I had BC surgery 2 weeks ago to remove one lump & a sentinel node on the left side & another ‘abnormality’ on the right breast.
I went to get the path results today. Good news on the left side, but the right side has been diagnosed as ‘lobular’ cancer. They have to do an MRI scan to determine its area, followed by surgery & the right sentinel node being removed.
Is anyone else in this situation? Or, does anyone know more abour 'lobular cancer? It seems so much more sinister than the other sort, cos they cant just take a lump as it spreads along ‘branches’
I feel very scared tonight with these new results & the thought of waiting to have the scan & then the waiting after that.
Catherine
Hi Catherine - not many night owls about so I thought I would reply. It is a very scary place to be - waiting for action. It is probably one of the hardest but most people find that once there is a plan of action they start to feel more in control. It must be tough when you have gone through one lot of surgery on one breast to find the main problem is the other one.
I think it doesnt seem to matter which type of bc you have there are so many variables. My original bc was 18 years ago and that was mixed dcis and invasive ductal, and 5 years later I had invasive lobular in the same breast! I managed to produce a further lobular in the other breast a couple of years later… story of my life. It was always a particularly aggressive bc - with each of the tumours but 18 years on I am still here to tell the tale - so aim high Catherine, and keep coming back here and talking about it. You will find it helps because we all understand.
Offering you a cyber hug
dawnhc xxxxx
Hi Catherine
So sorry to hear the diagnosis, the waiting is always difficult and the early hours of the morning can be lonely.
I was diagnosed with invasive lobular 11mm in left breast last November. It was picked up in a ultra sound scan. Had found a cyst which didn’t show on the mamogram but did on the ultrasound and that is when two suspicious areas were identified. Followed by MRI scan, needle biopsies, lumpectomy and then diagnosed as lobular. Due to it being lobular and its position under the nipple I had to have a mastectomy and a sample of lymph nodes were taken.
They were clear but as there was only a 1mm margin between the margin and the chest wall this was followed by radio therapy.
As Dawn says there are so many different types of cancer out there and once it is diagnosed then treatment can begin and you feel under some kind of control.
If you type in lobular to the ‘search’ at the top of the page you will find recent threads on there which may be useful.
It seems that about 10% of breast cancers are lobular, slightly harder to identify and slightly higher risk of recurrance in other breast .
All the best
Keep in touch, there is so much support on this site.
Magsi x
Hi Catherine
Like Magsi I was diagnosed with invasive lobular cancer last November - mine was under the nipple too. Mine didn’t how up on the mammogram or the ultrasound - tee hee apparently I have dense breast tissue (tho i can assure you it doesn’t look like it in real life!!!). It was established by core biopsy and the extent of it by MRI - although waiting for the MRI appointment to come through was nerve-wracking it did make me feel better knowing exactly where it was and so on. In actual fact the wait wasn’t that long - i was dignosed on 29 nov and had the scan within two weeks and could have had the op on Christmas eve (hmm - something telll me the surgeon doesn’t have to organise Christmas!!).
I had a mastectomy and lymph nodes removed on 27 December - I’m now nearly half way through chemo and will then have radiotherapy. None of it has been as bad as I had feared and the team at my hosp in Coventry are lovely - they are v positive and very approachable. It’s hard to ask all the questions when you have just been diagnosed but finding out more may well help you feel in control - it’s what we don’t know that can be scary.
The other thing that helped me was talking to people - lol i probably droned for Britain and friends prob know more about things than they wanted!!! Some things have had a very funny side to them and for me that has cut the issue down to size. Talk to your breast care nurse too - they are really helpful.
Plus the people on this site… hey we all have experience of it in and it’s an incredibly supportive place.
All the best, take care
Jennifer xx
I was diagnosed with lobular b.c. 13 years ago and mine never spread to the other breast but have been living with secondaries for the past 3.5 years.
I think it just shows you that we don’t all run true to form!
There are so many different types of b.c. - some with a better prognosis than others but some of us seem to defy the stats!
