If Only...

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Don't be misled by the title of this post because this isn't the usual "if only", self pitying post that you might expect it to be.  It's me looking back and understanding what happened and why I now find myself with Stage IV breast cancer.

This cancer was not caused by lifestyle.  I did absolutely nothing to cause it.  It wasn't caused by diet because the cancer cells were fed by oestrogen, over which I had absolutely no control.  It's a purely involuntary production of hormone that the body secretes more in some women than others.  It wasn't caused by a lack of exercise.  I've always loved exercise and been fit and active.  It wasn't caused by obesity because I've always been very slim, to the point that people have always told me I need to eat more.  It wasn't caused by negligence on my part.  I went for the two yearly mammograms that were recommended to me.  It wasn't caused by a lack of awareness of a lump because my tumour didn't develop into a lump; it was a diffuse mass of fibrous tissue that mimicked a breast and didn't show up as a lump.  It didn't behave the way we're led to believe breast cancer shows up.  We're told to look and feel for a lump but I didn't have a lump.  There was "nothing to see here" but a normal looking, normal feeling breast.  I apologise for the openness of my description but I have a reason.  I want people to understand that not all breast cancers are caused the way we're taught and that they don't all behave the same way.  In effect, that some are absolutely beyond our ability to self diagnose and are even beyond the ability of doctors and mammograms to diagnose as well.

The "if only" comes with hindsight but hindsight has given me an awareness that I was treated in what could be described as negligent by the first breast surgeon I consulted when, at my very first mammogram I was told my right breast had calcifications.  As a lay person, I had no idea of the significance of calcifications and how they could develop into cancer, no idea at all, and it wasn't explained to me what the odds were that it might.

The calcifications were described as microscopic but nevertheless I underwent 22 painful core biopsies (without anaesthetic), performed by a professor said to be the best in my city.  I stoically accepted the attempts she made to capture some samples of the calcifications which were performed without guidance from ultrasound.  I have no idea why ultrasound guidance wasn't used but I'm a lay person and was simply following instructions.  

I was told to return to the breast surgeon for follow up and, at that consult, I was told that sometimes calcifications become malignant but, in my case, she didn't think that would happen and that the usual two yearly mammograms would suffice as a diagnostic tool.  I duly followed those instructions.

Now, many years later with the benefit of hindsight I'm aware that obviously at some stage the breast surgeon's prediction was wrong and my calcifications did turn malignant.  As far as I know, there was no alert placed on my file for the radiologists who read my mammograms to be aware that I had microscopic calcifications; therefore somehow I slipped through the net and was deemed to be at no extra risk than a woman without calcifications.

I've spent time asking myself what I would have done if the cancer had been picked up by mammogram while it was still in its early stages if I'd been given a choice of treatments.  Given what I know now as an insider in this situation, I imagine I would have been offered mastectomy and/or chemo or, more likely, mastectomy and hormone treatment with the basic treatment I'm now taking, minus the targeted therapy, the reason for the lack of the latter being that at that stage it would not have been discovered.  Knowing what I know of the type of tumour I had, lumpectomy would not have been an option because, as I've mentioned, there was no lump, it was a mass of fibrous tissue.  I ask myself how I would have felt about having a bilateral mastectomy at a younger age but given the fact that I've had one and discovered that the sky hasn't fallen in, all I can do is guess.  

Before I ever dreamed I might develop breast cancer I used to say that, horrible as the thought of it is, I would have a mastectomy to rid myself of the cancer and any chance of it returning if I discovered it before it spread outside the breast.  I know I would have been distraught, distressed and terribly, terribly upset but I would have done it.  Unfortunately, due to what I believe was negligence or at the very least, carelessness, I wasn't given that opportunity and had I been given that opportunity I would now be healthy, carefree and living my normal life, as was my right if I'd been given the correct advice.

Am I bitter and angry?  Sometimes; in fact, to be honest, YES.  Am I sad that my life will be cut short?  A very big yes.  I doubt I will ever see my grandchildren, should we be blessed with them and that makes me sad, along with the fact that my son and his possible future wife will feel the sadness that is inevitable if I'm not there to enjoy the wonder of a future generation.  I have more than likely been robbed of the opportunity to grow to a really old age with my husband, supposing the prognosis that comes with a diagnosis of Stage IV breast cancer is correct.  In one of my "down" moments recently, my husband said, "You're like an eagle that's been shot in mid flight" and I agreed.  I still had so much to give.  

Before you think I'm giving myself a death sentence, I'm absolutely NOT doing that but the fact remains and must be looked at squarely that I am not the woman I used to be and could still have been had I been given the opportunity to do something to retain my health.  The woman I used to be was fun loving, active and full of the love of living for no other reason than I simply had a huge zest for life.  I was hungry for life.  I couldn't find enough time to do all the things I wished to do in this lifetime and those things I wished to do were not rushing around to coffee mornings and lunches.  They consisted of a desire to help others and to further my knowledge about the enormous number of topics that interest me.

If you're wondering why I don't still do those things anyway despite the shadow looming over me, the answer is I can't.  Due to the uncaring advice I was given, the cancer did spread beyond the breast - into every lymph node and almost every bone in my skeletal system; mainly in my spine.  Anyone who has ever heard stories of the pain and immobility caused by having cancerous tumours in the spine will know that the pain is unbearable and the only way to carry on with some semblance of life is to take massive doses of opioid medications and anyone who knows anything about opioid medications knows that they affect your vision, your balance, your state of alertness, your memory and, in all, your quality of life, adversely.  The cancer in my bones has caused micro-fractures and weakness of my bones and the risk of a full fracture is a distinct possibility with or without falling down accidentally which means I'm constricted in my movements for two reasons; pain and the need to be very risk averse.  I've never been a risk averse person.  Anyone who knows me can attest to that!  So, my entire personality has been curbed and that's why my husband likens me to an eagle shot in mid flight.

Strangely, I don't really feel sorry for myself although I sound as though I am.  I'm not the self pitying type.  What I am when I stop to think about all this is sad.  Sad that I was let down by the medical profession, by a consultant I was placed in the position of needing to trust and by a series of radiologists who glanced at my mammogram images and "saw nothing" when there was, in fact, a massive tumour in my right breast.

This blog post is designed to alert women (and men) to be aware that not all cancers are alike and that cancer patients are NOT TO BLAME for their illness.  They are people like anyone you see walking down the street who simply got unlucky. ~