Invasive lobular cancer newly diagnosed need help!

Hi I have recently been diagnosed with lobular cancer. I am looking at a mastectomy, chemo and radiotherapy. (subject to pathology report but likely) I have to choose whether to have reconstruction surgery at same time as mastectomy, in the knowledge that if I need radiotherapy it might mess it up! What to do? is it better to wait til treatment finished or should I take the risk and go for it and what type? Would be glad to hear from anyone who has gone though similar and do you feel you made the right decision? I now have to have other breast biopsied following ultrasound and MRI. :smileysad: Fairly terrified on top of all that!


Hi goldengirl

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I’m sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things. 

Whilst you are waiting for the  other user to reply with their experiences you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

Also, do give the helpline a ring if you need any further support or information. They’re on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes Sam, BCC Facilitator

Hello Golden Girl.

i am nearly a year from diagnosis and treatement. I had invasive  lobular cancer, grade 3 stage 1 Her2 +. I had a wle, chemo rads and am still have my herceptin,  along with hormone therapy for the next how many years!


In view of what I went through, and I know you are a bit different as you are having a mx, I would advise to wait on reconstruction surgery. Give yourself and your body time to recover and adjust, then maybe a year down the road you can re evaluate things. By the way yesterday i had a results from my MRI and mammogram and all were clear, so next mammogram Sept 2014.Good luck with what ever route you take and be kind to yourself karen x

Thanks girls really helps knowing others experiences. Obviously my priority is to get this cancer out of me. if i knew in advance if id need rads or not it would help my decision. and if I do need rads then you can’t have surgery until 6-12 months after I believe which probably puts me at 18-24mths from now. It seems so far ahead and I believe, like you say, I will have gotten used to the prosthesis by then. Our hosp says they dont grade cancer! so I have no idea in that regard. Maybe they mean until after pathology results post op. In addition I’m still fairly terrified I feel my life has changed for ever and as I’m generally the one who worries about everyone else it’s hard to be in this position. Does that make sense? It’s been just over 2 weeks and feels like a lifetime. I think I’m lucky in that my surgeon is extremely careful and thorough - no chances taken at all.The year ahead is daunting for sure!!  the reason for doing the recon at same time as mx is - 1 op 1 anaesthetic 1 recovery which would be great if no rads! In addition I don’t have a clear option for recon. AHHH!!! Thanks again You have all helped. Good luck to you all and look after you! xxx


   I’m not sure how you got your diagnosis without your pathology report.  Do you know the size and location?  Is it a ball or a mass or both?   Have you had any biopsies done yet?  If so what kind of biopsy was done?  I had an Ultrasound Core Biopsy done on Septet. 24th.  I saw my DRP. Today,  It’s official, I have Invasive Lobular Carcinoma It’s very large.    Because of the size and placement (it starts in my nipple at 12:00 o’clock, goes up 3", around, out to 4" at 7 o’clock.)    my Dr. says he highly recommends a mastectomy.  He says I will not need ANY chemo or radiation.  I’m hoping things might be better then you think.  I don’t know, I’m still new at this.   I now have to have an MRI to see if I have any cancer in my left breast (no biopsy nothing else).  If I do my Dr. recommends a double mastectomy.  Is that why you are having an MRI?     

Hi Goldengril, I totally understand how you’re feeling right now regarding the waiting, it’s horrible and plays tricks with your mind but we will get through this. Like you I don’t know what my treatement will be but I certainly want a double MX for my own piece of mind once this horrible journey is over. I guess I’m looking at it as a boob job on the NHS - it’s the only way I can make light hearted of this situation.  At first i was dreading the thought of chemo, I have long hair and can’t imagine being without it. Like Sally I’ll look into a human hair wig and get my hairdresser to colour / cut this so it’s similar to mine. I know a lot of ladies are able to embrass not having hair, I think they’re so strong. I look forward to hearing how everyone is doing and I’ll keep you updated on my status.


Take care




Brilliant news goldengirl re your surgery date, mine is on Monday the 14th October and I can’t wait to have this “squatter” removed. I’m having a double mx with nipple / areola sparing ( as this no where near the lump) and implant reconstruction. The consultant advised that the areole is skin and only the nipple is tissue. They’re completing the sentinel biopsy during surgery but I’m still not sure re after treatment, they’re going to see what the outcome of the final biopsy / sentinel biopsy is.

Hi again thank you for the good wishes!! Im sorry I havent been back on here. Laptop trouble and its hard to type on my phone! All went well in surgery! 6-7 hrs in surgery! My plastic surgeon was amazing! I had tea and toast at 9pm on day of surgery. obs done every hour through the first night so no sleep but just delighted to come thru surgery and the bad guy is gone! I had 2 drains in 1 breast, 1 back. Got breast drain out on day 3 and back on day 4. got home on day 4 too! (Friday) amazing I had quite good movement. I drank gallons of water on first night as on iv antibiotics just in case of infection. then only had ibufrofen and paracetamol while in hosp. doing my physio exercises and trying to walk every day. get tired easily tho. So first step over, bit of recovery then I move on to treatment. Still waiting to hear Pathology report/meet with oncologist to decide treatment.  I still get a wee wobble every once in a while. It’s just all a bit surreal at times, this whole business. anyway just gotta keep going… Good luck to you all. Much love to all of you who’ve had your ops -  recover well! xxxxx