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.
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 xx2021 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?
Tamoxifen and headaches
Hi there. Im new here, so sorry of this has been covdred many times before.... I had a lumpectomy of a stage 2 Lobula tumor back on February 2I020. All went well. I the n had 19 radiation treatments. Tiring but OK. I started tamoxifen late April. The first month was a breeze. I was tarting to recover from the other treatments but feeling very positive. The second month has been one long headache. Some neck pain, but also pain behind my eyes and photo phobia. According to all practitioners photo phobia is not a recognized side effect of tamoxifen. I have been visiting a phyisio who has really helped with the headaches associated with neck pain. but the pain behind my eyes is pretty much constant, and the photo phobia is meaning I cant work.... I have had an MRI and ocular exam that have not identified any reason for headaches. A friend just suggested that my symptoms could be from migraine. Has any else been through this and had headaches/migraines from tamoxifen? I have finally manage to talk to my oncologist again today who suggested stopping taking tamoxifen for two weeks to see if my symptoms improve. Sorry for the long rant. Feeling very overwhelmed and lost...
Timeline from surgery to adjuvant chemo
hi, I have been told I need chemo following a mastectomy earlier this month. I had Invasive Lobular Cancer of 9cm. They got it all and no node involvement for which im grateful. Im still healing but have been referred to on oncologist. Waiting to hear back. What is the usual timeline to begin chemo following surgery? Thanks Michele
Newbie
Hi there everyone 👋 this is my first time posting my journey so far, it has taken me awhile to do this, so apologize in advance for such a long post. First I must say how wonderful it has been reading people's posts and how lovely and caring you all are 💞 such an inspiration I was diagnosed 10/2/20 with ILC stage 2 grade 2 hormone + her2- 11mm right breast. Appointment with Breast Surgeon the next evening he suggested lumpectomy but going for a MRI 20/2/20. Results back 27/2/20 that uncovered a few small lesions so more biopsies they came back cancerous 4/3/20. So now have chosen to have a skin & nipple sparing mastectomy with tissue expander & sentinel node biopsy. Boy how things change. BS is hoping for clear margins and clear under nipple and clear nodes then no need for chemo or rads just 5 year hormones. Op booked for 9/3/20 Private Hospital. Awoke to so much pain in top of breast where the tissue expander seemed to be up to high (under my muscle). Heaps of pain killers, even the self administrating pump thingy, eventually taken to my private room (that was nice). Had one drain in, IV, oxygen, then the usual obs, pain killers & antibiotics through out the night & day. 10/3/20 still very painful like nothing was really working. Nurse took me off the IV, oxygen & self administration thingy and gave me 2 endos but even they didn't help the pressure feeling. Feeling pretty bummed. Pathology results should be back by Fri week. 12/3/20 saw physio start level 1 exercises and walking the corridors. 6/3/20 Yay going home today after 1 week. Results in 20/3/20 good margins, main tumor was actually 16mm, 3 smaller lesions, unfortunately 1 out of 4 sentinel nodes had a 4mm cancer, bugger now I'm told it's going to be chemo, rads & hormones. Being referred to the Alan Walker Centre. 31/3/20 appointments with chemo oncologist & radiologist, off for blood tests and an echo test on heart before I start chemo. 8/4/20 1st chemo cycle booked. Treatment plan is 4 cycles of AC dose dense every fortnightly then 4 cycles of Paclitaxel dose dense every fortnight, then radiotherapy 5 days a week for 5 weeks. Then hormones for 5 years. 7/4/20 Appointment with BS put 100ml in TE. 8/4/20 chemo went well, went home with a bag of medication, was waiting to feel sick or nausea but I didn't. Cycle 2 booked for 22/4/20 went well again. 28/4/20 unfortunately I had an accident this afternoon cut my shin open on some tin, rushed to emergncy ended up with a 8cm long cut and 9 stitches and had a tetnus shot. Discharged at 10.30pm with having 1 antibiotic & a script for more. 30/4/20 leg was painful getting red and had a fever 38.7 so back to emergency and was admitted straight on to IV antibiotics and lots of tests, transferred me to RDH more tests. 2/5/20 Chemo oncologist came and saw me said chemo cycle 3 booked for 6/5/20 is cancelled. 5/5/20 discharged. 7/5/20 community nurse house visit to change dressing, leg still throbbing when unelevating. 8/5/20 Appointment with BS put 75ml in TE only 75ml to go then no more GREAT! as it is such an uncomfortable process and feels like a rock. 9/5/20 concerned about leg still sore. 11/5/20 nurse came to change dressing said wound was looking ok but warmth & redness not good so went my gp and changed my antibiotics, contacted my BC nurse & she filled in my chemo oncologist he said go for your usual pre blood test & come into tomorrow for chemo depending on wound. 12/5/20 well he took one look and sent me straight to emergency RDH after they took a wound swab (to find out which bacteria bug to treat for which takes 3 days to grow). So once again admitted put on IV antibiotics, wound cleaned and packed, more tests. This is really turning into a nightmare😣. 14/4/20 finally got the swab results, so on the right antibiotic now YAY YAY. 15/4/20 one of the treating Dr's came and said the xray of your leg showed a shadow on your bone which could be that the infection could have spread to it, so off for a CT scan (just what I don't need) thankfully results came be negative 😊😊.Got discharged 4pm with take home antibiotics.16/5/20 the best sleep for the year marvelous I've been so exhausted. Nurses coming daily, finally everyday seeing improvement. So chemo cycle 3 booked for 26/5/20 depending on wound. Usual blood tests day before. YAY they decided to go ahead finally can get back on track. Feeling so much better now. 29/5/20 nurse coming out this morning. Appointment this afternoon with BS only going to go for half the fill to my TE. Chemo cycle 4 last AC booked 9/6/20. Once again sorry for the long story but thought it best to put it all out there. xx❤❤xx
Here we go again😢.
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 cancer😭. 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!😉 I wish you all a very happy Christmas and a very healthy new year to us all! ⛄❄⛄❄⛄