Dense Breast Cancer and Mammogram failure.

[TISHABOO]

I think just knowing ourselves that we have High Breast Density keeps us "Breast aware" it has been kept secret from us for too long. keep your surgeon close.

[Tussie]

Hi all! Went to see the surgeon yesterday to discuss my follow up arrangements after treatment finished. As mentioned before my concern was my tumor did not show up on mammogram , u/s or MRI and was only found by a nipple biopsy. He explained that the tumor was very close to the nipple just under the skin surface hence very difficult/ impossible to detect on any imaging. I enquired about the Tomosynthesis It is used quite a bit in the US but his impression is it is very much market driven. With the Tomosynthesis you will be exposed to more radiation as it requires more images to be taken and the test is only as good as the radiologist interpreting the images. In studies the radiologists have all the time in the world to examine the images but this does no necessarily translate into everyday work they do.
The surgeon said now that I have a history of breast cancer they will watch me like a hawk. He gave me a request form for a mammogram and follow up app with him in November and be sent for further tests if needs be. I do have dense breast tissue but he tried to reassure me they are fully aware of this. Not sure if he succeeded! Anyway, it was good to see him again and he said I can come back anytime with any queries I have. x

[TISHABOO]

Yes Jill, we certainly are they will soon have to listen to what is happening to many women and stop it early by finding a way to protect ladies who mammograms fail, Best wishes,xx

[lavendersblue]

Mammograms and ultra sound scan both failed to detect my radiation induced Angiosarcoma too . Both came back clear , if my breast consultant had not been so diligent and sent me for a skin punch biopsy , I would be in far worse place than I am at the moment . I am wondering how many mammograms failed to detect it , in my annual ones after my breast cancer treatment ??

Education , awareness and knowledge are so important in fighting these hideous diseases ...yet I feel we are sadly let down by the so called experts .
Hugs,
Jill xx

[DizzyDee]

Hi Girls i will let you know if its available privately at Royal Marsden . Some of my consiltants also work at the London Breast Clinic 108 Harley Street. On their website it quotes the price of £260 for a Digital breast tomosynthesis with full report. Hope this helps anyone whos interested as i am defintely going for it if i can't get it at RM. Will find out and report back. Xxx

[TISHABOO]

I hope that your surgeon will answer your questions, everybody that I speak to are very careful what they say as It will not be available for us yet.
I think the surgeons work would be easier if it was found early.

[Tussie]

Hi all, just founds this interesting thread. Cut a long story short, I had a bleeding nipple for over 2 years, never felt a lump and scan after scan, mammo and u/s all always clear, a nipple biopsy confirmed grade 2 cancer eventually and after WLE changed to grade 3 and also HER2+. The tumor was small 8mm but obviously aggressive. Had 2 2WLE and just finished chemo now awaiting radiotherapy. I was told about having dense breast tissue and the problem scanning have to pick up tumors, I should say I had an MRI scan 1 week before my first op and even that did not pick up the tumor. I had heard about the 3 digital Tomosynthesis, it is similar to the usual mammogram and I got the impression that it was useful for people with dense breast tissue. I have since enquired if I could have this done as a follow up after my treatment has finished and the answer is that the machine is available but radiologists do not yet know where it fits in into surveillance programmes. I know it is not part of the National screening program and I offered to pay for it privately but there seems to be a hesitance. I will see the surgeon again in a couple of weeks to discuss my follow up arrangement and see what he has to say. xx

[TISHABOO]

Many NHS screaning clinics have over the last 5 years just had the new digital machines and so I don't think we will have the DBT being offered just yet, but maybe in hospitals very soon.

