My Experience of Radiotherapy
After the lumpectomy, I was advised to have a course of radiotherapy to kill off any stray cancer cells.
I agreed to this, but naturally I was concerned about the treatment and possible side effects etc.
Initially the treatment was discussed with the oncologist and it was proposed to have 18 sessions. Three would be a booster, higher dosage, just to the lumpectomy area, then 15 sessions of a lower dosage, but covering the whole of the breast. They wanted to wait at least 6 weeks after the lumpectomy so the surgery area had time to heal.
We discussed possible side effects. The most common would be skin changes in the area being treated, similar to sunburn, with redness, itching and possible blistering. I may feel overwhelmingly tired or weary, with little energy to do anything. Nausea and vomiting were possible, but very rare for radiotherapy (more common with chemotherapy). All side effects would be cumulative, possibly come on gradually as the course of treatment progressed and may be at their worse the week after all treatment finished. At anytime I could discuss any side effects with the radiologist and there were conventional medications and creams that could be given to help.
Pre Radiotherapy Appointment
I was invited to attend a pre-radiotherapy session at the oncology unit at the sister hospital to my local one (Two hospitals share the expensive equipment). This meant I had a 30 minute drive there and back for my treatment. This appointment was for two purposes:
1. For me to talk to the staff, discuss any concerns, be fully informed as to what was to happen and answer any questions etc.
2. For the radiologists to gather all the data they needed about me so they could work out my specific programme.
I was given ample time to discuss treatment, concerns, side effects etc and given a DVD to watch at home. This showed the actual machine and how it worked etc. I felt empowered and informed. I think a lot of fear people have over radiotherapy comes from not understanding the treatment, procedures etc. I was certainly put at ease after this session.
A scan was taken of the post-operative breast, so they had the latest information and could create a 3D model of my breast. This would allow calculations of the amount of radiation to be given and also the best angle to direct the radiation so it avoided other organs (such as lungs) as much as possible. Technology has advanced greatly in the last few decades. Gone are the days when the breast was just blasted with radiation and hoped for the best. Now there are machines costing in excess of £100,000, computer guided with great precision, to optimise the treatment and reduce side effects as much as possible.
I was then aligned on the couch. Lying on my back with my arms above my head, resting on supports. This was a little uncomfortable due to the removal of lymph nodes under my arm pit, but it was bearable for the few minutes I had to maintain the position. Three small pin-head tattoos were made. One between the breasts and one either side under the arms. Measurements were also taken of the optimum couch height and position within the room and position of the foot support. These were to be used to align the radiotherapy machine accurately (within a millimetre) for each session.
Finally a photograph (mug shot!) was taken of me to be placed on my notes for identification prior to each radiotherapy session.
I was very impressed with all the staff. They were very thorough, answered all my questions etc. I must admit (with my scientific background) that I was also fascinated by the technology etc.
A few days later I received a letter from the radiotherapy department. It gave a time table of ALL the dates and times of my sessions over the next few weeks. All my sessions were mid to late afternoon (which is what I had requested). Treatment would be given every day except weekends and bank holidays. (There were lots of bank holidays during this time as there were Easter, May bank holidays and extra day for Prince William's wedding). This meant my treatment of 18 sessions was spread over nearly 5 weeks.
I was also given a parking pass for the oncology car park for free parking during my treatment.
My free oncology car park pass was not as good as it sounded, as the car park was always full, because of chemo patients arrived early in the day and then stayed until late afternoon.
I discovered very early on (at my pre-treatment appointment) that parking was going to be a problem. After discovering the oncology car park was full, I entered the main car park, taking my ticket on entry. I then spent 10 minutes driving round and round the car park with at least 20 other cars, all looking for the elusive non existent parking space. I then gave up and decided I would try outside the hospital. The exit barrier would not accept my ticket as it hadn't been paid for or validated. This then led to a stressful discussion with the barrier attendant, who eventually let me and several others out of the car park, realising that we had never actually parked. I never tried the car park again.
So off to a local residential area adjacent to the hospital. They had obviously become wise to the lack of parking at the hospital and the whole area was covered by a resident's only / wheel clamp zones. Eventually found a small area on the far side of the houses where there was no clamping, where I was able to park. This became my parking area for the next few weeks. It was 10 minutes walk from the hospital.
Car parking was more stressful than the actual radiotherapy treatment.
Treatment Starts 30th April 2011
I decided to drive myself and went on my own.
Due to the previous stressful parking situation, I arrived in very good time for my first session.
The receptionist sent me to have blood samples taken (to check my liver and kidney function before treatment started). However, there was some miscommunication, so when I eventually arrived at the radiotherapy waiting area, they had been calling my name for several minutes and the nurse was non-too pleased at my late arrival. Not a good start.
I was a little nervous. Shown into a two doored changing room. The idea was you entered one door from the waiting area, locked the door behind you, changed into a hospital gown, then opened a different door on the other side of the room which took you into the treatment area. The process was reversed when coming out, so the waiting area didn't see you in your gown etc. Very civilised.
