personal prescription and size.

N is for… Nutrition and Diet

20 Nov

Like A is for… Alternative and Complimentary Medicine, this is a bit of a minefield with many people, patients, nutritionists and medical experts having very strong, but opposing views, which makes it really confusing for us patients! Who should we believe?!! I’m afraid I don’t have the answers, but here’s my view to throw into the mix!

Pile of booksWhen I was first diagnosed I was given a whole heap of books from very well-meaning friends and family, but all it did was ended up confusing and overwhelming me. Some of them had very frightening names and in my fragile state all they did was end up terrifying me that each thing I was putting in my mouth was going to kill me! The two most common are Your Life in Your Hands by Professor Jane Plant and Anti Cancer – A New Way of Life by Dr David Servan-Schreiber, but there are many, many more out there. A very, very brief summary is that Prof. Jane Plant advocates no dairy or red meat and Dr David Servan-Schreiber recommends avoiding sugar, dairy and red meat (among other foods) while increasing your intake of a list of foods including green tea and soy. However, other studies suggest that soy increases your risk of developing cancer or recurrence, and that dairy helps prevent recurrence and is fine in the UK as our cows aren’t pumped full of oestrogen like they are in some countries!! AAGH! What to do?! Who to believe?!

Breast Cancer DietI asked a few oncologists when I was having my mini-panic and was told that the most important thing was to have a balanced diet and not to deny your body  important vitamins and minerals, particularly during treatment (remembering that we need to be careful with supplements). They realised the importance of us, as patients, wanting to take some control ourselves and were happy for me to go dairy-free if I wanted, but stressed the importance of ensuring that I must consume enough calcium to protect my bones and teeth due to the increased risk of osteoporosis during treatment.

Balanced Diet Breast CancerI then went to a couple of seminars on diet and nutrition at the Haven and at the Breast Cancer Care forum – and they also advocated a balanced diet rather than a dairy-free diet. The BCC nutritionist (who’d had cancer herself) recommended a book called The Genesis Breast Cancer Prevention Diet by Dr Michelle Harvie. It’s a good read – and a diet that I felt would be very easy to adapt to (and therefore stick to!). It follows the same lines as Dr Susan Love‘s recommendation of  eating “an abundance of winefood from plants, moderate amounts of cheese and yoghurt, weekly consumption of small to moderate amounts of fish and poultry, limited sweets and red meat and a low to moderate consumption of wine”. This balanced diet wont starve your body of any important vitamins and minerals and is proven to help you lose or maintain your weight and decrease mortality from many causes, of which breast cancer is only one.

You need to make your own informed choice as to whether and how you are going to adapt your diet. I decided to follow the diet guidelines that would fit into my lifestyle best, that I would stick to and, quite frankly, that I would enjoy the most (and I do like my cheese and wine…!). During treatment I stuck to the balanced diet approach including dairy and got really into juicing – but didn’t beat myself up when I was a bit naughty. There were times when I was feeling nauseous or had the yucky taste in my mouth – and at those times I just ate what I fancied. Now that I have finished the most active treatment, I am doing my best to get back to a healthy BMI by following a healthy, balanced diet as one thing EVERYONE agrees on is that being overweight increases your risk of recurrence.

Feel free to leave your thoughts and comments below.

P is for… Preparing Yourself for Treatment and Surgery

20 Nov

Don’t be scared – take some control back and be prepared! Being prepared for each stage of my treatment and surgery gave me back some control and helped ease the anticipation and fear of the unknown. It also helped keep me busy and passed the time in the run up to the next daunting stage of treatment. We’ll obviously all have different needs, but I’ve made a few suggestions below as to things you can do or buy to feel more ready to face your surgery or treatment.

Preparing for chemotherapy


Surgery

preparing for surgery

  • Ensure you understand what to expect. When you have your pre-op meeting with your surgeon make sure they explain the procedure, where to expect scarring, how long you will spend in hospital, the expected recovery time, how long you should take off work, how long until you can drive, recommendations for post-surgery clothing and physio and ask any other questions that have been weighing on your mind. Also make sure you understand why you are having the suggested procedure and that you are happy with what they are suggesting. You are entitled to a second opinion, particularly if you are unhappy with your assigned surgeon or had been expecting or had hoped for a different procedure (such as immediate reconstruction or a lumpectomy instead of a mastectomy) – another surgeon may agree with you, or simply agree with your current surgeon, at which point you can be confident that it is the correct surgery for you.
  • Work. Discuss your recommended recovery time with your employers and ensure you understand where you stand and your rights. Hopefully your employers will be understanding and compassionate, but if you face any challenges, Macmillan can help with offering advice.
  • Post-surgery underwear. Your surgeon should be able to advise you on this. They usually suggest firm control, non-underwired cotton bras (very UNSEXY!). I got mine from good old M&S. Let the vendor know that it is for post surgery as they should then take off the VAT. If you are having a full clearance you might want to consider a front-fastening bra as you might struggle with arm movement for a while, meaning putting on a back-fastening bra is a bit tricky.
  • Front-fastening  pyjamas or nighties are useful as it can be sore or difficult to lift your arms and you have to constantly show the site to the consultants – it’s much easier to undo a few buttons than try and struggle out of a top. Make sure they are a good, natural, breathable material. I have a good selection on Not Another Bunch Of Flowers.
  • Similarly, some front-fastening clothes can be useful for when you leave hospital in case you struggle lifting your arms. I bought a few button-up shirts and cardis.
  • Some cosy bed socks or slippers for your stay in hospital to keep your tootsies warm in bed and while shuffling to the loo on the cold floor.
  • If you are having a mastectomy without reconstruction, you might want to get a nice scarf or cardigan to drape over you for when you have visitors as it will be a little while before you are able to wear a prosthesis.
  • Ear plugs and eye mask for a less disturbed night’s sleep and for napping during the day. The best I found were by Daydream.
  • Wipes to freshen up.
  • Dry shampoo if you are in for a while.
  • Moisturising lotion – I always find my skin is very dry – maybe due to the air con or heating.
  • Entertainment – whatever floats your boat to pass the time! Load up your kindle, download films or TV series onto your tablet or laptop, buy some books, magazines or puzzle books, or take up a new hobby.
  • Transport. Plan how you will be getting to and from the hospital.
  • Luggage. Consider a wheely bag if you don’t have someone accompanying you to carry your bag as you wont strain yourself

This isn’t a definitive list of what to pack – don’t forget undies and your toothbrush etc!

