Mesothelioma?

When I was diagnosed with breast cancer in 2009, I experienced a variety of reactions. Shock. Disbelief. Distress. Sadness. Perhaps a little judgement, what had I done to cause this? However, not one person said to me, “So what’s that then? Breast Cancer? Never heard of it!” We have a very long way to go, of course, towards real levels of awareness of what Breast Cancer is and there is a wide spectrum of understanding, ranging from “the-easy-cancer, guaranteed-curable-if-found-early and you-can-live-without-a-breast-anyway” through to “oh-my-goodness-cancer-you’re-going-to-die”. But that is another story and not for today.

The story for today is about Mesothelioma. Put up your hand if you have heard of Mesothelioma? (My hand is half raised, I have kind of heard of it since my own diagnosis and connecting with the cancer blogosphere). Fine. Now put up your hand if you know what it is? (OK, you’ve got me there – I really don’t know……..).

A few weeks ago, I received a comment on one of my posts, from Cameron. Now, bloggers receive all sorts of comments which don’t quite make it to the “approve” button. I will always approve a valid comment, and while some are obviously spam or robots (and the source of many a giggle) there are some which are a little bit more difficult to figure out. Cameron’s was one of those posts, one which takes a little effort to work out.

Hi Philippa! My name is Cameron …. and I had a quick question for you! I was wondering if you could email me at your earliest convenience ………. I greatly appreciate your time!!

I headed for Professor Google and Cameron was very easy to find. I learned that Cameron’s wife Heather was diagnosed with Mesothelioma and they are advocates for awareness. Thanks to the way that the internet brings familiarity quickly among strangers in the blogosphere, I replied:

Thanks for your comment and for stopping by Feisty Blue Gecko. ……………. I took the liberty of quickly Googling you, in case the comment were spam or if you were seeking to promote a cancer curing toothpaste so am happy to see that neither of those seem to apply and you do appear to be a real person.  🙂
I imagine you are contacting me regarding the forthcoming awareness day for mesothelioma? Rather than make any more assumptions, I will wait for your email……

What I did not confess to was that my own levels of awareness were dire. I had no idea what kind of cancer Mesothelioma is and am not even sure how to pronounce it. This is a post of self education as much as broader awareness raising.

Mesothelioma is a complex cancer distinguished primarily by three factors: rarity, cause and aggressiveness. The disease is one of the least-diagnosed cancers, and it is often misdiagnosed. Mesothelioma attacks the lining of the body cavity called the mesothelium. The cancer is caused by exposure to asbestos or materials containing asbestos.. Between 2,500 and 3,000 new cases of mesothelioma are diagnosed each year in the US. On average, those diagnosed are given between 9 and 12 months to live. In the UK it accounts for only 1% of cancer diagnoses, but 2% of cancer deaths. It is rare, aggressive and particularly lethal. I had no idea.

There are three recognised types of Mesothelioma. Pleural, peritoneal and pericardial mesothelioma. 80% of all mesothelioma cases occur within the lining of the lungs. Peritoneal mesothelioma occurs in the abdominal lining, and pericardial mesothelioma in the heart’s lining. I didn’t know any of that.

The reason Cameron is so passionate about raising awareness and understanding around mesothelioma is clear. His wife, Heather was diagnosed with mesothelioma in 2005 and given 15 months to live. While mesothelioma typically affects males more than females and most commonly diagnosed in those between 50 and 70 years of age, Heather was 36 years old and the couple had a daughter of 3 months. You don’t need me to provide the terrifying maths facing the young family.

However, this is a story of hope. Heather and Cameron found specialist treatment options and Heather’s story is here. Today she is mother, wife, advocate and alive!

Cameron, Heather and their daughter Lily

Cameron, Heather and their daughter Lily

And today, September 26 – is Mesothelioma Awareness Day. I have learned a great deal about this rare and dangerous cancer.

The very high profile of October as Breast Cancer Awareness Month can overshadow very rare cancers and cause division. The reality is that any cancer diagnosis is potentially lethal, and every diagnosis is traumatic. With a cancer which has a higher profile, I find benefits, but I also find assumptions which are not based on fact.

As a person who has heard words which chilled me to the bone – “this is highly suspicious of cancer” and stepped over an invisible line into a new and terrifying territory, I reach out with a hand of solidarity. ALL cancers are evil and steal so many lives.

Let us work together in the movement to understand and eradicate all cancers.

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5 thoughts on “Mesothelioma?

  1. Thanks for this informative post, Philippa. I knew very little about mesothelioma either. I read somewhere that cases of rare cancers, when you combine them together, actually account for a fairly large share of the overall cancer burden. I absolutely agree that looking at the broader impact of cancer is essential to true “awareness”.

    • Thanks, Lisa – yes I am sure that the rarer cancers might be statistically rare, but would combine to make up a significant portion of cancer diagnoses. It is so important to see beyond the better known and higher profile cancers.

  2. Pingback: Weekly Round Up: The Pay It Forward Edition | Journeying Beyond Breast Cancer

  3. Hi Philippa, I had heard of Mesothelioma, but I had no clue what it is. Thank you for this important informational post. Here is another disease that needs awareness education, and thank you for your statement about eradication ALL cancers. BTW, I had a similar experience to you, hearing from a doc, “This is highly suspicious of cancer.” Then my world crumbled.

    • Thanks Beth – I was embarrassed at how little I knew so this was a real opportunity to learn as well as share. It makes me very sad that cancer can divide – such an evil disease in so many ways.
      Yes, THOSE words – I will never forget, and this Thursday marks years from hearing them. My world also crumbled, and like you has been reconstructing in unexpected ways.
      Hugs to you both

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