[DizzyDee]

Thanks for this thread girls. I too am worried about mamos being a waste of time for dense breasts and i had lobular invasive which doesnt tend to show up. I found the lump. I have come across a new ultrasound called digital breast tomosynthesis or DBT. Its offered at the royal marsden where i am being treated. I'm NHS but am going to look into paying privately to have that done once a year. Its specifically for dense breasts. Hope that helps Dee xxx

[TISHABOO]

Hi i can see that you feel worried about going back to your normal routine for mammograms, I phoned our local private hospital and asked for a breast ultrasound and yes I paid £100 only then to be told that the radioligist would not do "Just" a ultrasound she would however do a mammogram followed by an ultrasound then costing £400 as they do not do single ultrasound, I do not want to pay for the mammogram knowing that for me it's worthless.
They knew that I was not happy then arranged for me to have a MRI which costs the NHS a lot more money.
I would have been quite happy with an additional ultrsound costing NHS £80

[saffronseed]

i have been able to have ultra sound as well as mamnogram yearly but only because I have requested - they refused mri on the grounds that it is so sensative and picks everything up so I would definately be recalled for an ultra sound anyway and that would cause me anxiety having a recall and they called it 'over treatment'   Still not sure what is the best way to deal with dense breasts and I think the jury is still out on 'best treatments'.   I am now at the stage when I go will back into the normal 5 yearly mammograms and I am a bit anxious about that given my history so I may ask to pay for an ultra sounds I think its only around £100 and worth the peace of mind  (although I am clearly told ultra sound is not a screening tool and is not as good as a mammogram).   x

[Ash66]

I was 'lucky' my mum had bc 5 years ago so the locum dr asked me if I wanted checked out. I said yes and was happy the mammogram was clear and dr I saw at clinic dismissed the lump as normal breast tissue. They then decided to do an ultrasound and that's when it was found. Even then they said 10mm and grade 1. When they took it out it was 35mm and grade 3. Also her2+ so I went on to chemo and I asked for bilateral mastectomy as I no longer trust mammograms. Fortunately my surgeon agreed. I know it doesn't guarantee it won't come back but psychologically, I feel safer. I haven't decided whether to have reconstruction or not.

[TISHABOO]

I am so angry too. They know all about it but it's not on there regime yet and so just doing what NHS ask of them and that is to do a mammogram and if the radioligist can't see cancer then it's negative, they cannot see a Polar bear in a snow storm.
They need to speak to ladies with High Breast density and make them aware that in their case mammograms may not pick up anything sinister.
I went to a few routine mammograms feeling this "Thickning" and after telling them my mammogram came back all clear so I wasn't worried.
It was only because I was going to donate one of my kidneys to my son that I thought I would ask my GP for a referal thinking it could need antibiotics if it was something.
I could not believe it when they told me it was cancer measuring 7cm and a grade 3+ this meant that I have had this a long time I am now 2 and a half years since diagnoses and i do worry about it coming back.

[Jobey68]

It's just not good enough to only offer mammograms anymore, I had a special diagnostic one at the clinic which still showed nothing so had I only gone for a standard one in morrisons car park I would have stood no chance for god knows how many years! they we're very thorough at the breast clinic but I was examined initially by a surgeon and she said she was happy I had nothing to worry about so I could have walked out then but said I would feel happier having the full works, although I'm incredible grateful they found what they did it was still by sheer luck and I have no idea about self checking as mine wasn't palpable, I found a lump which sent me to the dr in the first place but it was fat so I don't know what a tumour feels like, I'm certainly going to be asking for further testing next year, I'm not accepting just a mammogram when it's my life at stake! Xx

[TISHABOO]

Good Morning Kim,
I am so happy for you finding Cancer at grade 1 is hopefully the future for all ladies but if they don't help us ladies with High Breast density they won't find it early.
I kept telling them at my routine mammograms that my breast felt lummpy all they asked was if it was new I told them that I had felt this "Thickning" for a few years ans so they said let us know when you feel somthing new.
As my Breast cancer was 7cm and grade 3+ yes I had it a long time undetected.
Thanks

[TISHABOO]