Chemotherapy

preparing for chemo

  • Dentist. You are recommended not to visit the dentist during chemotherapy as your immune system gets very low and you could pick up an infection. Most units make you book a dentist appointment before starting treatment to ensure that you don’t have any underlying problems that could be exacerbated by chemo. If you do this in advance you wont risk holding up treatment. Besides, everyone loves a trip to the dentist, right…?!
  • Visit the chemotherapy ward. Arrange to visit the ward either as part of your pre-chemo assessment or with your nurse. You might think it will be more scary seeing patients hooked up to beeping machines etc, but it honestly isn’t as bad as you imagine it will be and visiting in advance removes the fear of the unknown, making it much less scary. I was terrified before I saw the ward, my imagination ran wild, but I was immediately put at ease by the comfortable surroundings and lovely, kind nurses. It also gives you the opportunity to ask any questions that have been keeping you up at night. 
  • Work. Again, it is usually best to discuss your treatment with your employer so they understand how your treatment will affect you and when/whether you will be able to work during treatment, and for you to understand what your employer expects of you. Hopefully nothing more than taking it easy!! Do take it really easy for your first session at least – this will give you an idea as to whether you will be able to work during the following sessions. Some of you will be keen to continue as normal and work throughout treatment – but be careful of putting too much pressure on yourself. Macmillan’s cancer support specialists will be able to offer advice on this subject.
  • Arrange for help with school runs/dog-walking etc following your first chemotherapy session to enable you to take it easy for a few days while you work out any side-effects. Keep a diary of these as they tend to be the same for each session and you will soon figure out which days you need extra help and which days you’re up to doing everything yourself.
  • Buy a digital thermometer. If you feel ill during chemo you will be told to go to hospital if your temperature rises over 37.5°. It’s easy to get a bit  OCD with taking your temperature with the first session – but you’ll soon relax about it!
  • Buy some antibacterial hand soap and gel to keep those nasty germs at bay both at home and on the move when your immune system is low.
  • Headwear. Unfortunately most chemotherapy agents cause hair loss and you will feel a bit more prepared for this if you have a nice scarf, hat or wig at the ready. Annabandana are pretty  good value. Bold Beanies was set up by one of my friends who has had breast cancer and sells lovely soft, cotton beanies. I wouldn’t go overboard at the start as it’s not until it happens that you work out what works best for you. I had a drawerful of sleepcaps, buffs, a couple of wigs, loads of scarves in different styles and colours and in the end used about 2 of them. Maybe get a cheap buff and scarf initially, and then buy more when you’ve lost your hair and know what you feel more comfortable in. Your hospital might have free wigs – but if you don’t like any of them, ask for your NHS voucher which will give you discounts from specialist shops such as Trendco. It is very difficult to find one that looks like  your current hair, so best not to have expectations of that, but you will hopefully be able to find one that suits you and that you feel happy in. Some ladies actually end up preferring their wigs to their normal hair! If it’s not quite right, it can be tweaked, thinned out or shaped. My New Hair is a charity run by Trevor Sorbie who does wig-shaping for free. You might even get a session with him! You could also invest in a pair of cheap clippers for when the moment arrives. Your scalp gets quite sore, so shaving it off is less painful. You might want to shave the fluffy bits regularly through treatment.
  • Hairdresser. Whether you are planning to use the cold cap or embracing the bald look, it is worth booking an appointment with your hairdresser to cut your hair shorter which will make the hairloss less traumatic. I used the cold cap and got my hair cut in advance into a short bob and dyed back to its normal colour so that my roots wouldn’t look too awful during the following 5 months when I couldn’t colour it.
  • Enrol on a Look Good Feel Better workshop. This is a fantastic service that gives you a real boost. It is free and they teach you skincare and make-up tips including painting on your eyebrows and enhancing your eyes if you lose your lashes – and you get a wonderful goody bag full of cosmetics and smellies from the likes of Clarins, Clinique and Estee Lauder. There is often a bit of a waiting list, so if you book on before you start treatment it will give you something to look forward to.
  • Stock up your food cupboard with a few items that  are good for nausea (plain biscuits, ginger biscuits, ginger beer), some healthier treats to help tackle the steroid munchies without piling on the weight and some goodies in case your tastebuds start playing up (pineapple chunks, ice lollies or juice worked well as did citrus sweets and coke). You might want to stock up the freezer too for the days you can’t be bothered to cook! The anti-sickness meds can block you up a bit, so prune juice, fruit and veg are good at naturally helping this. And fruit squash can be useful to ensure that you keep up your water intake when your taste buds go funny.
  • Arrange transport and company for your appointments. Make sure you have people to drive you to and from your appointments and to keep you company (if you want it).
  • Entertainment – Load up your kindle, download films or TV series onto your tablet or laptop, buy some books or magazines or take up a new hobby. Anything to make the time pass a bit quicker while you’re waiting around or receiving treatment and to take your mind off it.