Good luck
Pinkdove
Hi
My breast cancer was lobular. I was told there was 30% + chance of it going into the other breast, although it wasn’t in my nodes. I was also told that although I would need a mastectomy, I went on to have bilaterals because of the risk, but my surgeon told me my particular cancer wasn’t as bad for spreading into your system as some of the other breast cancers, but whether that was because of the grading of the cancer I’m not sure, as looking at some of the other comments lobular bc can obviously spread just the same as some of the other types. I had a major liver scare a few months ago when they thought I had secondaries,but it turned out to be a liver cyst and hemangioma. I think lobular is quite hard to detect on mammogram as well. My first lump was missed by my GP even though I went to him with concerns. It was only six months later when I had a second small grisly lump about half an inch along from the first one that it was finally diagnosed. I was quite annoyed and felt that the six months wasted could have had a massive impact, but my breast surgeon said it hadn’t luckily. I think no matter what type of bc you get, you will still constantly look over your shoulder wondering when it is going to rear it’s ugly head again.
Julie
Hi I was dx in Feb 2007, with lobular cancer (1.3 cm)and ductal cancer (1.5 cm)in right breast after having mammogram, core biopsy, stereo biopsy, etc etc. I had a bi-lateral mastectomy although nothing showed up in left breast. However, when path results came through had another ductal (1.2) in right breast and dcis in right breast! I also had 2 out of 4 lymph nodes on right side positive. Had chemo and rads last year and have now had my 2nd check up. I feel fine - can I recommend Dr Susan Love’s The Breast Book (Amazon c £10) - it’s become my bible!
Good luck
Sharon
Hi Catherine
I too have lobular dx in Feb of this year. You are very lucky to have an MRI scan as from everything I have read on here it is the only reliable way of identifying lobular. I have no confidence in mammograms or ultra sounds accuracy of predicting it. I have research it fully on the internet and it is described as anything from a “splat of paint” to a spiders web in appearance. As others have said there is a slightly higher risk for other breast but no one at hospital has mentioned that to me. I have also read that with regard to secondaries it does not follow the same pattern as ductal. But that remains to be seen in my case.
The treatments etc are the same however.
Good luck
Starfish
Hi Lobular Ladies and especially Catherine,
Your hospital sounds very efficient and on the ball. Lobular bc can be very hard to find with mammograms - I had a ‘clear’ mammogram 14 months before my 3.5cm tumour was diagnosed. Because of this I have been asking for an MRI instead of a mamm on my other breast but was told ‘absolutely no way’ would I get one, despite lobular being that much harder to see.
My hospital, Addenbrookes does not give me any blood tests, scans etc, when I go for checks, just a poke and prod in the breast and armpits. Now I am waiting for an isotope bone scan tomorrow…
I would just say to all lobular ladies, keep pressing for MRI’s.
hugs to all, Grace
Hi,
Dx Sept 06 with 7cm Lobular spread and have had mast/LD recon, 3 x FEC, 3 x Taxotere, Rads, and now on Herceptin and Arimidex.
Starfish, I was windering if you could direct me to the information you found on Lobular’s differing pattern re Secondaries?
Oh and re the MRI - absolutely.
Hi Alloway
Sorry I cannot remember which site it was. I just did lots of searching on lobular under various sites. General info I found was that it has a different pattern re mets and I found one site of a lady who had bowel cancer 10 years later - successfuly treated - following lobular - presumed to be spread from breast cancer. But I am no expert. I have just tried to inform myself of everything. My surgeon seems to have other ideas though and has been checking me - because of lymph node involvement - via usual routes ie bones, liver and lungs. So what do I know?
I just think from my point of view it helps to get all info you can. I certainly believe lobular is difficult to identify on mammograms and my tumours turned out to be twice the size of ultrasound. But none of the professionals will admit this. Well they cant can they? It would discredit screening service. Only about 10% of breast cancers are picked up on annual screenings anyway if you check. The rest are by patients themselves. I think women as a body should get together especially sufferers and lobby for annual mammograms and more education ie checks from nurses at GP surgeries. It would save the NHS a fortune in the long run and pick people like us up sooner, prevent more aggressive treatment and less mastectomies. Also if you read media they say less mastectomies are performed. As far as I can see at least about 50% of women I hear of have or finish up having a mastectomy. I have also read that 2% of money is spent on trying to find the reason for breast cancer. Far, Far more is spent on research to treat it!!