My details were checked: name, address, date of birth, photograph etc and led into the treatment room.
Several minutes were then taken by the two staff members to position the couch and me in exactly the correct position. Left a bit....stop...right a bit...stop...one millimetre up...stop...that's it. "Keep as still as you can, breath in and out when we tell you and we will be in the adjacent room. We can see you through the window and hear you if you speak."
The machine then whirred into life, robotically rotated and positioned itself. I visualised myself lying on a beach, blue skys and the warmth of the sun upon me, receiving a gentle suntan. The machine clicked. Whirred. Silence for a few seconds, clicked, whirred, moved to a different position, clicked, whirred, silence, clicked again. "That's it, breath normally and relax". A grand total of 56 seconds. My first treatment was over. Was that it? I didn't feel anything, see anything. The only evidence of anything happening was the mechanical noises of the machine moving. What's all the fuss about? I thought.
Confirmed next session time with the receptionist, then pleasant 10 walk in the sun back to the car.
And so I got into a routine every day. Some days I was treated by one of the other machines (hospital has 4), not quite as civilised and you changed into a gown, then sat back in the waiting area to be called for treatment. Some waiting areas had a TV to watch and also an ongoing jigsaw puzzle for you to have a go at. The weather was good and sunny, so a refreshing walk to and from the car. Started seeing familiar faces each day, as they were also coming for daily treatment and I got to know some of the staff. No side effects. Nothing.
Day 10. Things change
So day 10 everything seemed the same as all the previous other days. However, as I started to walk back to the car after treatment, my legs turned to jelly and I almost crumpled into a heap, 100m away from the hospital door. I felt dizzy and nauseous. I propped myself against the wall. Stayed for several minutes, walked a little further, almost collapsed again. It took me half an hour to complete my 10 minute journey back to the car. I felt anxious and scared. I sat in the car for ages wondering if I could actually drive the 30 minutes home. Decided I would start the journey and pull up and stop for a while if I felt bad. I was very relieved when I eventually got home. Slumped into a chair and burst into tears.
My family were very concerned and instantly decided that they would drive me to treatment in the future and I was not going on my own again.
Second half of treatment
Whereas the first half of my treatment was 'a walk in the park' the second half was more challenging. My breast started to become red and itchy and very tender to touch, like mild sunburn. It was more uncomfortable at night if I lay on it. The weakness in my legs occurred after every treatment, and towards the end I would sit on the grass outside the hospital door and wait for my family member to fetch the car and pick me up.
I developed severe weariness, not tiredness, I didn't want to sleep. But my arms and legs were heavy like lead and I had no energy to do anything. I remember one occasion when I was watching rubbish on TV. The remote control was on the other side of the room and I didn't have the energy to get out of the chair, to get the remote, to change the channel. I continued to watch the rubbish TV!
I developed a pattern. My treatments were in the afternoon. Immediately after each treatment I would feel weak and weary. This lasted the rest of the day. Night times were a little disturbed because of the breast discomfort. Mornings I felt better and had more energy and motivation and this would last until I had the next treatment. I quickly learnt that if I wanted to do anything at all, it had to be in the morning and not to do too much. My family were brilliant, helping with housework, shopping and cooking and taking care of me. The hospital staff were concerned and asked me each day how I was feeling. They re-assured me it was all normal and that the treatment would be worth it in the end and that my side effects, particularly the skin changes were very mild in comparison with how it could have been. I put this down to using Homoeopathic burns cream after each treatment (see self help below) and taking homoeopathic remedies throughout.
3 days before my final session, I started developing small blisters on my nipple. Very painful. The staff were still surprised that 'my skin was holding out well'. They asked if I was using the gel pads. "What gel pads?" Apparently I should have been given gel pads much earlier in my treatment. These were 10cm pads, a bit like bubble wrap. You put them in the fridge to cool down, then placed them on the breast to take the heat out of the area. Reusable. Apart from the initial shock of putting the cold pad on the breast, they were fantastic and gave a hugh amount of relief. I wish I had known about them sooner. I was also offered a steroid cream for my breast, but declined, preferring my natural homoeopathic creams.
So, eventually I came to my last treatment. I remember taking the gown off and throwing it with great determination and pleasure into the laundry bin. Then almost skipping out of the treatment area, punching the air in delight. I think all the others in the waiting room thought I was mad. I knew how they were feeling, still in the midst of treatment, which seemed endless and depressing.
After the Treatment
My breast continued to become sore over the next week after the last session, then gradually began to improve. I continued using burns cream twice daily, then after a couple of weeks changed to homoeopathic healing cream.
The weariness and fatigue continued to be a major problem for several weeks, then slowly began to improve. Some days I would wake up, my limbs were like lead and very weak. I wouldn't know if I would be able to get out of bed or not. Even several months after treatment had finished I would have a bad day. There was no pattern to this and became less frequent as time went on. I would have a couple of weeks feeling OK. Then out of the blue I would wake in the morning and knew straight away it would be a bad day and I couldn't do anything. I just learnt to accept these days. My oncologist assured me these were normal side effects of the radiotherapy and that I had got away lightly with my symptoms.
