triple negative I was diagnosed in Feb 2006 with ILC - it seemed to come from out of nowhere but after my mastecomy I was told that 14 out of 20 nodes were affected. I'm ER-. PR- and HER- and was 43 at dx.
ILC missed I had DCIS Grade 3 in December 2005. While undergoing Radiotherapy in Feb 2006 I found an area of thickening in the other breast. I went straight to my Breast Care nurse who felt it too and said to see the Radiology Consultant. She also found it and booked an appointment for an ultrasound.
The ultrasound man told me that what I felt was a cyst and that there was another smaller cyst to the right.
I was so relieved I never asked for a second opinion.
6 months later my follow up mammogram showed an area of thickening and an MRI showed up the second tumour as well. Both were invasive lobular cancers 3 cms and 4 mm
Since they are in exactly the same area as the "cysts" it seems highly coincidental!
I wish I had gone back to my surgeon who is a very, very careful man and asked if he would do a fine needle biopsy just to reassure me.
I'm not going to complain to the hospital because I think I will get too worked up and it won't do me any good physically.
My message is - get it double checked. ILC is so sneaky.
By the way FISH showed mine to be her2 pos.
hi staffy i,m still waiting on the results of the her2 status, so perhaos i will be ok and not need herceptin
i see the oncologist on the 12/9 so hopefully i will find out then
chemo is going ok will be glad when it is all over
had trouble with my hickman line at yesterdays chemo session but luckyly thet found a vein to use so still had chemo
had a xray this am and myline is flushing ok so hopefully all will be ok
Hi mizzmc Is your oncologist waiting for the results of the HER2 status or are those results back.? As I understand it you only get herceptin if your b.c was HER2+. It is possible to be er+ and HER2+ but unusual I think for lobular b.c at least that seems to be what the rest of us on this thread have been told.
I also had mastectomy but had an immediate reconstruction. I then had 4AC chemo. but no rads. and I am taking Tamoxifen. I wonder how it\'s decided who gets what treatment. Even people with very similar circumstances often get very different treatment.
Hope your\'e coping with the chemo. I am guessing you are coming up for the second one good luck it\'s not very pleasant (understatement) but it is do-able.
P.S. great news having clear nodes.
me too hi amazonwoman,
i,m another invasive lobular lady, i was diagnosed on the 6.6.6
for years i always had painful breasts which i always put down to hormones as i suffered with endometriosis for 20 years
at the end of april i noticed a small lump in my breast and waited a few weeks before seeing my gp, when i saw him he too felt the lump and sent me to the breast clinic, he believes any lump is suspious until proven otherwise
At the clinic i had a mammogam, ultrusound and biopsy which showed ilc my consultant explained about ilc mimicking breast tissue so sent me for a mri scan which showed a much larger tumour
i had a mastectomy and have started ec chemo and will have rads and tamoxifen but the oncologist keeps mentioning herceptin so now i,m confused after reading the posts on here could i be er+ and her2+
all my nodes came back clear
After reading some of the posts im so pleased with the response of both my gp and consultant
Another ILC My ILC was not picked up as a result of my routine mammogram - as such. There were two microscopic microcalcifications in an area about .25 of the size of my little fingernail and I was recalled for investigation. They magnified the area of concern and decided to do a biopsy because the pattern of microcalcification was so small as to be inconclusive. That\'s when they discovered that I had Invasive Lobular - Grade 2. MIne turned out to be multifocal and they suspect that it would have merged into a palpable lump eventually so I am very grateful to the radiologist for their vigilance.
I had a mast/recon and had no lymph node involvement - because they said it was caught very early. I also had an MRI scan to see if there was any evidence in the other breast. I did ask my surgeon whether I should consider a biltateral mastectomy because of the increased risk of bilateral lesions but he said that there has been research indicating that there is only a very slightly higher risk of further primaries in the other breast. I also asked about having MRI scans instead of mammos as ILC tends not to show up on mammos - apparently it mimics normal breast tissue - and he said that the problem with MRIs is that they don\'t show up carcinoma in situ, only invasive.
The nurses at the clinic did say that everyone is conditioned to look for lumps but that more should be done to raise awareness about this sneaky type - often not palpable, not showing up on mammos, difficult to dx.
