I’m 38 years old and have recently been diagnosed with breast cancer. I’m hoping to hear from anyone who has been through something similar because I’m finding the waiting and uncertainty really difficult.
I initially noticed an area of thickening in my breast. My imaging has since shown a suspicious area/tumour measuring around 27–29 mm, which has been biopsied.
My mammogram also showed quite an extensive area of suspicious microcalcifications, around 70–76 mm, extending from the area of the tumour towards the nipple. My consultant has said that she thinks these are most likely DCIS/pre-cancerous changes associated with the cancer, rather than the whole area being invasive cancer.
The calcifications weren’t visible on ultrasound, and as far as I understand they weren’t seen as a corresponding large abnormal area on my MRI either — the MRI showed the approximately 29 mm tumour. My axillary lymph nodes also looked normal on ultrasound (AX1), which I’m trying to hold onto as something positive.
I’ve now had a stereotactic biopsy of the microcalcifications and am waiting for the pathology results. This is the part I’m finding incredibly hard. I keep worrying that they’ll find invasive cancer throughout the calcifications rather than DCIS, and my mind keeps jumping to what that could mean for staging and whether it could have spread.
I’d really love to hear from anyone who had invasive breast cancer alongside a large area of microcalcifications/DCIS, especially anyone around my age.
Did your calcification biopsy turn out to be DCIS? Did they find any small areas of invasion within it? If you had quite extensive calcifications, what treatment or surgery did you eventually have?
I know everyone’s situation is different and nobody can tell me what my pathology will show. I’m really just hoping to speak to women who understand what this waiting period feels like and hear from people who’ve been in a similar position.
We are so sorry that you find your way to us here but please be reassured that you will be met with a lot of kindness and support.
My story isn’t the same as yours, I think you might find that there are as many different stories as there are people here, but after finding a lump, it was initially thought that I might have only DCIS. After 5 biopsies plus a further mammogram on the first visit, and a vacuum-assisted biopsy plus more tests on the next appointment, I was found to have 2cm of Invasive Lobular cancer plus an 8cm area which had DCIS and LCIS. One lymph node was also affected. I have since found that it is not unusual for DCIS/LCIS and invasive cancer to be present together.
BUT, all are treatable. I think we would all agree that you are in the absolute worst time. The waiting. For me, I called it “The Abyss”, when I didn’t know the actual diagnosis or treatment plan, or whether it had spread everywhere and they’d tell me that there wouldn’t even be a treatment plan. It hadn’t and there was.
There is no avoiding the misery of this waiting time. Reading others posts you will see that we all loathed it. Please be very kind to yourself and take whatever support works for you.
And please keep posting. We’ve sadly all been there and we care.
Thank you so much for replying I’m finding it terribly hard as also suffer with health anxiety so this is my worst nightmare. I’m hopeful I’ll feel better once a plan is in place. They’ve said this is treatable but it’s just the unknown at the moment. X
Hi @findingmyway38 my story is similar to yours. I was 38. Unfortunately, at surgery they found that the large area of DCIS had invasive cancer (beyond the original 2cm lump) and they counted the whole thing as the total size of my tumour - 12cm! (not sure this is right tbh). Two lymph nodes were also affected, despite looking good on ultrasound. This was the worst time of my life. I couldn’t eat, sleep, think straight. I was sent for a PET scan, which can back clear. This was 3 years ago. I had a mastectomy, auxiliary clearance, radiotherapy, chemo, followed by target therapy and hormone therapy. So basically, I took everything on offer. None of them was anywhere near as bad as the phase you are currently in - the waiting, the wondering. My quality of life during treatment and now are excellent, and I’m hoping the treatment did its job. Now, I truly hope this is not the case for you, and that your treatment will be more straightforward. But if it is, know you are not alone and you can do it. Sending hugs.
Thank you so much for taking the time to reply and share your story with me. It genuinely means a lot, especially hearing from someone who was the same age as me and had a similar situation.
I’m so sorry you had to go through all of that. I can completely relate to what you said about the waiting and not being able to eat, sleep or think straight — that’s exactly where I am at the moment. My mind keeps jumping to every possible worst-case scenario while I’m waiting for the pathology.
It’s really reassuring to hear that even though your results ended up being more complicated than initially expected, your PET scan was clear, you got through all of the treatment and you’re now three years on with an excellent quality of life. I think I really needed to hear that.
Thank you for reaching out and giving me some hope at such a frightening time. I really hope you continue to stay well and that all your treatment has done exactly what it was meant to do.
So sorry you are joining our club but you are very, very welcome.
I do not have that type of cancer, but I get the uncertainty and the health anxiety. I was absolutely devastated but it becomes easier and it becomes normal. There are so many amazing stories out there.
I’ve had surgery and now chemo. It’s a hell of ride but I’m getting there. The hardest bit for me was the beginning and not knowing. Once you have a plan in place you enter the wonderful world of Oncology and it became really normal.
I’m finding it terribly hard as also suffer with health anxiety so this is my worst nightmare. I’m hopeful I’ll feel better once a plan is in place. They’ve said this is treatable but it’s just the unknown at the moment. X