Radiotherapy

preparing for radiotherapy

  • Ensure you understand what to expect. You will most probably see the radiotherapy unit when you go for your planning session a few weeks before you start. At mine, a lovely nurse took me aside to discuss the procedure,  told me how to look after my skin during treatment and talked through various logistics like parking.  See Z is for… Zapping those Cancer Cells with Radiotherapy for my experience to see what to expect.
  • Work. Again, important to have the discussion with your employers as to whether you will be working during treatment. For some of us, radiotherapy will be the last part of treatment and while you might be super keen to get back to normality and work – radiotherapy can take its toll on you and make you feel quite tired, so don’t commit to too much if you don’t feel up to it or need to, otherwise you might end up making yourself ill in the long-term and end up having to take time off work anyway.
  • If you need to wear a bra buy a soft, non-wired cotton bra or crop top. You don’t want to wear anything that will aggravate your skin. I just went braless (ooh la, la!).
  • Entertainment – Again, load up your kindle, download films or TV series onto your tablet or laptop or buy some books, puzzle books or magazines. Sometimes there’s a bit of waiting around! (And sometimes A LOT of waiting around).
  • Toiletries.  Advice on this varies so much from unit to unit. I washed with Simple shower gel and moisturised generously and regularly with E45 and Organic Aloe Vera Gel and avoided deodorant. My skin held out pretty well – nothing more than a little pinkness like a mild sunburn. There is a new organic and natural skincare range that is forumlated especially for people facing chemo and radiotherapy. The best oil to use during rads is the Defiant Beauty Soothing Skin Oil.
  • Support. Line up some supportive friends or family who can step in and help if you feel  you need it. Some people feel fine but others feel very fatigued or ill – in which case it would be nice to know that you have someone you can rely on to pick up the kids/walk the dog/do the grocery shopping if you’re going to need a little rest.

Q is for… Quacks and Nurses

20 Nov

Your main medical team will be made up of your GP, surgeon, oncologist and lots of wonderful nurses. Depending on your diagnosis and treatment plan you might get some other specialists added on along the way. I now have a cardiologist, opthamologist, physiotherapist and dermatologist thrown into the mix.

I’ll discuss what they do briefly – but think the most important advice is to ensure that you have a team looking after you that you trust and believe in. You’re not dealing with a cold or tummy bug here. Your life is in their hands and you will be relying on them for a long while. A cancer diagnosis is an extremely difficult time – both physically and emotionally – and if you don’t like or trust one of your consultants, it will make the whole process much more difficult. You are entitled to second opinions and to change consultant to one you feel more comfortable with. In most countries it is the norm to shop around a bit – but in the UK not many people realise they are able to.

GP

GP. Your doctor will have been the first contact regarding your original symptom and will be the one that will have referred you to the specialists for further tests. My GP is LOVELY. Really empathetic and sensitive and thorough. When you are receiving treatment you will be having more regular contact with your oncologist,  surgeon and breast care nurse who might be the most appropriate contact point for any symptoms or side-effects that you need to discuss. However, your GP will be able to help you with medication for any adverse side-effects suffered during treatment and after surgery, and for any concerns following treatment if the wait to see your specialist is too long. Mine gave me all sorts of goodies to help with some of my side-effects during chemo.

SurgeonSurgeon. Your surgeon usually be the one to diagnose you, perform your surgery and discuss your pathology with you. Some only do the taking away of bad stuff and don’t get involved in the reconstructive side of your surgery, in which case you will also see a plastic surgeon (if you are interested in reconstruction). Oncoplastic surgeons specialise in both the removal of tissue and also in the aesthetics. My initial experience with my allocated surgeon wasn’t great. He misdiagnosed me for months, dismissed me with antibiotics and assured me that he’d seen thousands of cases of breast cancer – and mine definitely wasn’t… It wasn’t until I broke down in tears and begged for a biopsy that I was given one. Then when he finally had to break the news he gave me the most sugar-coated version of my true diagnosis that I just couldn’t believe the true extent when I finally discussed it with my oncologist. As a result I had no faith in him. I needed someone who would give it to me straight and whom I could trust.

As I had my chemo prior to surgery this gave me a good few months to get a number of opinions about what surgery to have and to meet lots of other surgeons. Some wouldn’t do immediate reconstruction, others would. Others wouldn’t consider bilateral surgery, while again, others would. I was adamant that I wanted both sides done with immediate reconstruction. In the end, I opted to go with a fantastic oncoplastic surgeon who did a presentation on breast reconstruction at a Younger Women’s Breast Cancer Care Forum I went to. I met a few of her patients who raved about her work and showed me the results. They looked fantastic.

Some surgeons will explain things on a need-to-know basis and not inundate you with too much information about your pathology unless you want to know everything (like me!). So think about what you do, and do not, want to know and whether you want copies of the full reports or if knowing too much will confuse and upset you. The most basic things you might want to know will be whether the tumour is receptive to oestrogen or not (ER+) and if it is HER2+++ as this will give you an idea of what to expect when it comes to treatment. You might also want to know the size and type of tumour, the number of lymph nodes involved and what this means for your prognosis. Or you might decide ignorance is bliss! Breast Cancer Care do a fantastic guide to understanding your pathology report. Click here to see it. Your surgeon will either meet your oncologist at a multidisciplinary meeting to discuss your case – or be in touch with them if they work at different hospitals, but your surgeon probably wont know the ins and outs of your treatment plan. It will be your oncologist who will discuss this with you. The number of appointments you have with your surgeon will depend on your type of surgery and whether you are having treatment prior to, or after your operation.

OncologistOncologist. This is your cancer specialist who will devise your treatment plan and explain it to you. Again, you will want to think carefully about how much you want them to tell you about your diagnosis, pathology and prognosis. During your first meeting you might want to get an understanding of what is to come – whether you will need chemotherapy, radiotherapy, hormone therapy and any other targeted therapies such as Herceptin. They will be able to discuss potential side-effects and prepare you for what is to come. Once you know what to expect, you can start to get your head around it, and suddenly you regain a bit more control as you are given your chance to fight back.

