Invasive lobular carcinoma

I’m 5 yrs post invasive lobular carcinoma.  I’ve had lumpectomy with lymph nodes clear . With all the news at the minute about this type of cancer and that it can’t be treated the same as other breast cancers , doesn’t show on mammograms due to growing in strands and there’s no actual treatment I’m feeling my heads about to explode . I’ve just been given my 5 yrs clear but am I actually clear ? Should I be having an MRI which is the only way to detect and then I’m now told I have to wait 3 years for another mammogram.  I feel like I’m a ticking time bomb. Any advice before I drive myself insane .

Hi Thurg 

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Hello - I am still having treatment for an invasive lobular and ductal mixed tumour - it was missed on a mammogram a year earlier and was reasonably big, I think many ladies say that about lobular.  I have an oncology appointment next week and whether I can have an MRI or an ultrasound as follow-up yearly will be one of my questions.  I asked the surgeon and she said it wasn’t policy and an MRI would throw up a lot of false positives which she felt would be very worrying for me.  Think I’d prefer to be worried and clear than miss something.  Would be interested to hear if anyone pays for private MRIs or scans for reassurance and how easy it is to organise.  Wonder what the surgeon suggests to her private patients? - I suppose there’s always the chance with lobular that an MRI may miss something too but it’s all we’ve got!  I not a very pushy person and find it all a bit overwhelming fighting my case to be honest but feel I need to at least ask the question. 


When I joined the specific group on facebook I realised that there were women in the South of England getting more specific treatment as opposed to the herd mentality at my northern hospital.

I’ve signed up for the moonshot project lobular to get updates and advice.

Have been searching for the letter to send out to my local hospital off the lobular website to no avail. 

Let me know if you find it

Hello Thurg 

Thank you for posting. 

It sounds like a difficult time for you, as you have recently been reading news about lobular breast cancer.  

The aim of treatment for primary breast cancer is to remove all the cancer and reduce the risk of it coming back in the future. Treatment for breast cancer will be successful for most people, However, it’s not possible to be sure that any type of breast cancer will never come back (recurrence). Each person’s risk of cancer coming back is different. It depends on a number of factors including the typegrade, size  and stage of the cancer, as well as general health and fitness.   

 You mention that you feel like a ticking time bomb, and you’re not alone in being anxious about this. It can feel like a difficult time moving from your yearly follow up mammograms into the 3 yearly national breast screening programme. You ask about having MRI scans, currently in the NHS  mammogram scans are recommended for follow up for all types of breast cancer. As you say, lobular cancer can be more difficult to detect on a mammogram scan. The screening team will know your breast cancer history when they look at your scans and will take this into consideration. 

It is important to be aware of any new changes in either the breast you have had treated, or the other breast and to report these to your GP. There is no right way to check your breasts, but it is good to get to know what is normal for you.  

Talking to someone who has had a similar experience can be helpful and our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support or simply listen. You can ring the Someone Like Me team on 0114 263 6490 or email them at, so they can then match you to your volunteer.  

The charity Lobular Breast Cancer UK has information about monitoring that may be helpful for you.

We are currently evaluating this service and would appreciate your feedback. Please click here to the survey. It should take approximately 10 minutes to complete.  

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001). 

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Best wishes 


Breast Care Nurse 

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