Hi everyone, brief history, age 45 diagnosed with Idc May 2012, 12mm grade 2 tumour and one positive node. Had chemo and rads. I had been attending annual screening since 2005 as my sister was diagnosed at the age of 28 (she died at 32 of secondary bc). my last mammogram prior to diagnosis was nov 2011 which was clear. I felt a thickness in my breast the following May which proved to be breastcancer. My consultant at the time said mammograms had been a waste of time for me and in his words “it was like looking through a snowstorm”, and I should have had mri’s. so my question is and what I’m finding hard to get my head round why oh why did no one ever tell me at the screening centre ?? It’s only now that I am feeling angry that this could have all been prevented or caught earlier before it got into my nodes. I know I’m a year post treatment but i am finding it so hard to trust my consultant/oncologist when they tell me that mammograms are still the best screening tool. I’m so scared it’s going to come back, and will be missed again. I know I’m being really negative but I just don’t trust anyone or anything they tell me, Has anyone had a similar experience? Thanks Michelle
Hi Michelle,
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Jo, Moderator
Evening Michelle.
I haven’t had a similar experience at all but do think similar thoughts. I was diagnosed at 50 with 6.5cm idc right breast er+ pr+ her2 -
I had a Mammogram 2 years previous which was allegedly clear. How did it get so big in such a short space of time. It was linear along the side of my breast and only showed as a small lump.
Following my treatment i attended a Breast Cancer Care Moving Forward Course during which we were able to discuss with one of the Consultants from that hospital (not the unit where i had treatment) Diagnosis / treatment etc.
It was really useful to discuss this with somebody not involved in my care and lots of people asked loads of questions…
He reported that Mastectomy is currently the best general route for identifying Breast lumps / thickening whether they are Cancerous or Benign. In recent years the largest group are in the age 45 - 55 so why can’t they bring Mammograms forward to 35 ? 45 ? And catch them early??? Simples?? But this is where it has little value as at younger ages the Breast Tissue is far more dense and therefore difficult to identify / spot any changes… So it does appear that this is the best route / check up for you from here on in. When some of the younger ladies in the group asked what is the best way of monitoring for younger women and he felt that being aware / checking for lumps and having them checked out as soon as you have identified any changes was the best diagnostic tool when breast tissue is dense in younger ladies. Depending on whether you shared a family Doctor with your Sister and whether there is a familial link, if you had the GP might have picked up a link and suggested a different, maybe ultra sound, MRI or thermal imaging test. I guess the screening centre just carry out what is requested.
It is really difficult Michelle when people involved in our care make comments like ‘it was like looking though a snowstorm’ i am sure they don’t realise how worrying this can be.
I beat myself up every day. How the he** did i miss that great lump? I am a Nurse and thought i was ‘on it’ turns out i knew nothing and likewise working in Mental Health (where everything is not black and white) i just assumed in Physical Health things were more straight forward I would be diagnosed, treatment planned and i would be good to go… Not so… I had Neo Adjuvant Chemo 6 FecT to shrink the tumour. Prior to this the Onc couldn’t say how much he expected it to shrink??? Following Chemo it didn’t look like it had responded much !!! The Onc and Oncoplastic surgeon couldn’t hide their disappointment. (I felt like a little girl who had behaved really badly). So i had to have a Breast MRI to ‘get a better picture’. I lay on my stomach with Breasts in purpose built holes for 50 mins while the MRI clunked and banged then cold fluid was injected into my veins and the process repeated for a further 50 mins. It took every meditation / visualization / deep breathing technique i had every practiced with my patients over the years. I have never felt so vulnerable or frightened but told myself they needed this to see how much it had shrunk… MDT reviewed the scans for two weeks whilst i worried and then they told me ‘it wasn’t really clear!!!’ Don’t worry though as we’ll have a better picture when we have removed it. I just sat in my car and sobbed… and sobbed… I always thought MRI scans were the Gold Standard in scans and were infallible.
I remember feeling so frustrated at, what felt like, their lack of understanding and such flippant comments. I had 2 wle then mx, tissue expander in place to be exchanged later this year. Also had rads. Despite my frustration i know in my heart (on a good day) that my Onc and Surgeon have my best interest at heart and all of my treatment has been first class. After surgery Onc and BC Nurses have spent a great deal of time going through all the letters / Pathology reports etc to reassure me.