I was diagnosed with ILC in March this year (I\'m 47). What amazed me was that I had had 2 friends diagnosed with breast cancer in the previous 6 months and had been vigilant about self examination. Yet this snuck up on me out of nowhere and the first I knew of it was pain and thickening in L breast for about 3 weeks then I noticed the skin seemed to have an orange peel texture. My GP referred me urgently and I was told by consultant a week later that it was ILC.
When I said to her how could this happen she said that it is the nature of ILC, it can be very difficult to detect until a response within the body makes it \"harden\" enough to be palpable, I felt that I had somehow been negligent but she was very reassuring that this was not the case. I had a mastectomy and ANC with 9 nodes positive so this had obviously been there some time! I\'m also ER/PR++ and her2neg.
Welcome to our, not very exclusive club Biggypop46. Though from reading your post you could qualify for membership of ALL the clubs on the forum.
Breast cancer is soooooo sneaky, and manifests itself in numerous shapes and sizes. I tell everyone I know (and some I don\'t) not to leave anything to chance.
I see from your profile you were diagnosed in 2001, so that must give hope to lots of others with multiples.
Hope you are travelling well.
Invasive Lobular I have only just come across this thread. I too have I Lobular.
All I had was a slightly raised area of skin on the left breast. I watched & wondered for a few months but finally saw a woman GP who said she could feel nothing but sent me for tests.
After 6 weeks of back and forth , mammo, Ultrasound & scan guided core biopsy, and from a tiny patch of puffiness, it turned out I had Invasive Lobular, Invasive Ductal, Mucinous Carcinoma & widespread DCIS in BOTH breasts!
I didnt even find out about the multiiple types till a couple of years ago when the Onc told me.
It really brings home that its not just lumps you need to be wary of.
Thanks for your replies Seems that we have all pretty much been given the same info. then.
I have been reading the breastcancer.org site as you say they are very well informed.
I was also told by an oncologist at the younger womens forum that recurrances of lobular b.c. can appear in places that ductal doesn\'t.
Such as gastric sites and ovaries. Two years on from diagnosis and I still find myself searching for info. that relates particulary to lobular b.c. and it\'s not that easy.
P.S. Have a good holiday Jeannie
I too am HER2 - and ER/PR+. I was told too that the Lobular and the status just given was usual for my age. I was 32 last Nov when diagnosed
Lobular and HER2 Hi Staffy
Just confirming what Jeannie said. I was also HER2-, but ER+ and PR+. I think my oncologist told me the same thing, that ILC is unlikely to be HER2+. I think it\'s because ILC usually have hormone receptors, and interestingly the women that have this are usually older.
If you go to breastcancer.org and check out the ILC section of the discussion forums, you will find heaps of interesting information on recent research and treatment options. These ladies are VERY well informed!
Good luck with everything and keep us informed on how you are going.
Lobular and HER2 Hi Staffy
It\'s Jeannie here and I\'m sending you a quick response before going off on hols.
I was tested for HER2. I was negative. My understanding on this is that because lobular is almost always ER+ and PR+ it is unlikely to be HER2+. I have also read this somewhere.
I hope that is helpful to you.
Regards to all.
Lobular and HER2 I wonder if any of the lobular b.c. ladies that have been recently been diagnosed can tell me if they were tested for HER2 and if anyone had a positive result. I was diagnosed 2 years ago before b.c. tumours were routinely tested. I was told by an oncologist that you were less likely to be HER2 positive if the tumour was ER+ which apparantly lobular almost always are and lobular b.c. lessened the chances of being HER2 positive even further. Anyone else got any info. on this?
Thanks in advance
P.S. I was also let down by a breast consultant 2 years prior to my diagnosis he failed to request any investigations for the 2 areas of concern that eventually were diagnosed as malignant. I have to say since diagnosis I have no complaints with my care and treatment from the consultants who look after me now.
I am another Lobular lady and this thread has opened by eyes too!
I was not imsdiagnosed but the surgeon seems to brush off my hyer concern regarding the other breast which is lumpy anyway. I know that the scans etc have shown nothing on it but I do tend to worry and its very interesting to see how persistance pays off when you stick to your guns, fair play to you all
Hi Jeannie Enjoy your Odyssey experience (I checked out the website and it looks very interesting).
