Is yearly mammogram enough

Diagnosed with breast cancer Triple negative and inflammatory breast cancer
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My first ‘surveillance mammogram’ is coming up in a fortnight.

This is after 15 months of treatment, finished end of January 2025, which comprised neoadjuvant chemo and immuno, a lumpectomy and full axillary clearance (1 of the 22 nodes removed had cancer cells) a hiatus of 8 weeks on heavy duty steroids for an AKI caused by the immunotherapy, 15 sessions of breast and supraclavicular radiotherapy, and 15 weeks of adjuvant, oral, chemotherapy.

I am puzzled that protocol says an annual surveillance mammogram is enough - not least because two, possibly 3 mammograms, including a 3D mammogram, showed nothing, apart from a cyst (and that in January 2023, less than a year before the TNBC diagnosis in September 2023 - when a smallish, 20mm, tumour and multiple lymph nodes with cancer cells were found by ultrasound and the routine scan doctor’s instincts (and my expressed worries).

Incidentally I nearly didn’t go for the routine scan because the same hospital had discharged me and my worries less than 6 months earlier! Lesson learned - trust your instincts.

I’m hoping the mammograms show nothing - of course - but how do I cope for another year until the next surveillance mammogram, with all the worries about bone mets, brain mets, aching legs at night (as now), recurrence elsewhere, when no other scans, blood tests etc. are involved?

I’m also dreading the mammogram, as I have lymphoedema in my right breast as well as my arm and it’s already painful - without being compressed in a machine! Any tips on how to cope much appreciated.

Peripheral neuropathy in my feet is full-on too, well over a year from the Paclitaxel that caused it. Feeling sorry for myself today. Thanks

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Morning failsbetter,

Youve come to the right place to off load your worries, fears and ask for advise or tips.

I too had a lumpectomy, two infact to gain clear margins then developed odema in surgery breast along with scare tissue and nerve damage, it is extremely painful at times and dread my mammograms which are only once a year.
My last 3 i have put in a request for a US combined with mamo on good breast, some hospitals if the unit isnt busy at the time will do this as you have lymphoedema of breast and arm.
A suggestion also, try applying ibuprofen gel a couple of days leading up to the scan, day of and a day or so after. It helps alot for me.
Im a advocate of going with my ‘instincts’ if at anytime, you feel things are not right, contact your bcn /team to discuss your concerns, dont forget you are on there books as they so call it for 5years.
I wish you well in going foward, sending gentle hugs to you.

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Thank you purplerose for helpful and sympathetic reply. When I was first diagnosed I was quite sure that it had already metastatised to my bones because of an aching calf. This got me a bone scan which, fortunately, showed no mets, but did show arthritis in both knees, and in lumbar spine - which onco said could be the cause of the calf ache, oddly. It’s probably the osteoarthritis aches coming back now after treatment has finished which are making me so anxious. I will do as you suggest and request further scans / US and tell the onco my fears. I’ll also use ibuprofen gel before and on the day of the mammogram. I have plenty which I was prescribed to fend off hand foot syndrome with the oral chemo. I actually did fend that one off - though not peripheral neuropathy or lymphoedema. Best to you too - and hugs

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Evening failsbetter,
I can fully sympathise, totally get the achy calf and osteoarthritis of the knees, lower spine, i too have the same but nearly in every joint now. My primary different to yourself, invasive lobular bc.
Im guessing youve had ostoe a little while and are aware of the bone flares you get with it from time to time, if over done things, i do too.
Let me know if you want to that is, how you get on with your oncologist.
Perhaps also bring to there attention if you havent already done so, that you have osteo too, this can be overlooked in the grand scheme of things when having breast cancer and its treatments and moving forward after treatment has finished.
Sending good vibes to you and hugs

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Hi Failsbetter
I understand your concerns and think you should talk to your cancer nurse and ask for an MRI on the grounds that previous mammograms did not detect your tumour and also the increased pain of having a mammogram when you have lymphoedema in one breast. If they dont agree then put in a complaint to PALS. You deserve to have a scan which is more likely to detect cancer cells. Mammograms detection rate is only 80-90% and worse in younger women. I had a similar problem as my mammogram could not “see” my tumour even though it could be felt. I had to argue my case but I now have a yearly MRI surveillance scan. Good luck and let us know how you get on xx

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Hey x

My advice is that you should have a yearly MRI with contrast . I don’t think mammograms can pick up everything and you need piece of mind .

My tumour wasn’t found on a mammogram … it was only seen on an MRI with dye in my blood … we only knew to go looking for it via MRI because a lymph node popped up under my arm .

It was such a suprise to me because I had assumed that mammograms picked up everything. I now tell all my friends and family to insist on an MRI if they are at risk

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Thank you both for replies. I will request an MRI with contrast, if the onco does not suggest it - I was wondering if I should do a PALs about the visits in November and January 2023 - when I was discharged - less than 7 months before Grade 3 TNBC was found (in 22 lymph nodes too) after a routine scan I nearly didn’t go to…

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Hi, similar issue here, my IDC does not show up on a mammogram, and I too always just assumed that mammograms were the be all and end all. I was the very first at the hospital to have a mammogram with contrast injected (once they had felt/seen the lump was there from the ultrasound), which showed it up nearly as well as an MRI apparently. This is new technology but already starting to pop up in hospitals around the country. The radiologist told me he had had to get it through charity money rather than the NHS having brought it. Fingers crossed they are starting to be rolled out as standard as this will pick up so much more. It’s possible that you could find a hospital that has one and opt for that one maybe?