I too worry that it will come back / it hasn’t really gone and really beat myself up. I hope that as time goes on this anger (cos that’s what it is) and levels of anxiety will reduce.
Sorry such a long post… Hope it helps Michelle to know your thinking is rational and probably similar to other people whatever their diagnosis / treatment routes…
Take Care Gilly x
Michelle
Not sure if this consultant is a breast surgeon, oncologist or radiologist… But if a BS or onc then he may have completely different views to the radiologists who are actually reading the pictures.
As gilly said although mammograms may not be perfect they are the best we have… Even those who have screening by MRI they still get mammos as well as MRI not instead of MRI as what one method picks up, there is also something it may miss out.
What you may find helpful is to ask to review your original mammos… Baring in mind that no screening is 100% effective and it does say this in the literature that comes out with your appt… But that doesnt make you feel any better when you happen to be the small percentage that it wasnt effective for.
The chances are that a 12mm tumour may not have been big enough to be seen on mammo 6 months earlier even if you had the easiest to read breasts… Mammos cannot usually detect small lesions… Many only picking up things 7mm or bigger… Occasionally they may be lucky and pick something about 4 or 5mm… But they wouldnt be able to pick up a 1mm invasive tumour… Although if it had DCIS and associated calcium that can sometime show up as flecks like grains of sugar.
Its not an exact science and the film readers inspect the mammos with very magnified views to help detect abnormalities.
If you get your films reviewed they will be able to look at the previous ones and the previous ones to that to see how well it showed on mammo… If indeed it did at all.
This is why its always important to get anything investigated even if you have had a normal mammo if you notice a change get it checked… Its a blessing you didnt just wait till the next november till your mammo was due again and had it investigated when you noticed it changing xxx
Hi Michelle,
I too was screened yearly since 2002 due to my sister and cousing being diagnosed both at 38yrs. I had final mammogram in August 2012 and then discharged from clinic. I turned 50 in Nov 2012 and was invited to attend mammogram end April 2013 as part of national screening. Results came back clear a few weeks later however my breast became very sore and thought I felt a lump. Stupidly I put this down to being injured during mammogram (how could it poss be anything else I have just had 2 mammograms in the space of 8 months and both were clear). By end Aug the lump felt bigger and I thought I should get it checked. My GP was very dismissive of my concerns and told me as my two recent mamograms did not detect anything it was highly unlikely ther was anything to be concerned about and tumours can take at least two years to develop into a lump,“”“”“”“”“” but he will follow protocol anyway and refer me to breast clinic (reluctantly). It took 7 weeks to get appointment.
I have since been diagnosed on 7th Nov with triple negative 2,5cm tumour and currentlly going through chemo prior to surgery and rads.
So my concern is for my tumour to grow 2.5cm in the space of 4-5months is must be very agressive or they have missed it completely in last 2 mammograms. Rant over lol
best wishes
Wyn,
forgot to say when I mentioned this bc consultant he said mammograms are a great tool for detecting breast cancer but they are not always 100%. I feel I have put my body through years of radiation ( at least 15 mammograms) which is not good to then find lump myself.
Wyn
Michelle-I have had a very similar experience. Had been getting mammograms through my late 30’s and 40’s due to family history. I worried about the damage this screening could produce but reassured myself that I was being ultra careful and any cancer would be picked up very early. When I was 49 I went along for my usual clinical examination and the doctor felt a lump. She looked at my mammogram results and said she was fairly certain the lump was not something to worry about as my mammogram was clear. She arranged an ultrasound anyway and I had one several weeks later. This detected what turned out to be a 20mm tumour-grade 2. Mammograms were repeated but still came back clear.
I did not find out that mammograms were not as effective in detecting cancer in premenopausal woman until this point. Noone ever told me so I never examined myself. I now have no faith in mammograms.
hi i wondered if anyone had considered thermal imaging (thermography) instead of mammogram; it picks up changes in the breast at least five years earlier than a mammogram can. they are private scans and apparently cost around 250 pounds. I’m currently considering having thermography this year instead of my annual mammogram as my bc also wasn’t picked up on mammogram. Carrie