Look forward to hearing all about it when you return.
Hope you feel refreshed and invigorated and ready to carry on the fight.
Thank you Amazonwoman Hi Amazonwoman
Just wanted to say thank you for your very kind words. I fully agree with all you say. There are so many issues involved with the management and care of breast cancer. I\'m very aware that not all GPs are as incompetent as mine. However, I don\'t think any GP should refuse a women who is anxious and knows something has changed within her breasts the chance to have further investigation by a specialist. After all, they are only General Practitioners and are unlikely to have specialist knowledge on breast cancer. However, they have the power to refuse you. I think all women regardless of age should have access to specialist examination for breast cancer.
It was at GP level things went wrong for me. From some of the comments on this board I can see that even at specialist level things go wrong for people with ILC. Sounds like the specialists need better training in relation to the different types of breast cancer.
I\'ve moved forward a little in my campaign and am hopeful of getting armpit lumps incorporated into the SIGN guidelines. This will help other Scottish women who go to see their GP with lumps under their armpit.
I\'m off on my Odyssey holiday this week. Odyssey is a charity which enhances the quality of life for people with cancer through imaginative programmes of challengning and dramatic activities using the outdoors. Will report back.
Wishing you all well and will be in touch on my return.
I was told that only 10-15% of breast cancers are ILC not 10-15% of women altogether if that was what you meant - so maybe there are even less of than you quote, although that is no consolation.
I was also told that ILC is difficult to pick up from a mammogram because of its nebulous formation and frequently (usually?) goes undetected by that.
MY initial \'lump\' detection felt like a little water filled balloon but this turned out to be an area of inflammation above the actual tumour which had, by this stage, formed a solid core.
My decision on a bilateral was based on fact it often occurs in the 2nd breast within a few years and meeting one person and hearing of another for whom this had happened.
Gillyf - It was 4 years for me as well. Hi Gillyf
I am the lady who is going down the medical negligence route - I will keep you posted of development. However, I can tell you it is very hard and takes up huge amounts of time. But I will keep fighting......
I could relate to your posting. It is very concerning and I agree specialists should be more aware of different types of cancer and not stop at mammography if there is something that is not normal for you. A biopsy could have been done first time round.
However, do not beat yourself up. It sounds to me as if you did everything right. And, like myself, you happen to fall through the net because the services in place are not adequate. It could be that because lobular breast cancer only affects between 10 - 15% women they don\'t take enough notice. Or does money come into it?
It was 4 years later that I was diagnosed with advanced lobular breast cancer. I have to live with this knowing I did everything in my power to avoid such a late diagnosis. I am not at the stage of being able to put it in the back of my mind - the anger gets at me more that the cancer most of the time. Like you, I often think I wish I had been more assertive. We are supposed to trust our doctors and this is what I did - to my downfall.
However, we must move forward and through support, alternative therapies and lots of other good things we are able to do this. This time last year I was lying in a heap not wanting to face the outside world. I have come a long way in my jouney. Next week I am off on the \"Odyssey\" adventure. This is a adventure holiday for people with cancer. Someone mentioned it on a website. Anyone interested the website is: www.odyssey.org.uk. I\'m looking forward to it.
Be in touch on my return.
Hugs to all the lobular ladies and thank you all for your support and kind wishes.
Great to see this thread.
hi ive also got invasive lobular cancer, i went to docs in april who sent me for tests at the breast clinic ,i had needle biopsy, a mamogram and a scan, (very painful) as i had terrible pain in boob but they said they coulnt see ant evidence of cancer, well i went back again in may as the breast wes still very painful and my nipple had gone west ! i then had a core boipsy and knew before i was told what the results would be i had a 4 cm tumour and would need mastectomy im on fec chemo to shrink the tumour before the op , im not happy about the length of time between finding the lump and my treatment starting, they have already lost my notes , we are at the mercy of people that are supposed to know these things but dont seem to realize how we feel. i hope all that have been misdiognosed stand up and fight for the right to a decent quality of treatment .much love lynn xxx
I too have ILC but with a happier path through the system.
