I’m having another go to ask BCC if it’s possible to have a separate category for “Lobular Breast Cancer”. I’ve been asking for a few years now - but to date no luck. It seems to me there are quite a lot of us lobular ladies using the website. A separate thread would be much more helpful and easier to find.
Thank you.
Jeannie
I’m with you on this, Jeannie as I’m a lobular lady too. From what I can gather, lobular cancers are often larger at diagnosis because they tend to ‘hide’ and not show up so well on mammograms, so there could be many of us who were not diagnosed until our cancers were of significant size. It would be very helpful if we had our own category to compare notes and offer or receive support.
Carol
Dear Carol
I was four years misdiagnosed with invasive lobular breast cancer despite asking for a mammogram on each occasion (3 times over a four year period) and showing anxiety about my symptoms - swelling, thickening and lumps under my right armpit. I was told my symptoms were nothing to worry about (remains of a viral infection)and I was not eligible for a mammogram as I was under 50. Some GPs are getting it seriously wrong and some guidelines do not even mention these symptoms as something to refer - the Scottish Referral Guidelines do because I campaigned for this ever since being diagnosed. Whilst it’s great to see so much publicity about breast awareness, it’s of no benefit if the GPs are not up-to-date with their knowledge on breast cancer and are not prepared to send you for further investigation.
In my opinion, and I’m sure others will agree, a separate heading for lobular would be a start in making it easier to find out how others are being treated. The profile of lobular needs to be raised. GPs etc need to be aware that people do not need to have a “so-called” lump to have breast cancer. My symptoms of lobular were very typical and could have been picked up much earlier had my GPs listened to my anxiety, were better trained in BC and didn’t use the age of 50 as a barrier.
What has happened cannot be reversed but I do want to do everything in my power to make sure no other women suffer the way I have.
I hope BCC listen.
Thanks for your support.
Jeannie
I am going to disagree with a seperate forum for lobular cancer. We have so many forums and i think if you have seperate ones for ductal and lobular its 2 more too add to them.
I was Dx in 2005 and have found the information on the fact sheet BCC produces and other ladies who have written about lobular in many of these threads to be sufficient for me.
The only thread i think which should be added is one for triple neg BC as we have one on hormone treatments and i know through having friends who are triple neg its scary not being able to have the added help of hormone treatment to ward off the cancer returning.
I do agree strongly though that lobular cancer goes undetected and mine certaintly was. If i had believed my first GP i could well be dead now from secondaries. Thank God for the Asda magazine which had an article on BC for the Oct BC awareness month. I knew my symptoms were something to worry about.
However even the mammograms didnt show up my cancer and ultra sound showed lump to be far smaller.
I keep asking for a MRI on other breast and have been told only if i have a lump, which is ridiculous.
Take Care
Rx
Dear Liverbird
One of my main reasons for asking for a separate heading is to save me trawling the site looking for lobular information - it simplifies my searches.
At the last appointment with my oncologist I asked if I could have a MRI on my other breast. He said “No” and gave me a mammogram. He also said getting BC in my other breast was the least of my worries. I didn’t feel I wanted to take his answer any further. However, I think he was referring to the fact that I was stage 3b when diagnosed and had cancer in 15 out of 19 lymph glands.
Wishing you well.
Jeannie
i think BCC will take account of everything that is said on here… or send it in as idea?
i had lobular invasive cancer, as did my sis the year before. i have no confidence in mammograms or ultrasound because it showed nothing. i accept that MRIs cannot be done routinely for cost reasons, mainly because i believe other cancers should have this profile - colons, bowels etc… possible links to BC. my dad died of colon cancer - late diagnosis but he was 77 then and i wonder if being old means u don’t count?
within 4 weeks of me noticing a v tiny change in nipple i ended up on this treadmill but i do not believe that we should be treated over and above other cancers… it is all cancer.
i hope that you take this post in the way it is meant - not having a go at all
take care
j
im also a lobular lady ,and i had to fight for a follow up appointment as the clinic said no cancer in breast despite me having changes in size ans orange peel skin and severe pain ,had fine needle asp ans even then it was onlt through me sasking to be refered back that i had core biopsy,and was found to have cancer and 12lymph node invovlement ,after surgery was told that the cancer was 6 cm that was after chemo to shrink the tumor .there does seem to be a lot of ladies that are misdiognosed ,and early detection would maybe have saved the breast of some of them . my hospital do not automatically do both sides even when reacurrance is possible .i am now having regular ctscans on my liver which shows spots .so wish all going through this well . lynn x
I’m a bit torn about which new categories shuld be added, which perhaps not. But the US website breastcancer.org has a really interesting list of categories…very comprehensive and I think BCC could do worse than copying that. (includes a section on lobular, one on triple negs, one on palliative care, one for Afro-Americans, one for lesbians…interesting.)
