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I am 45 years old, Married to Sean for nearly 20 years and have 3 lovely children Hope is 16, Jack is 12 and Joe is 6.

Monday, 6 March 2017

A frequently asked question - How did I know something was wrong?

I thought it was about time I posted about how I knew to go to the doctor and ultimately was diagnosed with aggressive Stage 3 invasive Ductal Carcinoma with metastases in the lymph nodes. 

People understandably ask me if I found a lump. It's best to start at the beginning. I found a lump or my left breast felt 'lumpy' way back in the early summer 2015. I was going on holiday to Spain and I made an appointment for when I was coming back (as I had that doubt 'oh maybe it's because of my period.') and whilst I was in Spain I shared my worries with my friend Rachel. I went to the doctors on my return, she could feel it too and referred me. When you are referred in Leeds you have to be seen at The Breast Unit at St James' Hospital within a fortnight and sure enough I quickly received an appointment. 

I was very worried and my friend Dawn insisted she went with me and it was fab to have some company as we were there all day. They explained that because I was over 40 they do a mammogram both sides and then an Ultrasound on the affected side. They were very reassuring and explained everything to me, particularly what ‘normal’ breast tissue looks like. I had the tests then was called in for more pictures of the right side. When I went in I questioned this but the radiographer was insistent it was the right side. It transpired the left was clear, that it was glandular tissue. They then did an ultrasound on both sides and found an area in the right side (what they had seen on the mammogram). They said they were confident it was a fibroadenoma.

It was obviously a shock to go with a possible problem in the left side yet they found something in the right. I met a lovely consultant – Shireen Mackenzie – who was very knowledgeable and reassuring. She said despite them thinking it was benign, given my history and the misdiagnosis, they would go ahead and do a vacuum assisted biopsy to get a definitive answer. They did this they following week (MOST unpleasant :-/ ) Another few days and sure enough we returned and it was confirmed thankfully as benign. It was a really worrying few weeks and I was really scared.

The lumpiness never really went away in the left side and I returned to the GP that November and was again referred to The Breast Unit. As I’d had a mammogram only 4 months earlier I only had an Ultrasound. Again, I was told it was glandular tissue and the only thing on the Ultrasound was ‘thickening’ above the left nipple. So again, I went away reassured.

I am telling you this as it’s key to what happened in 2016. I don’t remember when I felt a lump in the left side again. I don’t think I could feel it when we were in Portugal in the Summer, but I can’t be sure. I think I first felt it in September, but obviously assumed it was ‘glandular tissue’ again, so I thought no more of it. As the months went on I did continue to feel it and I suppose it got bigger, so much so Sean could feel it when I pointed it out. It began to play on my mind a little and when I noticed a tiny stretch mark above the left nipple, there were none anywhere else, on either. It reminded me of breast awareness information that tells us to look out for skin changes. I thought I should get checked out again and tried for a GPs appointment and couldn’t get one that ‘fitted in’ with our hectic schedule but I still wasn’t really worried at this stage and to be honest I wasn’t at ANY stage. I made an assumption…wrongly…that it was nothing to worry about. When Sean agreed in December it felt quite ‘prominent’; he can never feel anything like that…lumps and bumps, babies kicking etc. so again it niggled at me. 

Also another myth to 'bust' is that my breast has been quite painful and I always assumed the comment that 'if it hurts it won't be anything bad or sinister' held true. Wrong. Malignant AND benign conditions can cause pain, mine did and still does, quite a lot. I'm sure I'm not the first and won't be the last to assume this based on misinformation. It helped me, along with a combination of events to make a wrong assumption and therefore reassure myself but ultimately put off getting checked. My cancer got bigger in the meantime and spread within the breast - a main tumour and 9 satellite smaller tumours or nodules, into my lymph nodes too. It has major implications for treatment - needing chemo, surgery and radiotherapy. No reconstruction possible at the time of mastectomy due to needing radiotherapy. Definitely a mastectomy not a lumpectomy due to the area involved. Hindsight is a great thing but I can't help kicking myself. Yes I know now and am getting something done but this will involve more treatment, a hugely prolonged timescale and inevitably more pain, suffering, psychological effects so DON'T PUT OFF GETTING CHECKED! 

On my Birthday, December 15th, I met my lovely friend Rachel, who had been undergoing chemotherapy for breast cancer, for a coffee. I ended up telling her about the lump and she was insistent I get it checked. I made an appointment when I left, for the following day with the GP. Rachel had told me she had gone to The Yorkshire Clinic to a One-Stop Clinic where you see a consultant, have a mammogram and ultrasound, any biopsies if required then get the results of the scans all on the same day.

As I am covered by Private Medical Insurance and it was so close to Christmas I thought I may get seen quicker via this route as it would be New Year for the Leeds Referral. I checked both the Clinic and the Insurance who said they would cover me and I could be seen on the 20th. The GP again could also feel the lump but thought it may be a cyst and did the referral. I still wasn’t worried, not really. Unless I felt it when showering or dressing, I didn’t even think about it. I went to work on that Tuesday and was in a meeting until 1.15pm and dashed off to the hospital for 2pm, still not worried. It hadn’t even crossed my mind that I had Breast Cancer. I was just expecting them to say once again it was glandular tissue. How wrong was I?

Please get checked, always, no matter how many times and don't assume it's benign even if it was last time or the time before that or the ten times before that. This is the mistake I made.

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