Hi everyone,
I’m waiting to be seen at the breast clinic. A week to go. This will be my 3rd visit since finishing treatment a year ago for high grade DCIS.
I had a lumpectomy with clear margins followed by 5 sessions radiotherapy. All went ok. Nothing too bad side effects wise.
I have suffered health anxiety for years so naturally this took a toll on my mental health. I obsess over checking my breasts. Manual checks, standing, lying, in the shower, looking at them from every angle etc etc. I had a couple of issues I genuinely was worried about. The breast clinic saw me. First visit went ok. Lovely doctor and I left reassured. 2nd visit the doctor was awful. Dry, dismissive and I felt like I was wasting his time. The consultant radiographer however did an ultrasound as I had just had a clear mammogram and she was so lovely. I left again feeling reassured but upset by the first doctor I saw.
I should say the 2nd visit was in February and was a few weeks after my first annual mammogram. So I should feel reassured but the ultrasound didn’t cover the whole breast, just the area I was concerned with. Mainly a tender spot and the colour of my other nipple.
My new concern is the shape of my breast. My scar is at the top of my breast a few inches above my nipple. But at the bottom outer edge of my breast I see the contour looking less curved. It’s not a dent but it almost looks straighter. I know this probably makes no sense but there is just something that doesn’t look quite right.
The breast care nurse was very apologetic about my encounter with the doctor and said I must never feel afraid to call or book an appointment. I really wish that doctor realised how much I just want to get on with life and the last place I want to be is the breast clinic AGAIN.
Has anyone any advice or can reassure me that my breast just looks different now even though it’s not near my scar. Can the whole breast change? It’s not hardened or anything just the shape is not quite as rounded looking.
Thank you to anyone who has read this far.
Please don’t scare me, my nerves can’t cope!
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@charlie55 Hello there. Your story and timeline sounds very like mine! I had a lumpectomy and axillary clearance in November 2024 and then had 10 sessions of radiotherapy, 5 whole breast and 5 ‘boosts’. I had my 1st mammogram, which was clear, in November last year. Shortly afterwards I noticed some changes in the look and feel of the breast - firmness at the bottom and a slight ‘orange peel’ look etc. I saw the doctor, via the BCN and he said it was radiotherapy changes/side effects of that and surgery, and not to worry. About 2 months ago I developed pain, not severe, more achy, in the rib under the breast, some firmness to the top portion of the breast - my lumpectomy was in the same place as yours - and aching along the left side of the sternum. Back to the surgeon via the BCN. He examined me carefully and said again that it was radiotherapy changes. He ordered a bone scan just to confirm that all was well, which it was. When I went back for the results of the bone scan he told me that it is likely that the changes to the breast following surgery/radiotherapy will be permanent and that the breast won’t go back to looking and feeling as it did before surgery. It’s likely there will always be some firmness, slightly odd shape etc and that these changes may go on happening for several years.
Its hard to know what to worry about and what not to, and even harder to stop worrying. After the last meeting with the doctor I realise that I had been expecting the breast to go back to how it was before which, if you think about it logically, it isnt going to do after being operated on and irradiated!
I hope I haven’t scared you. Hope all goes well next week and that you can overcome some of your anxieties 
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Thanks Pat. No you haven’t scared me. I actually am not bothered if it is just cosmetic changes. I just need to know it’s to be expected and nothing to worry about. Hopefully I’ll be told not to worry too.
You don’t say how big your lump was or how big you bust is but looking at my post op shape (16mm lump on a DD bust) that boob is definitely not as full and rounded at the bottom (my scar points to my armpit). I’m putting it down to having some of its stuffing removed and being lighter.
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I had DCIS in 2 places. One tiny (can’t remember size and one was 22mm. I have 36d bust. I suppose I have to consider this is quite a lot of tissue removed. I think the literature I’ve read talks more about the scar area and not the breast as a whole.
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I had one 4cm lump removed from a 36C breast. They told me that having relatively small breasts can be the cause of the rib pain as there’s less padding so the radiotherapy goes through further. I’m only just realising that the two breasts will never look or feel the same as each other again. In fact they were never the same but did feel the same.
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Hi @charlie55 Have you had your clinic appointment yet? I was wondering how you got on?
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Thank you for thinking of me. I went this morning. All ok thank goodness. The doctor immediately knew what the dimply almost flattened area I was concerned with. It’s a lot down to aging skin and effects of radiotherapy, which can last for life apparently! Coopers ligaments is the medical term.
He was very nice and a million miles from the last doctor. He’s also the head of department so that felt reassuring. He was most importantly a listener and had great empathy.
I had a ultrasound as my mammogram was only late January. It was a bit stressful as I had the radiographer and then the consultant radiographer. They both did very long , thorough checks which worried me. They said they were working with new equipment and taking longer with each scan. The radiographer also looked at the area with me standing. She had a good chat with me and told me she had no concerns but that I should never be worried about coming back if I see changes. She said mammogram and ultrasound are mostly reliable but there are a small number of times things can be missed and that’s why they ask patients to remain vigilant. That worried me a bit but I know why she said it.
She then sent me back to the surgeon for a chat. He talked at length about my diagnosis and helped me reframe things by not focusing on the high grade aspect and more on the ‘its been removed ‘ aspect.
I can’t ask for better than that. So my focus now is moving on whilst remaining vigilant but not allowing it to rule my life
Thanks again for your thoughtfulness.
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@charlie55 that’s such good news, and I’m so pleased you had a positive experience this time. It sounds exactly like what my surgeon said to me. I’m interested to hear about the Coopers ligaments. I googled it and can see that my ‘firmed up, odd area’ is just where these ligaments run. Well we will both have to get used to having one funny shaped breast 
Have a great weekend in the sunshine 
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Thanks Pat. Yeah as long as my breasts behave I’m not too worried if they aren’t quite what they used to be. Let’s be honest, I’m 56, they were never going to look like they used to anyway 
Have a lovely bank holiday weekend too
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