Should breast still be painful 8 months after radiotherapy?

[peaceanddove]

I was diagnosed with early breast cancer last February. I didn't need chemotherapy, just had surgery followed by radiotherapy which finished last May. But, my breast is still very often painful and my nipple can feel bruised and very tender. Can radiotherapy cause such long lasting effects?

It's particularly painful in bed when I roll over, it sorts of 'pulls' and really hurts. I'm wondering whether to go back to using a sleep bra, though?

Sorry, no helpful advice (although if I were in your situation I would try & speak to a gp) but I wanted to give this a bump for you.

I am in a similar position OP. Do you get any telephone follow up?
It's hard when everything is at arms length to check things out.

8 years later and still painful 😣

My mother still has pain and can't wear normal bras six years after treatment.
She wears soft crop top kind of bras, without any stitches, buttons or wires.

@Singinginshower

I am in a similar position OP. Do you get any telephone follow up? It's hard when everything is at arms length to check things out.

I go for my first mammogram post-surgery in 2 weeks so will ask the nurses then. How long ago was your radiotherapy?

@Rememberfluffthecat

8 years later and still painful 😣

Oh no. Eight years! Were you told it was normal?

@Cormoran

My mother still has pain and can't wear normal bras six years after treatment. She wears soft crop top kind of bras, without any stitches, buttons or wires.

How awful that it can last years and years! Your poor Mum.

I'm the same 6 years down the line. I thought it was because they'd cut some nerves when I had a lumpectomy and the nerves were knitting together and making my breast sore and over sensitive.

Mammograms are really painful on that side and when I told the nurse my 'theory' she said 'no' it was the radiotherapy that makes it sore and can go on for quite some time.

Thank you. Surely, 6 years is a lot longer than 'some time' in anyone's book? I'm really not looking forward to the mammogram.

Sadly I think doctors are dismissive of the pain. They only warn about the burns and the redness and then use words such as discomfort when the reality is that the tissues are damaged and the pain will persist for some time.

Medical literature exists but doctors will downplay the chronic pain.
More than 50% of women will have pain one year after treatment
sci-hub.se/10.1001/jama.2013.278795
and 2 to 3 years later
pubmed.ncbi.nlm.nih.gov/19903919/

I wish that instead of analysing the ethnicity of the pain, they would dedicate researchers and money to solutions ...
www.ncbi.nlm.nih.gov/pmc/articles/PMC4833552/

Somehow it is worse when you are ignored by doctors so you have to do whatever gives you relief @peaceanddove . When at home - easy in lockdown - my mother now often doesn't have a bra, and some days she opt for her older top as they are softer.

Thank you for those links. Residual pain for months (years) was never once mentioned to me, though much was made of possible burns and redness (never happened).

Oddly, I can wear my usual underwire bras, it's when I take it off and I'm in bed that the pain happens, when I roll over. Perhaps because my boob isn't supported? The nipple is pretty much always slightly tender, and sometimes really stings.

Not sure that regular painkillers would help?

I am not sure about the painkillers. If your pain is such that you need a painkiller, it is absolutely an option, but since the pain is chronic, you should talk with your GP before taking long term painkillers.

Another option is to look at what works for disease induce neuropathy (vs radiotherapy induced neuropathy ) c=since very little has been done.
Diabetes is a good example and a supplement called L-Carnitine (used by bodybuilders) is often successful in reducing neuropathic pain
www.ncbi.nlm.nih.gov/pmc/articles/PMC6498091/
Since it is widely used with no side effects when taken at right dosage (max 1 gr / day) , maybe it is worth a shot.

Spend some time on pubmed to do some research if it is something you feel like doing.

Hi op. My story very similar to yours, diagnosed May last year had right breast lumpectomy and radio( no chemo like you) in June going into July. My breadt hurts all the time, from a dull ache to a sharp, lightening type pain the takes my breath away. My nipple is swollen and tender too. Ive noticed the pain gets much worse the 2 weeks before my period is due( im not on any hormonal contraception) but funnily enough i dont get pain in my good left breast at that time?. I would suggest to always sleep in a soft bra with no wires( this REALLY helps) and my mcmillan nurse said if its really painful you can rub on ibuprofen lotion/ cream. Ive got my first follow up in 2 weeks time too so im going to discuss it then, esp about the fact that my nipple is so swollen. Come back and let us know how you get on.

It's the surgery not the radiotherapy.
One year after surgery my breast still hurt, particularly in bed when I lay on that side. It hurt in an area that wasn't near the original lump. My concerns were dismissed at every appointment as it was considered normal. As pain was my first symptom it did bother me.
I eventually saw the breast surgeon last September who was absolutely lovely. He talked to me in depth about what the surgery involves and why pain persists, which it can for many years. He did examine me and U/S which was good of him as there was no medical need.

One thing he did say was to wear a sports bra 24/7. I have very small breasts so I admit I don't wear a very supportive bra and certainly not at night. I have worn a sports bra since September and that had made a difference I think.

Interesting. I have had a lumpectomy without radiation for a fast growing benign fibroadenoma (I have genetic mutation that carries 60% lifetime risk of cancer, so not taking chances) and I have no pain.

redannie118 that's really useful information thank you, and reassuring to know it's not only me. My nipple is permanently pink and slightly swollen and sometimes feels so bruised that I wince. Also, it doesn't react to cold anymore, does yours?

Skap hello, I recognize you from the cancer threads I didn't realise it was the surgery that caused the pain? Does this mean when I (finally) have the therapeutic reduction surgery on my other boob, that it will be painful too?

I am definitely going to invest in some good sleep bras.

cormoran about 25 years ago I had a large, benign, fibroadenoma removed (from the exact same area where they found lots of DCIS and the few cancer cells, coincidentally) and after the initial soreness, I never had any pain.

@peaceanddove I know it is an area to pay attention too. It had increased vascularisation so they took it out with quite big margins. I have annual MRI but sometimes I wonder if every six months would be better.

Sorry, I didn't mean to worry you. My consultant was actually adamant there was no connection between that fibroadenoma, years ago, and the IDCS they found last year.

A more positive response from me.
My treatment plan sounds similar to yours, and I have never had pain in my breast. Not at the time, and never since (9 years now).
I think you should follow it up.

@peaceanddove I'd rather receive any warning than a late diagnosis since my prognosis would be bad

@peaceanddove my nipple no longer moves at all, no reaction to cold at all, however if its very cold the nipple painfully pulls as if its trying to bevome erect.

Another one here who still has pain several years after radiotherapy. I've mentioned it to my surgeon at follow up appointments, but he couldn't be less interested, and just says 'take paracetamol'. I'm left with no idea whether to expect to be in pain for life, or whether it will recede in time.

Hi everyone. One year on after lumpectomy for DCIS and 5days of radiotherapy. Breast still swollen. Anyone with similiar symptoms. Seeing consultant beginning of May.2022. Thanks xo