Oncotype DX Testing and time away from it all
Oncotype DX Test - what's that?
Once surgery had been completed the next steps on my treatment pathway was for the MDT (Multi-Disciplinary Team) to decide. At my diagnosis of breast cancer it was unclear whether or not I would be having chemotherapy as I was classed as a "grey area" so the MDT wanted to see from the surgery biopsy results what the benefit would be to me of having chemotherapy. Around this time we were given a lot of results and my NPI (Nottingham Protocol Index) score. Basically my surgery results showed that I had over 5mm of clear margins from the removed tumour, I had a micromet (micrometasis) of 0.66mm in my Sentinel Lymph Node (which they classed as a negative node due to the small deposit), I had no lymphovascular invasion and my cavity shave was all benign. To me and Gary none of this really made any sense but the general gist we got from the Breast Surgeon/Consultant was that it was all positive news. If having a malignant tumour can be seen as positive news.
A week or so after my post surgery follow up appointment, my Breast Care Nurse rang me to say that the MDT had decided to send my tumour off to the USA for an Oncotype DX Test carrying out. What's an Oncotype DX Test I hear some of you say? Well that was our question at the time too as we had never heard of it! I won't bore you with all the details as there is plenty of information that can be found on the internet but, basically an Oncotype DX Test is "a test that can help predict the likelihood of your cancer recurring and determines whether you would benefit from having chemotherapy."
The test analyses a group of 21 genes found in breast cancer and from this a recurrence score over the first 5 years is given which is a number between 0 and 100. Each healthcare trust, however, has different cut off points for where the higher risk score starts. For Leeds Teaching Hospitals NHS Trust, which I was under, the score for the higher risk was a score of between 31 to 100. So in essence the higher the score, the higher the risk of recurrence and the more likely that chemotherapy will be effective and of benefit to help prevent recurrence.
To be eligible for an Oncotype DX Test your breast cancer has to fit certain criteria which are - "the cancer is to be either stage 1 or 2, be lymph node negative, be ER+ and HER2-" so in my case I was told that I was eligible for the test to be carried out.
At this point I was both relieved but also anxious at the Oncotype DX Test being carried out as the Test would ultimately tell me what my recurrence stats would be and also whether I would have to have the one thing that I had dreaded since first being diagnosed. Chemotherapy.
I was told the results would take around 2 weeks to be returned. For those initial 2 weeks it felt like my life for the foreseeable future was firmly in the hands of the medical profession and I couldn't make any plans as I didn't know whether chemotherapy was going to be part of that future or not and if it was then it would ultimately bring a huge shit storm like a tornado through my life as I knew it.
I wanted to know what my Christmas and New Year was likely to be like. Would I be going through chemotherapy? Would I be able to buy Christmas presents? Would I be able to spend time with friends and family for fear of picking up germs? Could I book the much wanted day trip to London with friends between Christmas and New Year? These might sound like silly questions but when your decisions on your own future is put in the hands of others, it somehow seems like very valid questions and highlights that we really only do have the present moment and it is only that present moment that is a given and guaranteed.
Two weeks later I saw the now familiar hospital number flash up on my mobile. It was my Breast Care Nurse. I was nervous to take the call but, take the call I must. She said that there had been an error with the laboratory and that, the laboratory at the hospital had somehow mistakenly sent off my Sentinel Lymph Node for biopsy and not the breast tumour! She said that an investigation would be undertaken and that now the error had been noticed, my tumour was already on its way to the USA for testing (this is where Oncotype DX Tests are currently carried out). I would be lying if I said I wasn't pissed off at hearing this mix up - it meant an even longer period of my life being put on hold.
We had a 3 night break and it was a breath of fresh air to spend some quality time with 3 of my friends enjoying ourselves exploring the local area, having girls conversation, much laughter and eating and drinking (well non-alcoholic for me!) far too much!
A week or so after my post surgery follow up appointment, my Breast Care Nurse rang me to say that the MDT had decided to send my tumour off to the USA for an Oncotype DX Test carrying out. What's an Oncotype DX Test I hear some of you say? Well that was our question at the time too as we had never heard of it! I won't bore you with all the details as there is plenty of information that can be found on the internet but, basically an Oncotype DX Test is "a test that can help predict the likelihood of your cancer recurring and determines whether you would benefit from having chemotherapy."
The test analyses a group of 21 genes found in breast cancer and from this a recurrence score over the first 5 years is given which is a number between 0 and 100. Each healthcare trust, however, has different cut off points for where the higher risk score starts. For Leeds Teaching Hospitals NHS Trust, which I was under, the score for the higher risk was a score of between 31 to 100. So in essence the higher the score, the higher the risk of recurrence and the more likely that chemotherapy will be effective and of benefit to help prevent recurrence.
To be eligible for an Oncotype DX Test your breast cancer has to fit certain criteria which are - "the cancer is to be either stage 1 or 2, be lymph node negative, be ER+ and HER2-" so in my case I was told that I was eligible for the test to be carried out.
At this point I was both relieved but also anxious at the Oncotype DX Test being carried out as the Test would ultimately tell me what my recurrence stats would be and also whether I would have to have the one thing that I had dreaded since first being diagnosed. Chemotherapy.
I was told the results would take around 2 weeks to be returned. For those initial 2 weeks it felt like my life for the foreseeable future was firmly in the hands of the medical profession and I couldn't make any plans as I didn't know whether chemotherapy was going to be part of that future or not and if it was then it would ultimately bring a huge shit storm like a tornado through my life as I knew it.
I wanted to know what my Christmas and New Year was likely to be like. Would I be going through chemotherapy? Would I be able to buy Christmas presents? Would I be able to spend time with friends and family for fear of picking up germs? Could I book the much wanted day trip to London with friends between Christmas and New Year? These might sound like silly questions but when your decisions on your own future is put in the hands of others, it somehow seems like very valid questions and highlights that we really only do have the present moment and it is only that present moment that is a given and guaranteed.
Two weeks later I saw the now familiar hospital number flash up on my mobile. It was my Breast Care Nurse. I was nervous to take the call but, take the call I must. She said that there had been an error with the laboratory and that, the laboratory at the hospital had somehow mistakenly sent off my Sentinel Lymph Node for biopsy and not the breast tumour! She said that an investigation would be undertaken and that now the error had been noticed, my tumour was already on its way to the USA for testing (this is where Oncotype DX Tests are currently carried out). I would be lying if I said I wasn't pissed off at hearing this mix up - it meant an even longer period of my life being put on hold.
Time out and away with the girls
It was during this time of anxious waiting for the Oncotype DX Test that the much needed pre-arranged break to the Lake District with the girls in mid November 2017 came. It was just what I needed.We had a 3 night break and it was a breath of fresh air to spend some quality time with 3 of my friends enjoying ourselves exploring the local area, having girls conversation, much laughter and eating and drinking (well non-alcoholic for me!) far too much!
It was great having a distraction and sampling some "normal" life away from the hospital and tests and I felt like I could pretty much relax and enjoy spending time with my friends - Charlotte, Sarah and Roxanne. We all met at work over 15 years ago and I value their friendship so much. We have become definite friends for life and I know I can always depend on these ladies. If there is one thing that a cancer diagnosis showed me - it's those people who are there for you through anything - the highs AND the lows of life and these ladies are definitely in that category.
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