During treatment you will have regular appointments with your oncologist to discuss the drugs, treatments and side-effects. Once your treatment has been completed you will then go to 6-monthly appointments, followed by annual appointments.

I was assigned an oncologist who scared the cr*p out of me the first time I met him as my surgeon had sugar-coated my diagnosis so much. My oncologist then gave it to me straight and told me it was a very aggressive form of breast cancer. I left feeling very scared and upset but actually respect the fact that he gave it to me straight, and as such, I trust and believe what he tells me. Following my initial appointment, I did get a second opinion in London with an oncologist who specialises in  younger women with breast cancer just to discuss the treatment plan I had been given. He agreed with it and said it would have been what he would have prescribed, and as such, I left feeling with 100% confidence in my treatment plan.

Others. The radiologist is the one who does the x-rays and scans. I was also assigned a cardiologist to monitor my heart as I was given Herceptin which is toxic to the heart and can seriously affect some people. I had regular echocardiograms (see X is for… X-Rays, Tests and Scans) and unfortunately my heart did suffer and my treatment was stopped after 5 months. I was then put on a variety of heart medication with the aim of strengthening my heart so I could restart the medication, but unfortunately my heart is still not strong enough. My eyesight was affected somehow during treatment – they don’t know if it was the chemo, the steroids or the Tamoxifen – so I now see an opthamologist. My back is also very sore as a result of my muscles being moved around during surgery and due to my muscles being weaker as a result of chemotherapy, so I have an oncology physiotherapist sorting that out. My little team is completed by a dermatologist as I developed a few dodgy-looking mole-type things, but they have decided it’s nothing serious, but are just keeping an eye on me.

Breast Care NurseNurses. I was super lucky as my Macmillan Breast Care Nurse was an absolute godsend. She was present at my diagnosis and spoke to Mr B and me for a couple of hours afterwards, she attended at all of my subsequent appointments and always took me aside after each one to see how I was feeling and if I had any questions. She held my hand when I was being anaesthetised for my first surgery. She called me at home to see how I was doing during my treatment – and even called my husband too to ask how he was coping. She is always there to answer any queries or questions I have. She helped make the whole thing a bit more bearable and I am extremely grateful to her and Macmillan as a result.

However, I have since learned that most people don’t have such supportive nurses and sometimes struggle to even get hold of them which leads to confusion as to who to turn to with questions about treatment or surgery or with any health worries.  They should be your first stop. If you can’t get hold of them, then contacting your oncologist, surgeon or GP (depending on the nature of the issue) would be my next stop. However, if you have some very general questions or niggles or are after a bit of support or reassurance then I can highly recommend the helplines at Macmillan or Breast Cancer Care. I used the helpline at Breast Cancer Care a few times and always spoke to a qualified breast care nurse – a few of whom had had breast cancer themselves. A couple of times I had specific questions about my treatment and was looking for a better understanding. Other times I called when I was feeling low and just needed a cry and a chat about what I was going through. They were BRILLIANT. It is so important to feel supported during such a difficult time – and if your medial team aren’t providing this support (shame on them) – these fantastic charities can fill that gap for you.

I’d like to say a massive thank you to my chemo nurses who made me so relaxed and comfortable when I was, quite frankly, cr*pping myself – and all of the nurses who looked after me during my surgeries.

R is for… Reconstruction

20 Nov

When I was diagnosed and found out I had to have a mastectomy, I thought I was going to end up with horrible, scarred Frankenboobs. However, as I researched my options and sneaked a peak at as many reconstructions as I could (many girls are so pleased with their recon that they are happy to share and, quite frankly, some of them are fantastic and wouldn’t have looked out of place on Page 3 of the Sun! ) I soon realised that the reconstruction options these days can give AMAZING results.

Men reading the Sun on the tube train

I had immediate reconstruction using expanders (as I had to have radiotherapy) and am off at the end of January for an implant exchange! The expanders have given me a great shape, but are quite hard and uncomfortable. I’ll let you know how the implants are once they’ve settled in a bit.

It is, however, a personal decision involving major surgery and about a quarter of women choose not to have any reconstruction. For those of you who do want reconstruction, there are quite a few different options, either using implants or your own tissue to form a new boob, and all with different pros and cons.

I have done LOADS of research about reconstruction options and have been swamped with booklets and websites. BY FAR the best one I came across is this one. It covers all of the different surgeries with pros and cons, patients’ experiences and pictures. They are now charging to download it…but it’s still free to read online.

I’ve briefly described the main  methods below – but not all of them will be suitable for everyone. Your surgeon or plastic surgeon will look at your body and talk you through the different options (there may only be one) that would work best for you depending on factors specific to you such as:

  • Your body shape and how much tissue you have. For example, if you are of a very slim build you may not have enough tissue on your back, tummy, bum or thighs to have recon using your own tissue, in which case implants might be the only option.
  • Your general health. Some options involve major surgery and will only be performed on healthy individuals.
  • Your lifestyle. Be sure to let your surgeon know about the sports you enjoy, whether you have young children you need to be able to pick up and carry or if you have a very hands on job etc. For example, I work in the ski industry and am a keen skier, so although I have enough tissue for an LD flap, my surgeon advised against it as I need those muscles for skiing! Your lifestyle may also affect how long you would be prepared to be off work or unable to drive
  • What size breasts you would like to have. There is a limit on size – it depends on how much muscle and flesh you have and implants are only made to a certain size, so the size you want to be could have a bearing on the reconstruction options available to achieve it.
  • What treatment you are having. If you have to have radiotherapy, most surgeons like to delay reconstruction with your own tissue as it can affect the results and once that tissue has been used, there’s no other tissue as a back-up. Some will perform the reconstruction but make it larger, knowing it will probably tighten and shrink following radiotherapy.
  • Your expectations. Explain what your expectations are so the surgeon can give you the best option to meet them and, if they are unrealistic, realign your expectations so you are not disappointed.
  • Unlilateral or bilateral surgery. If you carry one of the breast cancer genes (BRCA1 or BRCA2) or have a very strong family history you may opt to have a bilateral mastectomy which will also affect the type of recon you could have. For example, you may have enough tummy tissue for one recon, but not two.

