Monday, 3 October 2016


You'd have to be a real hermit to not know that October is breast cancer awareness month. Social
media is full of advice on what to do and what not to do and the colour pink ( which I can't stand) is everywhere. I hate the colour pink being associated with breast cancer because it's a traditionally girly colour and this makes me feel sad for the men who get breast cancer. Yes, being male doesn't exclude you from getting breast cancer and if you're one of those poor blokes, the last thing you want to feel is that you've got some girly disease.  Maybe the colour should be green.

It's been almost eight years since my breast cancer diagnosis and only lately have I been able to think about it without shaking all over. Maybe the only reason here is that life is a series of events and other things have become more important. I can't be sure as to the reason but I am sure that I no longer worry as much about breast cancer. I hate that it happened. I loathe my saline fake boobs. I hate the way that one is higher than the other. I feel like a freak without nipples. BUT, the cancer itself no longer fills every waking thought. Everywhere I look this month breast cancer charities are actively encouraging people to fundraise so that they can continue to raise awareness and support people. Real people like me have received financial support or services because real people like you donate money. I'll save my hugs and kisses till I meet you. Just know that it helps.

One of the things that does worry me however is Cow related. If you are new to my blog you may not realise I have Cowden's syndrome (CS), a rare genetic disorder that increases your risk of tumours and cancers. It's also called PTEN Hamartoma Tumour syndrome ( PHTS) cos somebody decided we needed four words instead of two. Same same just wordier my friends. Anyway, the reason I'm worried is that nowhere in all the advertising this month will you see information about CS and this is concerning on two parts. One is that CS carries with it a higher than average risk of breast cancer and two, according to Professor Charis Eng ( guru of all things CS), the condition is significantly under diagnosed due to doctors' lack of knowledge about visible signs which may suggest a diagnosis.

Now I have a friend in the UK who is pretty cluey on all things CS. She writes:

Benign breast disease is thought to be common in women with CS/PHTS, so women could be turning up at breast clinics with clear evidence of CS/PHTS on their skin, and/or oral mucous membranes, but that evidence missed due to lack of knowledge about CS/PHTS. Those women are then denied the opportunity to have regular breast cancer screening or prophylactic surgery. 

So, basically what she is saying is that there are certain lumps and bumps on the skin and in the mouth that may indicate you have CS and if you do then you may have an increased risk of some cancers like breast cancer. So you need to know this stuff, but don't panic and do get a doctor involved because you might need a biopsy to diagnose some of these growths.

So if you want to impress your doctor or intimidate him because you know something he doesn't, here are a few new words to google the hell out of. The most common skin signs are trichilemmomas (mostly found on the face), keratoses (mostly found on the hands and feet) and papillomas (mostly found on the oral mucous membranes). There are some other less common skin lesions, but let's not worry too much about them for now.

I hope I haven't scared you. Actually that's not true, I hope I have because then you might check for lumps and check for growths and see a doctor. Better to check stuff out if you have a concern.

And before I go I have one request. Breast cancer agencies don't publish information on CS because it's rare ( 1 in 200 000). Professor Eng is convinced it is likely higher. So please help me and my Cow friends get the word out by sharing this post. Would really appreciate it.

Till next


  1. Oh honey I can not even imagine the fight you have been through, you arterially insertional! Thank you so much for sharing this with the world and with #mg

    1. Thanks for your support in retweeting this xxx

  2. Thanks for sharing with us (Turn it up Tuesday) and for being such a fighter, Suzi. ..I am 'wiser'




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