hello i had lobular in left breast and am now going for a ct scan tomorrow on right breast as have similar pain as before hopefully it wont be cancer again but they only found my cancer through having a biopdsy done in day surgery, i think there is a jhigher risk of it coming back in the other breast but my surgeon does not offer bilateral mastectomy unless proven in both breasts. i jus y wish they had done the lot together as i want to get backk to normal whater normal is!! now i have to wait again for results of this new scan and go through all of the treatment again if it does turn out to be so! lynn xx
Hi Aroma,
I have to agree. My lobular was only dx with biopses, I was told originally that the lump I had was fibrous tissue because of being on HRT because nothing showed on mammogram or ultrasound. I paid for an MRI scan to check the other side because I read that there was a higher risk of it being in both. The results said the other side was OK as far as they could tell so my surgeon would only deal with the side that was proven ILC. I had mx and immediate LD recon. in Nov last year. I am on tamoxifen to reduce chances of recurrence and I am going to have radiotherapy as an insurance policy as my tumour was 4.8cm and therefore close to the chest wall and skin ( my boobs aren’t that big) . There was also LCIS in the tissue they removed so now I live and hope that the other side is kept under control with the tamoxifen.
I wish you luck with the scan, let us know what happens.
Hi Aroma,
I was diagnosed with lobular in the right breast in July 06 and DCIS in the same breast, my surgeon advised a double mastectomy because of the higher risk in the other breast. I wasn’t allowed immediate recon as they were unsure at that stage whether I would need chemo or rads. Luckily I didn’t need either, I didn’t cope very well having the bilateral mast I was very unhappy and my self confidence plummeted big style. I am now on tamoxifen for 5 years and monthly zoladex injections for 2 years. After 9 long months I had the recon using the ld procedure (skin and muscle from the back) I feel so much better now having my shape back, still got the nipple recon and tatooing to be done (nipple recon on the 26th Feb).
There is a light at the end of the tunnel so keep positve I hope your results are good, please keep in tough and let us know how you are
Take care
Karen
Hiya,
I had lobular cancer too. My consultant would have removed both breasts at the same time as the one without tumours had extensive LCIS (as did the other), but he was concerned that my recovery would be slow if I needed chemo (I didn’t.)
My lobular cancer was discovered at my first routine mammogram. Ultrasound confirmed it.
I am having another mastectomy in April.
Hope your tests come back clear.
Jacki x
Hi
I have not had a mastectomy, chose WLE for lobular invasive tumour. How would they know if I had LCIS in either breast? I keep thinking that maybe there could be something in the other breast, how can I tell? I know there will always be that uncertainty. I have wondered if I should have chosen mastectomy, a much safer option, or not, I really don’t know. I still have a little more surgery since not all margins were clear.
Lynn when do you get your results?
Take care
Alice : )
Hi to all lobular ladies
Firstly, I very much wish the moderator would take on my suggestion (have asked at least three times) for a heading for Lobular BC. We have one for DCIS/LCIS so I cannot see what the problem is. On that note, when are the profiles coming back?
I also had lobular BC with extensive lymph node involvement (Stage 3b). Having been misdiagnosed has given me insight to my medical records. I have just recently noticed through having access to these notes that my left breast (not the one I had invasive lobular breast cancer in) has calcifications. The calcifications had slightly increased in my last mammogram - taken 2006. However, I live in an area where mammograms are only done every two years and I have to say I’m getting quite anxious about my next mammogram, due on 19 February. I know some areas are mammogrammed every year and when I asked my consultant why I wasn’t getting mammogrammed yearly he said too many mammograms can in fact give you BC. I had also read on this website that it was better to get an MRI scan. I phoned my BCN last week to ask if I could have an MRI scan instead of a mammogram in light of my circumstances - lobular + calcifications etc. She said she didn’t think so but we can discuss it further when I meet with my consultant. I would be interested to hear your thoughts on this one.
Wishing you all well.
Love
Jeannie
Hi
I would like to join this thread too.
I was diagnosed with invasive lobular cancer in Sept 07 in my left breast. I had an MRI scan to prior to surgery as the surgeon wanted to give me a thorough check over both breasts before surgery. I did ask about mastectomy (both breasts) but the surgeon thought this was not necessary. Initially they thought the tumour was 1.2 cm but after the scan a couple of weeks later it turned out to be 4.2cms. As far as they could tell there were no signs in the other breast. I was also given extensive ultrasound scans. I was told it was a 'good’cancer to get as it was slow growing? I had a WLE and SNB (no node involvement). I am now going through 6 FEC (no 5 next Thurs) followed by rads and tamoxifen for 5 years - er and pr strongly + HRE2-. I asked the onc last week about what happens for check ups and he said it would just be an annual mammogramme I pushed further to see if an MRI scan was possible as it was difficult to detect but it appears not! I suppose you could have a go privately for a scan but the cost I feel would be prohibitive. Just wondered what experiences others have on check ups and treatments.
