Thank you for your reply. The London hospital I was at has just refused my request not only for MRIs but also an appointment with an oncologist (never yet happened) as part of my monitoring so I will make the same requests once my GP has transferred my care to another hospital. I am prepared to look at how to fund MRIs privately if necessary. The other issue is the period of recurrence risk for lobular cancer because I understand it is likelier to be at 15 or 20 years later, but there is only monitoring for five years. Although I had a lobular carcinoma detected early by mammogram, presumably because it was not in a 'single-file' pattern, I understand this is completely atypical and in a focus group organised by LBCUK I was the only patient to whom this applied and it seems that many lobular cancer patients have suffered unnecessary and costly treatments that could have been prevented by earlier detection. The NICE guidelines seem to be out of date with the latest research findings. However, I was told by my London hospital that these guidelines are due to be revised in 2023, so I hope that the more we do to raise awareness in the meantime, the better.
Martina, thank you SO much for that link - I had never heard of that charity and it’s opened my eyes, and spurred me on now to follow up on my request for an MRI scan on my remaining breast. And the big question for me now is why, when it was known that I had lobular cancer in my right breast in 2008, was I never offered an MRI. And when I was subsequently found to have a lump in my left breast in 2019, which turned out to be ductal cancer, but also biopsies were taken from right breast (to satisfy the radiologist’s suspicions), why did they not immediately suspect a recurrence of lobular cancer in my right breast. Instead they agreed to perform a lumpectomy, which revealed 35mm of lobular cancer, and no clear margins. So I then had to go on to a mastectomy with a further 10mm of lobular cancer discovered. My right nipple had started to become inverted and crusty, but because I had no understanding of lobular cancer, I just thought it was scar tissue. Even the consultant said this was probably the case. I watched a video on that website where Jane Hill, the TV presenter, interviewed a radiologist. I knew Jane had had a mastectomy, but not that she had lobular cancer, and that hers was 10cms, and never seen on a mammogram.
I think there is a great need for greater awareness of lobular cancer, and women need to be better informed - as I now am and plan to do something about it.
Thanks for your reply. I have requested to transfer hospital and will be requesting an MRI again once that is done.
Lobular Breast Cancer UK has some information on this and a template for a letter to request an MRI for monitoring.
Hi, thanks for posting, I had almost forgotten that I’d posted this! I haven’t pursued the MRI scan request as yet, as covid/lockdowns have somewhat restricted so much NHS wise that I didn’t feel I could ask again. Yesterday I had my 3 year mammogram, so I await the results - always a nervous time. But I had a mastectomy on the breast that had lobular cancer, and it was ductal cancer in my now remaining breast. The consultant was of the opinion that, as I had not had lobular cancer in that breast, an MRI was unnecessary. But I shall certainly be pursuing that option at the 5 year stage before they discharge me. And I will go for the private option if they refuse.
I would still be interested to hear from anyone else who has had lobular cancer, as to whether they have been offered an MRI?
I requested MRI for follow-up and have been refused anything but a mammogram despite all the evidence that MRI is more accurate for lobular breast cancer. I was told that the guidelines will be reviewed in 2023. But I am also wanting to transfer hospital and i would be interested to know if any hospitals do offer this? Otherwise I will have to try to find the funds for a private MRI scan.
I have only had an MRI at the end of treatment to eliminate all possibilities for my side effects before a referral to neurology. However, my initial cancer was not detected by a mammogram. Yet 6 months later I had two significant breast lumps, lobular cancer, 19/21 lymph nodes infected and in the words of my oncologist “it even broke out in your skin.” Well, yes it did and a good job too - were it not for those two tiny bumps on my areola, I’d still be sitting pretty - ready to face a stage 4 cancer diagnosis when and if my next mammogram picked it up. Even the first ultrasound I had didn't pick anything up (because they thought they weren’t looking for much).
All hospital staff I have quizzed remain insistent that the mammogram is the most reliable form of early detection. There’s also of course the cost factor for using it for routine purposes. Like you, I don’t accept that any more. My cancer wasn’t even early stage - it was well-developed. I’m refusing to live in the ‘what if’ world and worry about it all but I am seriously considering paying for a CT scan or an MRI privately next year. The peace of mind would be worth the loss of a holiday!
So, thought I can’t answer your specific cancer, you’re not alone in your doubts. Once bitten...
