My name is Suzannah. I’m 51 years old , married with two adult daughters and I live in Western Australia.
At the age of 11, I had my first indication that something was not right with my body. A huge lump developed on the outside of my left knee sending my parents into panic mode and in turn me into theatre for surgery. It was a haemangioma and as it wasn’t cancer, everybody breathed a sigh of relief and moved on.
Another lump grew and another and another. Each time my Dad (a doctor) would weigh up the situation and often because my lumps were adjacent or on nerves and painful, they were removed. I remember a specialist saying this would stop at about eighteen. As my kids would say… LOL.
Every school holiday seemed to have surgery appointments and I went with the flow. At 18 however I had enough. My friends had gone away together and instead of joining them, I was in hospital having a tumour removed from under my scalp. For a brief period, doctors believed it to be malignant and I was terrified. It wasn’t malignant, but the fact it could have been missed messed with my head.
I met the man who would become my husband. Even while dating, he would drive me to our closest city Perth for surgery and removal of lumps. Each time the diagnosis of benign gave us emotional relief, because even though I had never had a malignant diagnosis, we lived in fear of one.
Around the time I was pregnant with my first child, my thyroid ballooned and a multinodular goitre was diagnosed. The doctor explained that lumps were growing on my thyroid, a simplistic explanation but one which presented a problem. I was pregnant and struggling to breathe because my thyroid was blocking my airways. A few months after giving birth, half of my thyroid was removed. This procedure would come back to haunt me.
By the time my forties arrived, my thyroid had regrown, wrapped itself around scar tissue, and was causing me grief. This time I needed a full thyroidectomy and there was a fear I would lose my voice due to the complexity of the surgery needed. I didn’t, and I will always remember the relief in my doctor’s face when I spoke.
Thyroid surgery knocks you around big time, but as a mother, and a teacher, and a wife, you have no option but to carry on. I struggled with lack of energy on a daily basis, but as I said, you carry on and unfortunately, it becomes your normal.
Lumps continued growing. A breast examination revealed a huge lump and a know it all technician told me it was cancer. My life caved in and the worst two weeks ever ensued. It was benign. Unfortunately, this was not to be the last time somebody gave me information which was incorrect.
At age 42 however, the results were different and I was diagnosed with breast cancer. I had a bilateral mastectomy with reconstruction over two years and was treated with tamoxifen which was awful but necessary. While going through the second part of the mastectomy another lump ( on my scalp) was removed. This was diagnosed as a sarcoma. My body was seriously unwell. After my second mastectomy I required a transfusion because my iron levels were so low. Obviously bleeding from somewhere, I was sent for a colonoscopy. The doctor said he had never seen anything like it. My intestines looked like a flower garden. I literally had hundreds upon hundreds of polyps and structures called hamartomas and this was the source of bleeding.
My Dad, now retired was perplexed. He more than most knew my medical history and he needed answers. Whereas at age 11 life had gone on after one lump, at age 43 this was just beyond ridiculous. We needed answers. His research led him to Cowden’s syndrome. The day he told me I cried with relief. There was a reason. I hadn’t done anything wrong. Genetic testing confirmed the diagnosis.
Knowledge to me is power so I set about learning everything I could about Cowden’s syndrome and pten. Later that year I had prophylactic surgery to remove my uterus, but kept my ovaries. Well I kept them for two years, until severe pain and a possible ovarian cancer diagnosis resulted in the removal of my ovaries and appendix. Both were full to bursting with lumps. Years of back pain stopped but life as I knew it changed forever as life without ovaries is not fun at all.
All of these surgeries required time off work. I will always be grateful for the support my principal gave me throughout. Looking back now I should have stopped work, but we needed the money. The government supported us to some extent but the bills just mounted.
Emotionally the years have taken their toll. I am mentally and physically exhausted and my body struggles. Remember, I have no breasts, no thyroid, no ovaries, uterus or appendix. My body is littered with scarring which aches when weather changes. I could go on but I won’t.
The money worries, the looks on family member’s faces, the tears of your children who think Mummy is going to die, the stress on your husband’s face. Pick any one of the above as a reason why I was determined to pick myself up and carry on. In the middle of 2013 this all came to a head.
My eldest daughter Ashton became seriously ill, so ill we could have lost her. Her story is a lengthy one but in a nutshell a clot had formed in her brain and her cells had gone berserk. They were growing out of control and forming abnormal connections everywhere. Over 3 years she would have 16 brain procedures.
I mentioned PTEN and Cowden’s syndrome. Doctors disregarded this or they looked at me with question marks. Most doctors have no idea about this condition and some refuse to acknowledge that a lay person may know more than them. One day during one of her procedures, her thyroid lit up like a light house. The doctor told me she may have thyroid cancer. I told him she probably had a multi nodular goitre and Cowden’s syndrome. I was right. (Fast forward to 2016 and Ashton’s thyroid was removed. They stopped counting at 100 nodules.)
The incidence of Cowden’s syndrome is 1 in 200,000. There are two in this family. My parents are diagnosed negative. It all started with me and I passed it to one of my children. It’s a bitter pill to swallow. Would I have had children if I knew my diagnosis earlier? Probably. There was 50% chance of passing it on and 50% chance of not. I would have risked it.
These days I worry more about my daughter than myself. Though she is stable at present, I worry about the future and what may come. People say to think positively and this infuriates me. I think realistically and hope to be incorrect. I am heartened by the fact that Ashton “knows”. She has all the right monitoring and can do all the right things to hopefully nip anything new in the bud.
I continue to grow lumps, some in not very nice places. I worry every day about cancer, but I have learnt to live with the worry. If something happens, it will be dealt will. I have learnt to make lemonade out of lemons. For example, starting a support group for Australians with pten conditions has been a huge success and this has resulted in some great friendships with people who get me.
Suzannah X
