4th Diagosis of Lobular Breast Cancer

  • 10 replies
  • 260 subscribers
  • 442 views

Hello all, I can't believe I am writing this, I haven't even told my son, father and siblings but it's back and for me it's been an 18 year journey with 4 diagnosis. I was just approaching my 5 year mark again but it's a reoccurrence on scar tissue of a diep flap reconstruction. The last one was 6cm behind the recon so I was lucky to keep the breast ( even though it's not breast tissue ) I dont know more at this stage. Staging scans incoming and the surgeon this week even through an MRI was done as part of my annual checks lots more information will come my way

I am angry now to be honest and shell shocked, of course I am so lucky to have survived 3 but I would love to hear from anyone else with multiplies in the same area. 

I have never had a spread, no lymph nodes and brachytherapy twice so radiation will not be an option for me 

  • Hello Dubash, honest when I read this I thought it was just too much.  You have managed well but I am sure it is just heartbreaking to get the news.  All I can say is that I hope your treatment goes well and that this lobular cancer stays gone for good.  Enough is enough.  Hugs to you.

     Think Dr Liz O’Riordan from the UK who has a YouTube channel has had 3 reoccurrences.  She has an excellent channel if you haven’t seen it.

    Barbara 

  • Hi Dubash so sorry to hear your news I’m also had lobular breast cancer had horrible results. Please let us know how you get on .We are thinking of you x 

  • Thank you ladies, following Liz a long time Barbara. I was involved in setting up Lobular Ireland here across the pond and only that a pushed for an annual MRI I might not have caught any of them to be honest. 

    I just can't believe it's a 4th breast cancer, obviously I am praying it's nowhere else. I have been getting zometa infusions for years then downgraded to aridian after my joint pain became too much and working was a challenge. Needless to say I am off now and getting the head in the game for what's ahead

    If anyone has had chemotherapy for a third time what did they give you ? I have had ACT and FEC but immunotherapy was not around in my early days. I am 51 by the way and BRAC neg. ER/PR ++ and HER2 Neg 

  • I cannot imagine where your head is . Mine is lobular , having radio this week . Nobody seems to have heard of this type , even the medics brush it off . I’m going to have annual MRI , mine didn’t show on a mammogram . 
    verzenio seems to be a new drug . Were you on Tamoxifen ?

    Will be thinking of you this week Fingers crossed

  • Klf thanks, insist on the mri and possibly ultrasound route. Lobular mimics breast tissue so it's hard to find and it's often more of a spider web shape so margins might be bigger. In many cases it tends to be slower growing but it sleeps so ne er miss a scan.

    The new drug is definitely top of my agenda to push. I was on tamoxifen for 10 years then after a hysterectomy went back for the oopherectomy 2019 so on letrozsole since  

    The drugs are changed so fast thankfully ... keep these cancers on their toes. Good luck with the radiotherapy...any questions come back to me I think I have done everything at this stage 

  • When I was diagnosed , they told me it can grow like a web , scared me. Pathology said clear margins and node zero . I had my op on 22nd March . I’ve been on Anastrazole for 5 weeks and I’m 56 and was definitely post meno .

    im going to talk to my consultant about MRi In October .

    i know someone who’s been on the verzenio for 18 months x

  • Absolutely go with the regular MRI Lobular is different, mind you I have ductal and lobular the second time ! Very I retested to hear how you get on work the new drug x

  • I’m really very sorry to hear this. Yes, lobular can be sneaky. Right throughout all of my treatment I was diagnosed with grade two invasive ductal. I had chemo before I opted for a mastectomy and radiotherapy. Only after the pathology results (and I had four MRI scans pre and during chemo) did they find that it was a mixed tumour- grade one lobular, and grade two ductal. I was so shocked. I requested a second mastectomy, for symmetry and also because I knew that lobular can evade a mammogram - although I didn’t tell them the second reason. Due to a cancellation, I had surgery a few months later. I don’t regret the mastectomies, but understand why it’s not something for everyone. 

  • Thank you Cloudier and I might be pushed for a mastectomy again now. Diep was a massive surgery for me, post op MRSA, skin graphs the works but great plastics on board and aesthetically looks great ... lobular does often come in the other breast you are right. Alot of forks in the road ahead.. its nearly what they can offer me as treatment post op that I am lost with, this thing obviously isn't going away just sleeping then popping up

    I hope you are recovered well and minding yourself 

  • Thank you. I was prescribed Anastrazole for ten years (7 years and two months to go!). I believe that following her most recent recurrence, Liz O’Riordan is on fulvestrant and palbociclib. Perhaps worth discussing with your oncologist?