Thanks for the reply BunnyMum.
I shall just keep my fingers crossed. I don't know what my remaining breast should feel like now as it has changed a lot since stopping HRT and I have nothing to compare it with!
I'll get my surgeon to check it when I go back for the nipple recon. and he can tell me what should be there.
In reply to your question: How did they dx the LCIS
I never check my breasts cos they are too lumpy for me to know what's what. Twice a year I have my GP check. My GP said she thought she felt a cyst and cos my grandmother and aunt had mastectomies at young ages, she sent me to have a mammogram. (I was 46.) It was on my first mammo that the tumours and LCIS were detected. I think they called it calcification. The radiologist obviously saw something -- I had lots of 'pictures' taken that day and she told me about the calcifications then.
Maybe my LCIS showed up cos I have a lot of it?
Also invasive lobular 11mm in left breast 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 the cancer was picked up. Due to it being lobular and its position under the nipple I had a mastectomy and lymph node clearance - they were clear. Then it was a case of choices based on stats.
As there was only a 1mm margin between the margin and the chest wall the chances of recurrence in that area was betwee 5-10% radio would reduce it to 2-3% so had radio.
Asked about stats for recurrance in other breast but told stats only relate to general recurrance and in my case that was 7.9% chemo would reduce it by 1.6% but not offered it and tamoxifen by 2.4% Did start taking Tamoxifen but gave up after 12 days am thinking of trying again but the oncologist says its up to me.
You are right 'Liverbird '- what hard choices we have to make - I also don't like it.
I am a invasive lobular Bc too. I think mine ws there for a yr befroe DX GP failed me and treated me for infection as i had a sore area. I am sorry in one way it settled down as i would have pursued it more if it hadnt.
Sept 2005 another GP didnt think it was cancer but i wasnt happy and got referred by another GP. Like someone said above i had about 3 lots of mammograms. My breast was puckered thats how i knew i had cancer,
Even on the ultra sound they said the lump was 1.5 by 1.9.
I had a lumpectomy and SNB. All glands clear out of the 4 they took but no cleareance on the lump. When i had the mastectomy results the lump was 4.6cm however my onc said lobular is hard to size as it is like a splat of paint. Rather worried me as i thought if i hadnt had the mastectomy some of it could have been left behind.
I had to see a psychologist about my choice of a further mastectomy and was going on the surgeons list, but i just had a complete change of mind at the time. I think its because i feel generally unwell and couldnt face surgery.
The surgeon was clear though in pointing out to me that my greatest threat was secondary cancer not re-occurrance, (very blunt).
I have asked about MRI scans on my remaining breast but had no luck so far just being told that unless they are actually concerned or there is a lump they wont give them. Rather stupid if you ask me and a bit too late if there is a lump growing there undetectable through mammograms and ultra sound. However we are talkin NHS here. You can get anything if you go privately.
Its only us who can decide what further treatment we have my friend has had both breasts removed and her ovaries and is happy with her decision.
I feel i have had chemo and am on tamoxifen although i hate it especially the weight gain, and so at the moment thats all i want and to be well. I do think though in the future i will have another mastectomy. I dont feel like one of the above posts that my breasts have let me down i am very protective of the remaining breast it makes me feel sexually i am still slightly normal. yet i do think often if this darn cancer is there in that breast undetected it will be spreading.
I lost my mum and autn to this disease so have had gene tests but they are negative.
What hard decisions we have to make, I dont like it at all.
I think it depends on how dense the breast tissue is as to whether things show up or not. I had been on HRT so my tissue was more dense than it would otherwise have been and made it more difficult. Maybe next time I have a scan things will be clearer, I just hope they don't find anything.
The size of the tumour and number of nodes involved is what determines what treatment is needed, they have to draw the lines somewhere. My tumour was 4.8cm so I was borderline for chemo and refused it. An extra 2mm and I would have been more likely to gain greater benefit fron having it. As it was only going to give me 4% extra to live for 10 years I decided it wasn't worth it. The tamoxifen is giving me most advantage. As I said before, I had the rads for my own peace of mind and the oncologist says it has given me an extra 2% so I have gained 7-8 % overall without the chemo and I am happy with that.
Get your list ready. Good luck
Abismum, yes I need to ask questions, it is asking the right ones and getting them asked and answered clearly. For a start I had small grade 2 invasive lump 19mm had it been a futher mm would have been more likely to have gone chemo route or not?!. If lobular is difficult to find (well I found mine because of where it was, but..), am I right to think that even ultrasound scan does not always pick it up? If that is the case why not an MRI?
You are not being over dramatic if you ask questions, it is the only way to put your mind at rest. Make a list and ask away!
How did they dx the LCIS ? Nothing showed up on my MRI scan of other side as far as they could tell, I still considered the report inconclusive, but the consultant did not want to do anything with a seeming healthy breast. Like Sally. I too would have liked a double mx so that I could stop worrying.