I have always had very lumpy breasts so self-examination was all but impossible until recently , in my early 60\'s, when the breasts got all over soft. It was almost 3 years since my previous mammogram and I have never been called back from any of those.
I discovered a lump and, more significantly, a puckering of the skin at beginning of March this year and went to the GP a couple weeks later when I was sure it was staying there and not my imagination. I got fast tracked to a One Stop Clinic within two weeks. The Aspiration sample being unclear I had a scan guided biopsy the same day and the diagnosis the following week, ILC.
A mastectomy and node sampling was booked for 4 weeks later but brought forward by 2 weeks to 28 April 06 , so 5 weeks after seeing my GP I was in surgery. My main decision was to have a bilateral mastectomy although there was no sign of anything in the left side, about which I have no regrets.
I understand the \'two weeks to first clinic\' is an optimum government target but it doesn\'t help if you can\'t get your GP to start the process off for you. Knowing how I felt at even my rapid treatment I can hardly imagine the stress the rest of you experienced.
However just for balance to tell others the system does sometimes work as it should.
Developments on the chat forums Hi all
I have seen the request for a separate room for ILC. At the moment we are collating feedback we have received concerning developemnts on the chat forums. We wil be looking at the possiblity of changing the number and type of rooms we have to reflect your needs and requests and we will certainly be adding your request to the list.
I will keep you posted about these developments.
Breast Cancer Care
Invasive Lobular Carcinoma (ILC) I\'ve read all your stories and I am so sorry that so many of you are going through this. It seems quite obvious that there is not enough education about the different types of breast cancer. Maybe even GPs need to be better informed as they are usually our first port of call when we find something unusual.
I remember walking around with my golf ball size lump in my breast and being aware of it all the time. But I was reassured by the fact the a breast cancer \'expert\' had done all the tests and told me nothing was wrong. (Funnily enough this was a woman). It was only when I went to see a male gyn about bladder problems that it was taken seriously. He did a routine exam and asked me if I knew I had a lump? How could I not? It was huge. He insisted on sending me to a surgeon he personally recommended. This guy did the needle aspiration himself (the first one was done by a young female tech in a pathology place),as he said unless you take samples from lots of different areas, you can miss something. He didn\'t miss anything!
Jeannie, Gandalf, gillyg, Dawnhc and Liverbird, good luck to you all. I\'m thinking of you and sending good positive vibes your way all the way from Perth WA (I\'m originally a Bolton Lass).
Hopefully when we get our own heading in the main forum we can get some more girls on board the \'ILC Express\'! The more informed we are the better our treatment will be. Let\'s keep asking the hard questions. At least we have each other. I will never betray your trust.
Same here I sat last night typed a huge email and lost the darn thing sob sob!!
How fascinating but depressing all this is.
I went to my docs a year before DX with burning and pain+++++ in left breast. Because i had been to the hsop a few times with discharge on the right side which they said was a benign wart in a duct and ok to leave the GP always had me down as a hypercondriac.
Ok i had only lost a aunt 57 uncle 58 mum 79 and best friend 36 to this disease so i shouldnt be worried, should i????????
Gp treated me with antibiotics.
I went back in the March 2005 as i felt something was a miss only to be told i was imagining it there was no lump.
All through the summer i felt my breast just was not ok but ofcourse i wasnt going back i was a hypercondriac after all.
Sept breast changes shape and I KNOW ITS CANCER, bloomin woman GP when i asked if it was BC she said \'if it was BC i would have you seen in a week\'
Asks if i have had my appt for the family history clinic, nope waited 9months for it so she says she will follow it up (how kind!!!!)
Ten days later i go back to see a male GP who i have known for 20yrs and he refers me and guess what its invasive lobular cancer and WLE no good no lear margins so a mastectomy. How long have i had this???????
i dont have confidence in anyone
Invasive Lobular Carcinoma (ILC) It\'s good to hear from ladies going through similar experiences (though sorry it\'s happening to you all! It\'s never a good club to join but I think the members are all amazing people!).
I \'ve emailed the moderator and asked for a heading in the main forum list for ILC. Hopefully we can then give more people the opportunity to ask questions or share their stories.
Or even just vent their anger and frustration as this type of breast cancer is often diagnosed later than other types.