Hi M,
Thank you for your reply, I had to make a real fuss as they (like you) only wanted to do an annual mammogram on my remaining breast.
I insisted on an additional ultrasound and I think they realised that I could complain they then told me that i was going to have a MRI annualy from now on, I hope that you too can get a MRI in addition to your mammogram they keep telling me that I still need a mammogram yet it's a complete waste of money for them.
I have asked BBC for help and they advised me to speak to my radioligist which is all I have done.
I too keep saying they want to stop Breast Cancer in it's early stage yet won't do additional tests when they know they can't see anything on a mammogram, you would think that if they an't see on a mammogram it's wrong to say "No sign of Cancer"
I am glad that my article will help you that's what I wanted only the journalist wanted a personal story to get ladies reading it.
I have been told that at the moment they don't know how to tell us about High Breast Density without causing Panic! and maybe doing extra tests may cause the lady to worry for nothing.
I told them that I would have prefered a few weeks worry than be dead.
I will look into getting in touch with NICE as so far nobody seems to be listening, yet when I tell ladies they are surprised they have never heard of it.
Thanks Pat

[Jobey68]

My mammogram was clear at breast clinic and I was told I had mixed density breast tissue, Ultrasound afterwards picked up a lump that was biopsied and turned out to harmless Fibrodenema but it also picked up some cancer cells lurking on the outside which hadn't shown on either mammogram or US so I've been incredibly lucky as it was a grade 1 Tubular cancer which can take years to turn in to anything detectable!
Now I'm being offered annual breast check and mammogram for 5 years , this Doesn't fill me with much confidence 😕

[Butterfly318]

Morning Magical Moon & other ladies..

I had a Mammogram 1st one at 49  October 2011.  All clear no concerns.. I felt a change to the outside of my right breast when getting dressed in September 2012 but not feeling like a lump as such.... this is because it filled about half my breast and was looking like a 6.5 cm area of concern.  My Consultant did send for the Mammogram shots after the event but i too am very cross as i regularly checked myself / breast aware and both the consultant and oncologist agreed it was likely to have been developing for a long time.........it really should have been picked up.........That said i am grateful for the treatment i have had and to still be alive.........

I have since had Chemo first,   surgery x 5 and rads. I don't know the answer.  At my diagnosis appt. breast density was mentioned and i am hypervigilant now with my one remaining breast.  I know a test is currently being trialled where diagnosis / screening will be via a blood test but not sure how long this will take and as we know nothng is 100%,

I will go onto Letrozole next month after 2 years Tamoxifen and currently NED but i too will ask about ultrasound on left breast at next Mammogram. I am very gratefu

Wishing everybody a lovely weekend.  Take Care  Gilly x    

[Magical_Moon]

Hello Pat,
Thank you for bringing your press article to my attention. It was interesting and very enlightening.
Reading the statistics that 40% of women in UK have dense breast tissue, I would have expected the NICE guidelines to acknowledge this fact and include ultra sound scans (as a given) for those ladies with a high breast density. There is so much publicity given to the huge advances which have been made in the treatment and earlier detection of BC and yet it would appear there is a significant missing element in the screening process for ladies with dense breasts.
Surely, giving ladies (with a high density percentage) an ultra sound scan rather than a standard mammogram would save NHS money in the long term, especially if it resulted in earlier detection with the possibility of less radical surgery and treatment.
At my first annual mammogram post BC, the radiographer told me I had dense breast tissue. Thanks to your BCC thread and press article, I will make a point of asking at my second annual mammogram in October whether it would be more appropriate to have an ultra sound scan instead of a mammogram.
Please can I ask you whether you have made any enquiries with NICE to raise this issue?
M x

[TISHABOO]

Hi Marie,
I am so glad that your dr. noticed your lump and you knew not to rely on your mammogram even my GP did not know anything about Dense Breast Tissue and as mine felt so large 7cm he said it won't be Cancer.

[TISHABOO]

Thank you Magical Moon please read my article in the Daily Mail (Health) Pat Copestake let me know what you think.

[Mindy63]

I was indeed very lucky lump was felt by an astute doctor. Don't know how long it had been there. I'd never have felt it! Too much reliance on machines these days. I had absolutely no idea my regular mammograms (family history) were worthless! Thank God for professional, qualified doctors who trust their judgement!

