WUTH (Wirral) saw last year something in the US and did nothing, said it was all normal, however it was not. I returned this year with exact same issue, had US and deemed by radiologist 1 all normal and just getting it signed off, but his other radiologist came and looked, spent far longer, and asked to do a biopsy. Yes, it was Invasive Lobular cancer. A year this has been in my body and has in the least (still awaiting more results ) spread to my skin. I am on letrozole daily, I take DIM and Calcium D Glucarate daily and CBD, Does anyone know what I am likely to face apart from surgery. They have not told me what type of surgery. I am very angry at Wirral University Teaching Hospital for their sloppy medical care and it could have been repeated if the other radiologist had not stepped in. Should I ask for that male radiologist (that was going to send me home) to be sacked?
Hi Drkaren
I can understand your anger. The same thing happened to me. I had two raised bumps on my areola and some scar tissue from a fibroadenoma in the 80s. But my GP referred me just in case, even tho my latest mammogram was clear. I went private, not knowing abut the 2 week NHS promise) and the breast surgeon said I had nothing to worry about. My first ultrasound was clear. I was so grateful to the radiologist. But, just in case, the breast surgeon did biopsies on the little lumps (like freckles). Next consultation I was told I had cancer. I could have a partial mastectomy and hormone therapy or radiotherapy without surgery. I refused to pay the radiologist’s fees!
Another radiologist was painfully thorough and did a sentinel node biopsy. The next week, I had breast cancer that had spread to my nodes. I also had two tumours and skin infiltration, I would probably need the full works, starting with a mastectomy and full axillary clearance. By then, my world was spinning and I just went with the flow. How could I have a clear mammogram and well-advanced cancer, one tumour ductal, the other lobular; one tumour hormone positive, the other triple negative. Greedy? It all depends on the interpretation the radiographer or radiologist put on what they see. I’d been doubly unlucky but saved by a curious GP who’s never seen such freckles before. Those freckles saved my life.
Two years later, still recovering from the effects of chemo, covid arrived. I decided my reddening eyelid didn’t warrant a GP appointment. But it kept spreading and became lumpy so I asked a doctor to look at it. That’s all she did. Look. From 2 metres. She suggested dermatitis. I disagreed. I went to an optician as soon as lockdown was lifted. He suggested a cholesterol blood test and a referral to the eye hospital. My GP practice refused. It took 6 weeks to get a blood test and yes, my cholesterol was soaring - easily sorted. But the redness? The lumps? I had to send them photographs and got a letter from community ophthalmology saying they had to prioritise so no action would be taken. In December, I happened to mention all this to the breast care nurse. Next day, I was with an oncologist. Next month I saw an ophthalmologist. A biopsy showed I had metastatic breast cancer in my eye socket. It was triple negative. So now I’m on chemotherapy again, thanks to my own and the breast care nurse’s efforts, and face an uncertain future. Nobody’s fault. Sh*t happens. But it could have been caught earlier and the discomforts of my eyelid avoided.
Sorry to go on for so long but it has been rejection after rejection, error after error. Even my first MRI in 2020 had picked up a mass around the eye - but they didn’t think it was worth mentioning as they were looking for breast cancer. A year later, with a different brief, they reported it had grown. A whole effing year with untreated secondary cancer , by which time I had skin lesions around my chin and neck and a few suspicious areas inside. I cannot fault oncology. It’s radiology that failed me. It’s terrifying to think that, if your breast cancer doesn’t follow the usual pattern, so much can be missed.
So what can you expect? You have a hormone positive cancer and are already on hormone therapy. That will be for 5 or 10 years, depending on what’s been going on. It may be shrinking your tumour so you can have a partial mastectomy rather than a full one. From my experience, almost certainly you wlll have radiotherapy, the most effective of all the treatments according to my oncologist. I found that a doddle. Others will disagree. You may need chemotherapy. It’s foul but it’s worth it if there has been any spread to the nodes.
You have options. Wirral hospital will have a PALS system (patient liaison) and they can help you put forward a complaint. First, ask your oncologist what difference the delay has made, in case it’s negligible. If it’s significant, PALS will advise you what to expect - disciplinary action, an investigation, dismissal seem unlikely given the nature of the work (my case shows how easily things get missed). You say they haven’t told you what to expect. You should have a breast care nurse. Ring and ask. Or write down all your questions so nothing gets missed at your next consultation. Me? I have phobias and all I cared about was “Will I be sick?” Beyond that, I didn’t care; just let them get on with it. I’m a bit more curious now regarding secondary breast cancer but this time, he doesn’t have the answers as the cancer is so rare. We’re working on trial and error. Surgery and radiotherapy are ruled out so we are just playing with chemo till the right drug comes along. I’m happy to say this chemo is working but I feel sh*t. Heigh ho.
I wish you all the best, both with your treatment and your complaint.
Sorry this is so long! Jan x