27 year old lobular carcinoma
Hi there, I’m 27 and based in Brisbane just now. 12 days ago I was diagnosed with invasive lobular carcinoma. I don’t yet know lymph involvement but am guessing it’s likely (nothing showed on USS or palpable however.) My surgeon has recommended a full lymph clearance. Is there anyone else out there this young with lobular? My biggest fear is leaving my husband behind without any children, what if my illness causes him to miss his chance of having kids with someone else one day? Unfortunately I’m a nurse so know a bit too much about what I’m about to go through. I have a mastectomy in 3 days and axillary clearance. Trying to remain positive. At what point did you ladies meet your oncologist? I’m not meeting them until next week when the final pathology/sizing etc is back after surgery and they’ve had an MDT to decide my treatment plan. Is this normal? I’m public.
Invasive Lobular Cancer (ILC)
Hi all, I have just discovered that ILC is lumped into general ductal breast cancer. America research have started to recognise there are huge differences. Treatment in Australia is the same as ductal cancer and even the metastasized areas are generally different to ductal cancers.. Australian research and recognition is way off. Does anyone else who has/had ILC been misinformed? kindly Berry
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 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.
Panic Mode
Hi Everyone, I am 48 years old and have been diagnosed with Invasive Lobular Carcinoma. I am scheduled to have a bilateral mastectomy this Tuesday 24/7/18. Any further treatment to be determined after surgery. I am at the beginning of my breast cancer journey, and somewhat aware of the difficulties ahead for me. My mother had breast cancer 10 years ago and I had investigations for a lump that turned out to be a cyst about 14 years ago, so I was having bi annual mammograms. My cancer was picked up in a mammogram on 8/6/18 and confirmed on 13/6/18. My surgeon was going away on annual leave, so put me on Tamoxifen for a about a month, stopping this about 1.5 weeks ago ready for surgery this week. Unfortunately the downside of having this time means that now it's so close, I'm in full panic mode! - clear
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! ⛄❄⛄❄⛄
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.
No Idea what to do
Hi, I'm only newly diagnosed and not sure which way to go. I have a second meeting with my breast surgeon today and I'll see the oncologist for the first time tomorrow. I have a 6cm Invasive Lobular Carcinoma, whatever that means. Since finding out basically all I've had is more tests to see if things have spread anywhere and I'll get some of those results this afternoon. Because of the size I was thinking I might try to shrink it first but maybe I should just get everything removed. I'm fairly small in that region so losing this much will mean I lose it all. I've read so many stories and everyone seems so brave about having the whole lot removed but I just feel like I'll be missing a piece of me. Hopefully I can make some decisions soon. I also have a family cruise planned in 2 weeks that I do not want to miss. I have 7 year old twins that have been looking forward to it for too long so I don't want to do anything until after the holiday. I hope that isn't too silly. It took them months to find the problem, surely another 10 days is ok. I also don't know what to do about reconstruction or any of that at this stage. I know I would prefer to wait and do something later and get the best of the best to do it. Any recommendations there would be great. I'm based in Sydney. Thanks in advance for any advice on anything.
