Hi, I was diagnosed two weeks ago with IDC, 13mm, grade 2, hormone receptive, HER2 -, after finding a lump. Breast team have been outstanding. The less my head is spinning the more I am thinking about how I presented at the breast clinic two and a half years ago and was told I was fine and nothing to worry about. I’d noticed, back then, a tethering of the skin when I lifted my arm up, and presented at the clinic with that and ongoing clear discharge/crusty nipple. I appreciate that the radiologist at the time had a good look and couldn’t find anything, however telling me I was fine and to just return to the gp if the discharge ever became bloody, and not telling me I should keep a close eye/that because I have dense tissue I’m at increased risk, meant I’ve spent all this time looking at the skin change and being happy it was not a problem. What I could’ve been doing was monitoring it and checking the area for the lump which I would then have found quite a lot earlier, probably before it became invasive.
Sorry for the rambled explanation. I wondered if anyone had any similar experience. I just can’t believe I’ve just let the cancer progress happily while I saw the issue in the mirror regularly because I was told with a smile not to worry. Now it’s invasive and although lymph nodes look clear on ultrasound I’m waiting for the op to confirm this - this should’ve been a very different story.
I’d also like to wish everyone well in their journeys, I’ve been reading posts and it’s been so helpful xxx
Despite a lot of cancers, and even small dcis areas, getting spotted on mammograms, there are still some tumours that remain hard to spot. Not all have typical calcification patterns. I’m lucky in having had a slow growing grade 1, however, wonder if its that slow growing, how come I found the lump in between my mammograms? It could well have been there 2.5 years before as dcis, if not a IDC yet. My mother got told that, with hindsight looking back at her previous scans, there were signs on her mammogram 3 years prior. Things can get missed, it can come down to human error or just not being an obvious view. That’s why physically checking remains so important.
It seems shocking though that your classic symptoms were not taken into more accout, and it shows that it can be a big mistake for health professionals to solely rely on scans where there are such physical symptoms as you had. Under the circumstances, if they could not see an area to biopsy at the time, you’d at least think that they would monitor it by 6month or yearly scans - ultrasound in cases of dense breast tissue I believe is the way to go, and it carries no prohibative radiation risk so can be done as often as needed.
I think it is up to you how far you want to take investigation of this, as it seems counter to what is usually told, to get on with life and continue with the symptoms you had until they get worse. There might be some recourse you could have. At the moment, you are on an emotional journey, so you might want to get to the end of your current treatment pathway, before looking into what happened more. However, it would not be unreasonable to seek legal advice, or at least take it to PALS, perhaps. As much to prevent the situation being repeated for others. Its up to you if you do or don’t want to consider taking this on in future, whatever is best for you and your mental well-being arount this is what counts. If you find that your experience has added to your distress meantime- and I can fully understand that it could - some counselling support for you around it might help.
I hope despite what has occurred, you have as smoth a treatment path as possible from now on and it all turns out ok in ithe end for you.
So sorry to read your post, I haven’t been in this position, however have had breast cancer twice.
I would like to wish you well going forward, fingers crossed for good results of your Lymph Nodes.
Once you have your results, maybe a chat with your teams to get a treatment plan together.
Please keep posting to let us know how you’re getting on. In the meantime be kind to yourself. We have all been there now we are here for you with love and support.
This post really made me reflect on my situation . I have a huge amount of anxiety about things being missed. In 2023 I was investigated due to discharge and tenderness on my left breast breast. I had a normal mammogram , normal MRI and normal ultrasound ( all on both breasts) and a duct excision that revealed a benign papilloma.Because I am quite am anxious person I went back 12 weeks after my MRI to check everything was healing from the excision. It was then discovered I had 12mm idc and 20 mm dcis (er+,her2 negative ,grade 2). It is so hard for me to trust any tests or reassurance now. Any advice on how to manage this would be hugely appreciated. I have never understood how nothing came up on the original MRI