Keep fighting the good fight!
A close call Hi all,
I have been following this thread with interest. The last tumour I had was not picked up on a mammogram but i reacted very badly to it and found the pain excruciating. I have had many mammograms before that one. For days after I felt physically sick. Then a month later I found a large lump in the breast that had hurt so much.
I saw my surgeon and he did a needle aspiration which came back inconclusive. He was about to go on holiday and introduced me to his standin after doing a second needle aspiration. I returned for the result to see the stand in who told me everything was fine it was benign. Why didnt I believe him? Because I already had 2 major tumours in the other breast, a mastectomy, a recurrence in the skin requiring major surgery and now this.. Benign - I think not. The guy told me I would be seen in clinic in 6 months. I refused to budge until he came up with a better suggestion - so got an appointment with my surgeon on his return from holiday. I was back in hospital 2 days later and had a full mastectomy! The tumour was 7cm and spread into all the nodes they removed. It is tough but we have to insist on the attention we want. I believe I would be dead now if I hadnt done so. My bc is aggressive HER2+++ type and I now have secondaries.
I have to say that if that doctor still remained in the hospital I was prepared to go for the jugular. But he left.
Invasive lobular carcinoma Hi amazonwoman
Although I take some comfort from the fact that other lobular bc patients all seem to have a \"saga\" of misdiagnosis, it just adds to my puzzlement...why don\'t breast specialists be on the look-out for this possibility?!
I went to my GP for HRT and she examined me and said that she could detect some thickening along my side. She referred me to the Breastcare Clinic for a mammogram, (I was just 50) but this was neg so I started on HRT. I then had 2 more routine mammograms.
In May 2003 I went back to my GP because the shape of my breast was changing...her face said it all!
Appointment at Clinic and again a negative mammogram and the ultra sound doctor saying that he could \"feel a lump of fat\". The surgeon took a needle biopsy which she actually held up to the light in front of me and said \"no cancer, but obviously some dis-ease\".
A week later I was told I had lobular bc: a 6cm tumour. This was 4 years after my initial referral by my GP.
The surgeon described lobular bc as like a spider\'s web, and this is why it doesn\'t show up on a mammogram.
Who is to \"blame\"? My GP for not insisting on further investigation after the original negative mammogram? The Clinic for not pursuing the fact that I had been referred by my doctor who had felt something odd? The fact that I obviously got lost in the system? Or my own fault that I was happy to accept the negative tests until such time as my nipple \"disappeared round the corner\"?!
Every success to the lady pursuing the case for medical negligence!
Best wishes to all \"lobular ladies\".
mis-diagnosed Big Time! Hi Jeannie
I think you are fantastic! You\'ve been through so much yourself yet you\'re using a lot of your precious energy to help other women.
I don\'t understand why there isn\'t more info out there about ILC. I had never heard of it until I was eventually diagnosed. If the so called medical experts know that it\'s difficult to diagnose why don\'t they take us more seriously. We are told to check for changes and lumps, but when we find them we\'re told nothing is wrong. But you can\'t diagnose ILC without at least a biopsy, but usually a lumpectomy is needed. My mammogram didn\'t pick up the changed cells. Neither did the needle aspiration. What does this mean for all those thousands of women, especially the younger ones, who find lumps? I was told you can\'t biopsy every lump as most are benign. That\'s no comfort to women like us, is it?
I tell everyone I know ( and a lot I don\'t know) about ILC. And I advise them to get EVERY lump biopsied. It\'s not worth taking a risk with your life. I am lucky that I have private health insurance, which doesn\'t cover all the medical costs, but it does mean I can chose who, when, and where. As long as I am paying I can have it done pretty quickly. Good health doesn\'t come cheap. But it shouldn\'t be about money!
I admire your courage and tenacity. Taking on the big legal guns of the medical profession is very scary. Good luck with everything and keep us updated on how things are going.
But, don\'t forget to be kind to yourself. You have been through so much and still need lots of tlc.
Keep fighting the good fight
Mis-diagnosed Big Time! Hi Amazonwoman
I have been mis-diagnosed big time! I also have lobular breast cancer.
