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!
Hi, another lobular lady here. Dx jan 2010, multifocal, multicentric ILC, treatment (mx with ld flap, chemo, tam) finished Aug 2010. Had 1st annual check Jan 2011, had mammogram and insisted on MRI. Had bone scan as I had back ache but clear. Will insist on MRI again, mine were found on US (45 at dx) and I don’t trust mammograms to find lobular. There are no checks for secondaries unless you are symptomatic. My first annual check up was a very thorough prodding up & down to feel neck, armpit, the recon and good side. X
Thanks for that. I’m thinking that I’ll be asking for MRI as well. Very annoying that you have to ask though, you’d think that being as the initial dx tests are different for lobular (ie: having the lot) that the check ups would be automatically different.
It’s never flippin’ ending isn’t it! Glad you’re results were fine. X
Just been DXd with Lobular, so at the begining of my journey. Sister DXd with Lobular in 2009.
I had Mammo and US for palpable lump approx 1cm in Apr 2010 but they saw nothing on either. This oct went for tests again for same lump but bigger. Still did not show on Mammo, but could see on US, so did biopsy. My sisters lump never showed on Mammo either. She is due to go for followup soon and is questioning value of proposed Mammo. Particularly as eveidence Mammos can cause cancer in younger women.
And from the posts I have read this seems a common concern amongst Lobular Ladies. In some areas High risk women are given MRIs but seems to be postcode lottery.
I was told that an MRI (with contrast) was the only real way to pick up lobular cancer when it’s small. I don’t know if that is true or not.
I opted to have my other breast removed as I had not been able to feel any thickening until the cancer was quite advanced. If I hadn’t, then the surgeon told me I would have had 2 yearly MRIs.
I don’t know how much that would be to pay privately,I’d say definitely over £500. Not every hospital has the facility to do this either. You could always ring something like BUPA or whatever private facilities you have locally to check the cost.
I suggest that you ring the helpline and talk it through with them. They might also be able to advise on the best way to approach this with your Consultant.
In terms of secondaries, there really isn’t any specific check they can do. Scans are only a snapshot in time and you don’t want to keep being scanned all the time because of the radiation. Blood markers that are used by some consultants are notoriously unreliable and can cause huge amounts of anxiety - it seems they are more often used to see if chemo is working rather than as a diagnostic tool.
I think we just have to try and get on with our lives, report anything that seems unusual but not spend all our time thinking about cancer. A lot easier said than done I know.
Breast Cancer Care have produced an information booklet on Lobular breast cancer which you find useful to read. It describes what invasive lobular breast cancer is, how it is diagnosed and how it is treated.
If you would like to order a copy or read this on line just follow this link:-
My consultant said that in the follow up scenario, mammogram is the “Gold Standard” and I had to push him for the MRI even though I am having treatment privately. The MRI was done at the regional hospital as like Elinda said it required special equipment. I was never offered the option at the beginning to have a bi lateral mx, with hindsight, I would have probably gone with it, my onc has said he would support me if I wanted to have the other one taken off as being ILC and multifocal are two significant risk factors for contralateral bc. But Elinda, I agree, trying hard to move on and not letting bc cast an everpresent shadow is the way to go and although its tough, it will probably come over time. My onc said that rarely mets are discovered by accident. Most women present in follow up with symptoms which are then investigated. The basic outcome remains the same and there is no reliable way to screen everyone for mets if they are asymptomatic. Lobular mets can apprear in stomach, GI tract, peritoneum and ovary so beware of that.
Hope you get on ok with your appointment. x