Nicola’s Story – Surgery in Scotland

Before and After surgery
Nicola’s arm before and after surgery

I was 36 when I was diagnosed with inflammatory breast cancer in 2010. It had spread to 18 lymph nodes and my collar bone. I had chemo, followed by a mastectomy and the lymph nodes were removed. I then had 35 sessions of radiotherapy and more chemo. As I had a lot of treatment, I felt it was inevitable I would get lymphoedema, but I really wasn’t told anything or warned about it.

In 2011, about a year after my treatment, I noticed this swelling in my arm and I was diagnosed with lymphoedema. It got worse and worse over time. A friend told me about the Hope Centre in Enniscorthy – a charity based centre for people either going through or recovering from cancer. I received MLD and bandaging treatment there. They were really amazing to me, but my arm continued to get bigger, sorer, harder to use and manage. It got so bad that I was limited to what clothes I could wear and every item I bought had to be adjusted, costing me a lot of money. One of the therapists tried to do the really tight bandaging technique which I had to get changed each day. This meant time off work and a lot of travelling. Unfortunately I got an allergic reaction to it, so we could go no further and I had to stop this treatment.

I was at my wits end and it was draining me physically and mentally to know there was no cure. I was getting really down about it. I felt like I fought cancer but this is the booby prize.

About 3 years ago I read an article in a magazine about a lady who had lymphoedema in her leg and had ‘liposuction for lymphoedema’ performed by a surgeon in Scotland. I began to research it and I contacted the hospital in Dundee. They explained what was involved and how I could go about applying for it.

I was so bad and frustrated that I genuinely would have paid privately by borrowing the money. However, they don’t do it privately, so our health service had to pay theirs. I had to get a form from the Treatment Abroad Scheme (TAS) in Ireland, as it cannot be done here. I then had to get forms filled out by my oncologist to recommend me for it. This was actually quite challenging, as there is such little knowledge about lymphoedema in Ireland and he was quite sceptical. But after he researched it, and with much pushing from me, he finally recommended me for the surgery. After a lot of paperwork, I was finally approved.

I had my consultation with the surgeon, Mr Munnoch, in Ninewells Hospital in Dundee in early 2017 and he said I qualified for surgery. He went through everything involved and showed me patients from 10 years ago who had it done and haven’t looked back. I went back to Dundee in April 2018 for my operation. I was booked in for 5 days just in case I got an infection and because I’m from another country. I had the operation on the Monday morning under anaesthetic. It involved 6 incisions in my arm, where they filtered a drain through and removed lymph deposits that had become hard (I guess like fat deposits). They removed 1.5 litres of fluid in total. Then a compression sleeve was fitted on my arm. This had been pre-measured from my good arm at my pre-op consultation 2 months previously. The operation took about 2 hours and I was quite sore for the first 48 hours.

It was daunting going to a new hospital in a different county, but they were really lovely in Scotland – so caring and professional.

The first time I had the sleeve removed in the hospital, l cried my eyes out with pure joy when I saw my arm back to normal again. It felt like that same emotion all over again when you are told your cancer is gone. It was very tender naturally, but it didn’t matter as I was so happy. The nurses showed me how to change my compression sleeve. I had to wear a very strong one that actually tied around my shoulder for the first 3 weeks. It was tight and hard to get on but comfortable when it was on me. I came home on the Friday and went back 3 weeks later for a checkup and new measurements for the sleeve I wear now that comes up to my shoulder.

Everyday I feel better and my arm is not a bit sore. It’s amazing to feel normal again, not be in pain or feel embarrassed how I look. Most of all I am so happy to buy tops and wear them straight away without having to have them adjusted. I went back for a second checkup 3 weeks later and was told there was a 100% improvement. I now have matching arms! I am back in another 3 weeks for my final post op check up and then I will see them once a year going forward.

I will have to look after my arm and wear the compression sleeve for the rest of my life but I honestly do not mind, I finally feel myself again and actually love my new arm.

People have told me they can see a difference in me…. that I’m much happier. I actually didn’t realise it was getting me down so bad until I had the liposuction for lymphoedema.

Nicola xx

Note to Readers
Nicola will be at our Open Day on 30th March 2019 to tell her story. Mr Munnoch, her surgeon, will also be presenting. If you would like to contact Nicola, please email us and we will forward your email to her.