Anyway sorry for soapbox. I am just angry and maybe you are too that despite attending all screenings (2) since turning 50 last one 15 months ago I finish up having to have through no fault of my own aggressive treatment. But I guess lots of others feel that too!
Just keep searching. It may help to have some more understanding. Lobular only accounts for I think about 10% of bcs. But is rising fast.
Best wishes
Starfish x
Just found his thread and i agree with all you say starfish and here here.
I am a lobular lady and on ultra sound 1.5 by 1.7 and lumpectomy no clear margins and then mastectmy lump was 4.7cms. Had about 4 mamograms at my Dx in alsorts of different angles. Had complained of breast discomfort and probs for a year before to GP, hopeless.
I am fighting for a MRI on right breast but no luck so far have been told its routine mammograms unless i find a lump,. bit late then if you ask me.
anyway i have a lump under my arm and investigations 7th May. I had SNB and to this day i have thought it would come back and haunt me. NO Rads either another thing i was dubious about.
One thing i read recently is over 70’s are seeking more mammograms i dont begrudge them this but feel more should be being done to determine why so many younger woman are getting Bc and how they will improve the screening for under 50’s. Seems to me little research and help is done unless we are Dx with this and then its too late for some.
always enjoy ya posts
Rxxxxx
Hi Liverbird
Glad you enjoy my posts! As you know lobular is very difficult to spot on mammograms. A very interesting article in the Daily Express on Friday 25 April mentions a newer cheaper alternative to existing mammogram machines which sounds a lot more accurate.
I asked bcn if mammograms could spot lobular she said of course! And my own recent experiences of ultrasound are even more suspect. Both for bc and other things as well. I feel the inaccuracy of some of these scans is only adding to the stress we are already feeling.
I agree with others that when they look back in 20 years to the way they treated those afflicted with bc they will consider it to be barbaric. The treatment to save our lives attacks every aspect of our feminity.
There is another posting elsewhere to the effect that someone was told it is not worth repeating mammograms more frequently than every three years as it takes that time for a tumour to grow. Well I can definitely say in my case this was not so. In fifteen months I had two tumours in the same breast which contrary to findings of ultrasound turned out to be 5cm and 2cm. I intend to refuse ultrasounds in the future. I have been told they do them because they are cheap. They start with the cheaper scans and work up. I guess it makes sense but causes more stress and uncertainty.
Anyway lets all us girls push for more info and better scanning for the benefit of all. I know I hope to be eternally grateful for those who pushed for Herceptin to be freely given. As I am also HER2 positive.
Knowledge is power.
Lets all keep supporting each other and look forward to many more years of happier lives.
Starfish xxxxxxx
Hi
I too had lobular bc dx 3 years ago, and even though I had mammograms, and .FNA, it wasn’t until the core biopsies that they got a definitive conclusion. Was told by the Breast Surgeons and bc nurses that lobular bc doesn’t show up very well on mammograms at all. Even the FNA only showed a suspicion. All in all it took about 1 month before found out for definite, one test after another and having to wait for the results. I had bilateral mastectomies as was told with lobular there is a strong chance of it coming into second breast, so opted for that followed by reconstruction both sides. Curious to know if others have gone down this route or have decided to wait and see. I didn’t want to take the chance and go through it all again. Slightly wonky reconstruction because of an infection (funnily enough the breast without any cancer in, sods law!!!), but doesn’t look too bad.
Julie
Hi,
I had lobular invasive cancer plus LCIS - the tumour didn’t show up on the mammogram (I was 38) but did on the MRI and ultrasound. The LCIS didn’t show up on any of the scans so had to have WLE followed by mastectomy after the pathology results of WLE. I haven’t had rads or chemo due to clear nodes - I do worry that it will appear in my other breast but am even more worried that I’ll only find it once it becomes invasive - I have my first annual mammogram on the 19th and no ultrasound, so not very confident they’ll find anything suspect that is there.