Reflections on my treatment
I hated it. Hated every minute of it.
It didn't fill me hope, that any remaining cancer cells were being destroyed. It felt as if I was being subjected to some medieval torture process from which I could not escape. That I had to conform and go along with what was suggested to me.
The daily sessions dominated my life. Every afternoon was taken up mainly with travelling 30 minutes there and back to the hospital. Most days it was at least 2.5 hours for the whole journey and treatment. I was unable to work (I normally work part time, 2 days a week).
I found the hospital a very depressing place. To get to the radiotherapy unit, you had to walk past the chemotherapy waiting area. So many very sick people. Was this my future too? And just the shear number of people being treated for cancer: 4 radiotherapy machines, treating someone every 20 minutes for 8 hours a day. That's nearly 100 people a day just for the radiotherapy. And all these people desperately hoping that the treatment will rid them of this horrible disease.
I hated the way I developed side effects from something intangible, that I couldn't see, feel or smell. Only the mechanical noises of the machine working. And that even months later I still had episodes of weariness.
3 years later the area covered by the radiation still had a slightly darker pigmentation, like a mild suntan. And I still have the 3 little tattoos to remind me of the treatment.
The staff were fantastic. Always helpful, caring, cheerful and encouraging, with a laugh occasionally.
I couldn't fault the staff or the hospital at all. I am so grateful to them all. They are doing such a difficult job.
And did the radiotherapy work? Well unfortunately not. In June 2012 when I discovered the second tumour near the sternum, the oncologist checked the area covered by the radiotherapy and the tumour fell completely within the treatment area. This meant two things: firstly I couldn't have any further radiotherapy on the same area (they can only treat an area once) and also any stray cancer cells HAD NOT been killed off. So with hindsight, the radiotherapy was a waste of time and did not do what it was supposed to do.
Would I have radiotherapy again? Well I hope it never comes to that, but I don't think I would.
Self Help for Radiotherapy
All homoeopathic remedies and essences can be purchased from Helios Homoeopathic Pharmacy.
The radiotherapy programme given for breast cancer usually consists of a minimum of 18 treatments on consecutive days (excluding weekends), but can be much longer. These are usually 15 'normal' treatments and 3 days of boosters, either at the beginning of the 18 days or at the end.
Side effects are generally cumulative and often don't appear until late into the programme and after the programme has finished.
Common side effects include:
Weariness, tiredness, exhaustion.
Skin changes in the area being treated, similar to sunburn eg heat, reddening, mild blisters, irritation, sensitivity, itching.
On rare occasions nausea and vomiting and severe burns with large blisters.
The following may be of help to reduce side effects:
(Always speak to your oncologist / radiotherapy nurses if you have any side effects, especially if they are severe or of concern)
|To help counteract the adverse effects of the radiation
||Homoeopathic Radium-bromide 200c combined with
X-Ray 200c. One dose before each treatment and one dose after each treatment.
|Weariness, Tiredness, Exhaustion
Homoeopathic Phosphorous or Phosphoric-acid 30C. One tablet up to 3 times a day as needed during the programme and continuing afterwards for up to 2 or 3 weeks. Also may be taken if you have very low energy days a long time after completing the radiotherapy programme.
Phosphorous: normally a bubbly, energetic person (like champagne) , but suddenly have no energy to do anything, gone 'flat'.
Phosphoric Acid: Complete lack of energy for anything, even thinking. Don't even have the energy to cry.
|Redness of the skin
||Homoeopathic Belladonna 30c - as needed - one tablet 3 times a day.
|Itching / irritation / mild blistering
of the skin
|Homoeopathic Uritca Urens 30C - as needed - one tablet 3 times a day.
|Severe burn with blisters
(seek medical advise)
Homoeopathic Cantharis 200C - up to one tablet, 3 times a day.
|Creams / topical applications
||The hospitals do not like creams being used. They advise the use of a basic cream such as a basic aqueous cream or E45 (from any orthodox pharmacy). What they don't want is a cream that contains metals, such as zinc, nickel or aluminum, as this interferes with the radiation. My oncologist was happy for me to use aloe-vera gel to give relief and I also used creams from Helios Homoeopathic Pharmacy, where the base cream is as basic as possible, with no added artificial chemicals and has no metals. The oncologist asked that I only apply creams after the treatment and not beforehand.
Helios Burns cream applied straight after each treatment and Helios Healing Cream for up to a couple of month to help the skin recover after the programme had finished.
|For general soothing: Gel Pads
||Provided by the hospital: just ask. They are 10cm squares of gel (a bit like bubble wrap), which you put into the fridge to cool down. After the initial shock when placed on the breast. they give the most incredible relief and feel soothing. Can be re-used.