Thursday 19th September, 2013
Sorry Helen and Lesley. I’ve already made you wait a lot longer for the results than I had to wait, so that’s probably a bit unfair.
After the PET scan, I went to the local shopping centre as I needed to get a few things. One of those things was a mermaid nightie for my daughter. I had seen it in a catalogue and knew she would love it. The store only had it in a size 5 and I needed a 7. I then went to the supermarket to get a couple of groceries. I lined up at the check out and the lady in front of me, who had a lot more than me, let me go in front of her. That NEVER happens to me. Must have been the scarf. Now I just ask people if I can go in front of them if I’ve only got one or two things. I’m making use of the cancer card while I can!
After shopping, I went home with about half an hour to spare before I had to head off to the appointment to get my results. While I was at home, it occurred to me that what I had seen on the CT scan of my neck and interpreted as big lymph nodes which had taken up the contrast, were actually blood vessels with intravenous contrast in them, which is a completely normal finding on a CT scan when you’re given intravenous contrast! Lymph nodes wouldn’t even take up the intravenous contrast. They take up the radioactive glucose for a PET scan, but intravenous contrast is not given to highlight lymph nodes (I’ll have to confirm that with a radiologist). I had just had a quick look at the CT scan and jumped to the worst conclusion.
I headed off to the appointment and parked my car in the hospital car park. When I got out of the car, a lady who was leaving gave me her parking ticket as she still had more than an hour left on it. It only saved me $1 but it was a very nice gesture and it was the second good thing that had happened that day. Must have been the scarf again. The thought crossed my mind that perhaps this meant the results of the PET scan would be good, since as the saying goes, ‘good things happen in threes’, or is that bad things?
I went into the hospital and upstairs to the haematologists’ rooms. I didn’t have to wait very long. She called me in and she was smiling. ‘Have you seen your results?’ she asked. I told her I hadn’t. I can’t remember her exact words but she said the results were great. She printed out a copy and gave it to me and carefully compared it with the results of the first PET scan, and told me that this second re-staging scan showed only one or two lymph nodes in my chest that were still showing activity (indicating that there was still cancer there). There had been a dramatic improvement in my chest and there was no evidence of cancer in my neck, in the lymph nodes around my spleen or in my spleen. The first PET scan had been suggestive of lymphoma in my spleen although my haematologist wasn’t certain if it was there or not, but this one showed no evidence of it. The radiologist who reported the first scan also raised the possibility of bone marrow involvement although my haematologist was quite firm in his opinion that there was no lymphoma in my bone marrow. This scan indicated that my bone marrow looked normal.
I mustn’t have reacted much to the news that the scan showed a dramatic improvement, as the haematologist kept telling me it was great news. It was fantastic. She said if the scan had been done after three cycles (6 treatments) of chemotherapy instead of two cycles (4 treatments), it probably would have been completely negative. She said my cancer is responding to the chemo and it is excellent news. She then went on to say after two more sessions of chemo I’ll be half way and then I can start counting them down. She was very, very positive and was also trying to give me a strategy to get through the 8 further sessions of chemo I had in front of me.
I asked her if people ever respond like I have but then the cancer has progressed when the PET scan at the end of treatment is done. She said “well yes, but that is very, very rare” and again reassured me that things were great.
I left the appointment and before I exited the hospital I sent the following text to a few people who were desperate to know the results of the scan:
Good things happen in threes. Today a lady let me go in front of her at the supermarket, then when I parked my car at the hospital a lady gave me her parking ticket because there was more than an hour left on it. And my PET scan is almost negative. Doctor very happy. She said if they’d done it after 3 cycles instead of 2 it would have been completely negative.
My phone was then running hot. Text messages, phone calls. I couldn’t keep up. Everyone was VERY excited and relieved. Jenni texted me and said she was almost crying. Almost? I would have thought that result should bring on some tears!
As I drove away from the hospital, I was feeling quite good about the results but I wasn’t excited. It was definitely a huge relief to know that all the side effects I had experienced were not just horrible effects of a treatment that was doing nothing for the cancer. It would make the side effects that little bit easier to tolerate in the future. I didn’t want to be negative Nelly but it was impossible to feel excited when I was only one third of the way through treatment and I still had more than three months of chemotherapy and the associated side effects to endure. Eight mores sessions, which was twice as many as I had behind me. I did spread the word however (although not too widely), that it was good to know that the good chemo was kicking the good cancer’s arse!
I also thought about other people with other types of cancer who go through chemotherapy and experience all the horrid side effects but have no idea whether it is actually working or not, as they don’t have a PET scan after a few cycles to assess how the cancer is responding. People like Lisey with breast cancer. These people usually have surgery, the aim of which is to remove all the cancer, before they commence chemotherapy (but sometimes things are done in a different order) so there is essentially no cancer left to assess with a scan. The chemotherapy is given to take care of any stray cancer cells which might be floating around. There is just no real way of knowing if the cancer responds to that particular chemotherapy. You just can’t compare different types of cancers and their treatments. It’s like comparing apples with oranges. Lisey later texted me with these very thoughts, that she would never really know if the chemotherapy she was given had any effect on her cancer cells. I did feel I was in a fortunate position knowing that my chemotherapy was working.
I drove to the nearest shopping centre to try to find that mermaid nightie for my daughter. Before I went in, I had a feeling they wouldn’t have it because I’d already had my three good things for the day. They didn’t have the nightie but I did find some lovely mermaid bathers. I gave them to her that night and told her I’d had a test which showed my cancer was nearly gone so I bought her a present to celebrate. She was pretty happy with that – both the test results and (probably more so) the bathers.
That evening I texted my radiologist colleague and thanked him for the good PET scan result as I had asked him to make sure it was negative. I also asked him whether he thought my bone marrow did actually have lymphoma in it on the first PET scan or whether the radiologist had overcalled it, which my haematologist had thought was the case. The appearance of my bone marrow was different on the re-staging PET scan so I was wondering whether that actually meant there probably was lymphoma there initially and there now wasn’t. My radiologist colleague agreed that radiologists often overcall the bone marrow (that is, say it looks like it has lymphoma in it when in fact it doesn’t) and that the appearance on the initial PET scan probably represented reactive change rather than infiltration by lymphoma. Thinking about it later, I decided that my bone marrow probably looked different on the re-staging PET scan because the chemotherapy was wiping it out! I have no idea if that is correct or not and apologies if this paragraph has completely confused the non-medical readers.
So, how did I feel about the results once I had really had time to think about things? I knew they were good results but I also knew they could have been better. And of course, a lot, lot worse. My haematologist (not the one I saw to get the results, the male one who I had seen from the start and would continue to see when he got back from holidays) had told me that he expected this PET scan to be negative. It was nearly negative, but it wasn’t completely negative, so what did that mean? I didn’t have bulky disease (that is, my lymph nodes weren’t greatly enlarged) but I had read about people with bulky disease who had a negative PET scan after 2 cycles of chemotherapy. So given that I didn’t have bulky disease and the PET scan wasn’t negative, did that mean the response wasn’t really that great after all? It probably didn’t because some people have no response at all to the type of chemotherapy I am having (ABVD) and at least I was responding. I just didn’t know what it all really meant.
And I don’t really believe that good things happen in threes. If the lady in the supermarket didn’t let me in front of her and the lady in the car park didn’t give me her parking ticket, my PET scan still would have been almost negative.