Ditto here - strong family history, had a sudden swelling - hadn't noticed anything before, nothing showed up on ultrasound (apart from swollen lymph nodes...ummmmm....hello...!) or mammogram, was dismissed 3 times with antibiotics with them refusing to do a biopsy despite me begging them to do so. On my final visit, after a month on various antibiotics they finally agreed to do a biopsy when I burst into tears and begged them to do one, and hey presto MRI and biopsy showed 3 IDC lumps - biggest at 9cm - with spread to lymph nodes.
As a result I got all nervous about what I was being told and although I trust my new team I am now a pain-in-the-a**e patient as I question and research everything!! Bet my onc HATES me!
Hi folks, it's not just lobular cancer that doesn't show on mammos. I have ductal cancer and I only found it when it had spread to my nodes. The primary ductal tumour remained unseen by any diagnostics until they performed an MRI. It looked "normal" on a mammo, Ultrasound and CT scans. Only the nodal involvement showed up on the other tests.
I discussed with the Oncy the validity of a mammo after 12 months if it hadn't found my cancer in the first place.
His response was that just because my current cancer was in stealth mode, it wouldn't mean that any possible future ones wouldn't be easily seen on a mammo.
I remain concerned.
Hi this is my first post.
I have just been dx with Lobular aged 49. My Sister was dxd with lobular in early 2009 aged 42. We have 2 aunts with lobular.
Her tumour did not show on the mammogram, only on Ultrasound.
I had a palpable lump in late 2009, went for a mammogram and ultrasound in april 2010. Was told there was nothing to worry about just lumpy breasts. Despite my family history. They did not do any form of needle aspiration or biopsy.
The lump continued to grow, and I felt guilty raising it again, but I did in september this year. This time they still saw nothing on the mammo - it was the same as the previous one. They could see something on the ulrasound, and decided to do core biopsies. The result came back as lobular, sized on ultrasound as 3cm. Now waiting for an MRI as told that lobular is very hard to detect on mammo and ultrasound.
I wish I had pushed harder and gone back sooner, because my surgeon is saying it is now too big to do anything other than a full mastectomy.
Still don't understand why they wouldn't do more checks given family history.
Just as a reminder to forum members that if responding to posts, we do not allow the naming of healthcare professionals. We also ask that specific institutions and hospitals are not named in this thread, nor the area of the country in which your experiences occurred, to avoid legal complications.
This is an issue I feel very strongly about. I have read that overall 85% of mammograms detect cancer successfully and that a much more reliable way of detecting tumours etc is with an MRI. I have been told by an expert that detecting cancer in younger women using mammograms alone is not recommended but rather a more thorough approach is advisable which includes ultrasound, physical exmanitation, MRI and biopsy.
I wish this recommended approach had been taken with me. I feel let down with the diagnostic techniques employed by my local service. I presented with a lump, which was palpable to myself, my GP and my boyfriend in early Feb 2010. My local service gave me a mammogram and an ultrasound but no examination before they concluded that no abnormality was found on the screenings other than a 'nodular area' and 'reassured' me and discharged me back to GP care.
However, the lump and pain got worse and in September 2010 I was referred again. Again, the mammogram showed no abnormality and I asked for an ultrasound during which the radiologist could not see anything. I pleaded with her to take me seriously and took her hand and laid it on the palpable area. Thanks to my pleading she could feel something, persisted with the ultrasound and found an abnormal area on the screen.
I have since had a lumpectomy (three months after a positive biopsy!!), chemo, maestectomy and radiotherapy. One bombshell after another.
It is clear from some of the posts that 'older' women are reassured by false negatives with mammograms. I was breast aware and not taken seriously in my view.
BCC do not support postings that may induce or reflect legal / political campaigning so I would be most grateful if any of you would be moved to contact me privately.
I believe that each time a woman presents at a breast screening clinic, she should not be reliant individual Cons or Reg's expertise but rather the profession at large, a collective of best practice. Best wishes all and here's for improvements!!
hi I had a mammogram which was clear, 3 months later I could feel the lump myself,
my onc told me that mammograms are not 100% if in doubt ask for an ultrasound scan,
even when I found the lump and had a core biopsy, performed by the bcn she missed the lump completely, the results were negative,
I told my onc I wasnt happy with that having had a previous diagnosis on the opposite side, 11 years earlier,
a second core biopsy was performed using ultra sound, came back grade 3 tumour I am 45 years old!!
If in doubt, keep insisting until you are satisfied with the answers you get,
all the best Liz x
I was referred to breast clinic in Jan 2010 after finding a lump. I had a mammo and an u/s, both of which were clear. I then had a core biopsy and returned a week later for results and was told that the tissue taken was healthy. They asked me to go back 6 weeks later for a further core biopsy (lot of bleeding and bruising - doc who did it wasn't very good)as they thought the tissue samples may have been contaminated by bleeding. I returned to clinic, but consultant said there was no need to do further core biopsy as I had had a clear mammo and u/s and he would not consider surgery to remove the lump, saying it was breast tissue and I should familiarise myself with what was normal for me.