I hope you get somewhere. Best wishes xx
Thank you Lucky1 for your very helpful reply. Interestingly I am also in the South West, and was at a major breast care centre. I don’t like (and it’s probably against the guidelines) to name it, but I do wonder if we are at the same one! The consultant offered to see me and go over my concerns, and to make an appointment with him. But that was immediately before the current lockdown, so I am not doing anything about that yet, but I think I will when this is over. I do also have this query in my mind, that as I had lobular cancer in 2008, why when I had a recurrence, did they not do an MRI which might have detected it before I went down the lumpectomy route. And why wasn’t I offered any MRI scans in the 10 year follow up. It wasn’t until this time that I realised my previous cancer had been lobular, I had always assumed it was ductal. I didn’t know so much or ask so many questions in 2008.
At 66 years old, I decided against a reconstruction, though the consultant would have done one at the same time as the mastectomy. I didn’t want major surgery and I recovered so well, I was even swimming at less than 3 weeks. My prosthesis is comfortable, and a good match, and I have quite large boobs. I couldn’t have radiotherapy that side, as I had had it in 2008. But I had radiotherapy on the other side.
If the consultant will not consent to MRI, I think I will pay to have one privately at some point, and certainly by the 5 year stage. As I’ve now had cancer twice in one breast, and once in the other, I must be at fairly high risk.
I have been in a similar situation and asked for my follow checks to include an MRI. My consultant agreed and I have just had my first annual check up which included a mammogram and MRI. Results came back clear just a month ago.
I was diagnosed with a lobular grade 2 cancer in February 2019 after noticing a small spot on the skin which did not go away. I had no lump. Nothing was revealed on a mammogram or ultra sound or on physical examination. A biopsy of the spot revealed cancer cells so I was referred for an MRI which showed a few small areas of cancer cells in my left breast. I had to have a mastectomy.
I queried the value of an annual mammogram as all my mammograms came back clear. My consultant discussed my concerns with the radiology team and it was agreed that annual MRI s were appropriate in the circumstances. I would raise it with your consultant. Good luck. The hospital I attend is the major breast care centre in the South West.
I can't fault the care I have received. The team at the hospital have been amazing. I was offered a Diep flat reconstruction a month or so after my original operation when it was clear that I would not need chemo or radiotherapy. I was reluctant to go through major surgery after having completely recovered from the mastectomy. I came across a new technique using lipo modelling to create a breast. I asked the onco plastic surgeon if that was an option for me. I had small boobs. She agreed and in Feb this year had a short operation as a day case when fat was removed from my thighs and injected into the mastectomy area. I am really pleased with it. I now have a cleavage again and although I wear a small amount of padding I no longer use the prothesis. In a swim suit you can't tell I had a mastectomy. I recovered really quickly and was able to drive within days. I just have a couple of small scars at the top of each thigh.
Good luck and take care everyone.
In 2008 I was diagnosed with bc for the first time, an 8mm lobular cancer in right breast, only discovered after a lumpectomy for DCIS. Lymph nodes clear, radiotherapy, sorted. Fast forward to 2019 and my first routine mammogram, after 10 years apparently all clear. A lump found in left breast which turned out to be 26mm ductal cancer, 1 lymph node positive. But also the radiologist saw a ‘very small’ lesion in my right breast, which also turned out to test positive for bc. The consultant also said this was a tiny lump, not detected on the mammogram, and barely seen with ultrasound. It was agreed to go for another lumpectomy so I had both sides at the same time.
The result for my right side came back as lobular cancer again, no clear margins and I returned for a mastectomy last July. It was in fact 45mm. I have recovered well, and finished treatment last October, now on letrozole plus Adcal-D3.
I was told that I would now just have an annual mammogram for my remaining left breast for 5 years as follow up. After some weeks of reflecting on this, I wrote to the consultant and asked him if i could have an MRI scan at some point as lobular cancer had twice not been detected by mammogram, and barely by ultrasound until it had reached 45mm.
He seems very reluctant to offer me an MRI, saying a mammogram should be sufficient.
I would be interested to know other people’s experience with lobular cancer - have you been offered an MRI? Does it vary between areas and/or consultants? Has anyone decided to go for a private MRI after being refused my NHS?
On a positive note, I have recovered well from all the treatment (though I did not have chemo) and am getting on cheerfully with life again, all be it in lockdown!