Secondary diagnosis 10 years after primary diagnosis/mastectomy?

Hello, I’m new to forums, but I wanted to reach out to see if there is anyone in a similar situation. I had primary breast cancer in 2014 with a diagnosis of high grade DCIS and Paget’s disease
. I had a lumpectomy and was scheduled for radiotherapy, but the oncologist refused to do the radiotherapy as a radiation through were my nipple area, is a direct hit to my heart causing potential heart issues later in life ( I was 39). So long story short, I ended up having a mastectomy and immediate DIEP reconstruction. Everything was fine, I had ‘future proofed’ myself and got on with my life. Annual mammograms completed on the right side were good. Then in October 2023 I ran my thumb up my neck (mastectomy side) and came across a lump, I put it down to the Covid jab, but something didn’t sit right. I went to the doctors and fast forward to now, I have Her2+ metastatic breast cancer in the armpit, across the chest and collar bone and up to the top of my neck. I have completed 6 rounds of Docetaxol with carboplatin, and on 3 weekly Phesgo injections. Next week I start radiotherapy.
Has anyone a similar experience? Secondaries after a mastectomy? It’s hard to fathom having breast cancer with no breast. Thank you, hope everyone is well.

Oh it happens and I’m so, so sorry it happened to you. However, is it considered a new diagnosis or were you HER2+ the first time around also? I will say though that either way the medication for metastatic breast cancer is fantastic now. HER2+ has immunotherapy and it sounds like you’re on it and so many people are living long lives because of it. We have many promising things in the pipeline also. I’m sure more people will chime in who have experienced what you have but I know you’re not alone. It happens way more often than any of us like which is why so many of us want more funds to go towards a cure for stage 4.

Hi Kay, thank you for this this. I believe it’s a different diagnosis and am confident they got all the cancer the first time around, but it appears that breast cells were left. I am lucky to be on the right treatment and your reply gives me hope for the future. Thank you x

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Unfortunately breast cells are always left after a mastectomy. They can’t get everything although of course the skill of the surgeon matters so that as much is gotten as possible. I’m so sorry you had another primary that spread before you realized it. But again, medications are now astounding. There is true hope that this can simply be managed for the rest of your long life. May you continue to respond well to your treatments!!

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