My name is Elaine Cummings (Laney) and I’m in my forties. Some people say I’ve changed over this last year. I *know* I’ve changed. I believe anyone having the life experience I’ve had over this last year would change too. I hope I’ve changed for the better.

My metamorphosis started last summer. I noticed my right nipple was itching a lot and I put it down to something that happens when you’re menopausal and didn’t think it was anything bad, just an itchy nipple. On Sunday, 13th August 2000 I reached over my desk for a pen, “OUCH!” A stabbing pain in my breast like no other!  It really hurt and when I felt my breast I could feel a substantial lump in there – there had been no lump the night before when I’d done a self examination. I got really scared; being home alone didn’t help either. My husband and son were visiting the in-laws.

To cut a long story short, what happened over the next two weeks was a mixture of doctor and nurse blunders, misdiagnosis, and terrible fear and pain. I would not wish any of that on anyone – that’s why I’m campaigning for something to be done about the misdiagnosis of the disease I was later to be diagnosed with. In actual fact, my sister Pat played the hugest role in getting me diagnosed quickly and for that I owe her my life and my undying love and gratitude.

I went to the doctors the day after I found the lump – as soon as I could really – and within a few days my breast was hot, swollen, painful and very uncomfortable (and no lump to feel!). I was eventually sent to hospital thinking I had a breast abscess – scary enough – but what transpired went off the scale of scariness.

I had ultrasound scans, a mammogram, and two needle aspirations. The first one got nowhere, and the second one produced “a suspicious reading”. I was therefore scheduled for a biopsy as soon as possible (about an hour later – getting to feel the scale of the panic going on around me yet?). The biopsy wasn’t a pleasant procedure, the local anesthetic did not take all the pain away, but I do understand that it was totally necessary to get the diagnosis right. Each time the little ‘gun’ grabbed a sample of tissue it hurt more – tears rolled down my face as the blood rolled down my chest.

A few days of agonizing waiting later… the doctors huddled round my bed in the hospital to tell me the most devastating news that every woman dreads… I had breast cancer.. but not the usual breast cancer – I had Inflammatory Breast Cancer (IBC).

The surgeon (Mr. K Clarke), oncologist (Dr W Taylor) and Macmillan breast nurse, (Mrs. A Moffa) who are caring for me, are all wonderful and very dedicated people. I can never thank them enough, they are constantly in my thoughts and prayers and are, in my not-so-humble opinion, among the finest in the world.

I had never heard of this IBC thingy, nor was I aware that there were different types of breast cancer – and while I was hurried along a treatment path, I really felt too scared to find out why everyone seemed more panicked than I was over this ‘Inflammatory’ Breast Cancer. It wasn’t until I’d finished 5 lots of strong chemotherapy that I dared to look for information about IBC, and when I found out.. it hit me harder than a brick on the head! I was dumbstruck… reeling and in fear.

My treatment, although grueling and at times quite unpleasant, has saved my life – as recently as 10 years ago the statistics for a 5 year survival were only 2% *gasp*. Thankfully, today the survival rate is much better and I truly believe that if we educate the public to be aware of the symptoms then we can make the survival rate even better than it is today. Chemotherapy is not an easy journey to have to make, but make it we must if we are to battle on. Some people get very few side effects – others aren’t so lucky, but as I tell everyone, “If it (chemo) was ten times worse to endure, GIMME GIMME – it’s saving my life!”

I had five courses of AC chemo (lost all my hair within about 2 weeks of the first one) prior to surgery. The chemotherapy nurses were wonderful and they used to really take their time with me. If anyone reading this is looking for information because they’ve just been diagnosed – do tell your chemo nurses to take it slowly – the side effects and nausea really aren’t so bad if the stuff is put into you very slowly. After my first chemo, my gall bladder reacted and I was sent from scans thinking the worst – this pain was awful and I thought immediately I had liver tumors etc… but you know, just because you have a cancer diagnosis – it doesn’t mean to say that every pain and ache you have needs to be related. (I know that’s easy to write down and say but hard to fathom when you are anxious and it’s the middle of the night.) The lady who did the scan was amazed to see me punch the air and shout, “Yessssssss!” when she said she could see some large gallstones… heck, gallstones were nothing compared to what I was imagining. Having said that – they are painful!

