worried about after effects of radiotherapy

I am waiting to receive radiotherapy from a DCIS operation the leaflet I got today through the post has worried me, I am worried the lymp nodes are going to be damaged and i will get an aggressive form of cancer as my dad before me, (of course his was a different type to begin with) it is also on my left side so my heart will proably end up up damaged, im wondering is it worth it maybe i shall opt out, has anyone else a similar story with a positive ending, if i change my mind will i get fined


Hi Cathy

This time before a treatment is probably the hardest. There are so many unknowns, so many questions the leaflets don’t answer - and so many well-chosen words in the leaflets that spark alarm in us.

I was heavily node-positive and so had full axillary clearance along with a full mastectomy on the left side so I understand your fears. First of all, the lymph system finds a way to adapt after the removal of lymph nodes. Second, two of my oncologists both said that radiotherapy is the most effective of all the treatments, statistically. Given the nature of your breast cancer, you may want to think about that before deciding it’s not for you.

This was my experience (bearing in mind I had a sh** time during chemo, I described it as “a doddle” in my blog). I had radiotherapy down my collarbone as well as against the chest wall. Before treatment, you have a positioning session where you are placed to the millimetre (or smaller) to ensure minimum effects on nearby tissue. There is a special ‘shield’ used to direct beams away from the heart and, 18 months on, I’ve noticed no impact. Similarly, I’ve noticed no impact on my lung, though I have been told to inform anyone who xrays my chest that I’ve had radiotherapy so they don’t misinterpret minor scarring right at the top, which is unavoidable.

I have experienced a bit of gruffness in my throat which may be the result of the collarbone treatment (but equally may be the result of some medication I need). Apart from that, I had a small itchy patch under my mastectomy scar and on my shoulder blade after 8 sessions. Aloe vera soothed that and it didn’t get worse. The treatment is quick and painless - it takes longer to get undressed and dressed again. About two months after treatment, I had burning pain along/under my scar BUT chemotherapy had caused neuropathy so pain would feel worse for me. That’s it. In fairness, I do know of people on here whose experience has been less easy but I’ve come across as many who have found the daily travelling worse than the treatment itself. My mother said that was the worst bit!

Unfortunately, hospitals are obliged to point out every possible side effect. These are just too alarming when we don’t know what to expect and we aren’t feeling strong emotionally. However, patients have a right to be informed. I would say trust your team and all the specialists who support it, including the radiologists. Millions of women have had radiotherapy. If heart damage was a significant problem, either they’d have resolved it by now (they have - remember the shield) or they wouldn’t do the treatment.

Hopefully that’s a positive story for you. As regards the link between your specific breast cancer and your father’s cancer, I would suggest you ring the nurses at the number above. They are so helpful and reassuring and, if they know, they’ll explain; if they don’t know, they will direct you to another source, maybe your breastcare nurse or oncologist.

I hope you decide to go ahead with the treatment but we are fortunate - we do have a choice.

All the best, Jan x