Invasive lobular cancer - anyone else had imaging issues?

Hiya. Yep same boat. Original diagnosis from ultrasound and biopsy was 1.5cms and one lymph node affected. Was having op 26 Aug, lumpectomy and node clearance. Now, after MRI, they cancelled my op as they said more undetermined areas seen. More biopsies and now waiting for results, consult and new op date. I'm now petrified as I 'm imagining the 1.5cms is now a lot bigger!! I can't stand the waiting, but I hope now they will offer me a mastectomy. Just want it all gone. Been waiting 6 weeks in total and now prob another 3 weeks for op. Meanwhile I've now got a swelling under my arm. I'm hoping it's because of the biopsies and not spreading to more lymph nodes. I'm just about to post the question to see if others have had lymph or other swelling after biopsy!

Hello Cazza

Hey thank you so much for replying. Sorry to hear you are in the same boat. 

I have just sent you a friend request, which allows private messaging.   Hope this is ok and no problem if not. 

I appreciate this any not help, as I am not medically qualified but I have been reading studies and websites (mainly USA based) and am sure my consultant shared this too - invasive lobular is very slow growing. 

My first biopsy was 30 June and now am scheduled for a mastectomy 16 September.  I feel you because I am stuck in limboland too, with no idea of what my treatment plan will be until after the surgery…..  

Since my biopsies, things have felt different and I have mentioned it to any medical staff I see.  All shared it would take 6 to 8 weeks for things to be back to normal.

I am a better safe than sorry kinda person and would highly recommend you mention it to your medical contacts, as they hopefully can give you the best advice. 

Sending super big virtual hugs xxx

I think I have accepted your friends request ok, so let me know if not! It's a lonely thing waiting for tests and results. I feel I'm in a nightmare and can't wake up! 16 Sept feels like a year away I bet!? Chances are my new op date will be the week after.

How big is your lobular and any sign of lymph involvement?

Hi I have had Invasive Lobular cancer and 10 out of 14 lymph node involvement. I had two tumours in right breast I 6cm and one 1cm. It was grade 2 and ER & PR positive. I had mastectomy and lymph node clearance followed by x6 chemo and x15 radiotherapy. Now on Letrozole and bisphosphonates.  My main worry is I have an annual mamagram but this type does not show well on this. I think I will push for an ultrasound too.

I had op in Nov 21 began chemo in Dec 21 and finished that in April 22 then in May 22 began radiotherapy until June 22 .Have mamagram in Oct 22 and quite worried about it.

All scans done before treatment MRI with dye,  CT with contrast, Muga scan (heart) and bone scan both radio active injections first. These showed no signs of cancer so hopefully all treatment was precautionary.

Hope you get on well with your plans and results. I never thought I could get through it but I have so can you .Take care xx

Hello Jane

Thank you so much for sharing. Wow I hope I can share some of those stats after my surgery…..

Do you mind if I ask how you first found out you had lobular - ie did it show on any imaging? I have done a  friend request, as can private message, but no problem if it’s a no too. 

That’s the bit that shocked me on imaging, because if I had not researched it, my consultant would have glossed over it all. 

I have been reading up on USA studies and Letrozole is highly rated for this cancer. There is a UK group lobularbreastcancer.org.uk, in case it can help on best form of imaging.

You're so right, I too am taking this step by step.  I will be relieved once I know what my results and treatment plan are…as I know so little for now. 

Ahh take care tooxxx

Hi Sparkles133

Happy to chat I think I have accepted your friend request but not great at navigating these sites. 

 I missed an mamagram due to Covid cut backs they were a year behind. 

I first got pain in outside of breast and had a good feel . I felt a disc shape  which I thought may be muscular. I must admit I had spent a good few months looking after my mother until she passed and probably had missed doing my checks as preoccupied. 

On further examination I noticed a dimpled area of skin and this alerted me to go to GP. Got a two week referral to breast clinic. Had mamagram followed by ultra sound and biopsies taken. Very bruised. They said it looked suspect 

Waiting results is very hard your mind goes into overdrive.

Got diagnosis two weeks later and told there was a smaller lump under breast. I then had MRi which questioned lymph nodes so back for node biopsy. As this showed cancer cells the mastectomy turned into lymph node clearance too. 

The results from this culminated in adding chemo into the plan . My biggest dread. 

I cried for days but somehow got through my plan and now out the other side  Hair growing back thank goodness.

I hope this is useful to you and happy to message as friend if I can work out how too xx

Don’t worry on navigating the site, it took me a while too.  I will reply back via private messaging.  If you click on the red circles that i have taken a pic of, you should hopefully see …

Hi Janemb. That all sounds scary and is what worries me. What I thought might be small could well turn out to be big and spread. I hate this lobular business. 

Being lobular I want to ask for MRI going forward, rather than mammogram. I don't get their thinking that a mammogram will show lobular, when missed previously!

I hope you get the results you deserve after all you've been through. I'm a lady of faith so will send a message upstairs for you. Hugs xx

I have lobular breast cancer too. I felt a lump but had a regular mammogram already booked. Mammogram nurses told me to go to my GP that day. GP examined my breasts and said she couldn't feel anything, that my breasts were OK and to go home and not worry. I knew something was wrong though. Turned out, I had a 3.7cm tumour. Have had a lumpectomy and axillary clearance (8 out of 14 lymph nodes affected) and am now on chemo. I really want to have annual MRIs after I have finished treatment. I am not sure if you can have them on the NHS but I will pay for them if necessary. Lobular is so difficult to find. 

Hello Pryderi

Oh bless you and thanks for sharing.  I know detecting lobular is a challenge in detection.  Gosh that’s not good that the Dr sent you home.  Sorry to hear that you are on chemo, hope you are feeling ok (I know)

I know because lobular is usually found later that mastectomies are more common. That is what I have had.

Wow you are the first person I have heard describe lobular as a lump, as that’s me too.  Most cases it seems to be described as tree branches or a spiders web.

Actually if you go online to:

https://lobularbreastcancer.org.uk/education-info/

They actually have a template letter to request an MRI. So it might be worth a try.  Hope this helps. 

Sending you virtual hugs