Hi everyone. Due to start external radiotherapy in July, followed 3 to 4 weeks later by 4 rounds of chemo. It has been really helpful to read all your different experiences. I was told I was very borderline for treatment, so not sure whether to have both or just the radiotherapy. My mind changes daily, so have booked a telephone consultation with my oncologist, as when I saw her, I was too shocked and overwhelmed to think about asking the questions I need answers to!
Hello Love to walk,
It is easy to feel overwhelmed when making decisions about treatments.
I had 4 cycles of paclitaxel and carboplatin and then followed it up with 25 sessions of external beam radiotherapy. Mine was adjuvant which means it was to try to prevent any recurrence. It was not easy but it was manageable and I am glad I did it. I know that if I do ever have a recurrence then I did everything possible to try to avoid it.
If you do consider chemotherapy, there will be a consents type appointment before it starts and it is the opportunity for the oncologist to check you are recovered enough and for you to ask any questions and express any concerns. I was also given a sheet that explained in detail the side effects and we talked these through in detail. For me although I was very scared about going ahead, I was more scared of the cancer coming back.
If you do go to the consents appointment remember that they have to tell you all the potential side effects so that you are able to make an informed judgement, it does not mean that you will necessarily have them all. If at the appointment you decide you do not want to go ahead that is fine. Although the oncologist can discuss things over the phone, the consents appointment needs to be done in person as they need to do your obs, height, weight etc and blood tests.
My regime was 4 cycles of 21 days. Day 1 was spent in hospital and the rest at home. I had my chemo drugs through a canula in the back of my hand. I used the cooling cap successfully- I did lose some hair- it got thinner but there were no bald patches. Main symptoms I had were nausea, tiredness, hair loss, generally feeling grotty. I was given medication for the side effects.
Its a big decision and one that only you can make. I am glad I had it if that helps. It wasn't great but I had a lot of support and coped with it. Incidentally I found the side effects from my radiotherapy worse than the chemo. Although radiotherapy is aimed in one area whereas chemo is more systemic my side effects with the radiotherapy were worse. With chemo I had some days each cycle when I felt really rough but then I recovered and was able to do a few bits and pop out and about. By the end of radiotherapy I was pretty much going to the hospital, coming home and feeling ill.
Hope this helps
Jane
That's a good plan to see them face to face. Maybe think about writing down a list of questions you have to make sure you get everything answered. I did this at my last appointment and it was really helpful as I was able to speak about things important to me and they did not mind at all. Good luck
Well done, I kept a list and added to it too! I was given a phone number to the oncology nurse team as well which meant anything I missed or I needed clarification on I could just call them. Also was given an email address. Good luck with the appointment
