I am looking to connect with anyone who has a recurrence of Lobular breast cancer.
I was first diagnosed in 2009 and had a double mastectomy, no lymph node involvement, had two rounds of chemo, radiotherapy and then Zoladex.
Just been diagnosed 15 years later with a recurrence in my lymph nodes. Am still waiting for a staging CT to see what stage I am at. Feels like a living nightmare that I did everything in my power to try and prevent. Guess I will feel better once I have a proper diagnosis and treatment plan. I went to the breast care clinic 4 years ago with a thickening in the scar tissue close to the original tumours but was just ultrasound scanned and sent on my way. At that point I didn’t resale that the gp had mixed up my notes and put the tumours on the right not the left side so when I presented they thought the original cancer was the other side!
Why are we not treated differently with lobular cancer? The only accurate screening is MRI and even at this stage I am being told there is no funding for an MRI. I have offered to pay so hopefully I can at least have a scan as a base line.
I have been unwell on and off for the last two years with arm pain, abdominal bloating etc none of which was taken seriously as a possible recurrence… Things have got to change.
Hi Angela,
I was diagnosed with primary invasive lobular breast cancer in 2019, then secondary spread to lymph nodes and muscle in my chest in 2022.
I am currently on Capecitabine and have a PET-CT scan every 3 months, although I am lucky to have private treatment covered by my husband’s work health insurance.
There are some lobular based groups on Facebook, including Lobular Breast Cancer UK, which I think does a fair bit of campaigning.
I hope your CT scan goes as well as can be hoped for.
Take care.
Lisa x
Thank you for getting back to me Lisa.
I had private cover with my husband’s job the first time around but not this time. Everything so delayed on the NHS. I am fighting for a MRI to at least give me a baseline.
Have you heard of the Lobular Moon shot project? They are trying to raise awareness. Just can’t believe that lobular is treated the same as ductal it’s just not.
Hope you are finding the treatment bearable.
Thanks again for reaching out
Angela x
I’m the opposite, I was NHS for the primary diagnosis. The main difference was in the initial diagnosis, as I’m sure it has been for you, where it felt like the waiting was endless…
I have heard of the Lobular Moon Shot, I actually think they might be based near me around Horsham West Sussex area? Or at least they seem to be active around here.
I agree with you that it needs to be treated differently; it feels like there is a standard path for all, instead of looking at it as a unique disease.
I wasn’t able to have surgery, as by the time I was diagnosed with secondary I had 4 separate tumours in my subclavial area and chest, each relatively spread out, so covering too large an area for surgery.
I hope you have a much better scan result and are able to have surgery. Please let me know how you get on.
Hello Angela. I too had lobular bc in 2009. Lymph nodes clear. I had a mastectomy, chemo, radiotherapy, then 5 years of Tamoxifen and 5 years of Letrozole. About 2.5 years ago i started having problems with my bladder. After scans and tests it turned that it’s the lobular bc around my bladder, so it’s secondary now. Scans indicate that its just in this area. I was on a clinical drug trial for 2 years with Palbociclib and a trial drug. I started getting new systems a few months ago, and although my scans were showing that the cancer was stable, it was decided that i should come off the trial. I’m noe on week 3 of Paclitaxel chemo. I’ll have this weekly for up to 18 weeks. Lobular cancer is really difficult to puck up on scans as they tend to be single cells that sit in a line, rather that ductal bc which clusters so is easier to feel or see on scans. Another good source for information is Dr Liz O’Riordan. She was a breast surgeon until ahe got lobular bc and now campaigns, raises awareness, makes great videos. Hope this helps x
Thanks so much for getting in touch. I hope the chemo goes well. Thank you for the resources. Have you heard of the lobular moonshot project? They are trying to change the guidelines and treatments for lobular.
Xx