Hi all I'm starting treatment for vulva cancer shortly. Weekly chemo and daily radiotherapy for 5 weeks. Feeling pretty anxious so would be grateful for any advice and or tips to get through the treatment.
Many thanks
Sue
Hi suze99
I had pelvic radiotherapy for womb cancer for 5 weeks last summer. Before that I had chemo.
It is natural to feel anxious before a new treatment and I certainly was. If it helps I will tell you a bit about my radiotherapy. Although my cancer was in my womb- I still had pelvic radiotherapy. I had to go every day for 5 weeks- a total of 25 sessions.
When I was first told about the radiotherapy I was worried that I would not cope with that amount of treatment and so many visits to the hospital but once started, I counted down the days on my calendar, got into a routine and it felt like it went quicker than expected. Around week 3 I had a bit of a melt down, was really tired from it all but a close friend told me I could do it, picked me up and I managed to carry on.
The first thing that happened was a meeting with the radiotherapy oncologist consultant. She went through the treatment and explained the side effects. I asked lots of questions and then signed the consents.
The next day I got a phone call from one of the radiotherapists for my planning scan. I was told to arrive an hour early. I was given a mini enema to do myself. I had to sit in the waiting room while it took effect. They then came back and I had to drink 3 cups of water. I was told to wait 30 mins. Next I was collected and taken to the CT scanner. It was a smaller one than I expected. I spoke to the radiotherapist for a few moments and he explained what would be happening. I was asked to take off my trousers but could keep my knickers on. I lay on the scanner bed and they did an ultrasound of my bladder. It had to be a certain amount full and I had to have an empty rectum. This meant that the radiotherapy dose avoided these areas as much as possible. Next I had the CT scan. Marks were made on my skin to line up the machine. I did feel a bit panicky but it was done quickly.
Then another radiotherapist came out and spoke to me. Next was the tattoo dots. I was expecting a tattoo gun! But in reality she put a drop of ink from a pipette on my skin where the pen marks were and then gently pricked the surface with a needle. I had one low down on my tummy and one on each hip. They were about freckle size. Next I got dressed and spoke to the radiotherapist again and was given a list of my appointment times and dates. My radiotherapy started about a week later.
I arrived early again and did the mini enema. It sounds far worse than it is and I was told I only needed to do it for the first 10 sessions. Next I did the water drinking and sat in the waiting room chatting to others who were having similar treatment. You did tend to see the same people which I found helpful and the chatting in the waiting room helped pass the time. When it was my time to go in- I was shown to a changing room. I was asked to remove just my trousers again. You could wear a skirt if you prefer and then just lift it up. At no point did they tell me to wear a gown.
Once in the treatment room, I had 3 radiotherapists with me. I was told to take my shoes of and get on to the bed/plinth. I had an ultrasound to check my bladder was at the right size. I had to pull my knickers down a bit so they could line me up with the tattoo dots. Once in position they left the room. They could see me the whole time and could speak to me through a speaker. I asked them to talk me through what was happening and this really helped with the nerves. The machine then went around me doing a CT scan of my pelvis to make sure everything was lined up. Then there was a couple of minutes wait while they checked the CT scan. Then they told me the treatment would start. The machine moved around me twice. The whole time they were out of the room was around 5 mins. They then came back and I was free to go. Each day I was asked about side effects and how I was doing. I found them really friendly and supportive.
With side effects the main ones I experienced were fatigue, diarrhoea and some nausea. Everyone is different but tummy effects seemed common with the people having pelvic radiotherapy.
Fatigue built up during the course of treatments although I had chemotherapy before and I believe this also had an effect. Just going back to and from hospital everyday was tiring. Most people seemed to either have someone driving them or were using hospital transport. By the last couple of weeks I found that other than the hospital visits I didn't feel like doing a lot more.
Diarrhoea for me started around 2/3 treatment and got progressively worse however I was given medication to help. There was a lot of trial and error but eventually I was put on 4 medications that when taken in a certain way really helped. I was seen by either a radiotherapist or my oncologist every week who monitored side effects.
I did have some nausea towards the end of the treatments but in the end was prescribed one to take 30 minutes before the treatment and that helped.
I didn't get many bladder effects, just a bit of irritation, a bit like you are going to get a UTI but it doesn't happen. I think it helped with the amount of water I was drinking.
I was warned about possible skin effects and was given a special moisturising cream to help prevent them. I had slight irritation/itchiness but it didn't progress any more. They checked the skin each week.
Radiotherapy does not hurt while you have it. The machine does not touch you. It carries on working for a few weeks after treatment finishes and then hopefully things will improve. My last session was the end of September. Most things have settled down. I still have a bit of a dodgy tummy ( I am avoiding some dairy and eating low fibre foods to help)and a bit of stiffness in hips. I am seen every 12 weeks for check ups.
The only other thing I can think of to help is that Macmillan can give you a can't wait toilet card so if you get caught short during treatment you can ask for toilet access in shops etc. It helps take some of the worry away.
I hope this helps but if you need anything else please do ask. I hope your treatment goes well for you.
Jane
