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Lobular Breast Cancer

aroma
Member

Re: Lobular Breast Cancer

hi geordielass. im a fellow lobular and an exiled geordie,came to the west country as a small baby so no accent ,still have reatives in gateshead . i found that bathing sarongs were the best for bandanas ,they do them with beading as well i have a few very pretty ones that i wore when i lost my hair ,and if you visit matalan they have a sale on and are very cheap to buy ,my most expensive one was only £4 .black with sequins all over very nice for evening dolling up. hope this helps .lynn x

AnnaG
Member

Re: Lobular Breast Cancer

Hi ladies,

What a lottery this is! I live within the Oxford area so was given an MRI scan of my other breast a few weeks after my mastectomy. A suspicious area was seen, so currently waiting for result of biopsy on that. It doesn't seem fair that I can have an MRI here and others are told "only if you find a lump".We shouldn't be expected to rely on that. It's too much anxiety, and might get missed again!

My lobular ca was also missed for months.The lump on my areola being dismissed as a swollen Montgomery's gland, by both my GP and the consultant at the breast clinic, when i went to have a cyst drained. It was picked up later by a different consultant because, by then, the nipple was being pulled to one side and the breast had orange peel skin in one quarter.I was told the cyst had done me a good turn.Mine, too, did not show up on mammo or US. But punch biopsy of course showed that it was ca.

I'd be willing to pay for an MRI if I hadn't been offered one.

Love to you all,

Ann xx

Geordielass
Member

Re: Lobular Breast Cancer

Hi
Feeling great after the round one of the chemo only had a small amount of queasiness, mind you had plenty of headaches, still got one, but will live with that, lot more worse off than me!
Julie i live not far from the Metro Centre born in bonnie Blaydon proper geordie me! Blaydon Races and all that you know!!! how about you.
Dont worry Moonshine, you will get things sorted, mine came as a shock too, I had no symptoms showed up on my first mamogram, and had spread to my main sentinal node now i having chemo and radio then tamoxifen, we can beat this damm thing girls. so chin up and lets all march on. I keep telling people i am going to hooplas down the street and kiss George Clooney one day, this keeps me going at the moment, and of course my family and all my friends.
Doreenxx

moonshine
Member

Re: Lobular Breast Cancer

Hi all, another new diagnosed lob here 22/07. I live in Essex and was quoted £352 for private MRI, luckily they had a cancellation and offered it to me yesterday, so now it's done, and now I'm worried what it will show. My lob presented as a very hard lump with overlying dimpling of skin, is on left boob right on edge of inner quadrant. Have this morning been rushing round trying to get on top of housework that has been severely ignored and I am sweating my tits off (oh well that'll save on surgery) Have stopped for coffee break and came on here. I can't seem to go 5 minutes without thinking about it all - like living in a black cloud and I wish it would bugger off. Comforted by words of BS that BC is the most treatable type of cancer there is probably. Thank God for that!!!!!

Julie22
Member

Re: Lobular Breast Cancer

Hi Geordielass

Just out of curiosity where do you live. With a name like geordielass it has to be my neck of the woods!!!

Julie x

Geordielass
Member

Re: Lobular Breast Cancer

Hi all

Had my first chemo yesterday, went ok, although one of the drugs, did seem to send me off floating to the moon and a horrible peppery feeling in my nose, a very strange experience in itself. Had a terrible migraine all day and night, up at 4.30 this morning, no sickness yet! I am having the FAC treatment chemo.

Still havent sorted out a wig yet, got a couple of short bandana's and some hats, anyone know where you can get any cheap long bandana's from. Not looking forward to the hair dropping out mind.

Surgeon said my margins were good after taking my lump out as it was in the lobe area and quite deep in the breast, thanks for the cost of the MRI, Lyn (Maxbryn)

Celebrating my 32nd Wedding Anniversay today Girls. Take care everyone

Doreen x

lyndu
Member

Re: Lobular Breast Cancer

I guess I was "lucky" as the lobular cancer was my second breast cancer in the same breast, so I had an MRI of the other breast without asking, to check if I needed a double mastectomy - as I'd already had lumpectomy and radiotherapy another lumpectomy wasn't an option. (First time round was an IDC)

On the other hand, it did take a bit of pushing to get diagnosed in the first place - I noticed a thick area last March but nothing showed on the routine mammo so I was happy enough. Then I realised it was niggling at my mind - with my history, my GP was OK to refer me at once, and although still nothing turned up on the mammo or ultrasound, and I was being told it was just scarring from the lumpectomy, the surgeon ordered 3 core biopsies and the rest is history.