[Magical_Moon]

Hi Tishaboo,
Wow! Someone should have told you rather than keep you in the dark. It is your body after all. You would have thought that when they knew you had dense breast tissue and sinister lumps would not show up in a mammogram, they would have checked you with ultrasound scanning from the outset.
Your BC experience is very sad and shocking.
Big hug.
M x

[TISHABOO]

Thanks for that,
It needs to be more out there nobody is getting told until after diagnoses. Looking at my files they knew 10 years ago that "if" I ever got cancer it would not show on my mammograms yet still kept this a secret from me and continued only doing mammograms every 3 years.
My records show "No sign of Cancer " even on day od diagnoses.
The ultrasound picked my 7cm tumour straight away, then there was panic.

[Magical_Moon]

Hi Ladies,
In March 2013, I had a routine mammogram that came back CLEAR.
Six months later, I felt a lump and on referral to Breast Clinic had further tests (Mammogram, Ultrasound and Core Biopsy). Only at this mammogram, I was told I had dense breast tissue. Diagnosed with Invasive Ductal BC. 19mm tumour, WLE, rads and hormone therapy followed.
I have always been breast aware and check myself. I was quite shocked that six months after a CLEAR mammogram a 19mm tumour had grown.
My heart goes out to all the ladies here who had much larger tumours lurking after a CLEAR mammogram.
Since being told I have dense breast tissue, I have found out that my Breast Clinic has two mammogram X-ray machines. One of which is used for ladies with dense breast tissue. However, in technical terms, I do not know how they differ.
M x

[TISHABOO]

I had to fight for additional screening on my remaining breast as i told them that I was not happy with a mammogram as it was a waste of time doing it,I asked for an aditional ultrasound then after telling them my conserns my radioligist then told me that I would now have a annual MRI in addition to a annual mammogram so that will help me.

[Curleychris]

I heard of dense breast tissue following my Mastectomy. I was lucky my breast cancer was detected by mammogram but I am still concerned as at my last Mammogram of remaining breast I was told I have dense breast tissue. I am on hormone therapy for 10 years so I keep checking and hoping not to discover anything new.

[TISHABOO]

Yes I'm pleased they found it early for you as mine was left undetected I had chemotherapy massectomy,rads and now hormone therapy for 10 years.

[Sparkle-at-50]

I had a "clear"  first routine mammogram at age 50. 3 months later found lump.WLE & rads followed.

[TISHABOO]

You were lucky that your head radioligist explaned it to you I was only told "Sometime it doesn't pick it up I had to ask a Expert at the Royal Marsden to look at my mammograms and only then was I told about "Dense Breasts" before that I had never heard of it and I think women should e aware of this as soon as you have your 3 yearly routine mammograms as mine was "Noted" 10 years ago.

[TISHABOO]

Yes they kept telling me that the "Thickning" I could feel was "Normal" for me and come back when you feel something new so that's why it went on so long, I think 10years as it was so advanced.

[saffronseed]

yes me too  9cm tumour one month after clear mammo.   I was told I have dense breasts and mammograms do not pick up changes with dense breasts - I met with the head radiologist and she went through my mammograms with me and yes she was right all you could see was fog!   She told me that mammograms are 90% accurate but 10% of ladies with a all clear results won't be - and for me that was new as I just assumed that if you got a clear result then that was it - but its not.   the moral of the story is to check yourself regularly and don't just rely on a clear results. 

[Ash66]

Me too. Found thickening of breast. I was 48. Mammogram was clear and if they hadn't done an ultrasound, it wouldn't have been found. Tumour was 35mm and grade 3. Only explanation I got was dense tissue.

[TISHABOO]

Yes mine measured 7cm just 6 months after routine mammogram reported no sign of Cancer wish I had been told at age 49 and not 58 then it too would of been tiny.
I think it needs to be out there for women to know this.

[Mindy63]

Me! Though I was technically premopausal (49. Yrs-regular periods) . All mammograms clear but had a 20mm tumour.

[TISHABOO]

Good Morning,

Who knows if they have Dense Breast Tissue after the menopause and the failure in routine Mammograms, I have a story to tell.