Although the plan was that I would have radiotherapy, when the decision was made to have a double mastectomy, both my surgeon and oncologist said that they would drop radiotherapy from my treatment plan. This doesn't always happen but if you're having an immediate reconstruction (especially if you're having implants), the radiotherapy can have a negative effect on your skin and implants, making reconstruction must ore challenging. I must stress however that this is an individual plan for me and others may be advised differently. Strangely, having that removed from my treatment plan is a little worrying as it's one less defence against the breast cancer but I've got to home that the chemotherapy has got any of the little blighters that might have been hanging around!
As I won't have any experience to draw on, I have asked my good friend, Jayne Bartlett, if she would write a first hand account of her experience of radiotherapy. Jayne was diagnosed about 18 months before I was and I remember it as clear as day. I experienced the feeling of not knowing what to say or do for the best. What I can tell you is that during her treatment, I have never known anybody show such resilience and sense of humour. I know she had her dark days but you wouldn't know. She was one of the first people I turned to when I was diagnosed and she held my hand for the first few weeks for which I will be eternally grateful.
Jayne's breast cancer was ER+, grade 3, stage 1 and invasive ductal. Here's Jayne's account of what it's like to have radiotherapy:-
I had my surgery (lumpectomy and node removal) on 12th December 2014, and was quite anxious to heal and get on with radiotherapy. I healed well, and more importantly did my arm exercises, and had an appointment in January for the all important planning appointment.
I didn't know what to expect, but it was now that I met with my oncologist. He discussed the pathology results again with me, and checked whether I had good range of movement in my arm and shoulder. This is why it is so important to exercise after surgery - during radiotherapy you need to have your arm secured directly above your head, and have to hold perfectly still, which can be painful if you have restricted movement.
He then passed me on to a group of radiographers, who took me into a room with a massive machine. This was a CT scanner, which they use to confirm the mapping of the treatment area. All I had to do during this bit was lie still, while they did the planning, which involved them using marker pens and bits of wire or string, to map the best angles. This is important as the linear accelerator (radiotherapy machine) needs to aim the beams specifically and try to avoid lungs and heart. After lots of drawing all over my chest, and placing measuring tapes, they then gave me a CT scan to check their calculations. This is logged into the computer and used for your treatment. At this point I had three dots tattooed onto me - one between my breasts, and one at each side under my arms. These are used for the staff to place you onto the table for treatment.
I was given early appointments as I wanted to continue to work, and began treatment on 9th February - every morning Monday to Friday, for three weeks.
The treatments themselves are very quick. About 3 minutes. It takes longer for the staff to line you up correctly on the beam. The machine itself is huge, with a table for you to lie on. They try their best to make you comfortable, with a cushion under your knees. Your arms are placed behind your head and wrist rests used to keep them there. It isn't uncomfortable but at first you're acutely aware that you need to keep still. They keep telling you to relax but first time that is difficult. When you're in position, the staff leave the room, but they can talk to you from outside, and you can talk to them, for instance if you feel you're going to sneeze or cough. The part of the machine which delivers the beam moves around you, clicking and whirring, and can feel a little spooky at first. There was music to listen to, and before you know it you're all done!
Each morning they will ask how you are, and as treatment progresses will check your skin. I felt hot afterwards, and the skin got more and more pink. On the final week it felt a little sore, like sunburn, but I had no peeling or broken skin, which some people can suffer from. A couple of times during treatment they would take images to check the area, and I had two interim reviews with a radiographer.
My best advice would be to wear easy clothing. I wore crop top, sports type soft bras, which could be just pulled down to my waist in the treatment room after I had taken my top off. Also, after my surgery I moisturised a few times a day to make sure my skin was in great condition. I used pure coconut oil for this. After treatment, as soon as I got to work I used pure aloe vera on my treated boob to take the heat away. If you are unlucky and suffer broken sore skin, the staff will give you what you need. Oh, and drink plenty, as you need to keep yourself hydrated.
After the first week tiredness kicked in, and after work I would go home and go to bed for a couple of hours. It's best to be kind to yourself as the treatment has to carry on however you feel. The worst part was the daily 50 mile round trip each day for those few minutes of treatment, relentless for three weeks.
At the last session, I was warned that the effects of the treatment would carry on working for up to 3 weeks after and they weren't wrong! I became quite sore, and my nipple peeled in the second week. My GP gave my Kamillosan, which she normally gives nursing mothers, and this was really soothing. The staff at radiotherapy gave me the number for the machine I was on, and said to contact them if I had any worries, but I didn't need to.
One effect which is common after treatment is random, stabbing pains in the area treated. They can be worrying at first, but the oncologist reassured me they are common and normal, and they stopped by about 18 months after the end of treatment.