Lobular follow up

Greetings All

I completed my treatment for lobular 10 days ago. (12 months later: chemo, mx, recon, rads and now tam). I’ve had my first annual check up today in the form of a mammogram.

I was wondering what follow-ups anyone else has had. I know that lobular is hard to spot (in my case the first time I went to the docs he felt nothing - 2 weeks later my breast was totally mishapen) and I know that mammos aren’t great for finding it, or particularly good for younger women (42).

When I asked my consultant about this she said that because they’d taken an image of it last year and it was normal they have something to compare it to. This makes sense but I’m not totally convinced.

Also - how come they don’t test/check for secondaries? I had all of these tests at my initial dx ( all fine) but no mention of checking now. I’d have thought that mets are imp to look for.

Any experiences? I’m seeing my consultant in 2 weeks and am going to ask but interested in other’s experiences. If I have to pay I will!

Thanks x


I’m in much the same boat and have absolutely insisted on MRI’s for my other breast going forward. My consultant agrees that lobular is difficult/impossible to see on mammos. I have this expander with a metal port in on my left breast side and this made my first follow up MRI impossible; I’m having it removed fairly soon with the first phase of recon (whole breast fat transfer) and will have an MRI soon after. Lobular has a high contralateral appearance rate, 20%, and we really have to be vigilant. Generally very hard to spot so most peeps with this are well past 65; I was 49. Because of a wonderful, bright woman in the clinic, I was eventually diagnosed with ILC, based entirely on a ‘hunch’ that all was not well when there was nothing to see on the mammo or ultrasound thing. God bless Sharon, I say!

im 6 yrs down the road with lobular ,had mastectomy plus lymphnode removal as the cancer had spread to them ,i have had follow up first every 6 months and now every year ,i dont have any checkup either unless i have any problems (lately a bone scan for nodule on rib ) as it dosnt show on mammograms you have to be vigilant and report any changes however slight to the clinic and usually you will be seeen if you have any concerns ,next week im having what will hopefully be my last checkup at the clinic and to say im relieved is a taken ,apart from having to have a hip replacement because of arimadex and menopause im relatively well even with lymphodemia in arm . so i would say keep checking yourself but dont forget to live too .! good luck .xx

Hello All,

I am in the middle of treatment for ILC, and will be starting chemo in two weeks. With regard to the scans, I was told that I would not have follow up ct and bone scans because the first ones were clear, but if I reported something that needed investigation in the future then they would have a base line to work with from the original scans.

I too, am concerned about the possibility of the cancer coming back in the other breast, and the difficulty in diagnosing it. I wonder if there is anyone who visits this forum who has been in the situation where it has come back in the other breast, and what advice they can give?
Regards, Christine

I hate being gloomy but I’d like to share my experience. I had a mx November 2011 because I’d found a lump in my left breast. It was lobular and I was warned of the increased change of this type of cancer occurring in the other breast. I had a MRI scan before my mx to make sure the right breast was clear. At the time I asked if I should consider having my right breast removed but was told to wait until I’d finished treatment. After surgery, chemo and rads I asked again about risk reducing surgery on my right breast, I had a psychological assessment and my surgeon agreed to do the surgery November 2012. I had a mammogram 2 weeks before surgery and nothing showed up so he did the mastectomy but didn’t look at the lymph nodes. When I went back for my follow up appointment I was told they had found a 13mm diameter tumour in my ‘healthy’ breast so I had to go back for more surgery and have my wound opened up again so he could take a sample of the nodes. Fortunately they are clear so I won’t need more chemo; all that has happened is I’ve changed from anastrozole to exemestane hormone tablets. I know I’m lucky it was found in time but it has really taken all my confidence away. There was nothing at all to show there was a problem with my breast and I’d thought I was being so proactive, having risk reducing surgery for peace of mind and all the time the sneaky b****r was lurking there.