Sally xx
Hi Julie
I was diagnosed last September with invasive lobular cancer 4.2 cm in my left breast. (ultrasound ‘showing’ 1.2 cm!) After discussions with the surgeon and an MRI scan the surgeon felt that a WLE would be appropriate. Thankfully the margins and nodes (SNB) were clear. I was concerned about my other breast but the scan was apparently showing all ok. I shall just have to wait and see. Following surgery I have gone through chemo and finish rads tomorrow. Tamoxifen for 5 years. I queried the possibilty of an MRI scan but just kept being told mammo every year - obviously costs! Is there anything we can do collectively to push MRI scans do you think?
The site is such a support and I thank everyone for posting - it is helping me through difficult times.
Val
lobular did not show up on my mammogram either, it was only through core biopsy that they found the cancer i had a mastectomy after 6 fec and then taxotere then rads am now on arimadex as had lymphnode invovlement, going to have extra ctscans as have spots on liver which they think may be secondaries from the breast. i think we should lobby for mri scans as this really is the only way to go ,but then costs are a big factor here. by the way the surgeon does not remove a healthy breast if there is no signs of cancer ,i so wanted to get the worry off my mind of reacurance in my right one but am told will have to wait untill there are definate symptoms ! as if we dont worry enough ! lynn x
Hi Val
I think you are definitely doing the right thing just to wait and see. It was ironic that it was my cancer free breast where I had the infection, so obviously with hindsight sometimes wish I had waited. Just one of those things I suppose. They said to me that there was a 30% chance of it going into the other breast, so after talking to family etc opted for the bilaterals. But I do have major moments where I think I wish I hadn’t felt panicked into it. Still I’ve got a couple of perky size Cs, instead of my droopier DDs. I would have had to have the correction surgery for the other breast anyway, which is why I thought it was the best option at the time.
I had a lumpectomy at first, but the margins weren’t clear, and they told me the right breast had pockets of cancer right through it, although left breast was clear. I just wanted to make sure I wasn’t going to go through the same again in another few years. Had a major scare a few months ago when they found two tiny suspicious areas on my liver on ultrasound, but following MRI it turned out to be a cyst and a hemangioma, thank goodness. Probably all those years of debauchery and drinking, ha ha.
Like you, I love this site too. Came on it when I was having the liver scare, not actually when I was initially diagnosed funnily enough, but felt in such a panic needed to talk to someone and one of the secondary ladies came to my aid, she was a godsend, until I finally got the all clear. I wish I had realised the site existed when I was first diagnosed.
Julie
Another Lobular here 2.1cm December 2005 and yes it is very hard to press the MRI issue even here in Ireland with insurance ! I also discussed the option of the other breast ( I was node negative ) and the surgeon advised me that the risk was so small you would have the same odds of it coming back at the " man on the street" . I did however have the good breast reduced by half after the balancing act my plastic surgeon had a few months back and all is still well. … Its very hard to move on from the whole live after BC issue, after all this time I have still not returned to work and seem to strangely view my 6 month check ups as a security blanket, however we are having alot of issues here across the water regarding misdiagnosis and locums reading CT’s wrong and calling people back many years later … disheartening
Hi Yelhsa
Was interested in your Surgeon’s comments about the risk to your other breast. My nodes were clear, but my Surgeon told me a 30% risk, of other breast involvement which seemed quite a big risk to me at the time, however, I do wish I had had the knowledge of this site as I was being diagnosed. I might have had the option to look at other peoples comments a bit more before I made my decision. It might have given me a more rounded view. However, didn’t have any comparisons or know of anybody else at the time with lobular bc. You don’t really foresee the problems, such as infections etc, that can occur, and I really thought take all the risk away, and also have two matching reconstructed breasts at the same time. Unfortunately got the infection. Still what’s done is done, can’t look back. Just sod’s law really.
Julie