Tag Archives: Breast Cancer

Intro

2 Jan Light at end of tunnel

Hello folks,

I was diagnosed with an aggressive primary, locally advanced breast cancer last year at the age of 33, and kept a journal of my experiences and tips that helped me through treatment. Apart from the cathartic element of sharing my experiences and tips (which I am doing in an A-Z format – hence the name!), I do hope that they will be of help to someone out there facing the cr*pness that is cancer. Please bear in mind that these posts are based on MY personal experience and I am not medically trained, so any references to the medical side of things is based on what I’ve been told or read – do not take my word over your healthcare professionals’! Please remember we are all different and will react in different ways to everything “C” – both emotionally and physically. Much of what I write will not be applicable to those with secondaries or other types of cancer.

Breast Cancer TreatmentIt is a bit of a work in progress and I will be updating it daily over the next few weeks, so please bear with me.

To any of you about to start treatment, it’s not as bad as you think it’s going to be. For those of you in the throes of treatment, there is light at the end of the tunnel and you are getting closer to it, day by day.

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Index

20 Dec a to z of all things c

A to Z of everything C

This blog is in the process of being written and links will be made live as the post is published. If you would like to receive notifications of a new post, please follow me – either on FacebookTwitter or by email (enter email address on the sidebar on the right).

Introduction

A is for… Alternative and Complimentary Medicine

B is for… Beauty Tips During Chemo

C is for… Chemo Schmemo

D is for… Diagnosis – A Life-Changing Event

E is for… Emotions

F is for… Family and Fertility

G is for… Gift Ideas

H is for… Hairloss

I is for… I’ve finished but I still feel rubbish…

J is for… Jumping the Gun – “Scanxiety”

K is for… Keeping Hair – Cold Capping

L is for… Lymphoedema

M is for… Menopausal Symptoms

N is for… Nutrition and Diet

O is for… Operations

P is for… Preparing Yourself for Treatment and Surgery

Q is for… Quacks

R is for… Reconstruction

S is for… Sex and all that Jazz…

T is for… Tamoxifen

U is for… Underwear

V is for… Virtual Friends

W is for… Weighty Issues

X is for… X-Rays, Tests and Scans

Y is for… YAAAAAWN – Dealing with Fatigue

Z is for… Zapping those Cancer Cells – Radiotherapy

A is for… Alternative and Complimentary Medicine

20 Nov Alternative Medicine Cancer

This is a bit of a minefield and I’m not going to dish out any advice as don’t want to give you any wrong info. All I would say is check with your oncologist before you use any alternative or complimentary medicine, vitamin and mineral supplements and even aromatherapy agents.

For example, I was given some lovely lavender bath oil as a de-stressing pressie, but was then told that it can mimic oestrogen and encourage the tumour to grow. I was also given some echinacea and ginseng to boost my immune system, but the concern with this is that it can protect cancer cells from chemotherapy. Ditto with St John’s Wort. I never took it – but was advised that it can reduce the effect of chemotherapy by up to 50%.

So best to check before you take any vitamins or natural remedies. You can then make an informed decision as to whether the benefits outweigh the risks.

Alternative Medicine Cancer

C is for… Chemo Shmemo

20 Nov Chemotherapy sickness

Everyone reacts differently to chemo but the majority are surprised to find it’s NOT NEARLY AS BAD as you had expected it to be. For me, it was like a bad hangover that lasted for a week or so after each chemo session. Actually, I guess that’s exactly what it is – although this time you’re flooding your body with poisonous chemicals to zap those pesky cancer cells rather than poisoning yourself with 2-4-1 cocktails. So basically you get the hangover without the preceding fun. I was never sick but felt very queasy, headachey, tired, fuzzy and emotional. The only thing that made me feel a bit better was eating!  And, like a hangover, salad and fruit just didn’t hit the spot – it had to be as carby as possible.  I, along with many others, had expected to lose weight on chemo (the only silver-lining to it all as far as I was concerned!) but no! Most people pile weight on due to the steroid-induced munchies and queasiness and I was no exception and piled on over 2 stone…

dep_6700130-Cute-chubby-girl

For primary breast cancer, the drugs prescribed differ. FEC tends to be the most common one, but you might start off on AC or EC. These are the ones that can make you feel queasy (and also give you red pee…!). Some people are continued on these for 6 or 8 sessions, while others switch over to T or TAX (Paclitaxel or Taxotore). These drugs don’t cause sickness but can cause aches and pains. All of these cause hair loss. The letters are acronyms for the drugs that make up the regime. If you click on the links it will take you through to the Macmillan website where they explain them in depth. A couple of less common regimes are TAC and CMF. Some drugs are given weekly, others fortnightly, but most 3-weekly. The drugs you are prescribed will vary on your pathology and your oncologist – so check with them if you want to know why they have opted for your specific treatment plan.

