Here we go againš¢.
Haven't posted for a while as I have been recovering from a mastectomy and node clearance. They checked my other breast the day of the surgery and decided the lump they found in it was all ok, so not to worry. Well......weeks down the track and I have to go in for another mamo and then an ultrasound again. Couldnt find it on the ultrasound so had to do the biopsy using what I think was a 3D mamogram(very dignified lying on your stomach with you boob in a hole and they work from down there!). The sample came back positive.....could not believe this was happening again. It was another primary of lobular cancerš. So chemo was postponed and I now have decided to have it off to match the other one on the 11th of january. I could have had a lumpectomy but am so scared it will come back again. It was also a small primary. The other side tumor was 10 cm! So much for mamograms, neither showed up. One good thing is the surgeon is pretty sure it wont be in the lymph nodes, good because I found that the worst bit to get over. They will be doing a sentinial biopsy before the op so lots of praying and fingers crossed its not in them. My positive side of all this is I will be able to choose the size of my breasts later, definately smaller than they were! I wont be lopsided anymore.....one big boob is really annoying! Flat chested for now is looking good!š I wish you all a very happy Christmas and a very healthy new year to us all! āāāāā
Lobular Carcinoma Advocacy Group
I don't do a lot of googling about BC but every now and then I dip my toes into the general morass of information. Now, I may have come across this group before but, with my murky memory of last year, who knows? I did think it might be useful for others, though, so hence this post (although you may already know about it). It's an ILC patient advocacy group in the US. I haven't yet looked at their videos as we're hurtling fast towards no-data-end-of-month status. https://lobularbreastcancer.org/welcome/ There seems to be a number of resources on it plus info on trials around the world.
74 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 wonāt 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.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 30ās and then late 50ās before she died of mets in her mid 60ās. Iād 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. Iāve had another lumpectomy- because I would not speak the M word! Iām now recovering from that and have started hormone blockers - again. I canāt have radiation again in the same side - which Iām thankful for - and I donāt 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 Iām thinking this is what he will recommend to keep me safe. At least Iāve had time to get my head around this and find out more about it - I just didnāt feel I could make that decision in the days between my biopsy results and surgery. Anyway Iāve 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 Iām 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 havenāt travelled since 2019 so we are keen to get back travelling but not to be! I keep saying to our kids Iām not sure how many good travel years we have left and thereās so much still to see! ��š¤£ILC Webcast
@berry kindly posted this link on the ILC group but I think it may be of interest to others outside of the ILC sphere. It is a link to an event that was webcast from US on lobular carcinoma so is obviously highly skewed to this variant but the panel is drawn from different sectors of the medical profession and they do discuss things that are common to us all including screening. (Tip - skip the first 20 minutes or so as it is dead air) https://www.kaltura.com/index.php/extwidget/preview/partner_id/2207941/uiconf_id/37372271/entry_id/1_z2v70bhq/embed/dynamic? ;
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' .....
Learn more about Lobular
Hi everyone - I havenāt posted for a very long time as Iāve been mainly involved in several Facebook groups - two of them, specifically designed for people diagnosed with ILC or invasive lobular carcinoma. While thereās a separate BCNA group for lobular cancer people, thereās a ton of information out there, thatās just not getting enough distribution in Australia. The BCNA lobular podcast has some excellent information and also misses a lot of information. Iām writing now, because Iād like to share an article thatās just been written for Healthline in the USA, that sums up lobular in a easy to understand way, and highlights the need for more exposure and more research. In the article, there are great links to follow including a link to the Lobular Breast Cancer Alliance (LBCA), an all-volunteer advocacy organisation in the US and now in the UK, trying to raise the profile of ILC in all ways humanly possible. I urge any lobular peeps to check it out. Please reach out if you have any questions about online ILC resources. https://www.healthline.com/health/breast-cancer/invasive-lobular-carcinoma-is-an-understudied-form-of-breast-cancer-its-time-to-change-that#Clinical-trials-are-few-and-far-between2021 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-3Kn4I2ETycfXoDouble 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?