It has taken several weeks and piecing together lots of bits of info to arrive at todays diagnosis, which is not 100% complete even at this stage. It is actually quite difficult now to remember exactly what order we learned all the bits of info so this might not be a completely accurate record.
After the initial diagnosis I had to wait a week to get booked in for scans. In one Monday I managed to fit 3 scans in: First, the MRI of my head which I have written about already. For this you lie in a machine with headphones on and keep still. There is an injection of some fluid that helps them scan you.
Next, a CT scan – you lie on a bed that moves through a big ’donut’ scanner and it took pictures of my body from my pelvis up to my neck. This is actually quite a quick one, except you have to drink a special drink before hand which takes a while take effect so you have to wait once you’ve taken it. Also, there is another big injection to have, which is supposed to be injected by a machine. In my case, however as soon as the machine started injecting I screamed with pain as it really stung. Unfortunately this is as a result of my previous chemo weakening my veins so much that they couldn’t take the pressure of the machine injection. As soon as I screamed they stopped it and a nurse came and did it gently by hand instead.
Once the CT was out of the way, we headed over to the main Radiology dept for an injection of a radioactive dye which takes 3 hours to take effect. We disappeared for a while in the 3 hours (not relaxing unfortunately – we had to go to my house to get a removal quote) and then I came back and had a bone scan. This again, involved lying still for about 40 mins whilst a machine slowly scanned me. After a day when I spent most of it lying still on my back I was exhausted!
We then had to just wait (again) until the Friday before we got any news. Work was so busy that I was not too anxious at this point – I just threw myself into it. On Friday we met with Mr B who delivered the news: Good, bad and ugly. The good news was that the bone scan was completely clear. The MRI showed no activity except a bit of thickness at the back of my eye. The not so great news was that the CT had shown three areas of ‘suspicion’: my right breast, a small area at the top of my right lung and my left armpit. The other bad news was that they had done more work on the original biopsy and found that it was not a new DCIS primary cancer, it was in fact a bit of cancer within a blood vessel in my breast (i.e spread from somewhere else).
This meeting raised so many questions, most of which Mr B was not able to answer. We came away confused and deflated, without any clear answers about what would happen next. We knew that Mr B was going on a weeks holiday but he promised to contact some colleagues over the weekend and to call on Monday with more update.
Over the weekend my eye got worse, Monday came and went and we grew more and more frustrated. At this point I was still trying to do my job, but by the end of the week as more bits of info came through I found myself thinking less about work and more about the cancer. Mr B did call and explained that they wanted me to have another scan (a PET CT) and that he wanted to talk to a thorassic surgeon about what was going on in my lung.
So another week passed whilst I waited for the PET scan. In the meantime I think that’s when I saw the eye surgeon who confirmed the cancer and my radiotherapy was set up. The PET scan was similar to the CT except this time I had an injection half an hour before the scan and had to lie still to let it spread around my body before I went in. Luckily this time I didn’t have long to wait for results as Mr B called me that evening to confirm it had shown evidence of cancer in my armpit and lung. Therefore, he said, the most likely course of action would be a course of Chemotherapy. He still had to speak to the thorassic guy to see whether I might need any additional action on my lung, and suggested Dr O (onc) would be in touch regarding the chemo.
I saw Dr O at my radiotherapy planning meeting on Thurs. He confirmed he was recommending a course of chemo. This would be a combination of two drugs, Pacitaxol (which I have had before) and Avastin (a controversial new drug normally only given to private patients in the UK at the moment but with good results in the US and other countries). Last time I had chemo I had 8 sessions over 5 months. This is planned to be 18 sessions over 6 months (YES I did say 18!). Chemo is the best treatment in my circumstances as the cancer has obviously spread to a number of places and drugs are the only way to systemically treat the whole body at once. If there are any tumours left at the end they may operate, and radiotherapy can be used to treat very specific localised cancers, but chances are there are small traces of cancer in places that haven’t shown on the scans yet so the chemo should blast them all.
So I finished the radiotherapy to my eye and had to get PPP to approve the Avastin and now I’m booked in for a pre-chemo session on Friday, where they will fit a PICC line (which I have requested) and then I start chemo on Tuesday. It will be every Tuesday for 3 weeks, 1 week off and then start again x6!
Of course I’m scared – I remember how awful I felt last time. I expect I’ll probably lose most of my hair within a month of starting, and I don’t know whether I’ll be sick or not this time. However, I guess if I’ve done it before I can do it again.