The results are in…
Yesterday I went in to collect the results of my brain MRI and PET scan. Unfortunately the MRI hadn’t been reported yet but we did get comprehensive results of the PET. For the first time in a while I was pretty nervous walking into that hospital. If you have followed this from the beginning you’ll know that results days have never been kind to me, I’ve actually never had a good one! 7 results days last year, each one came with a twist and a not so good ending. But I knew, from previous ultrasounds, chemotherapy had been working, so I went in there with a positive mind and hoped for the best but prepared for the worst.
Three revelations came out yesterday, each one sending me into a bit of shock and It’s taken me the last 24 hours to process everything.
Shocking revelation number one. I went into meet my breast surgeon, who by the way I had no idea but is world renowned in what she does…sure, but she was incredible, loved her. As I went in she said to me “Its so good to finally put a face to the name, I’ve heard so much about you.” Always panic a little when people say that so I said all good things I hope to which she said “yes they have a very big soft spot for you here” Went on to say which is why its been highly stressed to them all by my oncologist to tailor my treatment for “curative intent” not the “palliative intent” it was previous. It was at that moment I think the wideness of my eyes said it all. She asked if I was okay hearing those words as she had heard I was very clued up with my type of disease and happy to be open and comfortable to the terminology of, which we all know, I am very open, very comfortable to talk about it and I am clued up to my disease but hold up…palliative? Say what now? Just to recap a little, last year 2 weeks after discovering my breast tumour they discovered a tumour in my skull. At the time, the medical team I had said if this was cancer they would looking at 2-3 years or 10 at best. What I wasn’t aware of, however, is that team had essentially looked at my treatment plan as being one of “palliative intent”. PALLIATIVE?! If anyone isn’t aware of what this means, its to try and make you comfortable for the years you have left and to extend your life by as much as they can through continual treatment. I felt at the time I was getting written off at the ripe age of 25 with the 2-3 years comment, hence why I moved hospitals, but Christ alive palliative?! But the amazing thing that came from this is my current oncologist had stressed to all staff involved we treat my disease with “curative intent”. I didn’t know but they whacked me with a very aggressive chemotherapy plan and dosage, which is why they’re all so shocked I still carried on and got myself an assault bike in the mix, and everything else that will proceed all has to be tailored with the idea of curative intent. Thank god I made the move!
Then came shocking revelation number two and this one is a biggie. You may recall the reason they actually found my brain tumour in the first place is because a mass was discovered on my liver and further investigation into this found the mass to be benign but showed the tumour in my head. It was always a little niggle in my mind that the previous hospital just reported the liver MRI to be benign, signed it off and no further tests needed. I remember asking about a biopsy but the doctor at the time said we can look at that later on down the line but right now its not a priority. So I went with it; my current hospital got the reports to say imaging showed benign so it wasn’t a thought. Until reviewing my recent PET scan. So in a PET scan you have a SUV score. It stands for standardised Uptake Value and essentially the brighter the colour, the higher the score, the more angry that part of the body is so the more likely it is to be cancer. Scar tissue also has an SUV score, of a lower amount, which is why you have to tell them any areas you have had previous surgery on. In my original PET scan my breast tumour was report SUV of 19, very high. My brain was very high. My liver medium, but MRI suggested innocent. On reviewing the most recent PET scan however, breast tumour dramatically lower which I’ll get onto next, brain lower, liver…gone. It’s no longer present. The only thing that has changed between those two PET scans is undergoing chemotherapy, so she said we will have to keep an open mind that in actual fact that mass on liver may have been another metastases of the breast cancer. We will never know because it’s no longer there, so if it was cancer chemotherapy has wiped it out, but bloody hell results days are never a dull moment in this house!
Third and final shocking revelation and, there are big positives to take from the other two as well but this one is a goodie. As I just mentioned my breast SUV score was 19, very high. However now my score is 2. To put this into perspective, scar tissue on your body also has a SUV score of 2. So what she said to me was what we are seeing on the PET scan is no longer clear if its actually cancer or if it is just scar tissue from where it was. We won’t know until I’ve had the surgery and it’s all removed and sent to the lab, but essentially, we could be looking at a case where what may have been in my liver is gone, the tumour the size of a lime in my breast may now have completely gone, awaiting brain MRI but if its done that so far then they believe what was left in the muscle in my head has also gone, so overall the cancer…may be gone! Treatment has flipped a little we are now going for surgery first so two weeks time I’ll be heading under the knife for the third time in a year but should hopefully be a doddle in comparison to spinal and brain and then radiotherapy will proceed after.
Cancer doesn’t mean death. Secondary cancer doesn’t mean death. So overall, stick that in your palliative pipe and smoke it!
