Sorry for the long story. Around Christmas time I noticed an area of skin on my left breast that felt like a bumpy rash. I thought it was dry skin and ignored it. A few weeks later I noticed a bit of dent below the rash. I ignored it. In January I had my routine mammogram which was clear. (I’m 52)
Easter weekend I noticed my left breast was bleeding. I got in with the gp who referred me to the breast clinic. 3 weeks later I was examined by the nurse and had an ultrasound which was clear. She told me there was no evidence of anything but I would see the consultant who would probably look to remove the duct.
I saw the consultant on Monday who said the same as the nurse until he examined me. His face dropped and he starts explaining to me about Pagets disease and wants to do a biopsy from my nipple. He then tells me my nipples are different colours (who knew. Not me)
He went on to explain that I am now on the cancer pathway and what surgery he does will depend on the biopsy results.
I’m confused how my mammograms and ultrasound can be clear but I’m now on the cancer pathway. Does that mean I have cancer? Surely they need the biopsy results before they can diagnose? I’m so confused but as soon as shock I didn’t ask any questions.
I don’t expect answers here I just need to get this out of my head.
Hello there - sorry that you’re in this situation . I would try asking the Nurses for this one - either on the phone tomorrow morning ( they’re open 9-1 ) or in the Ask The Nurses section but they would probably not be able to answer until after the weekend . You could also put out another post with Pagets disease in the title which might attract answers from others who have been diagnosed with Pagets or know more about it as I’m not very clear on it myself but I think it presents quite differently from ductal . After the weekend you could also contact your BCN if you have contact details for them as after your Consultation they may be able to give you more information as well . Xx
Hi there, sorry to hear you’re having to deal with this. If they suspect it’s possibly cancer, you will be seen on the cancer pathway - to make sure you get tests done quickly. The diagnosis as you say would be from biopsy results. I had suspected Pagets, which turned out to be a pre-cancerous skin condition, possibly as a result of my radiotherapy! Was treated easily. Also, I understand that Pagets can be detected by MRI scan - might be worth pushing for one, especially if mammograms failed to detect it. Hang in there, make sure you ask questions when you go back - and good luck!
I relate to this. I too had similar symptoms to you and like you, it wasn’t getting picked up on the mammogram. They saw something on the ultrasound that alerted them to do biopsies. I too had a scab on my nipple and it was sinking in to the breast.
It feels like mixed messaging, but I think that’s because it can be really hard for traditional scans to tell an accurate story. Scans may miss cancer activity because the cancer cells are too small, or the scans can see what it thinks is cancer activity when in fact it is not. The most accurate way to tell is to do biopsy. In order to do this, I’m guessing they have to put you on the cancer pathway, even if the results turn out to be negative.
This is the worst time, waiting for news, but be reassured you are in the best possible hands and whatever the outcome for you, they will be on it like a ton of hot bricks, and they are thorough.
I hope everything turns out ok for you, do keep us posted won’t you? x
I saw the consultant yesterday. The biopsy for Pagets was negative. I’m now pencilled in for total duct removal on 23rd July. This will be diagnostic and therapeutic. Hopefully they will prove to be negative as well.
I hope your surgery goes well. I was wondering if anyone can help. I went to GP for a very small lump on right upper armpit. While examining me she found two lumps on my right breast. So did a 2ww referral. I had my NHS breast cancer clinic appointment today. They did an ultrasound just on my right breast and armpit and all she said was I can’t see any lumps, you will be called for an examination. So then went in for an examination, she said she couldn’t feel the armpit one even though it is there and I felt it as the scan went over it. Then she didn’t say about the other two lumps other than I have dense lumpy breasts and no concerns. I didn’t leave feeling reassured. It just felt rushed. And all I feel now is that I have lumpy breasts but I know one of the lumps on my right breast has got bigger. I just feel like I’ve wasted their time but the GP found these lumps and wanted them testing. Do you think it is worth a second opinion. I have family history of ovarian and breast cancer. In 37 and on HRT following total hysterectomy. Sorry for the essay and thanks in advance
If you are unsure, then use your right to a second opinion. Based on what you’ve been told so far, you probably have nothing to worry about, but for the sake of peace of mind then it is worth doing. And do not feel you are wasting peoples time…better to be safe than sorry and no medical professional worth their salt would argue with that. Good luck and here’s hoping all is ok. x