I wish Lynne well and hope she lets us know how she gets on.
Take care all of you.
Val
Hi Val and fellow lobular ladies!!
or anyone who knows
What can the MRI see/pick up that cannot be picked up on ultrasound scan or/and mammograms?
Alice
Hi Alice
You are welcome to send in your query to our ‘Ask the Nurse’ email service if you wish, you can access this via the ‘Support for you’ tab at the top of this page. Alternatively, feel free to call our team of specialist nurses on the helpline for more information on 0808 800 6000, it’s open Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Dear Val
My BCN said last week that she did not think I would be able to get a private MRI scan. I did not take this any further with her because it was very clear that she was not in favour of it. I will be questioning my consultant on 19 February as to why they say mammography is the best follow-up care, even with lobular which is clearly difficult to detect on mammograms. I would be interested to know what part of the country you are in (profiles would help) as you are obviously getting yearly mammograms. Would also be interested to know if there is anyone from the Glasgow area getting yearly mammograms? I understand that Tayside is also two yearly.
I will keep you advised of my progress after 19 February.
Love
Jeannie
Hi All
I was diagnosed with invasive lobular cancer in my right breast at my first mammogram, aged 50, in 2003. Wasn’t told much about lobular cancer and what I have learned about it I have had to pick up from books and forums like this. I gather it affects about 10% of people with breast cancer, is most common in women aged 45 to 55 and is slightly more likely to recur in the other breast. My tumour was 2.1cm with no lymph node involvement and I had a WLE, chemo and radiotherapy as recommended by my team (I had to choose whether or not to have chemo and am not sure now whether this was such a good idea). Initially I was offered appointments every year and mammograms every 2 years, but this policy in my area has now changed so mammograms are offered every 18 months (my next one is tomorrow morning - gulp). I have never been offered any other scans or tests at all and have just been discharged by my oncologist (though I am still on Arimidex). I will see my surgeon in another year’s time and it was suggested that I would then be discharged completely.
So far I feel that I am a success story (but fingers crossed for tomorrow).
Can’t really answer any of your questions on scans as I don’t know enough about them.
Jeannie - I agree that it would be good to have a Lobular Cancer heading.
Lynn - do hope your results are good.
Love
Gwyn
Hi everyone
I too am an invasive lobular lady. Dx Dec 06, found it myself with puckered skin and a small thickening rather than lump (age 44 then). Had WLE, SNB - no nodes involved, 12mm lump (told thats small for lobular), no chemo, 5 weeks rads and 5 years tamoxifen as strongly ER /PR + Was told lobular does tend to be slow growing and is generally ER+ but often not found until bigger. I have just had my year checkup with consultant and mammogram - so far so good. I have been moved to seeing cons every 6 months instead of 3 months and will have an annual mammogram on both sides. My cons still prefers mammograms as an annual monitoring and says that lobular has only a very slight increased risk of coming back over ductal.
Take care everyone
Love Shorty
xx
Hi again
Have just asked my husband (a techie) about scans and he says that MRI scans are much better in general than X rays (like mammograms) at showing images of soft tissue such as breasts. I believe MRI scans are also supposed to be safer because they don’t use radiation. But the machinery is much more expensive so won’t be as available. It is the newest technology, so still very much under development. CT scans have the same disadvantages as other X rays (i.e. extra radiation load) but do give a 3D picture, which would presumably show more.
Love
Gwyn
Hi all,
I was dx in May 07 with ILC, had WLE and SNB, tumour was 15 mm, 2 SN’s both positive, also LCIS in the margins, ER+pos, PR+pos, HER2 neg went on to have 6x FEC chemo, followed by AND and currently awaiting 30 rads and arimidex, (sorry about the lingo…). I was 43 at dx and my ILC did not show on mammogram - like shorty2 I found it myself - thickening + change in skin. After WLE I pushed to have MRI, as all recent research suggest this is the best imaging tool in diagnosing lobular (I had done my homework and read everything I could find about ILC). My local NHS hospital does not have the equipment to do breast MRIs, but they referred me to a local private hospital. Luckily the MRI did not reveal any further problems. I have mentioned to my consultant when discussing follow-up that I don’t see much point in going for yearly mammos - and I will not settle for anything less than mammos, ultrasound + MRI in the future - they have not yet agreed to this, but they will!
One of the problems with MRI is that apart from finding more lobular cancers it also show more false positive results (looks like cancer but turns out not to be) and so leads to a higher number of unnecessary biopsies + associated worries in the patients etc. In her breast cancer book Dr Susan Love refers to studies that have revealed cancers identified by mammogram, which were missed by MRI - so I guess no single method is 100 %.
aroma - I hope your scan went well and that everything turned out good for you.