Well there is so much uncertainty still, the nature of any bc really. Still leaves me unsure especially as lobular it is more difficult to find. It seems quite a few people choose mastectomies and more was found than originally identified. When I was first given the choice I did not think it through and really did not discuss in any depth with anyone with any real knowledge. I was not even aware about recon. if I had chosen mastectomy. Clearly a communication problem here. For me I feel if I bring things up when I see consultant I feel I am being over dramatic. Alicex
I had invasive lobular cancer in my left breast (diag Feb 07) - two small tumours (6mm and 12mm) and extensive LCIS in both breasts. I had the left breast removed and because of the LCIS in the remaining breast, I am having another mastectomy in a couple of weeks. No recon.
I have posted this on behalf of new user Carol.
Hi, i was dx with invasive lobular cancer in jan 08, initially nothing showed on the mamogram and 7mm lump showed in the left breast on the scan, they took a sample which was sent to the lab for results there and then which was clear and a biopsy which confirmed the cancer at an app two weeks later, the cons suggested a lumpectomy and an MRI. I left the hospital in complete shock and it took almost a week to sink in, when i thought about it and researched lobular cancer i decided that i didnt want to live a life (being 48) worrying about it recurring in the other breast and decided that i wanted a double mx with reconstruction, when i put this to the breat cons he was very sympathetic and referred me directly to a plastics surgeon. the mri showed a 3.5cm tumour with smaller areas in the left breast and a 7mm unknown area in the right breast. this just confirmed my choice! i had my op on feb 18th and also had the first of a two stage reconstuction, breast expanders!
My histology report showed a 2cm tumour in the left breast and no cancer in the right breast, all lymphnodes clear. i am still happy with the choice i made with having both breasts removed, lobular cancer is hard to detect and likely to reccur, it is also harder to screen for, and my experience showed the screening incosistent. Nobody could tell me the risk of recurrance but the overall risk of breast cancer is frightingly 1 in 9 anyway. whilst in hospital i met one woman whose cancer returned after 11 years and one after 20 years!
As my cancer was oestregen receptive i am now on zoladex and tamoxifen.
I have to say how helpful this forum is, but one thing i have learnt in the last few months is that although we may all have breast cancer, our treamtent and surgery is as individual as we are ourselves.
wishing you all the best, carol
hello i was diognosed with lobular may 2006,i had a 4cm area which shrunlk to 1 cm with chemo,then had a mastectomy further chemo as a mop up as 12 of my lymphnodes were affected as well i had a course of rads and am now on arimadex,i wondered wether it would happen again in right breast but surgeon reluctant to remove a (healthy)!! breast needlessly,must say i do worry about it coming back and every little ache and pain i get paroniod about, recently been having furhter pain and have had a liver ultrasound (waiting for results of that as we speak). so i think it should be everywomans right to have both breasts removed at the same time especially as there is a chance of reacurrance. mine wasnt found by mamogram either just by core biopsy and that was after id insisted that my boob should not look like a squashed orange! wish you well with you treatments ,take care love lynn xx
I was diagnosed with lobular cancer in 1995 and due to my strong family history (am awaiting genetic test) and that I was told there was a higher chance of it spreading to my other breast I was kept on Tamoxifen for 10 years.
I am firmly convinced that it kept my cancer at bay for all those years although I am now living with secondaries (for the past 3.5 years) but, surprisingly, not to the other breast!
I was dxd with invasive lobular a year ago after I found a very small lump - only 12mm and I'm a 32E! I only found it as my breast hurt one evening when I took my bra off - like just before your period - stopped hurting when I found it - weird! Anyway, I found it straight away but my consultant never could, and it didn't show up on the mammogram, but did on the ultrasound. I had a MRI to see if there were any other things going on in there, which came back clear so I had a WLE and SNB at the same time. The nodes were clear, but I had LCIS in the rest of my breast so had to have mastectomy and immediate DIEP reconstruction. I said I thought the MRI was clear, and my consultant said he thought it was "but if you look really closely, you can see the LCIS"! I almost said so why didn't you look really closely in the first place and I could have had just one op instead of two - too polite though! Didn't have to have rads or chemo though, which is good. Have been on tamoxifen since September - not too bad at all, but have just become breathless recently so that's being looked into at the moment.
Anyway, I do worry about it coming back in the other side but only have annual mammograms (haven't had one yet and wouldn't trust it anyway) and 6 monthly check ups. Sometimes I wish I could have the other one off as I worry, what if I don't find it until it's spread into the nodes this time? Then I could just forget about it.
All the best!