They should also explain why other methods would not be suitable for you. If they don’t, push them on this as it may be that they don’t perform some of the procedures, in which case it would be best to ask to be referred to an oncoplastic surgeon or plastic surgeon who does, so you are given all options and can therefore make an informed decision. Also ask about their experience and whether you are able to see pictures of past patients to give you an idea of their work. You are also entitled to a second opinion. I had my chemo before my surgery so had plenty of time to see different surgeons and research the different options, but for those of you having surgery prior to treatment, you may feel very overwhelmed and rushed – which makes it even more important to have a surgeon who explains it to you so you understand your options and come to a decision with which you are happy.

Make sure you understand which options are available to you, whether you should have immediate or delayed reconstruction, what to expect from each option, the pros and cons particular to you, where you will have scars, the shape and size you will be, how long the recovery time is (including time in hospital, time off work and when you will be able to drive), whether they would expect many subsequent operations, the possible risks and complications, whether it will delay treatment and get advice on post-surgery bras, clothes and physio.

A very, very brief overview of the most commonly used types of recon are below:

Tissue Expander or Implant

A tissue expander is a deflated implant that is slowly inflated over time with saline to stretch the skin or muscle, and is used if you want to be bigger than you were before, if you had to have skin removed or as a temporary reconstruction if you are having radiotherapy. The port sits under your skin and is accessed with a needle and they just inject the saline in which makes the implant grow in size and stretch your muscle and skin.

Implants can be made of a silicone outer shell, filled with saline or silicone or a kind of silicone jelly.

Both expanders and implants are placed under the muscle in your upper chest which holds it in place. There are lots of types, shapes and sizes to choose from. The main shapes are round or teardrop and they come in different sizes with different projections. Your surgeon will be able to discuss which will be best for you.

Pros:

  • simplest and shortest op
  • shortest hospital stay
  • quickest recovery
  • no additional scarring on other parts of your body

Cons:

  • can feel cold and unnatural
  • small risk of infection
  • small risk  of rejecting implant
  • tissue expanders involve regular hospital appointments for inflation
  • difficult to get symmetry with natural breast as it doesn’t “droop” (not so much of an issue with bilateral recon and can lift other breast to match)
  • less fleshy than reconstruction using your own tissue
  • risk of capsular contracture where scar tissue can form and distort the shape of the implant
  • further ops required to replace implant as they have a limited lifespan

LD flap 

The LD flap (latissimus dorsi) uses muscle from your back which they kind of poke round your side(s) to form the new breast(s). It can either be made with a large amount of muscle, or a smaller amount of muscle in conjunction with an implant or expander, depending on what size you want to achieve. You can have it either as an immediate or delayed reconstruction and it gives a very natural result with a medium-sized scar on your back that should be hidden by a bra.

Pros:

  • natural shape and movement
  • fleshy, warm and lifelike
  • matures like your other breast
  • if using implants, capsular contracture is  less obvious as it is hidden under flesh
  • changes with your weight

Cons:

  • major op with longer recovery time
  • higher chance of not working than implants as more complications possible
  • you are left with scars on your back as well as your breast
  • not suitable if you play certain sports as the muscle is removed from your back
  • if using implants, may need to be changed

TRAM flap

The TRAM flap (transverse rectus abdominus myocutaneous flap) op takes excess tissue, including muscle, from the lower part of your tummy which is then used to form your new breast(s). It can also be done immediately or after treatment. As with the DIEP, it is major surgery with the longest recovery, but gives the most natural result. You also get a bonus tummy tuck – but this does involve a large scar from hip to hip that they try to hide under your knickerline.

Pros:

  • Most natural shape, weight and movement as all your own tissue.
  • Will change with your weight.
  • Feel soft and warm.
  • Tummy tuck
  • Shouldn’t need further ops.

Cons:

  • Longest op and longest recovery time.
  • higher risk of flap not taking than LD.
  • Long scar on tummy from hip to hip
  • Risk of hernias and tummy muscle weakness.

DIEP flap

The DIEP (deep inferior epigastric perforator) flap is similar to the TRAM flap but it is just the skin and tissue taken – no muscle – which is taken to form your new breast(s), so reduces the risk of hernias and tummy muscle weakness. It can be done immediately or delayed. Again, it is major surgery with the longest recovery, but gives the most natural result. As with the TRAM, you get a bonus tummy tuck – but this does involve a large scar from hip to hip that they try to hide under your knickerline.

Pros:

  • Most natural shape, weight and movement as all your own tissue.
  • Will change with your weight.
  • Feel soft and warm.
  • Tummy tuck
  • Shouldn’t need further ops.

Cons:

  • Longest op and longest recovery time.
  • higher risk of flap not taking than LD.
  • Long scar on tummy from hip to hip.

TUG, SGAP, IGAP and LTT flaps 

These are similar processes to the DIEP flap procedure, but using tissue from around your bum – the SGAP flap (superior gluteal artery perforator) and IGAP flap (inferiorgluteal artery perforator) – or your thighs – the TUG flap (transverse upper gracilis – the inner part of your thighs) and LTT flap (lateral transverse thigh – the outer part of your thigh). These are used if you carry your weight more around your bottom or thighs as opposed to your tummy. The pros and cons are similar to the DIEP, but with the scars being on your bottom or thighs.

nipple reconstructionNipple reconstruction
The cherry on the cake!! If you haven’t been able to keep your nipple(s), the main options you have are:
  • Stick-on nipple(s) if you want to avoid further surgery. You can either pick one of the generic ones, or an exact replica of your removed nipple! Amazing what they do nowadays! The adhesive is long-lasting and can be worn while swimming etc.
  • Nipple-sharing, where they make you a new nipple out of part of the nipple on the other side.
  • Skin-grafting, where they use skin from other parts of your body (including your ear or labia….yuck!) to create a new nipple.
  • Skate flap, CV flap or Arrow flap where they do a kind of boob-origami and cut into your skin on your reconstructed breast, twiddle it around (in a very precise, scientific manner) and create a new nipple. This seems to be the most commonly used technique.

