Lobular Questions

Public Archive
1

Good morning everyone.

I hardly post on here now but still visit and read.

 

(I was diagnosed a year ago in December, grade 2 IDC and have now had my first anniversary mammogram).

 

A lot of people when diagnosed with lobular say, it’s not picked up on a mammogram, or by ultrasound.  So how is it diagnosed in the first place?  What indicates to the professionals that you may have it (if say you have a clear mammogram) - why would they do further tests?  Are there specific symptoms to lobular?

 

I thought I should worry myself about something else … aarrgghhh!

 

Happy New Year to all!

 

Seren x

 

 

2

No idea I’m afraid but thought I’d say hi. How were you diagnosed in the 1st place.

Perhaps ask on the nurses forum?

Happy anniversary ? you made me chuckle with you worrying about something else…human nature x

3

Hi Seren,

I’m coming up for my first anniversary mammo as well.

When I was diagnosed last Feb, the biopsy showed a small area of lobular but mainly ductal bc, therefore it was the biopsy that detected it.

I then had an MRI scan to double check it all, in case any further lobular bc was there that had not been detected. My MRI was clear.  As it turned out, the diagnosis was confirmed as invasive ductile bc on the post surgery results.

Presumably, your biopsy & post surgery results did not show lobular, therefore it was not necessary to do an MRI, but do check with your team or the nurses here if you feel you need further clarification.

ann x

 

 

4

Hi seren, I have lobular cancer and I found it myself. The lump didn’t feel hard but felt like a thickening if you know what I mean … the lump felt as though it was muscle but I knew it wasn’t supposed to be there … with lobular it is standard procedure to have an MRI scan and it was found that I had a tiny lump behind the main lump too … I didn’t bother with a biopsy on the smaller lump as I had decided to have a mastectomy at this point … hope this helps as you sound as though you are worried that you may have it and it would never be picked up on which wasn’t the case with me … Sarah xxx

5

Hi

 

That is kinda correct, i had ductal carcinmona on my left breast, but was diagnosed with lobular carcinoma right breast. BUT i found the lump. when i went to the surgeon, he couldnt at first find it.

But it can be found via ultra sound. In my case he underwent a needle biopsy to get a correct diagnosis.

 

In my case the surgeon managed to removed it and showed a clear margin. I did not need any more treatment.

 

So never be afraid to ask more questions,ask for an ultrasound or ask if they are planning on doing a needle biopsy.

 

Hear if you need to talk more

 

Best wishes

 

Aly

6

Hi Seren, I had invasive lobular cancer, and yes, the mammogram was negative and the ultrasound inconclusive. I had a suspicion, so I pushed for a biopsy - they took three samples and they came back positive. The ILC was 4cm. Grade 2, Stage 2. I was lucky, my lymph nodes were clear. One mastectomy later and I am now ostensibly cancer free, although just to be on the safe side, I am having a contralateral mastectomy when I do the reconstruction next month. I, like you, don’t altogether trust mammograms any more.

 

The symptoms which took me to the docs in the first place were as a result of my general need to keep informed and to find out what to look out for. I noticed a small dimple to the left of my nipple when I raised my arm, and when I leaned forwards with no bra on, I noticed that my left nipple started pointing West instead of straight forward like the other one! 

 

I have had benign breast lumps all my adult life, fibroadenomae, and have been backwards and forwards having mammograms and examinations. This time, I had a fibrous lump which was growing, very slowly, but this wasn’t the tumour. The tumour was underneath it. They had told me that the fibroadenoma would go away in time but that if it didn’t, I should go back to get it checked. So those three symptoms made me start the process.

 

It would have been easy to accept the negative mammogram and go back home having considered myself reassured. But I kind of knew, I trusted my gut feeling and asked for the only really reliable diagnostic tool, the biopsy. I truly believe that by doing that, I probably saved myself from an early death. Scans are all very well, but they do miss about 10% of breast cancers. If you think something is not right, it probably isn’t. It did show up very clearly on the MRI scan, but as you know they’re expensive and they don’t do them without good reason on the NHS. I was already diagnosed by the time I got that.

 

Also you shouldn’t worry about wasting the doctors’ time, they will be as pleased as you if there is really nothing there. From my experience, I would say, the mammogram will give you a good indication. But if you have other symptoms - any kind of change in shape or feel or skin texture at all - go and get it checked out.

 

Luckily, you are in the system now anyway so you should definitely get a response if you raise a question or an anxiety about a symptom. Worrying doesn’t do anything, but taking action does!  

 

 

7

Helloooo.

 

yes, I too was missed in 2000, I went with a kind of dimple crease in my boob. They did eventually do an ultrasond which didnt pick anythng up…and sent me away.

 

the following year, I found a hard lump in my boob, went back and the mammo showed nothing, but they biopsied the tumour and some of it was neg…some lobular bc. Changed hospitals then!

 

Had pre mastec chemo to see if it would tackle it…was monitored by u/s…think the Marsden had become very adept at it…tumour was 7x8 cms…these days they can see it on u/s apparently. It is also very visible on mri, which is how im monitored.

 

it doesnt show up on mammos as it is fatty tissue and has no calcium in it apparently.

 

hugs, Moijanxx

8

hi all i too was diagnosed with grade 2 lobular i kept feeling drained like the flu without the cold i noticed my boobs kept swelling and hurt and i thought i was menopausal im 47 just i then had a hard lump come up in my right breast at the side had a mammo and us an biopsy which came back as grade 2 lobular carcinoma ive just had my mri results back and theres 4 lumps 3 grouped together and 1 about a inch and a half away they also found a 3mm one in my other breast but there not sure what that is ive been booked in for a lumpectomy and node removal but im not feeling it i would feel safer with it removed my dr has said it may not be my only surgery depending on the find with the lumpectomy plus im unsure i want to wait for the other breast to just sit there with a possible cancerous lump in that i feel a bit confused as to why its a lumpectomy not a mastectomy anyone else been given a lumpectomy and then had to go threw surgery again ? or asked for a mastectomy in the first place ? thanks in advance ??