What concerns me is the emphasis on "finding a lump" - I know it's only around 10% of cases are lobular, but a thick area just wasn't on my screen as a sign to get checked right away.

Not sure about the need for another category, though - once past diagnosis, the treatment isn't all that different, so which area do you look in for info about chemo, arimidex etc? If anything needs its own category, it might be inflammatory, which does have a very different profile.
I find having "After treatment has finished" and "living with breast cancer" confusing already. And perhaps the new site will have an even better search facility? I used that to find out as much as possible about lobular (and the US site!)

Lyn

maxbryn
Member

Re: Lobular Breast Cancer

Hi
I had my MRI scan on the NHS prior to my op. Was booked for lumpectomy and then had a mastectomy after scan result as more detail was picked up. Mine too was under the nipple. The surgeon said he still would of done breast conserving surgery but I didnt want that. As long as youre margins are ok geordielass you should be ok. To have a scan privately is around £200. I live in the northeast.
Lyn x

aroma
Member

Re: Lobular Breast Cancer

when i was diognosed with lobular it was after fine needle hadnt shown up anything despite my boob beibg like an orange i had severe pain ,i had a core biopsy which showed 4cm shadow after which i had mri on the nhs! . after my mastetectomy my growth was over 6 cm under my nipple .i think however expensive an mri is, if it finde cancer before it spreads could save more people from loosing their whole breast ,and less invasive treatments would possibly be needed.

Geordielass
Member

Re: Lobular Breast Cancer

Hi everyone

I agree finding this thread has been a godsend, so little on lobular cancer, it is a little frightening, i opted for the lumpectomy now having chemo, which starts tomoro, very nervous and anxious, wondering if i should have gone for the mastecomy, the reoccurence factor is worring me such a lot.

Like you Liverbird I too am wondering how much a MRI scan costs because if this is the best way to pick up this type of breast cancer it certainly is going to put my mind at rest each year. My sister has also had breast cancer and two great aunts, Wea re currently hoping to be tested for the gene factor.

Hope everyone is still smiling, love to all

D x

Liverbird
Member

Re: Lobular Breast Cancer

Glad this thread has come up to the top again. I did say i thought there were so many threads on the site there was no need for a lobular BC one but i am glad i found this thread.
Has anyone had a MRI on the NHS? How much is it to have one done privately?

I am going through a panicky phase as have had pain in remaining breast reminds me of my experience with the breast with cancer in in 2005.

Rx

rosieposie
Member

Re: Lobular Breast Cancer

Jane ~ just noticed that you have already mentioned breastcancer.org ~ really good site
R|osemary

rosieposie
Member

Re: Lobular Breast Cancer

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.

chukki
Member

Re: Lobular Breast Cancer

Peacock - I had no bleeding or discharge of any kind from the nipple

maxbryn
Member

Re: Lobular Breast Cancer

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
Member

Re: Lobular Breast Cancer

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

Geordielass
Member

Re: Lobular Breast Cancer

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!!!

TrudyB
Member

Re: Lobular Breast Cancer

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

chukki
Member

Re: Lobular Breast Cancer

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.

ForumMember
Member

Re: Lobular Breast Cancer

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.

Julie22
Member

Re: Lobular Breast Cancer

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.

Catfan
Member

Re: Lobular Breast Cancer

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!

ForumMember
Member

Re: Lobular Breast Cancer

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.

rosemarywine
Member

Re: Lobular Breast Cancer

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.

JaneRA
Member

Re: Lobular Breast Cancer

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

aroma
Member

Re: Lobular Breast Cancer

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

rjenr2
Member

Re: Lobular Breast Cancer

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

Jeannie
Member

Re: Lobular Breast Cancer

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

Liverbird
Member

Re: Lobular Breast Cancer

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

Jeannie
Member

Re: Lobular Breast Cancer

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

Catfan
Member

Re: Lobular Breast Cancer

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

Jeannie
Member

Lobular Breast Cancer

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