I received my diagnosis on Wednesday (2A cervical cancer) and was told at the meeting with the specialist that I would be having a PET CT scan asap then probably radiotherapy and chemotherapy within the next few weeks. I was contacted yesterday by my Macmillan nurse wondering if I had heard about the scan which I haven't and to tell me that I might have to wait until late December for my appointment with the Oncologist. Im worried sick... I felt I had a fighting chance when I was at the initial meeting and everyone seemed to be so on it but now I just feel terrified Im being left... Is it normal to wait so long?
Hi Edy
We want everything to happen immediately when we have a cancer diagnosis and I know what it’s like to feel that things are taking a long time to happen. My referral to gynae took 3 weeks, then tests, then biopsy and then diagnosis. It took around 6 weeks from diagnosis to starting chemo and radio, which was then 3 months after first going to the doctor. Waiting is very common and there is a lot of planning going on before treatment can start. The pet/ct scans are critical to the process, and everything needs to be analysed and checked. Prior to radiotherapy starting, there needs to be another planning ct so that you can have tiny tattoos marked out where the radiation will be targeted.
We worry that everything will advance and be worse during this time, but cervical cancer is typically very slow growing and these delays do not affect the success of treatment. Your treatment is tailored to you as an individual, so it is really important that all pieces of the jigsaw are gathered together to give you the best possible outcome. I know it’s hard not to worry, but trust in your team to be doing the absolute best for you. You’re not being forgotten about, and waits of 2-3 months for treatment to start are very normal.
Hi Edy
Please reach out to your specialist nurse to let her know about your level of pain, as there is lots that can be done to help. I had very bad pain, and was prescribed co codamol on a higher strength than is available over the counter at the chemist. When I felt that wasn’t doing enough, my consultant prescribed Tramadol. Sometimes you need to tweak meds to get something that works, but it’s worth persevering because pain wears you down and exhausts you. You want to get this managed to help you cope better. There is a trade off with strong painkillers in the form of constipation, but this too can be managed.
With painkillers, you don’t want to wait until you’re in a lot of pain before taking them as they take time to work. What I did was took the recommended amount at the appropriate intervals to keep the pain level manageable. And stool softeners/laxatives/prune juice to manage constipation, although that was not an issue for me once radiotherapy kicked in!
Hi Edy
The pain relief “sandwich” you have described will hopefully keep the pain under control for you. Being able to take the 2 different pills in this kind of rotation is very helpful. The specialist nurse for me was wonderful-always there to answer a question or sort something out, and she kept in touch regularly by phone as I went through treatment. I’m glad you also have an efficient nurse keeping on top of everything.
The PET scan was something I found easier than the mri, although it does take longer as you are left to sit quietly for about an hour while the radioactive tracer goes round in your body prior to the actual scan, which itself didn't take long. Things are moving along nice and quickly for you which is really good news as the sooner all these investigations are done and the results are in, the sooner treatment can start.