Hugs
Anneli
Hello everyone…at last I’ve found the lobular ladiers section I was starting to fret I was the only one…my name is Liz I am 36 and was diagnosed with invasive lobular tumour on the 21st December 2007…I suddenly noticed a dip in my nipple and a thickening area. I was very breast aware and it scared the pants off me. I had a mirena coil put in last year which wasen’t working properly so the GP had put me on a dose of the pill for 3 months to get my periods back in to line and it was the pill that caused the lump to show .Anyway I was mad as I had been refused a mammo that I had requested at 35 and I had found a small lump on the other breast which they ultrasounded and both breasts were checked by consultant.
Anyway it has been a massive rollarcoster ride since 21st December, the surgeon gave me an MRI which gave us the option of shrinking the tumour with chemo to save the breast or a masectomy…I chose a masectomy which was done on the 8th Jan 2008, 9/16 lymph nodes involved so the treatment plan is 6 months on chemo, 3 weeks of radiation and 5 years of hormone therapy. I had my first chemo last monday but my life seems to have changed and I have been having ups and downs. I asked the surgeon about masectomy on the other breast but the MRI scan showed all was clear so he woulden’t. Does lobular cancer have good survival rates? His figures were good but I just don’t know I know I’m young to get it…I have 3 young gorgous children 10,8,4 and would love to speak to anyone who is going through the same as me…
Hi liz123,
Welcome to the club none of us wants to be a member of… Good that you’ve found this place - the support you’ll get here is amazing! Regarding survival rates for lobular cancer there is not really much difference when compared to ductal. One of the positives (and it is worth hanging on to these) is that ilc tends to be hormone receptor positive more often than not - and this provides for some really good long term treatment options, ie anti hormone treatment etc. Lobular carcinoma can be more difficult to detect and therefore they are often larger in size at dx than ductal - this, and associated higher risk of node involvement, is regarded as the main reason for there not being any real difference in 5 and 10 year overall survival rates between ductal and lobular. Your oncologist should be able to give you a good idea of your prognosis based on the histology of your particular ilc. Hope this helps.
Hugs
Anneli
hi Anneli
Thanks for your help, I had looked on the site at Christmas but I was in such a state and coulden’t find the lobular section so I feel kind of comforted when I found it last night. How old are you? If I do the treatment plan chemo, rads,horm the 10 year statistics were good and in some ways as awful as it is to be a member of this club I kind of think I was very lucky to find it when I did…so I have to just knuckle down and get on with the chemo and everything else they can throw at it and just hope for the best outcome.
Hugs to you too…I was feeling very alone if you know what I mean even though I have a great husband and family my mind was going mad with worry.
Lizzie x
Hi It is exactly a year since I was diagnosed at 62 years old. Lobular cancer and ductal cancer in right breast, “anomalies/calcification” in left breast. Bi lateral mastectomy carried out at my request (family history). “Anomalies” turned out to be DCIS and there were 3 tumours in right breast - 1 lobular and 2 ductal, all about 1.8 cm one of which had not shown up on any test/biopsy which was a bit worrying! 2 out of 4 lymph node involvement. 4 x FEC followed by 3 x Docytaxel; then 4 weeks of radiotherapy. Am now on Arimidex. When I asked oncologist for a prognosis I was informed 50% in 5 years. I am still wondering - 50% chance I’ll be dead in 5 years or 50% chance it will reoccur! By the same token it’s a 50% chance it won’t - I’m looking on the bright side! I feel great.
I am lucky I think! I don’t have to wear a bra any more and don’t!
Good luck to everyone.
Sharon
Hi Lizzie
I am another lobular lady with 15/19 positive lymph nodes. My oncologist said to me that there was no real difference between lobular and ductal as far as prognosis was concerned and like Anneli has said, lobular is usually ER+ and PR+ which means there are plenty of treatment options. However, it has a higher chance of spreading to the other breast than ductal and it is for this reason that it is very important to check your breasts regularly.
I’m having my two-yearly mammogram on Tuesday. I get a little anxious before appointments so I’m keeping my fingers crossed that all is well.
Wishing you well with your treatment.
Love
Jeannie
Hi everyone
It is great to know you are not alone. I have a wonderful supportive husband and family but it is good to read how other people deal with the BC.
I was dx with ILC on 11th Feb and had MRI on 13th Feb. The result being the lump was larger (5cm by 5cm) than the doctor first thought (not that large compared to some of yours) and I have to have a masectomy on 29th Feb. Still am at the weeping stage. It is very worrying about the possibility of getting it in the other breast.
Best of luck to everyone.
Jane