The chemo nurse administers the chemo either via a syringe or with a drip, depending on the drug. They will access your veins either using a cannula (where they will need to access your veins at each session), or you might be fitted with a central line, PICC line or portacath. They start off with your anti-sickness meds and steroids (which make you feel as though you have ants in your pants – weird feeling) and about half an hour later will administer the drugs.

My top tips for coping with chemo are as follows:

diary

1) Keep a diary. For the first session of each drug type, just take it easy, listen to your body and make a note of any side effects you experience. This way you can bring them up with your GP, breast care nurse or oncologist which will allow them to adjust the drugs or prescribe something to ease the symptoms after your next session. By keeping track of your symptoms you will also soon learn which days you want to hibernate (and therefore get help with walking the dog, picking the kids up etc) and also which days you feel good (and can book FUN things to look forward to – seeing friends and family, meals out, weekends away, shopping trips etc). Of the ladies I have met during my treatment we all reacted in different ways. Some worked on their good days, others took it easier. You’ll soon suss out what works for you.

vomiting-cartoon

2) Sickness. You shouldn’t be sick. I HATE being sick (would go so far as admitting to a vomiting-phobia) and couldn’t believe it when my breast care nurse PROMISED me that there would be no vomming! I thought chemo = days with your head down the loo or in a bucket. However, anti-sickness meds are excellent nowadays, although it does seem as though they start you off on the lower (and cheaper) meds and increase it if you need it. So if you are sick or do suffer from severe nausea, let your breast care nurse or oncologist know. I felt really sick for the full 14 days after my first chemo (had mine every 2 weeks), but was given Emend for the remaining sessions. It was my saviour and stopped the queasiness instantly. That and comfort food and Queasy Drops!! Others swear by morning sickness remedies such as eating little and often and eating ginger. And others used motion-sickness bands and Nux Vom. If you’re a bit of a sickly person (ie get travel sick and prone to morning sickness) or if you hate being sick, like me – it’s worth telling your oncologist and asking them to prescribe the stronger anti-sickness meds from the start.

no hair

3) Hair. I think the 2 scariest side effects associated with chemo are the sickness and the hairloss. Now, while you shouldn’t be sick, most breast cancer chemotherapy agents do, unfortunately, cause hair loss. Everywhere. And yes, hair grows back, but that doesn’t make you feel any better about the prospect of losing it. And it’s the obvious tell-tale sign that you have cancer. I managed to hold onto a bit of head hair by using the cold cap which freezes your head, shrinks the blood vessels and therefore allows less chemo to reach the hair follicles. As the hair loss thing is such a big issue, I’ve given it it’s own posts. See K is for… Keeping Hair – Cold Capping for my experience. Another friend who was much more gutsy than me and embraced the clippers has shared her experience under H is for… Hairloss.

4) Other side-effects and symptoms. The list of possible side effects is quite daunting and ranges from constipation to diarrhoea, mouth ulcers, flaking skin, acid reflux, pain, headaches, insomnia, fungal infections, hot flushes, depression, early menopause, weight gain etc. Most will suffer from very few of these – the unlucky ones will get quite a few. But DON’T SUFFER IN SILENCE. If you get any nasty side-effects after your first chemo, see your GP or oncologist who will be able to prescribe remedies for most of the above. My physical symptoms were limited to severe acid reflux (I spent one night sleeping sat upright as it felt like I had molten lava coming up my throat when I laid down) and mouth ulcers – but I booked to see my GP immediately who gave me a script for tablets and a mouthwash that soon cleared both symptoms up. And remember if you’re feeling crappy – those pesky cancer cells will be feeling even worse. Also see post M is for… Menopausal Symptoms for tips on dealing with being thrust into chemopause and W is for… Weighty Issues about weight gain on treatment.

5) Steroids. The steroids given to prevent allergic reactions to chemo and for their anti-emetic properties unfortunately have some unpleasant side effects of their own. For me, each chemo session was accompanied by a constantly scarlet face and a manic steroid-high followed by a dramatic comedown when I sank into the depths of despair and cried for 24 hours non-stop, only to awaken the next day feeling OK again! Not much fun, but it only lasts a few days, and if you’re keeping a diary and you’re expecting it, you can ride through it with the confidence that you’re not going doolally.

