Invasive Lobular Cancer

Mazzamo 28 days ago

7 replies
420 subscribers
231 views

Hi to everyone on this difficult journey

In 2012, I was diagnosed with ILC breast cancer following a routine mammogram when I was 60. Straightforward lumpectomy (three ops - second to obtain clear margins and third because of a haematoma). O node 3 cm and Hormone Receptive. Was treated concurrently for Thyroid cancer which was an incidental finding when I was being ‘measured up’ for radiotherapy on CT. The latter was a complicated procedure as it was a huge tumour - total thyroidectomy followed by large dose of Radioactive Iodine to ablate remnants. RAI can cause late tumour - solid or blood.

Health has been hit and miss since then and currently very poor. Last mammo in 2021 when I was 70. Aware that ILC is difficult to detect on mammo. Also aware that (according to my wonderful BC nurse) it can be a ‘late returner’ and creep back years later.

Moved house in 2022 and local breast screening refused to let me self refer for routine screening although I know that this is the protocol. They said that I needed GP referral and argued relentlessly. I gave up as I didn’t want to bother GP.

in 2022, my half sister died 6 months after dx of Triple Neg Stage 4 De Novo I was urged to continue mammos until age 80

Im used to the feel of my breasts and know the location and feel of scar tissue and effects of radiation. Yesterday was upset to find a hard, peaasized lump in same breast. Have had rib pain in right ribs for ages but suspected gall bladder may be reason. Contacted GP. Appt tomorrow.

Obviously I’m concerned and have read a little today but consensus seems to emphasise that ILC doesn’t present as a lump. I’m aware that it could be a different form of BC. I’m pretending to be gung ho about all this but I have no confidence in local breast team.

Would be pleased to hear from anyone who’s had a recurrence and how it presented.

Irishgirl16 26 days ago

Hi, I’m one of the champions here in this group and I just noticed you've not had a response yet. My answer will pop you back to the top of the page and I hope someone with the relevant experience will be along soon.

Best of luck with your GP appointment and I hope you get some clarity soon. Best wishes

Leelaloo 25 days ago

Hi Mazzamo. How did you get on at the doctors? I had lobular breast cancer in 2012/13. I had lumpectomy, chemo and radiotherapy and then tamoxifen. In 2024 I had hip/back pain and had MRI. It turns out to be stage 4 lobular breast cancer with mets in most of my bones. Funnily enough no sign of cancer in my breasts, it spread through my blood. Hopefully yours will not turn out to be cancer. Have they referred you to the clinic?

Lee x

Mazzamo 25 days ago in reply to Leelaloo

Hi Lee

Saw a GP. She found the lump without a road map, poked and prodded and went through my history, including the fact that I’d had Radioactive Iodine for Thyroid Cancer which was treated concurrently. Did instant referral and said if I hadn’t been phoned by Friday to call surgery. Gave me a small Cancer Research booklet which basically says try not to worry and take a friend to appt

By the time I got to surgery car park, there was a text message from one of the medical surgeries to say she’d just put the referral through and to call her directiy if no contact by Friday

My greatest worry atm is worsening rib and hip pain on right side and nerve pain from back of my head down both arms.

I’ve read that people who accept a first BC diagnosis can’t cope with a second. I’m older, have poor health and I can’t do this again - but I know I will. Hoping it’s benign

so grateful for your msg x

Mazzamo 25 days ago in reply to Irishgirl16

Thank you so much. Lee has responded and I’m so grateful for that. Her response below and mine to her x

Leelaloo 25 days ago in reply to Mazzamo

Hi Mazzamo I am so glad that you have been referred early. You have been through so much already and I sincerely hope you don't have to go through this again. You must definitely follow up if heard nothing by Friday. I am happy to chat anytime. Big hugs.

Lee xx

Mazzamo 25 days ago in reply to Leelaloo

Thanks Lee. I do appreciate this. I am behaving with absurd normality at home so as not to concern my husband.

Mazza xxx

Leelaloo 24 days ago in reply to Mazzamo

Hi Mazzamo yes I behave (normally) in front of husband and friends as I hate them worrying about me. Sometimes though it is very tiring putting on a brave face all the time. It's great that you have reached out on here as we all understand what you are going through. Please keep me updated on your diagnosis.

Lee x

More from this forum

Invasive Lobular Cancer