Hi Brigitte, how long since you were diagnosed and where are you in your treatment plan ? At 43 I was diagnosed with ER+ PR+ lobular cancer in May 2015.  I had a lumpectomy first and unfortunately they did not get clear margins so ended up with a mastectomy to the affected breast. I also had 3 out of 15 positive lymph nodes and due to the size of the tumour - 90mm, my oncologist decided that I should have 6 rounds of chemo and 28 sessions of radiotherapy, I also  had my ovaries removed due to the hormonal aspect of my cancer.  My treatment all seems so long ago now but I am now on Letrozole for 10 years and despite some side effects, I am doing ok.  I know your mind must be spinning right now but try to take little steps , it’s so easy to let our minds run riot after being diagnosed, I felt like I was on a huge rollercoaster all the way through mine and all I wanted to know was that I was going to come out the other side, I did and you will too.  Am happy to answer any questions you have even ones that might sound silly !

Hugs  

Leigh xx

Brigitte xxHi Leigh, thanks for your reply to my post about lobular cancer. I have just been diagnosed this week. I only realised something was wrong when my nipple started to turn inwards. I’ve to have an MRI scan this week to see exactly where the tumour is and it’s exact size. The doctor says it’s quite big. Reassuring you have been there and are 10years down the line. Did you have reconstructive surgery?

Hi

i was diagnosed post op with both ducal and lobular, it was small enough for lumpectomy, radiotherapy and tamoxifen. I’m not worried about treatments as they are working otherwise we would be seeing higher mortality rates with those with lobular and were not.

Hi briggite 

2 yrs on the 10th of this month since I got my diagnosis- 2 lumps 1 ductal and 1 lobular both invasive. MRI is standard to assess tumour for surgery. Everyones experience is different-here’s  mine....Even though 2 lumps I still just had a lumpectomy and sentimental node removal followed by 15 sessions of radiotherapy. From date of diagnosis to last day of treatment... 13 wks 2 days. I’m on letrozole for 10 yrs, annual mammograms for 5 yrs. 

I hope your treatment plan is as good as it can be. Just know ... you can definitely do this :) ️

Hello again Brigitte

I think that is the tricky thing with lobular cancers, initially they thought mine was 3.5mm according to the breast ultrasound but it turned out to 9mm once they had done the mastectomy and extracted the tumour.

So In October 2015 I had an expander implant inserted immediately after the mastectomy.  The expander was then gradually inflated with saline over the course of 6/8 months to create a pocket under the muscle for the permanent implant, Once I had healed from the surgery, I then had chemo and radio, the expander was left in place until January 2018 (so all of the effects of the treatment have gone) and it was replaced with a permanent implant.  To be honest the implant is nothing like I had imagined, it’s hard and cold and feels very alien to me, so I am now looking at other options (Diep etc)

Let me know how your scan goes, where is your treatment being done ? Mine was all at ahospital Surrey and they were wonderful, will be keeping everything   for you for next week,

take care

Leigh x 

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Hi Leigh, thanks for the advice about your reconstruction. I have an appointment with the plastic surgeon on Tuesday. I am leaning towards diep, free tummy tuck. I am Scottish and my treatment so far has been great. Biopsy done, results within 6 days. I have a dedicated breast nurse and an appointment and MRI scan all within a fortnight of diagnosis. Mastectomy for the middle of September. Good old NHS. Will keep you posted. Xx

Thanks Sandra, it’s so encouraging to hear from people to have experienced what I’m going through. 

I can get through this and I will. Xx