Some surgeons do nipple reconstruction at the same time as your actual reconstruction, but most will wait for the recon to settle and for the swelling to go down which I guess would give better results in terms of placement etc. If you are having one side done to match the other side, they will place and size it accordingly. If you are having both done, you can choose what you want! Nipple-sharing and skin-grafting is performed under a general anaesthetic, but the skin-twisting boob-origami is often performed under a local and as day surgery.

Symmetry

Occasionally some people need subsequent ops to match the breasts up. Tweaking the reconstructed breast could involve lifting it, reduction, increasing size with an implant or lipo-filling (transferring fat from elsewhere to smooth out irregularities or to increase size). Or they may decide to tweak the healthy breast by lifting it, inserting an implant, or reducing the size.

T is for… Tamoxifen

20 Nov

TamoxifenTamoxifen is a wonder drug given to ER+ patients that saves more lives than chemotherapy with fewer side effects. It basically blocks oestrogen from reaching the cancer cells and you are normally prescribed it for 5 years.

Possible side effects include hot flushes, nausea, mood swings and weight gain and it may affect your periods. Throughout my treatment I have been flabbergasted to come across quite a few women who refuse to take it as they are scared of the side effects. And all of these women had done chemotherapy for 5 months! There are scare stories online and some high profile celebrities, such as Jennifer Saunders, have shared their not-so-pleasant experiences with the drug. However, PLEASE DON’T PANIC! Yes, some people (the minority) have some adverse side effects – but the vast majority are fine.Apart from the odd warm flush (not like the hot flushes I experienced during chemo) and a bit of joint pain when I first started taking it, I have no side effects and still haven’t met anyone in the real world (as opposed to the virtual one!) yet who has suffered from any adverse reactions. The main complaint of my virtual buddies seems to be the hot flushes, but many of them swear by citalopram. And don’t forget the trusty Chillow Pillow to help you get a better night’s sleep!

If you do suffer from hot flushes, joint pain or mood swings, it might be worth trying a different brand as it seems as though different brands affect us in different ways. I like Wockhardt – and have had to take 2 different brands twice when my pharmacy ran out, and both times I noticed an immediate increase in my flushes and developed joint pain – both of which subsided when I went back to my trusty Wockhardt. However, some people find the same with the Wockhardt brand – so it’s a case of trial and error until you find the brand that works best for you. You can also experiment with the time of day you take the tablet. I take mine last thing at night and have no problems. Others take theirs in the morning and some take half in the morning and half in the evening.

U is for… Underwear

20 Nov

I love, love, LOVE lingerie. Pretty, sexy, silky, lacy colourful undies. And always matching. It’s my equivalent of a shoe addiction and I was not going to let breast cancer take it away from me.

Underwear

For those of you who don’t know me, that is totally me in that pic. Just hanging out, looking gorgeous. For those of you who do know me, you may not be so easily fooled…

Your Breast Care Nurse and surgeon should be able to give you some guidance on post-surgery bras. Some just recommend a soft cotton non-underwired bra, sports bra or crop top post-surgery while others recommend a tight-fitting bra to squeeze the reconstructed breasts into shape and prevent seromas.

Lumpectomy – you should just be able to continue wearing your pre-BC bras and bikinis. You might want to wear a softer, non-underwired cotton bra, crop top (like a Genie Bra) or sports bra (maybe consider front-fastening if you’ve had a full axillary clearance) until you have healed fully and during radiotherapy when your skin can get a bit sore (see Z is for… Zapping those Cancer Cells – Radiotherapy), but apart from that no need to dump the contents of your undies drawer. Result.

Accessorize brasMastectomy with temporary expanders – Post surgery I wore cotton non-underwired front-fastening bras as I struggled lifting my arms due to full node clearance. During my expansions I wore pretty, non-underwired bras like this one from Accessorize. ASOS did similar ones. I didn’t want to waste money on bras when my size was constantly changing and these had enough stretch to allow for the expansions. I had both sides done together and therefore didn’t need any support as my new boobs were the ultimate definition of  pert and as the implants are under the muscle, they ain’t going anywhere no matter how much bouncy bouncing I do. However, if you had just one side done and need a bit more support, I imagine you could wear your previous bras (once you are fully healed) and use a prosthesis or chicken fillet in the smaller size until it reaches its full size. Once I was fully expanded I wore my previous underwired bras.

When your temporary implants have been exchanged with permanent implants or replaced with DIEP, LD flapTRAM flap or TUG flap (see R is for… Reconstruction) you will probably be more comfortable in cotton, non-underwired bras or crop tops such as Genie Bras after your op, but once you are fully healed you should be able to wear your previous bras – if you are the same size – or get fitted for a whole new undie wardrobe!

Mastectomy with immediate reconstruction – Again, you will want to wear a cotton, non-underwired bra, sports bra or crop top until you are fully healed, and consider a front-fastening one if you are having a full axillary clearance, but you will ultimately be able to wear your previous bras – if you are the same size – or get fitted for new undies once you are fully healed.

