Lubular Cancer

Saw my Gp on monday, he did a referal letter for a lump, in Bupa, so managed to get apt yesterday, so saw the consultant, who sent me for a mammogram, and ultra sound, he did say I may need a biopsy depending on the findings, this I also had done under ultra sound. He told me that the findings of the mamogram, and ultra sound were not signifcant with normal breast cancer, but there was one that he must have mentioned about four times to me, and also advised me that has I had caught it early I would not need a mastecomy, the cancer is lobular cancer.
I now have to wait for the results of my biopsy, which he advise should be friday this week, and then he will be seeing me on saturday to discuss treatment, but did not want to go into the types of treatment just yet.

I think from what the conusltant as said, it is pointing that way, however my OH is certain that it will be all clear.

I just wanted to know what other people thought, and to see if normally the consultants have a rough idea prior to the results right?

Am very nervous know wiating, it feels like today has lasted about 4 days, and I have 2 more days like this…

Any advise would be appreaciate

thank you

Well doctors are quite good at looking at the scans and diagnosing what sort of lump it is. If they are not sure they usually say something like, unusual tissue that could be benign or may be cancer. Having said that they do get it wrong. there have been posts on here were people were told it was probably cancer and the biopsy came back as benign.

It is also the case that two people can listen to the same conversation and one only hears the negative comments and one only hears the positive ones. So it could be that your husband is being a typical man and sticking his head in the sand, or it could be that as the second pair of ears (that why we take them) he heard everything the doctor said and does not think it is as cut and dried as you do. Are you sure he did not say it did not look like normal breast cancer but there was one area that was a bit suspicious and needed furthur investiagation?? And if it did turn out to be cancer you had caught it early??Not quite as definate as saying you have lobular cancer.

This waiting is the worse bit, you go over and over in you mind what has happened and what might happen and scare yourself to death. you want to talk it all out, over and over again with your partner, and they try to be sympathetic, but eventually you see their eyes glaze over.

Do come back on here and ask more questions, or just moan about how slowly time is going, its a lovely bunch of women (and men) and everyone remembers what those first weeks were like

radiologists generally have an idea whether there is a cancer or not as some lesions look very malignant on mammo and ultra sound so they a fairly certain that it is a cancer and equally some areas look very benign but some areas look indeterminate… they might be benign or they might be cancer… but all areas biopsied may not get the result that is expected if we could identify everything with 100% certainty from the mammo and US we wouldnt need to have biopsies. i work in a breast clinic and we have had instances where the lady has been told its most definitely cancer and it comes back as something else that still need treatment but isnt cancer and likewise there are patients that are told the area is very benign looking but comes back that its cancer.

lobular cancer isnt so common and doesnt show up very well on mammograms or US… so we normally send our lobular ladies for an mri scan as it is more sensitive at picking up lobular changes.

will be keeping my fingers crossed for you

Lulu xx

Thanks for your comments, the gp said it did not show signs of normal breast cancer, as these did not stack up, with normal breast cancer, but the lump and what was showing on the mammogram and US were that something was there, and the position it was indicate it more towards lobular cancer, but having done abit of research on the net, lobular normally hides slightly and is not easily picked up on these tests, but it was the gp who mentioned more than once about lobular cancer, and he also mentioned the fact that on a positive side I would not need a mammogram, as it was caught early enough to be treated, but did not want to discuss any treatment options until the biopsy results came back.

I was hoping that I would have had the phone call today but nothing, and now I know it will be tomorrow, I know I am feeling really anxious like most other women that have been through this.

Whilst I hope that it nothing else, I know it is not a cyst, I have tried to be realistic and read up about it, so if it is that, I know a little bit about the condition, although I have not read about treatments, as I don’t want to scare myself…

Having said all that I keep asking myself, why would he have even mentioned lubular cancer or a masectomy if it was nothing, to be honest I did not except it to go this far, I thought either my gp would say it is nothing to worry about, and then he referred me, and then I expected the consultant to say the same, The whole 24 hours from my gp to the hopital seems like it was someone else going through that and not me…

Thanks again for your comments

i’ve got myself a bit confused here, with what the gp told you and then what the consultant told you.

I would take more notice of what the consultant said, he is the one with more experiance.

Welcome Brooksy. Waiting and worrying is the most awful bit of this whole experience, and once you have a clear diagnosis you will then get a treatment plan and know more of what to expect. It all gets mapped out for you and then all you have to do is turn up to the appointments. Meantime however you have all this nervous energy and nothing to do, can’t just relax. Not even enough leads to go to Dr Google! So, If you have any tedious but useful and preferably physically demanding jobs that need doing - clearing out the loft, writing your christmas cards, polishing the silver, (all of it, LOL!), weeding the entire garden, painting the shed, washing the curtains etc, then now is a good time to do it and it channels that energy to a productive result and if it’s a tiring job so much the better, it will help you sleep. It’s a real shock to take this all in, and “head in the sand” is a perfectly valid short-term coping mechanism. Also there are some jobs better done before surgery so consider if you could bring any of those forward just in case. That should keep you occupied till saturday! Wishing you luck.

