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Monday, 6 August 2012

Linked to the Daily Telegraph!

I was wondering why I was getting referrals to this blog from the Daily Telegraph, so I clicked on the link and found that someone had posted a link to this blog. This was my reply to the blog and a couple of replies in particular

Our criticism of Komen is a general criticism of what has become the breast cancer 'industy'. They are all about primary breast cancer and being a survivor. They may not wish to know, but about 30% of those survivors will develop metastatic breast cancer. This is the cancer that kills, you do not die of primary breast cancer. Susan G Komen died of metastatic breast cancer and the organisation that was created in her memory seems to ignore us. One metavivor (someone living with metastatic cancer) was chosen as a featured survivor at a rally but evidently when the video was posted all mention of metastatic breast cancer (MBC) was erased.
I appreciate that early detection is important, but if you can't get the medical profession to take you seriously what does it matter. I was diagnosed as Stage II in 5 years ago at the age of 47. I was asked if I had pain anywhere else and I mentioned deep in my right groin area and my left shoulder. The surgeon simply said "That's interesting". The same hospital had performed my hysterectomy 5 years before that when I was told it was a possibility I might have cancer. As there was no cancer in the tissue removed in the hysterectomy no further tests were done despite the fact that my mother had breast cancer when she was about 53. It turns out that the marker that showed up in 2002 is also a marker for breast cancer. I went to my GP on several occasions and repeated that my mother had breast cancer, tests in 2002 showed that I might have cancer, I was incredibly tired and slept most of the weekend, and my back was so bad that if things went on like this I would end up in a wheel chair in a few years. Response? Go away and come back when things get worse. Basically I am overweight and depressed so no action was taken until I found a lump in my breast in August 2008.
Going back to the conversation with the surgeon in 2008 nothing was done then. I started adjuvant chemo because my lymph nodes were clear of cancer, but I eventually got them to take an x-ray of the hip because I was 47 years old and walking with a stick. The x-ray showed that I had sustained a pathological fracture of my right hip caused by a 4" x 2" tumour. I was not allowed to leave the hospital and was sent up to orthopaedics for further tests, resulting in a total hip replacement a few days later ... nothing happens over the weekends. The cancer had spread long before my initial diagnosis and there are many more like me who were 'too young' and their cancer had already spread.
I am now 52 years old. Last year I had a letter inviting me to my first screening mammogram. I had to phone them and say that it was a bit too late. I already have metastatic breast cancer. This means that my cancer is considered incurable and will be the probable cause of my death ... if the local bus doesn't get me first!
Screening does have a place in trying to get an early diagnosis, but if the medical profession is not willing to listen when you go along with concerns when you are 'too young' what difference does it make? I know that some people have been offended by my reference to those with primary cancer as the Pink Fluffy people but I really don't care. I am fed up with having to spend October trying to feel a part of the survivor-fest that Breast Cancer Awareness month has become. I am fed up with organisations like Komen spending huge sums on 'education' and 'prevention' and pushing for screening (which in itself can cause cancer). What about those of us that the medical profession has basically written off as incurable? I once asked Cancer Research UK how much of their £400m research budget they spend on research into ANY form of metastatic cancer. The answer was 1%, yes you read that correctly ONE PER CENT. As breast cancer has the highest profile of any cancer I can only assume that a large proportion of that went to breast cancer. What about the others; how frustrated must they be by the Pink Fluffy Survivor-fest that is October. Metavivors make up 30% of the breast cancer community so why isn't 30% of the research money raised by breast cancer charities spent on trying to find a cure for the different forms of breast cancer? Are most people even aware that there are different types of breast cancer?
I actually spent this morning making a list of the obits of some of the women from the main support forum that I use, and who have died over the last couple of years. Many were young and had small children. A colleague on the site has created a montage of their photos - Judy V, Velcro, Little Libby, windbeneathmywings, Jess Clem, faithmena and many others. Many are only known to us by their screen names and we don't even have a photo to remember them by. http://stickivickigreatadventu...
Breast cancer is becoming more common. If screening is to take place there are safer techniques than using the traditional mammogram. Self-examination IS important, though it is often scorned as ineffective, but that is the only way I found my cancer. Men as well as women should be aware of self-examination because this is not a gender specific killer, and they should also be aware that if they have relatives with breast cancer they have an increased risk of protate cancer, which they should also get checked out properly.
There is not a metavivor in the world who wants any more to be counted amongst our number. What we ask is that a fair amount of funding be directed into metastatic research, and in that organisations such as Komen and Cancer Research UK have all the power necessary and the money that they raise is funding the research, and they decide who gets the dosh. Stats have to be used because of the demand for proof that XYZ works, and clinical trials is another can of worms. Lumpectomy v. mastectomy is also contentious and those who advocate their chosen procedure use stats. You just can't get away from them.
What we need is knowledge - of the type of cancer we have, the stage, the hormone status and so on, so we can make informed decisions. Those decisions take time and although it may not seem like it when you have been told that you have cancer, there is the time to make the right choice for you. In the end it is all about doing what is right for you and just remember that there are 'lies, damned lies, and statistics'.

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