Jane
I think women with lobular cancer should be offered yearly MRI SCANS AS STANDARD FOLLOW-UP. If I ask my consultant will this happen and he says “no unless there’s a lump” I intend to ask for a double mastectomy. Either that or pay yearly for an MRI. My lobular tumour did not show up on the mammogram at all.
When I get throught treatment I also intend to pay for private MRIs. Once I noticed inverted nipple I was referred immediately so cannot complain at that. But mammogram August 06 found nothing then by Dec 07 two large tumours in right breast both lobular. Asked onc about this and she said well they can grow quick. I am also HER2. I feel if it had been picked up even six months before I would not have had mastectomy, they would not have grown so big and maybe only one and not got to the six lymph nodes.
I feel the same way as you Jeannie, in that we have to spend time trawling through the forums to find anything on lobular, which is why I support your request for our own separate category.
Before diagnosis I had no ‘lump’ as such, just a feeling of bloatedness in my breast that I often experienced as part of my PMT symptoms and as I was still having periods at that time, albeit only every 10-12 weeks, I put it down to that. It was when I eventually experienced a sharp pain that I went to my GP and she referred me immediately to the bc clinic, in fact I was seen the following day. At the clinic my fna was clear, nothing showed up on the mammogram and the ultrasound showed only a vague (apparently) suggestion of a ‘small lump’. I chose to have a mastectomy and afterwards was told it was lucky I made that decision as I had a 4.5cm lump plus two others each of 1cm. Had I chosen a lumpectomy they could well have missed the smaller lumps. Amazingly, only 1 lymph node was involved.
I can’t fault the treatment I’ve had but when I asked my breast surgeon about the possibility of future MRIs on my remaining breast I was given a lecture on how it is important not to over-test or ‘over medicalise’ people, which was another way of saying ‘no chance’! I’m going to enquire about the cost of a private MRI but I doubt my surgeon will back me on that one.
Meanwhile I’m off to investigate the US website that JaneRA has mentioned!
My lobular bc wasn’t even recognised by my GP for six months. Went in the October with a small lump which I had felt on a few occasions in the bath etc. However, GP sent me away and said he couldn’t feel anything, he asked me to put my fingers on and show him. However, I couldn’t then and there in the GP’s surgery. He said couldn’t feel it and not to worry. However, over the next six months I realised that not only was that one there, but another lump was there as well, so it was 6 months before he finally sent me. Consultant said it was hard bc to find, and not necessarily the GPs fault. However, months later after bilateral mastectomies and much stress, in a confrontation with my GP he kept saying well I told you to come back if you felt it again. I said you should have sent me in the first place. His answer to that was that he was always careful with his breast ladies and only a few weeks previous he had sent a hysterical woman to have her breast checked because although he couldn’t feel a lump, the patient said her breast was troubling her. I said Great, so if I had been a hysterical type I would have got the referral to the hospital I should have got in the first place. Breast Consultant said not to blame the GP and that lobular was a hard one to detect, but still think he made a major mistake and have since changed to another GP in the same practice.
I agree with what your saying about how hard it is to be detected. My mums tumour was found at 4cm which is by no means small, so has been there a while before detection.
She has her op on Thursday and there saying they wont really now exactly whats going on re size, spread etc until she is opened up.
Lobular seems to be quite hard to dx.
It took 5 years for mine to show up on mammograms and ultra sound, fortunately for me it was a grade 2 slow grower but still measured 6cm x 1.5cm x 1.5 when I eventually had my mastectomy!!!
I initially went in 2001 with a pain in the upper left quarter of the breast which never really went away, mammo and ultra sound done but nothing showed up. I went again in 2003 with the same pain but slightly worse and this time the nipple was pulling slightly to the left, only a mammo was done and again nothing visible so was told it was my age and things change as you get older (I was 48 at the time) Oh! and breast pain can be caused by a number of things! Then in 2006 the pain was getting a lot worse and the nipple was just about permanently pulling to the left so had another mammo and hey presto the poop hit the fan… they did an ultra sound and 3 needle biopsy there and then, they didn’t know how nice to be!
I’ve since had mastectomy/ANC, chemo, rads and now on Arimidex and Calcichew (or as I call it lemon flavoured grit). I also had a recon done at the end of March.
Hi There,
This is the first time I have posted on any sites but have found this very helpful on many topics about BC.
I must tell you about my Invasive Lobular story. I had no symptoms at all my sister was diagnosed with BC (not lobular) Oct 2007 thought I would get myself in the loop went to see GP Nurse, would not refer me for mammogram because of age 47 but told me of Lady Macadden in Southend where you make donation to the charity and they will test you. Well what do you know after a call back and more tests & 5 core biopsies! at another centre have 5 x 4 cm tumor with palpable lymph nodes this was Dec2007. I started chemo Jan 08 (very hard work). After chemo was told I had a complete response to chemo no cancer visible on Mamo / ultrasound and importantly MRI also, although I could still feel (lump). However after being advised that after such good response Mastectomy no longer necessary I had lumpectomy with a lymph node clearance but no clear margins were achieved at all on lump, so I now do need mastectomy after all.