Apologies if i am confusing people, my head is in a complete spin
after all week of jumping every time the phone rings, came home from work today, and did 1471 on the house phone, the hospital had phoned me at lunch time today, I rang back and eventually got through to the correct dept, they was phoning me to confirm my apt tomorrow morning at 10.00am, so when I cam off the phone I just burst into tears, as consultant told me he would phone to give me the results, so am now really worried.

Still do not know what it is…

Thanks again for the comments…

I 've just been diagnosed withlobular cancer after a MRI scan confirmed it .They are not as easy to spot from a mammogram because of their structure.The dodgy bit with them is that they can be multifocal.After a second ultrasound today ,mine appears to have two areas so it might have less risk of reoccurence if I had a mastectomy instead of a lumpectomy.
My surgery is on the 19 sept. after my holiday.I think I’ll probably go for the mastectomy but only found out today about the second area so still need to let it sink in .
Try not to worry until you have something to worry about .Easy to say I know ,but it works

Saw consultant this morning, he has confimed it is benign tumor, although on the ultrasound and mamogram, it was a grade 4, but the biopsy revealed it is clear,confirmed that it is FIBROADENOMA, and told me I must be getting younger, as it normally effects teenagers, or young girls in there 20’s, I’m 38, with no children…
Gave me the option, to keep it where it is and monitor me every 6 months, or to have it removed. I have gone for the removal, as I unable to lie in bed on that side, as the lump is uncomfortable.

Thank you all for the comments, and hope eveything goes well for all the other ladies that are using this forum.

Brooksey that is such good news … you must be so relieved now you know exactly what it is and can plan ahead. Good luck x

that is absolutely brilliant, and so encouraging for other people waiting for their results

thank you for your comments, and yes I am relived, although it was a very nerve racking time, as I am sure alot of other people would also agree, who have also been in the same situation.

It is strange, as know I know the true meaning of taking one day at a time. Good luck to everybody else who may be experiencing the same thing, and anybody who is using this forum, I wish you all the best.

And agin thanks for the comments.


hi brooksey, yes it is a terrible time waiting. some people also find that even though they have had the all clear they find themselves not 100% happy and calm. the whole experiance was so traumatic that it takes their minds and bodies a little while to recover. so if you do feel like that sometime in the near future do not worry its normal and it passes.

Not too sure this is the right place to post this but here goes…

Just had my 5 year mammo and it clear so have been discharged from the annual check and mammo I have been having. Coming off arimidex which I was hoping to do. Have been told to be breast aware and have the routine 3 yearly mammo. So far so good. I had lobular 100% ER+ no node involvement rads and arimidex.Saw the same ‘breast lady’ each time-last year she said’in your case I would recommend you have yearly mammo don’t rely on the routine screening programme every 3 years’
This time she said, ‘not worth having more frequently than every 3 years-nhs screening is more thorough than private in that nhs have 2 people looking seperately at mammo,they see far more than any private practice and are therefore more experienced in picking it up’.no reason to doubt perhaps the last two comments but her advice on having the mammo was a complete turnaround from last year.Maybe I’m just old and cynical- but is it down to guidelines re reducing costs/number of patients? I wonder.More consistancy in advice given would make things clearer for those of us in this position I think. I will probably do one every year / 18months for my own peace of mind anyway, but does seem odd.

yes I am old and cynical too. i am sure funding plays a big part in the guidelines

Had lumpectomy yesterday, feel abit dizzy and fuzzy still, now there is another wait for the histology report from the op, which fingers crossed will also be ok, another weeks wait now…
Not sure if this time round should be worried, as I am hoping that both will be the same results!

Just to give an update on my position with a lobular cancer.Mine was removed with a right sided mastectomy on 16th Sept.and insertion of a tissue expander.I had my results last monday and the surgeon said good news ,'we got it all and no evidence in the lymph nodes…some bad news is that because it was a lot bigger than we thought we think you should have chemotherapy and radiotherapy to make sure we get every last cancer cell.
Bu**ar,not what I wanted to hear.I thought the mastectomy would remove the need for rads.,hence the reason I had the immediate TE inserted.
The surgeon suggested that the expander would probably be replaced with the implant before the rads begin.I sure hope he’s right cos I can’t imagine it getting any harder than it feels already and thats before there’s any saline in it.It feels like there’s a folded piece of cardboard in my chest and is most uncomfortable,especially at bedtime.
I have heard that if there’s no evidence in the lymph nodes,cancer can’t travel upwards so the cold cap might be worth a try to avoid losing head hair.Anyone else heard that?
Love and hugs to all

Sorry to hear that you need chemo and rads but good that they are offering you the “belt and braces” approach to getting rid of the cancer.

I have lobular cancer but it is in my lymph nodes so I am having chemo then mx with full axillary clearance then rads then reconstruction. I tried the cold cap but had a very poor result so gave it up after just one attempt. From what I can see on this forum there aren’t many people who get a good result if their chemo drugs include the red “E” drug. But having said that it must be worth having a go.

Good luck with it all caroleog