When my sister and I headed for the city to shop for my wigs I had no idea what style or color to have and I think I tried on just about every one in the shop! I ended up with two (got another later too) which were great. Short and sassy and one was blonde, the other a burgundy/brown. I have to say that this was the easiest hair period of my life. To be able to brush your hair, get it right, then pop it on your head is great! My blonde wig even fooled a hairdresser who felt it and told me my hair was “… awfully dry, Madam.”  We all had a good laugh when I told her it was a wig she was feeling.

The morning I woke up after my surgery I felt more beautiful than ever – having had all the ugliness that I’d been walking about with for four months taken away from me. My first words on waking when I saw my husband’s wonderful caring face looking at me were, “We did it!”. I hope that positive attitude never leaves me – it’s hard some days, and the nights are long when your mind won’t quit turning over all the odds which are stacked against you – but with the family and friends I’ve got around me, I have to keep that attitude up!

The histology results after my operation were very encouraging, and after a lot of consultation it was decided to give me more chemo of the same AC type as it had worked so well. Then after that, I had problems with my scar not healing (trust me eh?) and had to delay my radiotherapy a little while. The oncologist decided to go ahead with the rads even though I wasn’t healed – telling me it would just prolong the healing. I had to have my wound packed and dressed daily for almost 7 months – sometimes I’d cry for an hour or so afterwards, but eventually it did get a little easier, and the district nurse team who treated me for this were great too. After about 6 months it started healing noticeably, and when it was healed I got my prosthesis, which is great and I’ve had no trouble or fuss with it.

Some of my so-called ‘friends’ couldn’t handle what was going on with me and totally shunned my very existence. This hurts! Anyone reading this who has a friend, acquaintance or relative suffering – DO SOMETHING! Don’t just ignore it. It hurts! On the other hand – people who I hardly knew did the most wonderful things – sent me cards, flowers, came to visit and generally restored my faith in mankind.

The hardest thing for me to take was when people would tell me of someone they knew who had breast cancer “… twenty years ago, and is doing fine.” Well yaboo shucks to them! I wanted to scream at them – “Go tell Linda McCartney that!” or “Was it IBC?” My insides would knot up – and I’d have to smile and say “That’s great.” Inflammatory Breast Cancer isn’t the ‘norm’. It’s the pits! But I, like so many sisters at my side – WILL survive!

When I summoned up the courage to search the internet for help in my quest for knowledge about IBC, I came upon an email support list set up by Pete Bevin – a truly wonderful resource and I don’t know if I would have reacted to all this with the determination to make my mark like I am doing without it. Well done Pete and all my IBC sisters!

My husband Ralph has been a tower of strength and support throughout all this, and although I always knew he loved me…. he’s proven his love for me beyond my wildest expectations. I believe our love for each other has benefited from this disease, as awful as it is – some good has come out of it. Next May (2002) will be our Silver Wedding anniversary and I hope we will be spending it in New Orleans; we are both looking forward to being there. We will meet up with Mona and Steven; Mona (my sister in Los Angeles) flew over to be with me straight after my surgery. It was a great thing to do – and I do know how hard it was for her – but it was truly wonderful to have her here with me when I needed it most, thanks again Mona.

Any woman reading this should self-examine every month – a few days after a period – and make sure a doctor examines you if you notice any changes at all. There are a lot of treatment options these days – and survival rates keep getting better. Having said all of that though – many women are terrified (just as I myself was) when they notice anything different. Don’t delay – delaying a medical examination could endanger your life!

If a woman presents with mastitis symptoms and does NOT respond significantly to antibiotic treatment within 5 days, then she should be immediately referred to a breast specialist for a biopsy with the utmost urgency.