I first went to see my GP in 2001 because I had swelling under my right armpit. She said it was an extension of my breast tissue. I asked if I could have a mammogram to be sure but she refused. Said I had nothing sinister going on and that as I was only 46 my breast tissue would be too dense to show up anything. I accepted this but over the next two years I got more concerned as the swelling had got worse. I also had thickening and lumpiness. I went to see another GP in my practice in 2003. She said it was the remains of a viral infection and the swelling and lumpiness was normal. I went again in April 2004 when I had two definite lumps - only to be told yet again nothing to worry about. Again, I was refused a mammogram. She said I was not entitled to one until I was 50. When I reached 50 (December 2004) I phoned a breast screening unit and put myself into the system. I got recalled in early February 2005 and my surgery took place in middle February 2005. I was devastated. How come someone who had been so careful with her breasts fall into such a great hole? I\'ve had 4 x Epirubicin, 4 x CMF and 26 rads. I\'m now on tamoxifen.
However, I am not resting on this one. I\'ve been on Scottish TV and in a few Scottish newspapers recently. I am campaigning for changes to the SIGN guidelines (the guidelines Scotland use for the management of women with breast cancer), better training for GPs and earlier screening. Women under 50 get a raw deal as far as I am concerned. In fact, young women usually have more aggressive cancers. Also, the SIGN guidelines do not mention armpit lumps although every breast cancer awareness leaflet does - how bizzare is that! Are women more knowledgeable about breast cancer that their doctors? After all, a women knows her breasts best and can easily recognise changes. Why then, do GPs have the power to refuse mammograms?
I\'m going down a medical negligence route but it is fraught with problems and takes up every minute of my day. However, I will not give up. Others must not suffer the way I have.
I\'ve suffered from depression and who could blame me. It\'s bad enough being told you have breast cancer but it\'s a double blow knowing you had done everything in your power to protect yourself.
I\'m now much better and very proactive. I have used lots of alternative therapies, been to Bristol Cancer Care, changed my diet (no dairy or meat or anything that may be pumped with chemicals or hormones) and I\'m feeling very well. However, I must say that the helpful people I have met throughout my journey have given me a great deal of strength. Keep up the good work.
Must go and make the dinner. Keep in touch.
For Gandalf I was interested to read about your experience with a cyst, and that you later developed cancer in the same breast.
Many years ago, when breastfeeding my daughter, I developed an abscess which had to be drained and for which I took antibiotics. After a week or so, I was able to resume feeding from the affected side. Now, I am convinced that something lay dormant from that episode and maybe the changing hormone levels caused by the menopause sparked it off.
Both events may be entirely unconnected, but it does make you wonder¦
Hi Amazonwoman I had a similar experience, though I wasn\'t strictly misdiagnosed. I had a very painful area of thickened tissue (not really a lump as such) at the end of 1998, and was sent to a breast specialist. He said it was nothing and I was a hypochondriac, but sent me for an ultrasound scan to shut me up. This revealed a huge cyst, which the radiologist drained for me, and that ended the pain.
In 2002 I felt the area of thickening again - same place in the same breast. I didn\'t do anything because I knew I would be referred to the same specialist, and I didn\'t want to be told I was wasting his time yet again. However, when I noticed my breast was flattening out along the bottom and I experienced pain severe enough to make me cry, I went to my GP. I did get referred to the same specialist, but he was almost nice, because he recognised that it was real this time. I was diagnosed with invasive lobular cancer which had spread to 3 lymph nodes.
I do wonder if the cancer was there in 1998, but not picked up because no-one was looking for it.
Invasive Lobular Carcinoma (ILC) Hi from Perth, Western Australia
Anyone out there with ILC?
I had a lump for eighteen months, had all the tests, saw specialists etc. Was told to go away stop wasting everyone\'s time. Nothing wrong. I didn\'t know about this sneaky kind of cancer and how it is difficult to diagnose. Wasn\'t told to keep having checks as things could change.
August 2005 had a left mastectomy and axilliary clearance followed by chemo (4 CMF 3AC) and 25 rads. I am now taking Arimidex for five years. Having lots of joint and bone pain.
I am now back at work but struggling a bit with fatigue. I know it will get easier
Would like to hear from others who were mis-diagnosed.