Hello All, I am new to this group and am currently in the anger stage of my diagnosis. On August 8th of this year I was diagnosed with invasive lobular cancer. After the first surgery, a lumpectomy and the path report it has been discovered that my tumor is 5 cm and multi centric/focal. They did not get it all so I opted for a mastectomy. The final report is a 6 cm tumor. The reason I’m soooo angry is because I have spent the last 14 years getting a mammogram at the same place every summer so that they would have a history of my images as I have dense breasts. I simply can not wrap my mind around how they missed this. I finally discovered it myself visually when I noticed in the bathroom mirror that the skin under my breast was dimpled. Has anybody else had an experience where the tumor was this large and not found on a mammogram?
Hello Jules ,welcome to the forum .Lobular breast cancer is usually hard to see on a mammogram and very often only diagnosed by MRI scan following changes noticed by the person concerned - so it was very possibly not visible at all on your mammograms Lobular BC also tends to measure larger than other types of breast cancer due to its shape .There are quite a few ladies on the forum who have had similar to yourself - if you put Lobular into the search box you should bring up some useful threads .Best wishes .Jill x
Hi
I have lobular, I’m too young for screening but found a hard it of breast. Mastectomy showed lobular, 40mm the bit I could feel, and another bit which would make it 80mm in total, but it could be a different focus. Had MRI to check other breast and 40mm tumour there as well that no-one can feel! So going for further mastectomy in 2 weeks. Mine didn’t show up well on mammogram or ultrasound, hence the MRI.
Lobular cancers tend not to show up so well on mammograms, and also aren’t as obviously a ‘breast lump’ as ductal tend to be. They also tend to be bigger, as they grow more as a sheet than a blob. But they don’t spread as much.
All the best for treatment
Hi Jules. I was lobular too. Originally thought to be 2cm but ended up as 4. Discovered dimpling and then a lump 8 months after my first all clear mammogram. As the others have said it is far less detectable than ductal and although the tumor may sound big it’s often tentacle-like rather than a solid lump so covers a larger area of the breast. As you are discovering it makes the treatment path more drawn out which can be challenging and upsetting. I am now almost three years on from active treatment and feeling good. You will get there. Stick around here as there are plenty of women who have gone through similar experiences and will be happy to give support. Look after yourself. Xx
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Hi, I was also diagnosed in August with Invasive Lobular BC…was told I would need a chemo/lumpectomy and radiotherapy,however after having my MRI the cancer had spread 5 cms in spiculations from the main tumour which wasnt detected on the mammogram or ultra sound and I now have to have a mastectomy!
I was just about getting my head around having a WLE so when I received the 2nd diagnosis I was totally shocked to say the least! ???
Hi,
I was diagnosed in January with lobular cancer which measured 11cms. I’d been referred in 2016 because I felt changes but was only scanned and so it didn’t show and was missed. It showed on my mammogram in October 2017, which wasn’t acted on (I still have an ongoing complaint about this). When I was eventually called back I was scanned again and verbally told everything looked fine. I told the dr to look at me and not her screen. She then took biopsies which 13 days later confirmed the cancer, 22 months after I 1st got my GP to refer me. It had spread to my lymph nodes by then but thankfully, no further.
I too have invasive lobular cancer which was detected on my routine first mammogram so I got a recall. Having a mastectomy on 23rd November…I was told last week it would be within two weeks so I’m so upset it’s basically a month away I’ve been in tears all afternoon… I’m having immediate reconstruction and no idea as yet about further treatment . Good luck with yours x
Hi Lynn,
Glad you found us.
Not surprised you feel the way you do, getting a diagnosis is a huge shock & then surgery will be later than you originally thought.
It will get sorted out & as ever, the early days of diagnosis are so difficult as the treatment plan is not in place & the uncertainty sends the mind all over the place, but it does get better when you know where you’re going with it all.
Although it certainly doesn’t feel like it, but thank goodness you were recalled, as it would not have gone away & it can now be dealt with.
My bc was detected by mammo & now, I’m very glad it was, as I had no idea.
Sending hugs
ann x