IF MAMMOGRAMS DON'T SHOW THE LUMP

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I’m not sure if this is under the right topic area but I can’t see where else to put it!

Last year I found a lump in my breast (since had lumpectomy, lymph node clearance, rads and am on tamoxifen for 5 years). My question relates to the follow-up checks.

Before I discovered the lump, I had had regular mammograms (all OK). When I discovered the lump, I was referred to the Breast Clinic at the hospital, where I had a mammogram. I then (the same day) had a scan; and the Doctor doing this told me that my lump had not shown up on the mammogram(ie the mammogram that day, even though everybody knew there was a lump there). They found it on the scan, did a biopsy and I had my ops etc.

When I saw the consultant last August, she said I would come for a mammogram in February. At that time, I expressed my concern that the mammograms did not and had not detected my lump (even when we knew it was there) and I wanted a scan. I was assured this would be taken into consideration.

In February, I saw her Senior Registrar (turns out she wasn’t there that day), and he said mammogram. I explained again my concerns to be told mammograms are better, they have a higher percentage detection rate…

Now, I go for my next appointment on 17 August. I want a scan. I will not be convinced that I am OK until I do. I have spoken to my GP about this; and she has agreed to write to the hospital in advance. However, she has said that she cannot force them to do a scan and, if they do not, I may have to pay £215 for this to be done privately. This is outrageous. So, I have two questions.

Does anybody else have experience/statistics of lumps not showing up on mammograms? I should add here that I know mammos sometimes don’t work for younger women because their breasts may be too dense but I am 57!

Do you have any advice about what to say/do if I am still refused a scan. After all, my one year check was February and I remain worried.

Any thoughts/suggestions would be much appreciated.

Linky

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Hi Linky

I will shortly be in the same position as the mammogram I had last July did not show the lump in my breast, which by the time I noticed it was 60mm, and still did not show on the mammogram but only on ultrasound. I am 52.

There is no way I am going to rely on mammograms from now on so will be interested to see others experiences too.

DaisyGirl xx

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Mine also didn’t show up on mammo but did on US, so my surgeon sent me for an MRI in case there was anything else in there that hadn’t shown up. Fortunately there wasn’t (after a brief scare about another area for concern on the MRI). I have been back for a couple of ultrasounds subsequently when I found lumps, as I’m very prone to cysts which of course makes it very difficult to find new lumps that might be sinister, so I asked for as many cysts as possible to be drained so I’m not so lumpy, which they did.

I think I will be insisting on US as a very bare minimum, because with all these cysts I have, I’m surprised they can see anything at all in there.

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That’s a problem that applies to me.
My primary didn’t show on a mammo.
Didn’t show on an u/s scan.
Didn’t even shown on a CT scan.

It was only detectable on an MRI.

I went to the docs because I’d found a swelling in my lymph nodes that turned out to be full of metastatic cells.

So I’m even more worried than you are! There is NO WAY that they are going to do regular breast screenings by MRI, after all, the mammo is so good, isn’t it?
Not in my case.

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Hi Linky

I’m a bit younger (39), but have had two mammograms in the last three weeks, and neither have detected anything unusual at all.
Ultrasound picked up two lumps (one of which I could feel - hence going to the GP in the first place), and MRI confirmed these and detected a third suspicious area.
I had a mastectomy on Thursday and feel extremely fortunate that firstly I could feel a lump at all, and that secondly my radiologist wasn’t happy just to rely on mammograms.
I have been told that follow up imaging will most likely be MRI, which is of some relief. I think that if mammograms did not detect any irregularities in your case, it is ludicrous to suggest that you should rely on that imaging technique solely in the future. Keep pushing for ultrasound and MRI too. Good luck.

Calx

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I was 40 when I had my first primary - found a lump, but although they could feel it, it didn’t show up on either mammogram or u/s. It was high grade DCIS and was 4cm. They explained to me that cos I was quite young, lumps don’t always show up on imaging.

Luckily the biopsies showed the dcis, but it took 3 months before I got a diagnosis, and it was a really stressful time. I ended up having lupectomy, then went in again to get clear margins, then I had 25 rads.

My second bc experience was last year when I had Paget’s of the nipple, and this time I had mx. I’m due for another mammogram in October - I’m 50 now, and will have annual mammos for 5yrs then go onto the normal screening programme.

My hosp were very good, and even when I got to 5yrs after the DCIS, they still mammo’d me every two years, till I got to 50 - and then of course, I get the Paget’s, so its back to annual mammos again.

I dont reckon much to mammos cos they didnt find my dcis, and neither did the u/s. But, it’s better than nothing at all, and I just keep a good eye on my remaining boob. Like other people on here, I’m prone to benign lumps - lipomas in my case, so I’ve had two or three scares between my first and second diagnosis’s.

