I experienced a lot of nerve pain following radiotherapy. This had settled completely by October. It has now returned and over the last 2 months is as bad as it ever was. Is this normal?
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Hello.
I had one session of radiotherapy in June last year. It was quick and painless.
The following day l couldn’t walk. I was exhausted for weeks and it burnt the left side of my back. When my back gets hot now ( I use a heat pad ) l get the nerve pain.
I think it normal. I think all cancer treatment is brutal. It works for most but it didn’t for me. I hope it settles ( l was prescribed a steroid cream which helped last summer)
Xxx
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This resonates with me. I was not prepared for the severity of pain after radiotherapy. I had 3 weeks of treatment and now 3 weeks have passed since my last treatment. I’d say the last week has been the worse pain I’ve experienced, way worse than after my surgery! Whilst I know it’s to be expected I’m really hoping it settles as I’m back to work in a couple of weeks which I’ve already delayed by a couple of weeks due to the pain.
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My radiotherapy was April 2024 and pains had settled by October 2024. Started to flare up at the start of this year again and are now as bad as they were last year.
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Gosh sorry to hear that. Are you taking pain relief?
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Sorry to hear this. Book an appointment with your oncologist… post radiotherapy pain is more common than l thought. It a horrible treatment… high radiation.
Don’t rush back to work.
Xxxxxx thinking of you
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Yes. Unfortunately not making any difference 
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My consultant won’t see me, won’t listen. Won’t even check lump other breast as assumes that is another cyst. Not getting amazing care which is why I thought I would ask opinions here. I’m not great at advocating for myself with hospital.
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What ?
Get a second opinion, see your GP.
Macmillan can do advocacy.
Complete negligence not to listen to you
Can you take a family member or friend with you ? Contact PALS.
Please.
I’m worried about you xxxx
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Thank you. This is really helpful. Very grateful for the support.
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Can you go back to your surgeon? You can’t be left x
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Sadly, he is refusing to see me. Won’t even talk on the phone. I think I will have to get someone to help me change doctor.
Hi lilylou
Thank you for posting.
It is understandable that you have questions about the return of the nerve pain that you experienced after radiotherapy in April last year.
Nerve pain can occur after surgery and radiotherapy and can sometimes last for months or years. Ongoing (chronic) or persistent pain may be caused by damage to the nerves, particularly those in the axilla (underarm). There are different ways of controlling this pain which are described in the link.
Some people benefit from specialist advice so your doctor may refer you to an NHS pain clinic. And some hospitals run pain management programmes.
As this is a new pain, then it is also important to talk to your breast care nurse, treatment team or GP about your symptoms as @shaw1 and @stafford22 suggest. They can review you and offer support to manage the pain including pain relief.
You mention that your consultant has refused to see you or talk to you on the phone. If you have a breast care nurse it may help to contact them and ask them to assess you. They will be able to refer you back to your consultant if required. If you do not have a breast care nurse, then you can ask your GP to review you as @shaw1 suggests. They can assess you and refer you back to the breast clinic if needed.
If you wish to raise a concern about your treatment team you do have a right to make a complaint and may want to contact the Patient Advice and Liaison Service (PALS). You can find your nearest PALS office on the NHS website.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.
For more details about all of these services, please see the information on the link, or call our free helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
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