Mastectomy with no reconstruction – You will need a good, non-underwired bra with a pocket to hold your prosthesis and consider a front-fastening bra if you are having full axillary clearance as you may struggle to lift your arm for a while after surgery. If your pre-BC bras and bikinis are full-cupped and suitable for carrying a prosthesis you can get pockets sewn into them. Fortunately most department stores (such as Marks and Spencer, John Lewis and Debenhams) stock a wide range of mastectomy bras and bikinis, and have staff fully trained to measure and help find you a suitable bra.  Alternatively, Breast Cancer Care run lingerie evenings – providing a safe, relaxed environment with experts offering practical advice and support and other post-surgery women. A young woman local to me set up an online store called About The Girl  after she was diagnosed with breast cancer. It offers a range of sexy and pretty mastectomy bras and bikinis. Other recommended online stores are Amoena and Nicola Jane.

Don’t forget you can recycle unwanted and old bras to raise funds for breast cancer research and that you don’t have to pay VAT on post-surgery and mastectomy bras and swimwear.

V is for… Virtual Friends

20 Nov

Virtual FriendsWhen I was first diagnosed I felt really isolated, scared and alone – and found a great deal of solace and support on the Breast Cancer Care Forum and a couple of Facebook groups. I soon had a group of virtual friends who all started chemo at the same time as me. We were all going through the same thing and understood what each other were going through. We could be totally open and honest with each other and supported one another, offering help and advice where we could. We could talk about everything from the embarrassing side effects to the more morbid side of dealing with a life-threatening illness – which non-cancer people just feel a bit awkward discussing. We also got lots of tips and advice from ladies who had finished treatment, which was much more relevant and useful than the info given to me by my nurses and specialists – as they’d actually experienced it. Predominantly this has been a source of amazing support and information, made me feel less alone and I’ve also met up with some of them in “real life” and made some great friends.

Virtual Friends WarningHOWEVER, I also think it’s important to warn you that while you will get support, questions answered, and relevant information, you will also be exposed to a rather warped view of all things “C”. The majority of people on the forums are people who are struggling to cope – emotionally or physically – and, as such, you are exposed to lots of negative stories. Those who are healthy and well and coping brilliantly are all off happily living their lives! Not logging onto cancer support forums. It’s therefore really easy to get drawn into a world which makes it all seem much, much worse than the reality – all too easy to believe that you will suffer every single awful side effect mentioned and there are constant reminders of the worst outcome when reading posts written by Stage VI ladies and announcements of members passing away. It also gets pretty addictive and difficult to ignore as every time you log onto Facebook  to catch up with your real-life buddies, there are notifications of various cancer-related posts which just brings it all to the forefront of your mind again, rather than it settling down nicely at the back of your mind if you’re having a happy, cancer-free day. However, once you’ve been part of the group for a while, it is very difficult to sever links as some members become proper friends – and you grow to genuinely care about them and want to continue to keep in touch to hear how they’re doing and to give support and advice whenever you can. Plus you never know whether you are going to need the support network again for yourself. The really, REALLY difficult bit is when your online friends start getting bad news. I’ve lost a few of my virtual friends who were having treatment at the same time as me – and a number of others have been told that the cancer is now terminal. This is doubly hard to deal with as not only are you terribly sad that a wonderful person has passed away and sad for their families whom you also feel you know as you have heard so much about them – but you can’t help but be reminded of your own mortality as it’s a stark reminder that it can come back and strike at anytime.

Sooooo….I wont discourage anyone from using the forums as they were a godsend for me – but I just wanted to warn of the negatives. There are some positive forces on the forums – and I strive to be one of them which is one of the reasons for writing this blog. I got to the point where I was repeating myself all the time, and I also don’t have as much time to spend on the forums, so I thought if I wrote it all in a blog, I could just direct people to the relevant part. But, to illustrate the potential dangers, I have come across some women who have refused certain treatments – like Tamoxifen – because they work themselves up into a state by reading scary stories online. The reality is that MOST women are fine with very few side effects, if any. This is life-saving treatment people! Much more sensible to give it a go and see how you get on with it. And arguably easier to do so without knowing the extreme side effects that can be experienced – albeit by the minority. I’m sure if you’d seen someone have a severe reaction to paracetamol if would make you think twice about popping a couple of tablets for a headache if you’d never taken them before. Embrace online forums if they work for you…but just keep a balanced view and remember that you’re not seeing the full picture.

W is for… Weighty Issues

20 Nov

weight gain chemoSo I thought the one and only silver lining of chemo would be weight loss. Cancer patients are always skinny, right? How wrong I was! OK, a few of the girls I met actually lost weight during chemo, but the majority put on weight and I was no exception as I slowly ballooned into blimp-sized proportions.

According to Breast Cancer Care‘s Diet and Nutrition seminar, women put on an average of 28lbs during chemo for breast cancer. TWO stone?!! I managed to beat this figure. (Not proudly!). Combine this with my straggly, thin hair, frog-like steroid face and lack of eyebrows and eyelashes and the last of my self-confidence slipped down the drain. I got quite upset as felt fat, sluggish and ugly. However, my oncologist told me not to diet during chemo as my body needed the energy. I am doing my best now (thanks to Weight Watchers), but it is a very slow process, most probably due to the Tamoxifen. SO, with hindsight, if I knew what I knew now, I would have kept stocked up with healthy snacks for my steroid-munchy days and eaten what I liked when I felt totally rubbish and only a mountain of toast would do, but tried to make up for it on my better days. I would also have upped my exercise. This will not only help keep the weight from piling on, but is also proven to help with the fatigue. I walked my dog every day which was all I could manage as my heart was seriously affected, but some friends ran every day and did yoga and pilates.

However, don’t beat yourself up if you put on weight. You will be able to lose it afterwards (albeit much slower than you used to) and it is much more important to keep your body energised and healthy rather than having to cope with being starved while being pumped full of poison.

X is for… X-Rays, Tests and Scans

20 Nov

Some of you will feel like you’ve been poked, prodded and scanned within an inch of your life between from finding your initial symptom, throughout diagnosis and treatment and beyond. Others will just have a few initial scans and that might be it. It depends on your pathology, how straightforward it is, and on your medical team.