There’s no easy answer is there! So sorry I couldnt say differently, so as to reassure you!

Much love,
Shelley xxx

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I’ve just posted here for you Linky, but for some reason it’s gone to the moderator first. Dunno why - I’ve been coming on here since last Sept/Oct. Have I been naughty without realising it mods!!! Luv, Shelley xxx

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Hi Shelley

The ‘Standards in diagnosis and care’ section is a moderated one regardless of who is posting so don’t worry you are not in trouble!

Best wishes
Lucy

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Mine didn’t show up on mamm or US either. I was sent home from the breast clinic in February and told I was fine. It was only when I went back 2 months later that they did the needle biopsy (just in case) and found the suspicious stuff and after a core biopsy i was diagnosed with high grade DCIS. I was then sent off for a MRI which showed very clearly a rather large 8cm by 4.5cm area and after mx was also found to have multiple areas of microinvasion. I’m 40.
I will not be reassured by standard screening, but don’t know whether I will be able to have MRI’s.
x

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cancer didn’t show on two mammograms within one month of each other. Lump detected by me and then found by ultrasound three months later and was very visible. Still not seen on mammogram! 6 cm with margins so had to have mastectomy.

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Hi, mine didn’t show up on mammo either, in 2008 I went for mammo February, got letter 2 weeks later no sign of cancer, in April 2008 I found the lump myself, had IDC grade 3 also micro mets to axiliry, so had lumpectomy, then mastectomy chemo and rads, just been for mammo last week and am waiting for letter, not much faith though. Take care all junieliz

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Linky, that’s awful.

My lump didn’t show on mammogram either.

After my initial diagnosis, I had the same concerns as you when I was told follow-up would be by yearly mammo.

I wasn’t under an onc at the time and eailed my surgeon and the radiologist who’d found the lump with ultrasound and done the core biopsies to ask if I might have an ultrasound as well as a mammogram. The answer was yes, although it was not usual, they agreed that in my case it was a better way to see what was going on.

It was only because of these regular scans that the regional recurrence in my axilla was found. It was very high up, there was no recurrence in the breast, and it would not have been found by mammogram.

PLease push for commonsense follow-up. Half the time the doctors quote evidence, then say actually the reason the evidence shows this is because the other studies haven’t been done, but everyone suspects a different course of action would be better.

Best of luck. I really don’t think there is any reason at all for you to pay. xxx

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I am 57 years old as well. My last mammogram was in November 2006, which was clear. In November 2009 (when I was due for my next mammogram), I discovered a lump. It was then discovered that I not only had a 3.5cm tumour and 14 out of. 23 lymph nodes involved, but the cancer had also spread to my bone (skull). So basically things went from nothing in 2006, to stage 4 in 2009 - could this mean the mammogram missed things? I have wondered, as it seems odd that things progressed that fast - particularly as my primary was only a grade 2 tumour (and so not very aggressive).

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Thank you all for your coments. I have decided that if I don’t get my ultrasound scan on 17 August, I will be writing to the Chief Executive of the hospital and my MP (who can write to the Secretary of State for Health) and anyone else I can think of. At least now, you have told me that my problem is not unusual; and if that is the case, why do they rely on mammograms. Apart from the fact that they don’t always work, they are painful. Well, they are in my case. My boobs are so samll, they have a problem squashing them in and have to have a second go!!!

Linky

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I asked the question about mammograms … surely we should all have ultrasound as this is the only thing that picks up tumours. Well, ultrasound is very expensive compared to mammograms and can only be directed at a specific area … not the whole boob… I was told. Hhhmmmm?

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Hi, I’ve had a similar experience and was astounded that my oncologist said my follow up annual checks would be mammograms!! When I questioned him about the mammogram not detecting my lump (which turned out to be Stage 2) he agreed that I would have MRI instead. I am only 4 weeks post surgery and haven’t started chemo yet but it does question your faith in the health service (and that’s private !)

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My lump DID show up on the mammogram and thank god it did as i had no idea i had a lump. I had gone to the clinic is my left breast felt sore, they did mammogram on both breasts and found a 10 mm lump in right breast which was clearly visible on the mammogram but consultant said i would not have felt it for a long time to come
Mel x

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I didn’t need anything electrical to see mine. It stuck out like a golf ball!

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Mine stuck out too … 6 cm big … but still not detected on mammogram … so I don’t want to rely on them !

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angielav says “I asked the question about mammograms … surely we should all have ultrasound as this is the only thing that picks up tumours”

As I stated above, that’s not true. My tumour did NOT show up on u/s and not even on CT scan, only an MRI found it. If u/s did become the new ‘gold standard’, I’m still effed :frowning: