ILC - info on screening & latest treatments ...
On September 12, 2023, the Lobular Breast Cancer Alliance (LBCA) hosted the live webinar “What’s New in Screening and Treatment for Lobular Breast Cancer.” The program, moderated by LBCA Executive Director Laurie Hutcheson, provided attendees with an opportunity to hear from three panelists who discussed the screening and treatment of invasive lobular carcinoma (ILC) from their specific clinical perspectives. https://lobularbreastcancer.org/webinar-whats-new-in-screening-and-treatment-for-lobular-breast-cancer/ It is well worth Bookmarking Lobular Breast Cancer Alliance (LBCA) website and signing up for their emails, as they have a lot of info being updated all the time.
Here I go again!
Hi there. Newbie to this online group. I had my first diagnosis in 2006 at 46. A grade 3 ductal cancer for which I had a lumpectomy, radiation and hormone blockers. I had Tamoxifen until developed uterine polyps (3yrs) and then switched to Arimidex (another 5 yrs). My maternal aunt had BC first in her mid 30’s and then late 50’s before she died of mets in her mid 60’s. I’d had annual mammograms since 40 because of my family history but have no genetic markers. All going well until my last mammogram which showed another BC in the same breast. This time a lobular cancer. Luckily very small and no spread but still devastating. I’ve had another lumpectomy- because I would not speak the M word! I’m now recovering from that and have started hormone blockers - again. I can’t have radiation again in the same side - which I’m thankful for - and I don’t need chemo - again very grateful. However I feel my surgeon would prefer me to have had a mastectomy ( that word I will not speak of!). I see home again in a few months and I’m thinking this is what he will recommend to keep me safe. At least I’ve had time to get my head around this and find out more about it - I just didn’t feel I could make that decision in the days between my biopsy results and surgery. Anyway I’ve been reading lots of posts here and finding out more each day. I have a bit more knowledge under my belt from my previous experience and in some ways that makes it worse! I worry about the impact of hormone blockers on my long term health and my ability to keep fit and keep the weight under control. And I’m concerned about a reconstruction and how long the recovery will be. One of the worst things about the past few weeks is that we had to cancel a much anticipated overseas trip. We haven’t travelled since 2019 so we are keen to get back travelling but not to be! I keep saying to our kids I’m not sure how many good travel years we have left and there’s so much still to see! ��🤣
SELF CHECKING AFTER A DOUBLE MASTECTOMY AND LOBULAR CANCER
Hi all, I have just had my reconstruction which hasn't been successful..(that's another long story) but I am wanting to know if any one had Lobular Cancer , double mastectomy and breast implants? I was booked in for an MRI and my surgeon canceled this due to me having my tissue removed in both breasts, she then told me I have to self check my boobs as there is no screening etc. Again I left the hospital appointment with no clue how to do this self checking, and my anxiety has hit the roof thinking... I had no lumps in my breast that I felt and the mammogram picked up calcifctions not my cancer, and I was then told I have the 'Sneaky Cancer' So how do I know if the cancer returns? if technology did not pick this up, how do I do this to 'prevent' this going to my lymph.(The breast Care nurse stated that I will feel a lump in my lymph) But I don't want to get to the stage of it returning in my lymph.. Also I have the Zoledex injections every 28 days as I was high risk as near my chest wall.... how do I check the chest wall etc? My breast care nurse said to speak to my oncologist at my next appointment, to show me how to test myself, but im wondering if anyone else had a double mastectomy with lobular and how is the after care with testing? Thanks and hope you are all keeping well xx74 and newly diagnosed
Well here I am just turned 74 and diagnosed a week ago with invasive lobular carcinoma. Waiting to see oncology specialists and surgeons and find out what the treatment will be. From what the breast screen doctor and my own doctor have told me it won’t kill me and will just be a bloody nuisance and inconvenience for a while. That I can handle. Telling family and friends was the hardest part this week. Feeling a little anxious and keen to get the ball rolling and get rid of this uninvited guest in my breast. Interested in hearing from others who have experienced ILC.Making the ILC group a PRIVATE GROUP (instead of Public to the world!)
Hi guys At this point in time, the ILC and Young Women's groups are totally PUBLIC ..... anyone in the world can see the posts. I've put a request in for the ILC group to be private ..... so that we may discuss issues and developments in total privacy .... I have posted this in the ILC Group as well ..... General 'info' posts on ILC can be put in the Group AS WELL AS in the main forum, as I realise that not all members with ILC are a part of the group. But this way, if we have more personal/delicate matters to discuss, we can do so in total privacy, I know that the Group Posts are not necessarily sent to all members, so I would appreciate it if you would agitate for this to happen. I will tag @Carissa_BCNA in this post as well, to see the response, as she will help accomodate the request, dependent on the replies. Please make it a YES cheers Arpie We don't even have ILC or Invasive Lobular Cancer as a 'tag' .....2021 International Invasive Lobular Breast Cancer (ILC) Virtual Symposium-Videos of the discussions
I've put this in the Invasive Lobular Cancer Group - but I know that others may be interested in these videos as well ...... The June 2021 International Invasive Lobular Breast Cancer (ILC) Virtual Symposium was held recently - with lots of videos with different experts in Invasive Lobular Cancer. Over 740 physicians, researchers, patient advocates, patients with ILC from 36 countries participated to learn about ILC and discuss the most current research underway to better understand this unique disease. The Symposium showcased rapid progress in lobular breast cancer research with an agenda that featured presentations and discussions tackling challenges and opportunities that are ongoing in ILC diagnostics, imaging, biology and treatment and the growth of patient advocacy organisations ready to support the research. I've only watched part of the first one, (Skip the first 4 mins - they had a problem with muting!) but it looks good ... I hope the others are too. http://ilcsymposium.com/?fbclid=IwAR1Ic9GrPfjNqMhioNL7Ac1VivPIkD2nQK6D6cg3Bo4Yq-3Kn4I2ETycfXoMore info discovered about ILC & how it works & how to maybe stop it ....
For those with ILC ..... I haven't read it all & am unlikely to understand half of it - but if they are spending more time & money on one of the more nasty Breast Cancers, that is a good thing! https://actu.epfl.ch/news/scientists-model-a-peculiar-type-of-breast-cance-2/?fbclid=IwAR0vmmukbd7fni6Kd7D0KDNHdGVNrjG1si-CiEHtkk9m3bNGvVgMxa14ug8 if you are on Facebook you can follow comments here .... but you’ll need to join the ILC Sisters lobular cancer support evidence based group (as it is a private group.) https://m.facebook.com/story/graphql_permalink/?graphql_id=UzpfSTE2MzM4MjUwNzk6Vks6Mjg3MjgyOTgwNjMyMDc0Ng%3D%3D One comment from the FB page: Wow: "...when the researchers blocked all LOX enzymes, they saw a decrease in primary tumor growth, metastasis, and estrogen receptor signaling. “LOXL1 proved essential for in vivo tumor progression..." there are more links to chase on the post too.Double or single mastectomy and DIEP reconstruction?
Hi there, I wonder if anyone has any guidance for a decision that I realize is mine alone but is nevertheless a difficult one. I was diagnosed with invasive lobular carcinoma in August last year after discovering a lump in my left breast. I had a clear mammogram less than 12 months prior. Ultrasound showed it 4.5cm but subsequent MRI showed it 6 cm.I had very large breasts .At the first meeting with the surgeon (when we thought it was 4.5 cm) he discussed options of either breast conserving surgery or mastectomy on the affected breast.I was leaning toward BCS until we found it was 6 cm and he explained that there was a greater likelihood of not getting clear margins where it was lobular and given the size of the tumour I might need a mastectomy in the end anyway.I opted for a mastectomy and it turned out it was 5.5 cm .Also it extended right up the top of the breast so mastectomy was the right choice.I was lucky there was nothing in the lymph nodes.I opted to go DIEP flap surgery with the plastic surgeon inserting a tissue expander at the same time as the mastectomy and also doing a reduction on the right breast. I have since had radiotherapy and started on letrazole as the cancer is ER positive. It all happened so quickly and I had no one else in my family or even a friend who had ever had breast cancer so I was not that well educated at that time. I have since realized how many women have a double mastectomy,/reconstruction even where they don't have any family history of breast cancer or other high risk factors. I am planning to have the second stage of the reconstruction in June where the tissue expander is removed and replaced with my tummy fat .I didn't want to get an implant as I hate the idea of something foreign in my body and also the potential to have further surgery down the track to replace the implant.I realize that decision is very personal for every woman and also understand the DIEP surgery is much bigger surgery . When I saw my breast cancer surgeon last week he asked had I considered having the other breast removed and reconstruction in the same operation as the DIEP could only be done once and many of his patients opted for a double for that reason and also the peace of mind of not worrying about having cancer treatment again if it came back in the other breast. He wasn't necessarily recommending it but said it was something I needed to decide as it would be too late after the operation in June. I have got over the fact that it would have been nice to have this conversation before the first operation, and just want to make the right decision. I do have quite a bit of anxiety which has been heightened by all of this, and am leaning towards the double (I am 62, never considered myself as defined by my breasts, have an amazingly supportive husband who says "I just want you alive and will support whatever decision you make " and already will have one "foob" so why not two).On the other hand, it will add to the length of the surgery, have extra potential complications and recovery time and may not be necessary. Does anyone have any advice?