I’ve just briefly described a few of the most common tests, scans and x-rays used for a cancer diagnosis below. All include links to more in depth descriptions if needed.

Blood test

Blood Tests. These will be the most regular tests you will have if you are having chemotherapy. I had to get over my fear of needles and blood pretty quickly. (Actually, not sure I am over it – still makes me go weak at the knees and feel sick!). You will have your blood tested a couple of days before every infusion to ensure that your blood count and immune system are strong enough to cope with the next chemo. Some of you may also have regular blood tests following diagnosis, throughout treatment and once treatment has finished to monitor your tumour markers. Certain chemicals are released into the bloodstream when you have cancer and these can be measured to diagnose a cancer and then monitored to see how you respond to treatment and whether there is evidence of it having returned. However, most hospitals in the UK don’t seem to monitor tumour markers as it seems they are not 100% reliable and can lead to false positives.

mammogram breast cancer

Mammogram. This machine squishes your poor boobies inbetween plates in order to take an x-ray of them. It can be slightly uncomfortable – particularly if you are young and have firm breasts. This form of scanning does include radiation.

ultrasound breast cancerUltrasound. Easy peasy. The radiographer will squeeze some gel onto your skin and slide the ultrasound transducer around to get a full image of your breast and/or lymph nodes. This can be to simply see what’s going on inside or as a biopsy guide. No radiation is involved – so this is perfectly safe.

MRI breast cancer

MRI. (Magnetic Resonance Imaging). This is the claustrophobic one that people get worried about – but it’s not that bad, so please don’t worry. I had an MRI after my diagnosis to get a better idea of the size and extent of the tumour and lymph node involvement as it didn’t show up on an ultrasound or mammogram. I also had one following chemo to see if the tumour had shrunk, and another to check my spine when I was suffering from severe back pain.

You will be given instructions beforehand regarding eating and drinking. You will probably be injected with a contrast dye to show up the tissue better. You will need to remove all jewellery and anything metal (due to it working with magnets) and will need to sign paperwork to say that you have no metalwork or metal fragments in your body. For breast cancer diagnostics, you are then positioned on the bed – face-down with your boobs in a couple of holes for the first scans and then again on your back – and slowly enter the tube. They might offer earphones with a selection of music and you will be given an alarm to hold in one of your hands to press in emergencies. There is also an intercom and the radiographer should check in with you at regular intervals during the scan. You have to lie VERY STILL (the images are blurred by movement) for reasonably long periods of time (up to about 40 minutes). It is painless and harmless (no radiation is involved) but it does make a bloody loud noise! Lots of whirring and clinking and clanking and banging. I just lie very still with my eyes closed, listen to the music and try and imagine myself somewhere else. It’s the noise and the enclosed space that you have to get your head around…but it’s really not that bad. If you do suffer from claustrophobia tell  your consultant or the radiographer in advance. They can give you a sedative if needed or just keep a close eye on you and talk to you more regularly during the scan. If you were to panic they would get you out in a matter of seconds.

CT scan breast cancer

CT scan.  (or CAT scan – Computerised (Axial) Tomography). These scans are very quick and painless and give a detailed picture of your insides. I had a CT scan after my diagnosis to check for spread and then another for my radiotherapy planning (see Z is for… Zapping those Cancer Cells with Radiotherapy for my experience with radiotherapy planning). Depending on what part they’re scanning, you might be asked not to eat that day, drink lots of water, and/or you may be injected with a contrast dye. You will be sent the instructions in advance. I had to strip to my knickers and don a hospital gown and lie on the bed which glides in and out of a small doughnut shaped hole. You are not enclosed, so there are no claustrophobic feelings as with the MRI scan – and it is really quick and painless. Radiation is involved.

X-Ray

X-ray. Another very quick, easy and painless way of checking what’s going on inside you. Radiation is involved, but your consultants will be bearing this in mind when weighing up the benefit versus the risk. The radiographer will put you in the correct position and then stand behind a screen while they take the pictures. All you need to do is stay still for a few seconds.

PET scan

PET scan. (Positron Emission Tomography). These scans are to see if the cancer has spread to other parts of your body. You are asked not to eat anything on the day of the scan. When you arrive you are injected with a radioactive drug after which you have to lie down for an hour while you wait for the radioactive juice to spread around your body. You are then put through the scanner which can also take up to an hour. This is more like the CT machine than an MRI – so again, you don’t have the claustrophobic feeling, but radiation is involved and it is quite a lengthy process – but completely painless.

ECG chemotherapyECG.  (Electrocardiogram). You will probably be given one of these before you start chemo to check that your heart will cope with the toxic drugs. Again, very quick and easy with no radiation involved. You will have some sticky patches called electrodes stuck to various parts of your chest, arms and legs. You feel nothing and it is harmless. It then picks up the electric signals of your heartbeat which is used to check that your ticker is tickety-boo.

ECHO Herceptin

ECHO. (Echocardiogram). If you are having Herceptin you will also have your heart regularly monitored as it can seriously affect the heart (as it did in my case – I had to stop Herceptin 5 months after having started. It isn’t common, but it happens, so it is important to monitor you closely). It’s a painless and harmless procedure with no radiation involved- rather like the ultrasound. You have a blob of gel on your chest and the consultant will slide the transducer around, taking various measurements and occasionally listening to the whoosh of your heart.

MUGA scan

MUGA Scan. (Multiple-Gated Acquisition Scan). This is another heart scan, used for drugs like Herceptin. You might be asked to fast for a period beforehand. Electrodes will be stuck to your chest and you will be injected with a radioactive tracer. You then lie still on a table while a special camera uses gamma rays to track the tracer and see how well blood is pumping through your body and how strong your heart is. This is a lengthier process than an ECG or ECHO and can take up to a couple of hours, does include radiation, but is completely painless (apart from the quick injection at the start if you’re not keen on needles!).