Im currently on chemo for what I was led to believe was IDC but I went to the hospital today to see the onc about vein sclerosis and noted when she had my file open that it said Lobular cancer. I was totally surprised, not because I thought it any worse but just the fact that it was lobular and not ductal. To be honest I don’t know much about it. Is it common? I asked the onc about the treatment and she basically said treatment is the same. I just wondered if anyone with this type has any more info they could share.
Theres quite a few of us with Lobular although it’s not as common.
Yes treatment is the same and any detailed info can be found in the glossary.
Onc said that if I’d got to get cancer this is the one to get!!! treatment is the same. There is loads on the internet but you will find it conflicting. Hope this helped
Can i just ask by your onc saying that lobular was the one to get was she implying that this was in any way better to treat.just wondered as I have had lobular.say had i had mast with reconn last may.
I tend not to ask too many questions at clinic, i am working on the thread that if they dont seem worried …i wont ask anything in case its tooo much info
Another lobular lady here.
From what I understand lubular is a little harder to detect being less likely to show as a lump, and a slight increased risk of recurrence in the other breast. It is less common - only affects 10 -15% of us - so definitely a rather select group !
Hi, I too have lobular cancer, grade 3, triple negative.
I wasn’t aware that it was any different re treatment, severity etc than ductal breast cancer?
Debbie. xx
Thanks very much for your info. I’m picking up that the treatment is the same but I’ve just been reading that it isn’t picked up very well on mammograms so I’m pleased that mine was
Your right Magsi about it being a select group with only 10-15% :-))
Mine was picked up two mammogramms ago and because it was 'tiny 5mm and not growing it was left!! I wasn’t told about this until this last mammogram - and only because it had started to grow. Sooooo in a way I’m grateful they have picked it up of course but I would have liked to have been told. 6 years ago I was doing aid work and could easily have not kept up with mammogramms etc.
Mine was abit of a devil to locate hence wire etc but they didn’t get a good clearance from chest wall… would they have done if they’d gone in soon - who knows too late now - those ‘little grey cells’ Sorry too much daytime T.V) might be roaming around looking for somewhere to nest as we speak.
Sorry Truffle cannot recall your question!!! keep doing that lately will return shortly Steph
O.K Truffle got ya - My ONC gave me the impression it was LESS likely to come back … but guess by now you know we all have conflicting advice. Have a good weekend girls and don’t go overdoing it or you’ll suffer on Monday.
From reading up on this as others have said lobular accounts for 15-20% of bc but doesnt mean it is rare - it is the 2nd most common type. Invasive ductal is the most common one accounting for 70% but thought to have less positive prognosis, whilst lobular although being harder to detect does generally have a better prognosis. The trouble with lobular is that it is harder to detect with mammogram. Ultrasound is often more effective. It is also often found to be larger than when first discovered. I had two lobular tumours. The first one was very difficult to detect and the second one was found on mammogram but only when it was quite large (7cm).
They are not generally firm lumps, but more of a mass - I know mine were quite irregular in shape. The information on
I was diagnosed with lobular cancer just over a year ago. Although I was too young to be in the routine mammogram programme I was told that it is very difficult to detect via mammogram and that an MRI with contrast is the best way to see it. I had a mammogram of both breasts as a result - one showed no signs of cancer. I was told that following mastectomy I would be offered 2 yearly MRI of breast without cancer.
take care
Elinda x
I had two very small areas 9mm and 11mm, picked up on ultrasound after I had a mammogram to look at a cyst that I had found.
This was over two years ago. Following discussions with the consultant I now have an ultrasound after the yearly mammogram, which I find very reassuring, something that you might like to ask about in the future.
Thanks Magsi. I’m not sure what will happen. I’ve already had a mastectomy and because I’ve had two breast cancers now I’m having a prophylactic mastectomy later this year and mammograms wont be appropriate but I’m wondering what the after care is??? Do I just have to keep an eye out for anything abnormal or will I have scans. I’m just not sure.
Yes i too had a lobular cancer, which wasn’t picked up on the mammagram, I had a cancer in the ducts and that lump showed up, but after the and the pathology results, it had also spread into the lobes,
I finished chemo nearly three weeks ago and will soon be starting radiotherapy plus tamoxifen.
My first year check will be in september, i have voiced my concerns to the oncologist and my BCN, andthey said they can do an ultrasound to, I will make sure they do!!
Thanks for your info. I’m definitely going to ask about scans because it is a bit worrying wondering what to look for and expect when we aren’t in the system having regular mammograms.
Another lobular lady here! I was dx Feb 08 and it wasnt picked up by a routine mammogram 15 months before by which time it had travelled to 6 lymph nodes. I was Grade 2 and also HER2, so I am very rare!!! I think. I have not been offered ultrasound and only had a mammogram on the other breast last month two years after dx. I have had no check ups. It seems that despite being in lymph nodes they do not think I am high risk. I have heard of others being checked every few months.
Lobular is also generally usually Grade 2 I think.
My biopsies cameback grade 1, once they did the operation the pathology report came back a grade 2,
Prior to that they never mentioned a possibility of it being lobular as well,
it is scary to think it can go undetected, because from whatI have read their is a slightly higher chance of recurrance with a lobular, mine was initially in the ducts behind the nipple, and on my first examination they couldn’t feel a lump and thought it was hormonal, i insisted on being referred and thank goodness i did, it apparantly had spread out into the lobes,
All trusts should offer an ultrasound on all checkups, as a precaution,
Hello lobular ladies. I too was diagnosed with lobular/invasive ductal carcinoma in a mixed 1cm tumour, which was found on routine mammogram. Initailly I was told I would have an MRI to check both breasts but then was rung at home to say that I wouldn’t need it as my mammo was clear enough after all. When I queried the procedure for keeping an eye on this during future check-ups I was told that I would continue with mammos only, UNLESS anything unusual showed up and then I would be scanned.
The onco also told me that younger women have much denser breast tissue and its harder to spot but for us older ones it doesn’t present such a problem. Must say I didn’t realise that the prognosis was better with lobular, I’d assumed being slightly rarer it was worse!
