Invasive lobular BC

[Daffodil66]

Hi Karen, thats great news, always good to hear something encouraging. I hope those last se's go gentle wjth you & it's a bit warmer in France than here. Must be great to have chemo over with & a few weeks off before any more treatment, enjoy! X

[Wattie]

Jude thanks for the article, that made interesting reading.
spoke to oncologist here in France, and she said I will have another MRI in octobertime and not to worry they have already seen both breasts are now ok, and they would regularly check me, and I am at no more risk in getting it in other breast. Surveillance now she said is the main thing. Also I had started in the last two years taking HRT which when diagnosed last November I have stopped!
i feel happy with everything, had my last chemo yesterday and now just continue with Herceptin, rads start on the 17th June then hormone treatment.
good luck to you all and keep in touch karen x

[Cassowary]

Karen,
You might be interested in the NICE guidance, http://www.ncbi.nlm.nih.gov/books/NBK11643/pdf/TOC.pdf, you can search for the relevant sections if you would like tp. Jude

[Wattie]

Will keep you up to date x

[Cassowary]

Thanks Wattie, will be interesting to hear what you are told. My last chemo should be 27 June so a couple of days after Daffodil, but I have stuck with FEC 75 throughout, so far managing the nausea!
Jude

[Wattie]

Morning Jude
I am sorry to read of your diagnosis, I am a few stages ahead of you so please feel free to ask me anything, regarding treatment and side effects, although I am sure you are well informed, especially if you are on this site as there are such a lovely bunch to help us through our treatments. I will be discussing things with my oncologist next Wednesday so will give you all a French prescpective on things.
Good luck with things and take care
Karen x

[Cassowary]

Wattie, I am another diagnosed with ILC. January 2013, like Daffodil following first mammogram. MX in February, followed by chemo and will then be having rads, herceptin and hormone therapy. I had an MRI prior to MX to try and both confirm size of the tumour and also check that there was nothing in the other breast. I too have been told that there is a slightly increased risk of having another growth in the remaining breast, but my BS favours reduction surgery with ongoing monitoring. as I am focusing on one think at a time, I have not pressed this yet, but like others above, it is a concern and I will be asking more questions to helpme see the way forward.
Take care, Jude

[Wattie]

Caroline
thanks for posting, a matching pair, how lucky are you!? Well done on getting through your treatment, and good luck for your next surgery. I do think if I was in the same situation as you I would consider having an MRI privately. Well done on getting through your first screening, I am sure you will be well looked after, as I've heard they keep a good eye on you after ILC.
keep in touch and let us know how your new surgery goes.
Karen x

[carrie37]

Hi karen,
Just saw your post. I was diagnosed with ILC in January 2012. 2 areas, 17mm found on routine mastectomy (1st ever one!) and 7mm found later on MRI - Grade 2, no nodes involved. Had therapeutic mammoplasty (breast reduction) as total area too big for lumpectomy, and I didn't want a mastectomy. Had radiotherapy after surgery and now on hormone therapy. Just waiting to have a reduction on "good side" so I have a matching pair!
I have asked for MRI screening, especially as some of my cancer was only found this way, but the hospital have refused saying the NHS will only screen by mammogram.
I had my first post BC screening in January, which was fine, but I can't help but feel a bit nervous that it wasn't all seen the first time on the mammogram, and have even considered paying privately for an MRI.
Hope all goes well for you.
Caroline
x

[Wattie]

Hi ladies and a big thank you for all replying as it is so good to not feel so alone as I now know some fellow ILC ladies.
IBX157 you are a great inspiration and I did feel slightly anxious about this diagnosis.
I have to remember that everybody is different. I am having my treatment in France and that have not discussed a mx with me at all, they just said that ILC is very difficult to pick up on a mammogram and therefore they may give me regular MRI on both breasts to keep an eye on things. I would have no hesitation in a double mx I was fully prepared for iron diagnosis.
Daffodil good luck with your next treatments I found the Taxotere better than the awfull nausea that FEC gave me.
Frances I too am very lucky to have a supportive OH to was right behind me with whatever I decide, it does help.
Lilac you are a true inspiration x
hope you all keep in touch karen x

[Daffodil66]

Hi, Thankyou ladies it helps to hear from others that have been through this & decisions on treatment.

