Hi all 
just wondering if anyone has has reoccurrences of Invasive Lobular cancer and had any chemo of any sort?
Hi
I have had recurrence of lobular after 7 years. Initially was put on hormone targeted therapy jags in bum and 2 tablets twice a day. Denosumab 3 monthly. Ive just been changed to chemo tabs now twice a day and starting zometa soon. Have you had a recurrence? X
Hi yes I’ve had a few reoccurrences so not thinking just surgery is working. Seeing oncologist next week and wondering if they are going to suggest anything else after the op. How were the jabs in the bum? Did they make you feel ill? Lose hair? How many did you have and how often? 
thank you for replying x
I have just been reading some of your other posts. You said you were having pain in your pelvis and groin area which I am having also. Did you by any chance have a bloated stomach? X
Hi
Ive been asked that by medical staff. I don’t have a bloated stomach but I did have an abdomnoplasty 3 years ago for breast reconstruction and the scar is still as tight and uncomfortable as it was when it was done. I was told about a year. So im wondering if there is a connection. My cancer is secondary and has spread to my bones. L2 to L5 has cancer in and the femoral nerve runs thru them. I also have a numb leg, only a small area at the back isn’t numb. Now my leg is getting weak and I cant lift it, so its affecting my mobility. Its very worrying. Im getting one dose of radiotherapy next week to see if it helps. 
Hi
The jags didn’t make me feel ill. I got them once a month and denosumab bone strengthening 3 monthly. My hair thinned slightly. Im now on chemo tabs but been told they won’t affect my hair. Need to wait and see. X
So sorry to hear you have secondaries 
did the NHS pick that up or was that only picked up with MRI that you had privately? Is the reconstruction you had the same as DIEP? That’s what I was waiting for when I found out about reoccurrence number 5 
have they put you on the chemo tablets because of the secondaries?
Hi again….
It was the mri we paid for that discovered the cancer in my bones and thats what was causing my pain. My reconstruction was diep yes. I had this done a year before my diagnosis but was was only 4 months after my surgery that the pain in my pelvis and groin started. The chemo tabs are my second line of treatment as my last ct scan showed some changes that indicated the hormone treatment had stopped working….that was only a year and 9 months on it. So hoping the chemo tabs work for longer.
5 recurrences is a lot….is that over both breasts? What do they do each time? What kind of bc is it? Its a living nightmare isn’t it? I hope u are ok. X
Had you had a bone scan which had shown clear before you had your private MRI ? Just asking as my bone and CT are clear by all accounts. So the 1st and 2nd time I had WLE. Then I had a reduction on my ‘good’ side as I was quite lopsided by then. 3rd time was in COVID but I managed to get a left mastectomy with immediate LD flap reconstruction and another reduction on good side. Then I was getting checked out ‘downstairs’ for my bloated belly and pain in groin when they spotted two nodules on a CT scan I had had. So that then led to a radical mastectomy which I chose to have both off. I was looking forward to getting a DIEP reconstruction appointment but then a line of nodules appeared on my mastectomy cancer side scar which was positive. I’ve never had chemo but first time I had radiotherapy. So I’m booked in to get the cancer removed again and hoping I’ll be getting something else as well x
Hi
After having the pain for a few months and gp treating for sciatica with pregabalin, I expressed my concerns to gp and she asked me if I would like referred to orthopedics….which obviously I said yes to….when I explained my symptoms he right away said it was femoral nerve damage which affects the front of the leg. He said an mri was needed to see exactly what was going on but said I might have a wait so we said we would go private and he was happy to refer me and accept my results from them. He phoned me 4 days after scan to tell me it was cancer in my spine and in other bones. So my local hospital fast tracked me and I had ct scans and radiotherapy within a week of finding out my results. Stage 4 secondary breast. Treatable but not curable. Gutted of course but have tried hard to be positive. You have been thru a lot too. Xx
Oh my word what a nightmare for you. You must be scared. Hope the rads help a bit. That’s exactly what mine feels like…sciatica…it’s not really bad yet but it’s annoying and getting worse and pain in groin also dragging pains down the front The BC is lobular
Hi there,
During a routine follow up they discovered lymph nodes in my left axilla. Originally had right mastectomy for lobular. Had DIEP reconstruction and fat grafting. Present work up shows one lung nodule, ascites (slight), and an enlarged belly node. They offered me oral capecitabine but I had that in the IV form when I had chemo. ( It clearly didn’t work as I had more findings on post chemo mammo, thus requiring full mastectomy after previous lumpectomy). As I am symptom free and my cancer is androgen receptor positive, I am trying an androgen blocker. Hypothesis is that it will work in same way estrogen blockers work on ER positive cancers. My locular cancer changed from ER+ to triple negative. (Apparently lobular can be heterogeneous-different parts of the tumor can ER+ or -). Sorry for such a long explanation.
Hope you find a good treatment. Blessings and good health to you!
So you have both had a DIEP were you happy with your results?
Yes. My DIEP was Sept ‘23. I have a little right boob which nearly matches my little drooping left natural one. Have a flat tummy too.
Had fat grafting to attempt symmetry, a nipple was created then too. Going in next month for right nipple tattoing.
Hope you are well and thriving! Blessings
That’s good that you are happy with results gives me some hope if I ever get there lol. I’ve had two nipple reconstructions. One before 1st mastectomy and one after on my reconstruction. Two different surgeons. The first went flat almost straight away but the second was fab and stayed plump. Make sure you put the numbing cream on in plenty of time for the tattoo x