6) Avoid your favourite things on chemo-day. Although I was never sick, my body obviously realised it was being poisoned and developed weird connotations. Imagine the feeling you get when you think of the alcoholic beverage that tipped you over the edge (sambuca = bleugh). I now get the same feeling when I think of cheese and tomato sandwiches, green tea, nougat, Chanel Mademoiselle perfume (used to be my fave) and a couple of items of comfy clothing that I frequently wore to the chemo unit. Maybe you could use it to your advantage if you have a particularly prevalent mars bar/crumpet/pickled onion habit that you’re looking to shake.

7) Drink LOTS of water. Lots and LOTS of it! At least 2 litres a day. Not only will it flush the poison out of your system quicker but it’s also good for your parched skin. Tennisgirl was also on my water-consumption case and arranged for a lorry-load of Highland Spring to be delivered so I could monitor how much I was drinking. About 800 litres were delivered to my door!

powerport

8) If you have measly veins or hate needles, consider a port, central or PICC line. I had a PowerPort (so American!) which was situated on my chest and sits under your skin so you can wash and swim as normal. (Unfortunately the first one went a bit wrong and I ended up having an emergency op to have the tubing removed from my neck and heart – but that’s another story and is a very rare occurrence ). Needles are still involved as the chemo nurses have to use a small one to access it, but it was numbed first so I never felt a thing which was a relief after so many fumbled attempts by nurses and doctors to access my skinny, little, deep-set veins. My chemo and Herceptin were administered through my port and blood was taken from it for my fortnightly blood tests. I’ve since met girls who had their ports in their arm. I wish I’d had the option as hate the scars on my chest – so that’s something to bear in mind if you’re considering one.

Pills

9) Take all of your medication as instructed. After your first chemo you will leave with a bag full of various tablets. Take all of them as instructed – you have been given them for a reason – mainly to reduce the number of side-effects and to make the whole experience easier. For example, don’t decide not to take the anti-sickness tablets because you’re not feeling sick and don’t feel that you need them. You don’t feel sick because they are working! And if you stop taking them and then get sick, you wont be able to keep them down long enough for them to start working again. ‘Nuff said.

10) Neutropenia and infection. Your white blood count (and therefore immune system) will be abnormally low normally 10-14 days after your chemo and it is recommended to avoid very public places (public transport, theatres, restaurants, swimming pools etc), eat according to pregnancy rules (no raw meat or fish, shellfish etc) and obviously do your best to avoid ill people! Wash your hands regularly and carry an anti-bacterial gel with you for occasions when you can’t. You will also be entitled to the flu jab. If you feel unwell or if your temperature rises to 38 degrees or above, contact your Breast Care Nurse or chemo unit immediately – or if they are unavailable, head straight to A&E. Inform the receptionist that you are a chemo patient as they will then do their best to isolate you from more germs! I ended up in A&E being neutropenic after my first chemo. I was givin IV antibiotics and sent home. For my following sessions I had to administer a Neulasta injection the day after my chemo and was invincible for the remaining sessions! My bloods were higher than they were before I started chemo.

Taste Buds Chemo

11) Weird taste buds. I have NO idea why – but chemo affects your taste buds and can give you a constantly yucky taste in your mouth which then makes food taste pretty gross too. Queasy Drops were my saviour – the sour raspberry ones really cut through the icky taste. Pineapple tasted really good (in any format) as did spicy food (although some doctors recommend not eating spicy food when having chemotherapy treatment as the chemo affects the stomach lining). Boiled citrus sweets and mints also took the edge off it. Unfortunately there doesn’t seem to be a miracle cure. It’s annoying – but it passes – and certainly didn’t put me off my food!!

12) Plan something to look forward to for the end of chemo. The day of your final chemo session is a bit of a let-down as you feel as though you should be celebrating, but know you still have the remaining side effects to get through. The day that you REALLY feel as though you can celebrate is the day 2-3 weeks later when you would have been having the next session if it had continued. The relief is amazing. And every day you feel stronger and healthier and hairier… So, plan something fun for a week or 2 after your final chemo. You totally deserve it. I went to Cornwall with my friends for a week of good food, bubbles and board-games and then with Mr B for a spa weekend in a luxury hotel. It lovely to have something to look forward to and to escape from the constant hospital appointments for a while.