I went back to my doctor in November 2010 and she re-referred me to a different consultant. Again I had mammo, u/s and core biopsy, all of which were clear. However, this time the consultant decided to remove the lump and "let pathology have a look". That's when I discovered I had IDC Grade 2 Stage 2. They then decided to give me an MRI scan to make sure nothing else had been missed, but by then I had had surgery twice and had to wait for 3 months before MRI could be done.
I had 6 monthly check recently (only a vague examination of breast). I was told that at my 12 month check I would have a mammogram, but because of the "rare" difficulties encountered in my diagnosis, if mammo was clear, I would then have a MRI scan.
I really can't see why they are even considering a mammo and would be more reassured if I knew I would always get a scan.
My experience and all the posts here just confirm to me that this is not an exact science. There are different types of tumours and different types of breasts and different types of examination that all interact differently and leave us with very little confidence. My own personal experience of invasive lobular and lots of (over) inestigation as the result have made me be a bit more humble in expecting to know what the exact situation is. Would be great if I really knew what the likeliehood of recurrence was but despite Oncotype DX results,I still feel I'm in the hands of the gods.
But saying that I do know that my type doesn't show up on ultrasound and will be banging the drums for whatever version is good.
Re the cost of ultrasound scan, it is £215 if done privately so presumably less if done by the NHS. Not a great deal in the scheme of things when we are talking about monitoring for cancer. I am not going to let them get away without doing it.
I agree it is a hard call but my tumour was never palpable as it was very deep. I was told that it would have been very large by the time it became palpable, and could well have spread. I do therefore appreciate having annual MRI scans.
All the best
This is a very hard call I think. I too had a routine 3 yearly mammogram and nothing showed up and two months later I noticed my indented nipple and had a ultrasound scan and biopsy and I had a 9cm tumour + lymph node involvement. I went to see my mammogram pictures, invited by the radiologist and as I have dense breasts its difficult to detect tumours by mammogram. The alternative is MRI and I was told I could have them if I wanted. My surgeon has advised against as he said that an MRI is so sensative anything will show up and that it will result in a definate recall and then biopsy and generally overtreatment. His view is that on my good breast I keep a good eye on it, check it regularly and any changes at all then report to the clinic they will then do an ultra scan - To be honest I do think sometimes you can be overscanned and the anxious waiting for results it not good. fingers crossed that I am checking my good breast and that if anything sinister happens then I will find it.
Just out of interest, and probably veering off topic slightly, what happens when you go for your 1st 6 monthly check-up? Mine is in November and TBH have not given it much thought until I read this thread. Will it just be a breast examination? I know it won't be a mammogram as that is 12 months after op. Is an ultrasound part of the procedure for the 1st. appt?
I am like Anne. Recalled after routine screening aged 65 because IDC showed on routine mammography, localised further by U/S for biopsy. At that time WLE node sampling and radiotherapy proposed. Because of pre existing lung fibrosis, radiotherapy was contra indicated and so that was changed to mastectomy and axillary node clearance, without recon.
Post surgery results showed the IDC Grade 3 of 13mms was inside a non predicted 21mms area of DCIS, so I am glad it wasn't WLE as would probably have needed further excision. Nodes were negative but as triple negative and Grade 3 had FEC x6.
I have already asked my oncologist about follow up and he suggested U/S back up to mammography, but thereafter the surgeon said U/S does not show anything if mammography does not show anything.
I think this thread shows otherwise.
My invasive cancer showed up on a mammogram but the DCIS didn't and was only found when they analysed the tissue removed during my WLE. I had had a mammogram 18 months before and nothing showed but I suspect the DCIS was there then and had it been found and removed, maybe I wouldn't have ended up with invasive cancer. I was 55 when diagnosed so the argument that mammograms don't work so well for younger women doesn't apply. I now have MRI scans as well as mammograms.
My calcifications did show on the mammo but not the ultra-sound when I had my screening visit. No lump to see & I was lucky the mammo did as my breast tissue was "dense" it can cloud the results.
If not picked up on mammo my DCIS would have gone undetected & then who knows how it would have developed over time.
I queried about MRI as concerned mammo wouldn't pick up any changes when I have annual check (due Oct). I was told by surgeon mammo still the best method of detecting any changes but I'm not confident to be quite honest. Especially with some of the posts on here. Oh was also told MRI scan have a lot of "ghost" findings.
Just to add myself to this thread - my >5.5cm tumour didn't show up on mammogram, ultrasound, CT or MRI and was only found when they were doing a WLE as I had Paget's disease of the nipple.
I have zero faith in scans and have no idea how they intend to see if some nasties creep back. Like others, I've been told I'll have regular mammograms...what's the point in that????
Best wishes to all
Some shocking tales on this thread...I always assumed that a mammogram showed any problems in the breast. What an eyeopener and very worrying.
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 😞
Mine stuck out too .. 6 cm big .. but still not detected on mammogram .. so I don't want to rely on them !
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
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 !)
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?
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!!!
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).
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
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
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.
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.
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!
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
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!
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.
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.
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.
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.
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.