Wattie - I think we have a higher chance of getting it in the other breast? My last chemo is 24th June, just changed to tax so getting used to different se's. Just recently I have been thinking about having an mx on good breast whilst having recon next year. Mentioned this to bcn last week & she said I could but they will go through my options when I go to see the surgeon in June. So will decide then. They seem to like us taking one step at a time! Which is understandable. I hope your last session goes well this week x

[faj123]

Hi. I was diagnosed in December 2011 with invasive lobular cancer- picked up on routine mammogram. made decision to have mastectomy with imm recon in february 2012. had chemo but no radiotherapy.. mammogram on other breast clear in february this year but it is a worry that it will come back in that breast. now on tamoxifen- few side effects but i can live with that. I feel really well now and dont regret decision at all! I had LD recon with implant- its not the same but I'm getting used to it. Have a very supportive partner which helps.
With best wishes.
Frances.

[Lilac51]

Hi, I was diagnosed with ILC (feel a bit weird calling it that as at work ILC stands for Independent Living Centre!) in November 2011. Maybe I had a bit of a knee jerk reaction but when I was offered a lumpectomy I asked the surgeon to just do a mastectomy and get it over and done with. My sister and mum had both had lobular cancer, and my grandmother and aunt both had BC but I don't know what sort. I had chemo and rads as it had spread to the lymph nodes. Then I made a nuisance of myself asking for the other breast to be removed, which was what I'd wanted from the start. I had a mammogram and a MRI scan and nothing sinister showed up but after a psychological assessment I was allowed to have a second mastectomy in November 2012. I don't know whether it was just a gut feeling I'd had but I wasn't too surprised when they found another bloomin' lobular lump in the 'healthy' tissue sent off for testing. Fortunately I didn't need chemo or rads the second time around. I'm going to have a bilateral reconstruction some time next year but with hindsight I wish I'd stuck to my guns and insisted on having a bilateral mastectomy with immediate recon. It would have saved such a lot of time, but I suppose the main thing is I feel fine now.
Wishing you all the best xx

[lbx157]

Hi there,
I'm not sure that I can help really because I am a lot further down the road than you but I just wanted to share my story as good news stories are sometimes very hard to find. I was diagnosed with invasive lobular cancer in 1998. My tumour was also 11 mm & 5 out of 11 of my lymph nodes were cancerous. I had a lumpectomy, chemo, radio & 5 years of Tamoxifen (I was lucky & had no side effects at all). I was given the all clear after 5 years but 4 months later the cancer came back in the same breast. I then had a mastectomy & am now on Arimidex. That was in 2004 and 9 years later I am fighting fit, healthy & no sign of any cancer. I often wish I had had a mastectomy first time round as then I possibly wouldn't have had to endure a recurrence of the cancer but I went along with what the doctor advised at the time & I can't change things now.
Good luck on your own journey, there will be light at the end of the tunnel
lbx157

[Wattie]

Hi Daffodil, that's interesting, do they say it is more likely to recurr in the same breast or the other. I am off for my final chemo next Wednesday so will chat to my oncologist and see what she says. Do people tend to have mme Mx with lobular?
when are you finishing your chemo, hope it is going as well as can be expected?!
karen x

[Daffodil66]

Hi Ladies, I also have lobular cancer & am having chemo first then surgery. Which will probably be an mx as lump is breaking up rather than shrinking. I had an mri before chemo to check the size as ultra sound wasn't that accurate as lobulars are hard to measure & to check other breast too. Which was fine but have read & been told that we have a higher chance of getting it in the future. I'm seeing my bs next month so will ask lots of questions then. Just coping with the chemo for now x

[Wattie]

Hi Jackie
Thanks for replying, it's great to feel not alone as there does not seem to be many of us out there. I had a mammogram and by BC was not picked up it was me who felt a lump, so I w lucky. The Consultants over here say that ILC is difficult to pick up with a mammogram. I am having my treatment in France, what do they say about ILC in uk? Have they offered you regular MRI of your other breast? Hope you are doing well now and recovering well? Dd you try tamoxifen? Was it really horrid?
Keep in touch, karen x

[jackster50]

Hi Karen
Diagnosed April 2012. ILC, multifocal with 4.11 cm lump(s). Had masectomy, chemo and rads. Declined tamoxifen as the SE were horrible.
Jackie x

[Lucy_BCC]

Bumping this up for Karen

[Wattie]

Hello just wanted to link up with any other ladies who have been diagnosed with this. I was diagnosed in November 2012, 11mm, grade 3, Her2+, 2/13 nodes no vascular invasion. I live in France and am having all my treatment here. Lumpectomy on 6th December, chemo, herceptin, rads and hormone therapy.
I have great support and chats as part of the February valentines, but would be keen to hear from any fellow ilc girls.
karen x