My intention was to keep a daily log on my experience with radiotherapy. I was interested in doing this because my experience with it didn’t match what I was told to expect. My feeling is that the medical community may simply not know all that much about what women are experiencing with it. The radiotherapists said as much, hinting that it’s very individual and that it would be hard to tell someone precisely what to expect. It also wouldn’t surprise if women simply don’t tell anyone what they are experiencing/feeling either. I do it too. They ask me, “how are you doing?” I answer, “good thanks,” when I really want to say, “I’m exhausted, I struggled to keep my eyes open on the walk here and nearly fell 3 times as I tripped over my own feet because of it.” I didn’t say that though.
This general fatigues is also the reason I haven’t been back to this blog.
My problem with the information on radiotherapy is that the full range of what can happen, that is also nothing to worry about, is not adequately represented in my opinion. I haven’t read everything that there is to read about radiotherapy to the breast, and I can only comment on my own personal experience and the information that has been handed to me, obviously. However, when all the information you get repeatedly tells you not to expect symptoms for 2 weeks and you can feel symptoms from day 1 it does cause a certain level of panic.
Day 9 had been my birthday and a long day. I managed to get out in the evening but it ruined me for the next day, a Saturday, and on the Sunday I was mostly ok again. Monday, the 1st May had been a bank holiday which I was very grateful for. My kids were visiting their father for the weekend, so it meant I could lay around and do virtually nothing which was what I needed.
Over days 10-13 (Tuesday – Friday) the fatigue they talk about it hit me.
This last full week (Days 14-18) has been a total mixed bag. Monday and Tuesday were my last days of radiation to the full breast. Now I am getting a “boost” for 5 days (16-20). I’m apparently getting the same dose of radiation I was getting to the whole breast, but restricted to the area where the tumour was. Monday and Tuesday I was exhausted. Wednesday I was very tired but not so much and Thursday and Friday even better. I needed to have some sit down time and to take it a bit easy, but I was at least more awake. What I do have since the boost started is more pain.
Regarding pain, up to last Wednesday, it has been mostly ok. I got a rash on the area where the skin is thinner. It can get itchy, it burns sometimes and it’s sensitive. That’s true for the whole breast. It will suddenly feel like it’s on fire at times, but when I put aloe vera on it, it calms down. Sometimes I can’t stand any fabric on it so I go in my room, shut the door and just lay on my bed and watch TV for an hour or so. Since the second week I have the feeling that the nipple could just fall off at any moment. It feels burnt and severed.
I’m not sure if it is the boost or just an accumulation of effects, but since Wednesday (Day 16), the breast is sore like it was post surgery. The radiotherapists told me that this is likely due to that the radiotherapy is damaging the tissues and nerve endings that have only just recently healed. This makes sense as I have been getting what I think is nerve pain again on my shoulder blade which was bad after the surgery but then eased off again in the weeks following.
As this week has gone on I have felt less tired but more sick. By this I mean I have been having headaches and feeling nauseous. I have to wonder if it is because I am sleeping a bit less. I find that I am more awake this week, but I have to wonder if it is simply because I am more in pain which keeps me awake.
In spite of everything I have written above, it is has not been as awful as I expected it to be but it certainly represents a low point in my life. The radiotherapists have mentioned more than once what a strong person I am, which makes me think it has gone as well as it can do.
I think I am not so strong as people think. There was at least one moment when they walked out of the room that I had to control myself from bursting into tears and a couple of times when I felt I might start hyperventilating, but the moment passed and I realized it was just thoughts spiralling out of control.
In the sense I don’t want any of this, I don’t differ from anyone else who’s had breast or any other sort of cancer. I think no one likes the idea of any of the treatments whether it’s surgery, radiotherapy, chemotherapy or endocrine therapy. Having said that, when I talk to people in the waiting rooms or read what people write on line, it seems (and I of course don’t know this to be a fact) that the majority of people want to throw everything they can at the cancer and I have come across people with Oncotype scores like mine who were upset about not getting chemo. I seem to be in a minority position as regards not having much confidence in the therapies. It could be an advanced case of denial. If I didn’t have children I think I would have stopped at the surgery and just taken my chances. The jury is still out regarding me & Tamoxifen. I have been dreading this more than anything else.
However, this week I found a report published by Oncotype DX, which finally made sense of my recurrence score and made me wonder why my oncologist did not put it so plainly and also explain the results a bit better. According to Oncotype, my score of 19 means I have approximately a 12% risk of recurrence over 10 years, but this percentage is based on the assumption that I will take Tamoxifen for 5 years. I got none of this information when I met the oncologist to discuss the Oncotype results. It was only pointed out to me that the 19 almost a low risk score, with low being 0-17, and then the oncologist put it into context with survival statistics provided by the NHS Predict tool.
According to NHS predict, the benefit of chemo, given my low recurrence score, didn’t merit the side effects compared to the potential gain (1.9% over 5 years and 4.5% over 10). This was a no brainer in my opinion. However the potential gain from taking Tamoxifen, according to the tool (which doesn’t seem to factor radiotherapy into the equation) is 2.4% over 5 and 5.6% over 10 years. It lifts the 10 year survival rate from 78.2% (with no adjuvant therapy) to 83.6% (with Tamoxifen). Rounding up, 84% of course sounds a lot better than 78%, but I wasn’t convinced the side effects were worthwhile compared to the potential gain.
The Oncotype results suggests the risk of distant recurrence at 10 years would be only 12%, lifting the 10 year survival rate to 88%. Sounds nicer than 78% and 84% and makes popping the pill seem more worthwhile. In the end it’s all population statistics and it is impossible to know where I’ll fit into it. My gut feeling is that I’ll be fine and I don’t need the Tamoxifen, but it is obviously very possible I am just behaving like a moron.
I have been regularly reminding myself that I can’t see the future. For example, years ago I remember reading an article about how they were trying to develop phones on which you could use the internet. My reaction was this: “Who on earth would want to look at the internet on their phone.” Turns out that pretty much everyone wants the internet in their pocket. I felt the same about cameras on phones.
I am not sure that this new information about the 12% has been a game-changer for me, but I have decided, begrudgingly, to give Tamoxifen a go. The year 2017 has been something of a loss anyway, so I think I’ll try it until Christmas and otherwise go on a health kick and see how I go.