Some shocking tales on this thread…I always assumed that a mammogram showed any problems in the breast. What an eyeopener and very worrying.
Hi ladies
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
xx
Hi
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.
Lynne
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.
Anne
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.
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?
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.
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
Anne
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.
Linky
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.
X
S
Mammograms are not reliable.
Insist on a scan.
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.
Pauline
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
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!!
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.
Kind regards
Lucy
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.
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.
Anoifmaeve,
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!