to-do-list

13) Be aware that some side effects last after your final chemo. Unfortunately the side effects with chemo don’t stop with the final treatment. Naively, before starting chemo I thought it was all about vomiting and hairloss. I didn’t realise that there are other side effects during and for a long time after chemo. I really, REALLY struggle with chemobrain. My brain is mush. I used to be an intelligent, efficient, multitasking, thoughtful person with a practically photographic memory (if I do say so myself!). I am now so forgetful it’s not even funny.  I have zero concentration and multitasking is now a thing of the past. It is rather confusing, inconvenient and bloody frustrating. I mention this, not to scare you, but to make you aware of it, so that if/when it hits you don’t think you’re going mad (like I did! Had obviously diagnosed with early onset dementia or brain secondaries!). All we can do is embrace the to-do list and wait for our little grey cells to start behaving again! I also struggle with eyesight, severe fatigue, menopausal symptoms and my weight and fitness levels. See I is for… I’ve finished but I still feel rubbish.

D is for… Diagnosis – A Life-Changing Event

20 Nov C-Bomb

On 23 May 2011 I was told those terrifying and life-changing words – “you have cancer”. (Well, actually it was more along the lines of “you have an aggressive malignant invasive ductal carcinoma” – but it boiled down to the c-word). Having been promised for the previous couple of months that the swelling in my breast DEFINITELY WAS NOT cancer, I wasn’t prepared. I, myself, had begged for the biopsy just to put my mind at ease and, as such, was expecting them to tell me I was silly for having been so worried and to bugger off and not worry about it. However, as my consultant uttered those words (and all of the terrifying words detailing my diagnosis that followed), my world fell apart. I felt I had just been handed a slow, painful, undignified death sentence. My future, previously roughly mapped out, became a big black question mark. My hopes and dreams and plans for having a family were obliterated. I was scared of the treatment but knew the alternative was worse. I was also scared of the body-mutilating surgery. I suddenly had no choices or control over anything in my life. And I felt terribly guilty as I wasn’t the only one affected. Mr B, my family and friends were also going to be affected.

explosion-2

That was a Monday. The following 3 days were a whirlwind of scary appointments. An MRI to check the extent on the local spread. A CT scan to see if it had spread further which would have upgraded me to a terminal diagnosis. An appointment with a geneticist to start the ball rolling on whether I carried either of the BRCA genes. An appointment with a fertility expert to see if I could freeze embryos before commencing an aggressive dose dense chemo regime that would probably leave me infertile (I couldn’t – my tumour was too large, had spread to my lymph nodes and was fuelled by oestrogen). I was appointed an oncologist who said more scary words about my tumour like how “aggressive” and “serious” it was and told me my treatment plan. I visited the chemo ward and had bloods taken and my heart monitored in preparation for starting treatment. I just couldn’t believe that I was about to become part of the same world as these patients, no hair and hooked up to various drips and beeping machines. Then on Friday, just 4 days after I was diagnosed but what felt like an eternity due to all of the pokings, proddings, scans and appointments that had taken place since Monday, I had an operation to place a portacath under the skin in my chest and chemotherapy commenced.

For those of you going through this dreadful rollercoaster of emotions and endless hospital appointments, having been told those awful words, I totally feel for you. It is a terrifying and lonely place to be. However, you will slowly get your head round it and start feeling braver and stronger once you get a bit of control back in your life and start your treatment plan – that’s your chance to fight back. And the treatment is finite – there is an end in sight. Once the treatment is done life does feel good again! Different, but good. You will start hoping and planning and dreaming about your future again. Take that from someone who’s been there and done it!

If I could go back and give myself some advice for getting through it, it would be as follows:

1) DON’T GOOGLE. (Or read the Daily Mail!) So much of what you find on the internet is out of date, will end up scaring the cr*p out of you and, most importantly, could have been written by ANYONE. Stick to trusted sites such as Macmillan or Breast Cancer Care, try one of the many helplines run by trusted professionals such as Breast Cancer Care or call your breast care nurse or Macmillan nurse .

keep-calm-and-don-t-google-it

questions2) Keep a list of questions. My mind went blank every time I was with one of my consultants, so I kept a notepad constantly at hand to jot down queries that had been bothering me in the run up to my appointment. Sometimes a question would pop into my head in the middle of the night and I’m not sure I would have remembered them all through the emotional turmoil. I have found that many consultants are not very forthcoming with information unless you ask them – as many patients don’t actually want to know about their pathology or which drugs are being administered. I wanted to know EVERYTHING and wanted to understand EVERYTHING. I was probably a bit of a pain in the a*se, but it was what I needed in order to cope, and once I had a better understanding, knew the treatment plan and what was in store I felt much calmer and much more in control.

