Hi my name is Michelle. I’m 44 I come fro Tredegar South Wales, UK. It was just over 16 years ago and I was 39 weeks into my pregnancy with my 3rd child. Was very excited, as it was a boy as we lost our second child to cot death two years before.
I went for a check up and I had what they call a mini scan and they found a lump and said it was attached to my son’s head. The consultant said I needed to be admitted to hospital and my labour to be started. I had my son at 9 o’clock that evening and was so pleased that the lump was not attached to my son but to myself so they had to oust the lump to one side to deliver my son.
I was told that it was a fibroid and I would need injections every month for 6 months to reduce the size before they could operate. I was feeling pretty low between one thing and another and these injections did not help matter for me as it put me through the change. My hormones were all over the place but if it helped it would be worth it.
Went back for my 6 month check and scan showed it had increased in size it was larger than a grapefruit at this time so needed to go in and they had to operate. After the operation I was told they were doing biopsy to see what it was, the results came back Desmoid Tumor. Was sent home to rest and take things easy after a short space of time I felt unwell again so had another scan and it showed the Tumor was back my consultant said he couldn’t carry out another operation and if it was ok with me I could be seen at The Royal Marsden London under Prof Thomas.
My appointment came through and went to London and was greeted but a wonderful surgeon. He said don’t worry I will get your sorted I knew I could trust this man. I had the operation under his care and was in for nearly 2 weeks and wasn’t well after the operation as I lost a lot of blood and needed a few blood transfusions. I later went home to recover and continued with my check ups and 6 months later didn’t feel well again, had scan and it had come back.
Ok I can get through this again I have done it twice, I was told I would need the lower abdominal muscle removed and replaced with mesh. Had the operation went home was tuff going to start with as couldn’t do much again but thought great this could be good sign but no 6 months and it was back. So another operation and they had to do full reconstruction with mesh of the whole abdominal wall. Recovery took a lot longer this time round but was hoping this would work for me. Yes it did I have been tumor free in the tummy.
A few years passed and I found lump on my shoulder so had scan and yes I was right with what I thought another tumor so that was removed and yes 6 months later it was back I thought why me again! Had the operation and had my regular checks to make sure all was ok but yes 6 months later it was back but not one two but three this time one on each shoulder and one attached to spine. I went in for the operation, but they couldn’t remove the entire tumor that was attached to my spine so they shaved the bone slightly. Prof said he could not do any more surgery to the neck or shoulder area if it did come back as he removed 2/3 of the plexus muscle. This has left me with a dropped shoulder on both sides also very uncomfortable and frustrated with it at times. Prof said I needed radiotherapy to hopefully stop this coming back my treatment finished 16 months ago and even though I have not been told its no longer there as the muscle that’s left is fried and hard to tell what’s what so they say, but I don’t feel to bad in myself at the moment.
As to the FAP department a nurse asked if I had been to genetics clinic I said no so she said to go to my GP to be referred which I was I had the blood test and yes I had that too. My two children had the test and thank goodness they have not got it. My two brothers have this illness but my sister was a lucky one that hasn’t got it. My three cousins have it to and one have had her operation 9 weeks ago but having problems bless her.
Going back to myself I am unable to have the operation due to the mesh in the tummy area so it just colonoscopies to keep eye on things. Hopefully they will be able to enter the body and do the operation in the future but its fingers crossed until then. Few of the polyps are 10mm and consultant said it’s the size that they can turn to the nasty Cancer. But got to stay positive with it I’m a fighter always have always will but one thing this illness has taught me it’s to be strong and positive. That’s my story as to date so if anything else does happen I will add to the post. Thank you to all who took the time to read my story. 🙂