Invasive Lobular diagnosis- waiting for further tests


Yesterday I returned to get the results of mybiopsy and I’ve been told it’s Invasive Lobular cancer. The dr said that they need to do an MRI and further tests to get the full picture and to see if it’s spread. I’m so scared that it will be in other places. I feel I can cope with breast cancer(somehow!) but I’m terrified it will be in other places. I’m 41 next week with 3 young children who I can’t stop worrying about. Thanks for reading x


Hi Nixons,

Although it does not help with the anxiety, an MRI scan is normally done for lobular bc, as it is less easy to see on mammo. 

I had a query about lobular & had an MRI, like you I was very anxious about it, but it is to complete the diagnosis, so that you get the best treatment plan. They are only being thorough. 

This stage of going through investigations & waiting for results is stressful, we’ve all been there, but it does get better.

ann x



Hi Nixons. Like Ann says they are just being thorough and I would not read too much into the fact that they are doing an MRI - it’s not to check for any spread outside of the breast. Of course, when I was going through it you could not have convinced me of that! I do know what you are going through.


I’m a lobular girl as well and they sent me for an MRI because they could not see my tumour on the mammogram although it was very palpable and easy to find via ultrasound. I’m glad they did because they found another couple of tiny specs close to the original tumor that were impossible to see. So glad they did as it possibly saved me another round of surgery later. They will also check the other breast too just to be safe - mine was clear. It’s really reassuring to know they have done all the checks they possibly can.


I’m just over a year out of treatment and feeling fine. It’s a rubbish time you are going through right now but you will do it and once your treatment plan is in place the time starts to fly. 


Keep us posted as to how you get on. This is a fab place for support and info and we have quite a few laughs here as well believe it or not.


Ruth xx

Hi Over70. If my memory serves me correct, I think my MRI was on a Wednesday and I saw my consultant again for results the following Monday. It still seemed like a long time. I don’t think it’s unreasonable of you to check in after a week if you’ve not heard anything.



I had an MRI too (and did shout get me out get me out - how embarrassing lol) but glad i had one because they did find other small areas aswell as the original lump - resulted in a mastectomy and pleased to say pathology results showed all removed (all 9 areas of it) and lymph nodes clear. MDT discussed my results and i don’t need any further treatment other than daily Tamoxifen. MRI is a great diagnostic tool and it definitely saved me having to have more surgery by finding everything first go.

i had MRI wed and results yesterday…showed more and have been told Mastectomy…feel sick

Millie67 - try not to worry - it will be the absolute best thing if they found more areas. I had 10 areas altogether, mastectomy and now pathology shows all removed and no further treatment needed.

Over70 - my MRI showed a couple of small cysts in my non-cancerous breast and it’s fine x

Nixons3… when i had my MRI they told me to close my eyes and imagine i was on a beach in the carribean… so i closed my eyes and imagined i was actually underground lol! That’s why i screamed get me out. When i went back in i kept my eyes open so could see the light at the end and it was so much easier. Everyone is different but i certainly found it worse with my eyes shut.

Hi Nixons3, if you are feeling frightened about the MRI due to claustrophobia you could always see if your GP would prescribe you with a Diazepam or similar to take the edge off. My kind GP gave me a few on diagnosis as i was a quivering wreck with anxiety and I asked if I could take one prior to MRI, she said yes, however, by the time MRI day came round I was a lot better, more informed and i didn’t need it. Take care, it will be ok. If I can get through it, including the mastectomy afterwards, you can. You find your inner strength xxx

You are definitely not a wimp Nixon, don’t worry, u sound just like I did a few months back. It’s such a rubbish, scary time but keep posting on here, ask everything so you kind of know what to expect. Also, I found my breast care nurse a good ‘go to person’, do you have one? Xx

Good, glad you’ve got some support Nixon ? xx

I’m slightly concerned with my lump, it feels huge and more of a hump. I know I need the MRI but in my mind, and seeing what other people have said I think I’ll end up losing my breast. 


Im not looking forward to the mri either it’s all a bit scary.

Hi! Re MRI - I’m sooper-dooper claustrophobic and thought there was no way on earth that I would manage it, but there was no escaping it! Take some music with you - I took Taylor Swift(!) - and they’ll give you headphones (which they speak to you through as well). I shut my eyes as I went in and didn’t open them until I came out. I tried to keep thinking happy thoughts (not easy especially under circumstances!). I got through it. It’s true that MRIs throw up false positives (I had stuff lighting up all over the place which all turned out to be ok - but needed 2 more MRIs as a result.) Still, it did its job, and while I can think of nicer ways to spend half an hour, I did it, and now think I’m an MRI Queen!  And if I can do it, anyone can! Best wishes. Debbie x

Thanks x

Nixon3 - after my MRI they called me back to have an ultrasound due to seeing more areas of cancer?? on the MRI. When she did the ultrasound she found about 6 areas and wanted to do a biopsy of one of them. I asked the radiologist if she thought they were malignant and she said yes as they had the same characteristics as the main lump. I really didn’t want her to biopsy one then have to wait another 2 weeks to be told what she thought it was in the first place but she said they have to prove a mastectomy was needed. I dug my heels in and said i just want a mastectomy - spoke at length with the surgeon and he agreed based on the multifocal nature and that i wanted one - the pathology came back with 9 areas of malignancy so my choice was the correct one.

hi ladies

i was told after mri last week that more was found and possible on other side…they have said mastectomy that side, will confirm other side that looks suspicious and more biopsies on other side this thursday

i am petrified of mastectomy but will push for both sides. i am praying that they can do reconstruction straight away, the thought of being flat i just cant handle. i am 50 next month and still want to feel like i can wear nice things etc…people on here seem so brave …i am really not…they cant use my nipples …

i just want to be risk free…this has all happened in 2 weeks and i am sat here at work a bit of a mess.

i was first told lumpectomy and no chemo etc just radiation, now saying mastectomy no chemo, for which im grateful BUT from what ive read that can easily change too

hoping you are ok NIXON , lets get through this together xxxxx

Millie67 - you are the same age as me. I’m now 7 weeks post mastectomy and feel totally fine. I had an implant at same time as mastectomy. Also had other areas as i’ve said in a previous post but told makes no difference to outcome etc if you have other areas. Main thing it’s all been cut off and mentally feel so much better and i’m sure you will too. The thought is so much worse. I felt a feeling of freedom if that’s the right word after my surgery. Good luck you’ll be fine x

Hi Millie - yes i had immediate silicone implant. I had the choice of that, the one where they take some of your tumny or the one where they take some from your back. I was an ideal candidate they said for silicone implant as i’m only a B cup - i must admit i’m really pleased with how it looks! Am getting a nipple tattooed on in the future i think.

so glad you are pleased with results, i think im just dreading surgery not knowing what i’ll wake up with etc…i havnt really had the meeting yet to discuss so maybe that will help…3-4 week wait now for surgery…everyday is horrid…well done you…!