3) Deal with it in a way that suits YOU and YOUR circumstances. I needed to cry A LOT and talk A LOT but I found it very hard to spread the word as it was too difficult repeating and reliving the hospital appointments and what was said over and over again, so Mr B kept my family informed and Tennisgirl kept my close friends informed. I had less than a week from being diagnosed to starting chemo, at which point I battened down the hatches, hid away from the world and got on with it all. Some are very open about their diagnosis and treatment and keep running commentary on blogs and Facebook. Others (maybe with young children) don’t want anyone to know, don’t tell anyone, and do all they can to assume normality. There’s no right or wrong way to deal with it – you just have to deal with it in the way that is best for you.

4) Support is important. Previously I was a fiercely independent person, but the whole experience has softened me (in a good way) and I am now able to ask for help and support when I need it. If the tables were turned you would be there for your partner/friend/family member wouldn’t you? So make use of the offers of help and support when you need it.

5) Don’t be too fearful of chemo. I know the word is terrifying and the thought filled me with dread. But it is just a medicine that we are lucky to have to blast those chemo cells. It wont be as bad as you expect. I promise. See my post C is for… Chemo Shmemo.

6) Try to retain some normality in life. Do normal, everyday things so that you feel as though you still have some control over your life and to make the constant cancer stuff less all-consuming. Maybe some work, the school runs, walk the dog, see friends, redecorate a room…whatever works for you.

7) Be prepared. Take a leaf out of the scout manual and use the time after diagnosis to get prepared for your surgery and treatment. Small things such as visiting the dentist (you are not meant to go during treatment due to the risk of infection), clearing your diary of non-essential things, visiting the chemo ward(I found this really useful as knowing what to expect helped with my pre-chemo anxiety), or having a wig-fitting or ordering some scarves or buffs in preparation for hair loss. See my post P is for… Preparing Yourself for Treatment for other ideas. Anything to help you feel more prepared and more in control.

8) Remember, it’s YOUR body and YOUR life and YOU have some say in what happens to it. You need to feel happy that the surgery and treatment is the right one for you by understanding the reasons for it – not just right for the consultant. Everyone is entitled to a second opinion if you want one – either to reconfirm what you’ve been told by your assigned consultants or if you don’t feel very confident or comfortable with them or if they don’t carry out the procedures you want. I had quite a few opinions…! I had a second opinion with an oncologist who specialises in breast cancer in younger women who confirmed that the treatment plan my assigned oncologist had suggested would have been the one he would have prescribed. Jolly good. Felt confident about all of that after that appointment. Bring it on. But then I had a few second/third/fourth opinions with surgeons to find one that I was comfortable with and trusted (lost all confidence in my original surgeon after the months of misdiagnosis and the way he dealt with it once the diagnosis had been confirmed) and one who would do immediate reconstruction. Some surgeons specialise in the removal, but not the aesthetic plastic surgery side and will not do immediate reconstruction – which I was adamant that I wanted. – and others only do specific reconstruction and there might be other types that would me more suitable for you. In the end I transferred to a fantastic oncoplastic surgeon who gave me some fantastic brand new boobs at the same time as removing all of the bad stuff.

Katie Price at Selfridges

Well…not quite that big. (Sorry Mr B…)

9) Seek help if you need it. It’s a MASSIVE thing to have to deal with and affects so many areas of your life. Your mortality, your future, your family, your body confidence etc. It is enough to deal with even if you have a perfect life, but unfortunately most of us don’t and life doesn’t stop, so if things weren’t great beforehand, those issues will still be present, and other shit can hit the fan while you’re dealing with your cancer treatment. There is no shame in getting some help if you need it and don’t feel as though you’re coping very well. Most cancer hospitals and support centres (such as The Haven) offer free counselling, otherwise your GP will be able to refer you and discuss antidepressants with you to give you a helping hand through this difficult period.

friends10) Remember you are not alone. I was in a very isolated, lonely and scary place at the beginning, but slowly felt less alone as I met others going through the same thing. There are some fantastic support groups and forums out there. I went on the Breast Cancer Care Younger Women’s Forum a few weeks after I was diagnosed which was a godsend for me. There were fantastic seminars on issues such as fertility, reconstruction, nutrition etc, which were really useful – but most importantly for me I met some great girls my age, going through the same crappy thing and it was wonderful to make some friends who just “got it”. 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. If you click here you can see me in a video talking about my experience. I’m the one in the orange dress on the beach. I also signed up to the Breast Cancer Care Forum and met a couple of girls at my hospital and found it an invaluable support to be able to talk, share experiences and ask questions with others who understood what I was going through. I know some will be lifelong friends.

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.

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.