Latest
Cowden syndrome
I too have cowden syndrome and many a time
I think why me.ive had 3 operations on thyroid.1 to take a sample, the other to remove half and then 3rd total thyroidectomy at 30 was when it wrapped around my airpipes in a dangerous way and had to come out. It was stopping me breathing.
I had lost my mum to cancer and was adamant if ever i had children id get regular mammograms so my children could have a mum around.at 42 cancer was found..I had a mastectomy and reconstruction.3 months later i had a reconstruction on other breast and chemotherapy which i hated as was sick as a dog.
It took 1 yr to get the results from a blood test as i asked for regular mammograms at 40.
I was put on tamoxifen. My periods started to play up.
Had to have polyps removed on and off for a few years till i had a prophylactic hysterectomy. At 50 i decided i wanted my left breast gone.i had a feeling.mammograms were clear but a grade 1 lobular cancer was found.
Colon is being monitored as is kidney where they found a mark as an incidental finding. 2 sites on the 'cowden list'.
I have had other thimgs to contend with unrelated to cowdens but this is something that always stay with me. I keep myself to myself and dont talk about cowdens with people who dont know me well. I have days the fight gets me down.grappling with thyroid tiredness and carrying on can be overwhelming but i try.
To anyone who has a rare disease, dont let anyone stare at you.we are unique.and for some reason , ive been picked.
