I was diagnosed with stage two lobular cancer and tubular cancer, four tumours in all and had a mastectomy in August 23 there was no lymph node involvement and I am on 10 years of Letrazole so am greatly concerned that had it not been to the fact I was on a dense breast trial and had had a CT scan in March 2023.followed by 3yr routine mammogram in April 2023 to be told that there was no evidence of BC in the mammogram however I was contacted a couple of weeks later with results from the CT scan and following subsequent scams and MRI it was proven I had 4 tumours which had not shown up on the mammogram. After my operation, they oncologist inform me that I would go for a yearly [date=2024-06-25 timezone=“Europe/London”]mammogram to check that I was still clear when I told him the situation the tumours had been detected and missed by the mammogram. He just shrugged his shoulders and said the mammogram was the way of testing that they provided. As time has gone on I have become increasingly anxious about this and wondered if there was anyway I could receive a different form of scanning?
Hi,
I’m just two weeks post-op and already looking into how I’ll be monitored for my Lobular Cancer. Luckily, mine showed up on the mammogram, but it turned out to be much larger than the mammogram showed, so I feel fortunate to have caught it. I’ve joined a Facebook group called “Linking Lobular Ladies,” where members share their experiences with aftercare and monitoring.
The group has been super helpful. I think there’s a letter template to help request an MRI scan instead of the usual mammogram, and people talk about paying privately for MRIs, including advice on prices ect . It’s frustrating that some hospitals don’t acknowledge how different Lobular Cancer is from Ductal Cancer, but I’m definitely going to do everything I can to improve the process for myself and other Lobular Ladies.
I hope this has helped
H x
Hello susie2
Thanks for posting.
It’s understandable you feel concern about only having mammogram as part of follow up. You explain you were diagnosed with lobular breast cancer which did not show up on a mammogram. You are not alone in feeling concerned about this.
Some women with lobular breast cancer will have an MRI as part of their follow up and a mammogram can still be helpful as it can help detect other, early breast changes that may need investigating.
The organisation Lobular Breast Cancer UK may be of interest. They also have a letter template requesting MRI and may be part of the Facebook group that @hayley3 mentions. You may also be interested in the range of free supportive services we offer.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. 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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Jane
Breast Care Nurse
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