There is a slightly greater risk of ILC being in both breasts, I too was worried as I had a large lump that was not dx for 6 months, I was told it was fibrous tissue due to hrt, but core biopses proved otherwise. I paid for an MRI scan to check the other side as nothing showed on any other screening methods. That seemed to be ok and the surgeon would only deal with the one side. I had mx and immediate LD recon. The tumour was 4.8cm and there was lcis in the rest of the tissue. Lobular spreads in an irregular way, so I knew mx was the best option. I also then had rads. (I did not have an implant so that was ok) because of the size of the tumour and how close it was to the skin and chest wall. I am only 34c so there was not much space!
I am on Tamoxifen to reduce the chances of recurrence and something happening in the other side.
Just to say good luck with the tamoxifen. I hope you're like me with it - a few hot flushes here and there, sometimes worse in the night but as I don't have that many they're bearable. I've gained a bit of a spare tyre round my middle but not sure I can blame the tamoxifen as I've been eating more lately - must join that gym!
Unfortunately I still have heavy periods every month but on the plus side the sex drive has actually increased (didn't actually have a lot to increase from!!) - but bonus for hubby there!! I've been taking tamoxifen for exactly a year now so I assume every thing side effect wise should have kicked in by now. Anyway good luck with it!
It wasn't really difficult to decide on the double mx. I asked for it as soon as they gave me the bad news. I'd lost my own mum to bc when I was 13 and it had been on my mind ever since that my breasts were "defective". This may sound strange but I hated my breasts for what they'd done to me and wanted shut of them both!! Also, I thought that at least if I had a reconstruction done then it would probably be easier to get a symmetrical result if they operated on both rather than just one and trying to match it up. It's different for everyone though. What was the right decision for me might not be right for someone else. I have to say that I've never regretted my decision nor mourned the loss of my old breasts. The weird thing about the reconstruction is that you still keep most of the skin (minus the nipple area) so it's not as though you've lost the whole breast as such anyway, just the inside bits.
Shorty - like you say, mine is strongly ER and PR+. I've just started Tamoxifen - 3 pills down, only about 1800 to go, lol!!
From finishing rads last April ( didn't have chemo) I was on 3 monthly checks with consultant, had mammo (1 year after surgery ) at end of Jan 08, saw cons beginning of Feb and he has now put me on 6 monthly appointments, with a mammo every January. It's nice not to have to go to the hospital as much but it was also a bit of a comfort going! He is adamant that with the tamoxifen and his checkups and me checking that if there was anything it would be caught early enough again. I am 45 now and didn't have mastectomy but WLE.
Will be interested what your onc says when you see him.
Thanks for the replies. Nicola it must have been a difficult decision to go for the double mast.? Or did you just know that was what you should do? Did they find any other probs. or was it just the one lump? I have lumpyish breasts more noticable I think having lost a lot of weight since diognosis, not that I was big in the first place 36B, 34! None of the docs. found my lump I had to show them where it was. I will talk to onc. when I see him in a few weeks, although I find it quite difficult having a discussion with him, probably my own fault. Shorty how often do you have check-up? Take care Alicex
HI Alice and Nicola,
I had a 12mm lobular , dx in Dec 2006. I initially had puckering of the skin but could then feel a thickening rather than a lump. I gather I found it early for lobular. My consultant said that there is only a very small increased chance over ductal of it occuring on the other side. He also said that the tamoxifen would be working on the other side as well (I'm assuming you're on tamoxifen as most lobulars are ER+) and that I'm having regular checkups and mammograms and lobular tends to be slower growing.
I still regularly check myself as well but I know it doesn't stop the worries and the what ifs.
Hoping this helps.
There's some more information here:
I was originally dx'd with a 12mm ductal invasive cancer. I elected to have a double mx because of family history. After surgery, the pathology report showed that it was in fact a 3cm lobular cancer. Because of my family history, it is likely in my case to be genetic and my sister has been told that she should have MRI screening as mammograms don't work as well for this type of cancer. Because she is deemed high risk (she is 39, I was 35 when dx'd) and has dense breast tissue on her mammogram, she is eligible for MRI on the NHS although it is still proving an uphill battle to actually get this.
20 mmm for a lobular sounds like a pretty good prognosis to me. I was told that they tend to be bigger at dx because more difficult to detect but the outcome/prognosis is the same as for ductal. I felt mine as a lump before I had the mammogram - they had to re-do the mammogram a few times so I wonder if they would have found it on the mammogram if I hadn't also felt a lump. Mine was right at the back of the breast and within 1mm of the chest wall but I was a B/C cup so could still feel it there. It was much easier to "find" than a previous harmless cyst that was in a similar position.
Hope this helps. Don't be afraid to ask your oncologist lots of qus. I write them down and sometimes write down the answers whilst they're talking!
Hi ladies this is quust a general question with regard to invasive lobular cancer.
I am aware that it is more likely to occur on the opposite breast, does anyone know how much more likely and why? Also understand it can be difficult to find until it is fairly large, although mine was only 19mms being right at side of the breast. How will I know if it does recurr on same or opposite breast if it is further in?