I Think I have decided to have mastectomy with a Diep reconstruction on right B but am concerned also about recurrence in other breast as I believe this is more common with lobular do I go for bilateral? If I couldn’t find a 5x4 cm tumor and anything smaller is invisible to all forms of scanning what chance that they find it early even with close monitoring? I would rather not be doing this again in 5 to 10 years time?
Since my sister and I have been diagnosed we have also found a significant history all on the paternal side 2 Aunts and 3 cousins with BC what do I do? You can only do diep once do I have them both done at the same time or have a delayed reconstruction with a worse cosmetic out come ? and I still have radiotherapy to look forward to too.
Any advice / experience would be very welcome
Thanks
Hi Everyone
I was diagnosed with lobular bc in May this year after my sister had ductal bc 4 years ago. Mine was picked up on my first rountine mammogram since turning 50, what a shock. Doctors thought it was very small only 7mm turned out to be 24mm and had already spread to sentinal lymph node thankfully only the one, took out nine in total. Doctor said I have been lucky to have it picked up at that particular time as it was just a small speck on the mammogram. So far I cannot fault the staff at the hospital, as I had no symptoms whatsoever that this was happening to my body.
I opted for the Lumpectomy, start my FAC Chemo next week and then Radio. I have two other sisters who are worried now, my younger sister has just had a mammogram yesterday, as she has found a lump, she is booked in for a ultrasound in two weeks, so we are keeping our fingers crossed for her.
We have also been in touch with the Centre for Life in Newcastle to see if we can be Gene tested as we have two great aunts who had BC and there is a lot of cancer on our mothers side.
But we wont be beaten just like the rest of you ladies
So keep smiling everyone we will BEAT THE HELL out of it!!!
In desperately trying to find out whether my cancer is lobular, ductal or inflammatory can I please ask the lobular ladies if any of you experienced bleeding from the nipple?
I had a mammogram, and an ultrasound neither of which showed anything, even though my breast had a definite hardened area from the top, round the side and slightly underneath and was also uncomfortable, if not sometimes painful.
The cancer was eventually diagnosed when the surgeon (who also said it wasn’t cancer) did a simple microdectomy operation. He realised once he opened me up it was an aggressive cancer - just stitched me up again (leaving a rather nasty scar that doesn’t seem to want to heal). I think he must have removed something because now my breast is much softer, not swollen like before and no more bleeding from the nipple. I’ve had 2 chemo treatments already with another 6 to follow before a mastectomy.
I’ve tried to ask my ONC but with language problems (French/English) I can’t seem to get the answers.
Good luck to you all and thanks for reading my epic question
Hi all lobulars
I was diagnosed Feb this year. I had a lump that came and went for months before and when it stayed I went to GP who like me put it down to hormones but thought it should be checked anyway. Mammogram normal, ultrasound showed something there, biopsy confirmed invasive lobular. Im 44. Mammograms dont always pick it up because it occurrs more commonly in ladies of 40-55 who still have denser breast tissue. MRI’s do pick them up and I was given one because there is 20% risk of it occuring (not spreading to) in the other breast at the same time or at a later date. My other breast was clear but the scan picked up another lesion so I opted for a mastectomy. The pathology report was interesting because the lump I was feeling was a cyst and the postion of the lobular I never felt anyway it was under my nipple. 1.9cm.
So if I hadnt had the cyst it may of been years till I felt something.
Having chemo now.
At diagnosis I just wanted information to try and make sense of it all and having a seperate category would have helped but we are only 10% of breast cancers and may not seem large enough group?
Peacock no didnt have any discharge at all.
I work with GPs being a nurse and I dont know why in this day and age they dont just refer every lump. They know they should.
Love to everyone
Peacock - I had no bleeding or discharge of any kind from the nipple
I was DX with ILC 21 DEC 04 following my first NHS screening ~ nothing on the mamo except a tiny line - picked up by ultrasound ~ confirmed by biopsy. chemo, mast and rads followed by prophylactic mast and tissue expanders. initially I found all my information on breastcancer.com ~ really helpful. a separate forum would be good as I was completely baffled at DX ~ no lump just a glandy feeling around the time of my period so I am forever grateful to the NHS National screening program for finding it. Interestingly I had noticed my Bra getting tight and when I was waiting for the results of the biopsy (what a long week that was) I noticed a small dimple. I took tamoxifen for 2 1/2 years and am now on Arimidex. Breast specific MRI scans would be the best but V expensive… Rosemary
PS ~ it was BIG! but luckily no nodes pos. I did have genetic testing at Guys as my Paternal Grandmother, Aunt and cousin have had BC ~ neg to BRACA 1/2 but will keep an eye on my sister and Daughter.