Saturday, 13 August 2016


Almost three years ago I decided to start blogging about my life with Cowden's syndrome (CS), a rare genetic disorder which increases my cancer risk because the gene that controls cell growth is damaged. I had no wish to write for " pity", but I did and still do have an urge to inform others, about what I feel is a condition that effects more people than the accepted risk (1 in 200 000) indicates. As the months unfolded and my blog grew, one of my own daughters was also diagnosed with CS. Luckily our second daughter tested negative, but the result is bittersweet when both are not negative.

Ready for surgery AGAIN

Up till now Ashton's journey with CS has been different to mine. Regular readers will recall sixteen brain procedures in 3 years and the overwhelming grief as cells multiplied without hesitation causing no end of life threatening problems. This condition continues to mutate and plague her but with excellent doctors we take one day at a time and we pray. We always pray.

Recently as I watched four doctors looking at an ultrasound picture of her thyroid with mouths hanging open in amazement, I realised this part of the story we would share. Like my thyroid, hers was huge and so full of nodules it looked like a visitor from an alien country had taken up residence in her neck. This was a goitre - a bloody big one - and as the surgeon said the need to remove it was a " no brainer". Ie it was coming out.

As Ashton has recently finished her university degree she is currently applying for jobs. The hospital could not guarantee a date as technically speaking there did not appear to be a need to rush. This was my first worry. I didn't want her to get a job and immediately have to take time off for surgery when her date arrived. After sharing a hotel room with her, I spoke to my husband as I had further worries. She appeared to be struggling to breathe properly. We decided to use the surgeon privately ( think $$$) to speed things up and within two weeks we had a surgery date.
The risk of thyroid cancer in men and women with CS is estimated to be 35%. Thyroid cancer in CS is most commonly the follicular type but may also be the papillary type.  

Yes, we agree doctor. It's a " no brainer".

Back from theatre and sound asleep

The thyroid gland, or simply the thyroid is one of the largest endocrine glands in the body, and consists of two connected lobes. It is found in the anterior neck, below the laryngeal prominence(Adam's apple). The thyroid gland controls rate of use of energy sourcesprotein synthesis, and controls the body's sensitivity to other hormones.These hormones regulate the growth and rate of function of many other systems in the body. T3 and T4 are synthesized from iodine and tyrosine. The thyroid also produces calcitonin, which plays a role in calcium homeostasis. ( thank you Wikipedia)

2 DAYS LATER: She is still in hospital because thyroid hormones and calcium levels are yet to stabilise. I remember this stage well. You get pins and needles in your fingers and toes and it is so uncomfortable. So she is on serious calcium therapy until the  doctor is happy that she is safe. Apart from the levels, the doctor told us that a normal thyroid weighs about 10g. Ashton's thyroid he guesses was about 80g - EIGHT TIMES ITS NORMAL SIZE. AND, it had wound around her esophagus. No wonder she was struggling to breathe.
DAY 2 - doing well

This is just part of our story.

This is the human face of Cowden's syndrome.

We await pathology results.

Till next time


  1. Suzi -thanks for sharing yours and Ashton's story. I had never heard of CS before I started reading your blog. Praying for Ashton and wishing you all the best. Thanks for sharing with #overthemoon.

    1. Cathy you're a champ. When people say that to me i think " mission achieved".

  2. What a sweet darling Ashton looks, I am so sorry for all that she (and you) go through time after time. I pray that there are better days ahead, and a great job for Ashton too.

    Bloggers Pit Stop

    1. You are so sweet to say and wish that for us. Thanks for reading.

  3. You gals continue to inspire us. So glad we have each other. So sorry we share this mess. Praying for some peace!

  4. You gals continue to inspire us. So glad we have each other. So sorry we share this mess. Praying for some peace!

  5. you are in my prayers, you are both amazing xx #mg

    1. Everyone with CS is amazing. Trying to do my bit to raise awareness xxx

    2. Everyone with CS is amazing. Trying to do my bit to raise awareness xxx

  6. Wishing your daughter well. Thanks for sharing the information and being so open and honest. xx


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