Hi all, I’ve been diagnosed with multifocal with a 60mm lobular grade 2 and 10mm ductal Grade 1, both removed by mastectomy and 1 sentinel node positive from a possible 4. All hormone positive here2 negative.
Just wondering if any ladies had just radiotherapy and hormone treatment after surgery and avoided chemo? And how they are doing now? I’ve been told that oncoloyy will want to talk to me about radio, chemo and cdk treatment but I thought I would Originally get away with chemo as it was 16mm on scans with no lymph involvement but turned out larger with one lymph involved. I’ve read about lobular not responding to chemo and I’m worried about a heart condition being made worse if I have it.. any advice do welcome
I don’t have any advice but I am also having treatment for lobular - initially two areas, Grade 2, quite large, ER+/PR-, HER2+. I’ve not had surgery yet, and am having chemo to shrink things. I’ve had a biopsy midway to check response, results back in a week or so. I’ll have immunotherapy (Phesgo) for the HER2 as well as hormone therapy, radio not been discussed. I gather that ILC treatment plans do differ a bit from each other so I wouldn’t necessarily draw anything from it. Nothing has been said to me about ILC response to chemo, and I’m halfway through that, almost. When are you next in with your medical team? X
Hi @felineoptimist , I had my surgery 4 weeks ago and was told that I will see oncology in about 6-8 weeks as there’s a bit of a wait.. my lobular was quite large but her2 negative , I’m assuming that as yours was positive that’s why you had chemo automatically? I think if they knew the size prior I may have been given chemo first to shrink it but surgery was successful with clear margins.. I’m worried that I’ve not been started on hormone tablets yet though as that’s the main driver for hormone related..
What chemo did you get and how are you getting on with it? Hope not too bad
I guess so about the HER2 but not sure! I’ve had 4 X rounds of EC chemo (Epirubicin and Cyclophosphamide) each 2 weeks apart, and then I’ll have 3 Docetaxel three weeks apart. I think the combo is quite common but there’s various ways to get it (frequency, dose, order etc). EC has been okay for me, I’ve had only the most common side effects really. I’m getting more fatigue towards the EC, and a bit more nausea but no real sickness. My hair did pretty much all do a runner though. I’ve managed to work from home and office about 50% overall and kept up most of my normal activity - I haven’t felt like doing gym/dance classes, and I’ve suspend my choir, but seeing a good number of friends and family through visits and trips out. Chemo isn’t nice by any stretch of the imagination but the medication to handle side effects and the system of support is really good, in my limited experience. I feel safe knowing I can ring for advice and be seen quickly if something is going a bit awry.
How are you doing after your surgery? I’ve not had a recommendation on what surgery yet and I’m finding that uncertainty hard to deal with. Not knowing for sure the extent of the cancer, even if there’s any in the other side (also had that biopsied last week) means I have all of the doors still open. X
I’m glad you’re not experiencing too bad of side effects.
I had a mastectomy as was given no choice as I had multifocal in one breast. I honestly have to say the surgery was not bad at all and the recovery is relatively easy to recover from. I didn’t have drains though or bandages so saw the wound straight after waking up which I was unprepared for.. but all is good and 4 weeks on now and getting used to only having 1 boob.. I’m actually quite proud of my scar at the minute.. it’s still me just with a war wound! Even my daughter’s fine with it and she finds it hilarious when I can’t find where I left my soft boob. I’m sure she hides it!
I think we have to take the positives with the negatives and ride those. I’m back at work now which I’m so grateful of before I start whatever’s coming next.. just waiting for my oncology appt to come through now.
Hi there, I had 54mm lobular and 18mm ducal both ER+ HER- removed via a mastectomy back in February, clear sentinel node. My tissue was sent for oncotype because I am 50 and came back at 17 so I am not having chemo but start radiotherapy this week and will then be on hormone therapy x
I was diagnosed with Lobular in December. Mine was 5cm, ER positive, HER2 negative, lymph nodes clear. My Oncotype score was 17. I had mastectomy in January and now on Letrozole & Ribociclib. I didn’t need any Radiotherapy or Chemo.
Thanks for responding @kcc and @louloub , we’re either of you offered chemo? Not sure your ages but I have 1 positive node too and feel they will push chemo and because of me being premenopausal too.. I’m so unsure of what I want due to my heart condition that I don’t want to survive cancer and go into HF.
Hi there, I wondered how you were getting on the Letrozole & Ribociclib? Are you on zoladex injections too? My oncologist was definitely leaning towards putting me on these drugs and closing down my ovaries as opposed to Tamoxifen. Thank you x
I’m 57 and post menopausal and because my Oncotype score was 17 then my oncologist advised that chemo was not beneficial. I’ve been on Letrozole for about 6/8 weeks and only just started cycle 2 of Ribociclib so still early days. I’m only on a low dose at the moment but if my bloods are ok after this cycle then they will raise the dosage. My main side effects are hot flushes!! And I’m so tired and achy knees! So not too many, hopefully it will stay like this. I only had my Dexa scan last week so not sure if anything further is needed.
