I was diagnosed on 16 November following a recall from a routine mammogram. I had two small (6mm and 7mm) invasive ductal carcinomas in my right breast and, because of the distance between them, was advised to have a mastectomy. I had an MRI scan of both breasts to check the exact position and size of the tumours. I had a sentinel node biopsy in mid December, which was clear. I had a mastectomy on 6 January and DIEP reconstruction, which went well.
I saw my breast surgeon yesterday, who had all the results from the pathology carried out on the breast tissue which had been removed during the mastectomy. He confirmed that the tumours were oestrogen positive and HER2 negative. The tests had shown that there were changes in the area between the two original tumours, which I wasn’t surprised by, but I was shocked to be told that a third tumour had been found when the breast tissue had been examined. The third tumour was an invasive lobular carcinoma, only 5mm, but grade 2, and was behind my nipple. I was a bit too taken aback to think of questions until I’d left the hospital, but am now worried that, if the third tumour was not picked up during the mammograms, ultrasound, or MRI scans, how reliable were the tests, and, more importantly, I’m now worried that something might have been missed in my other breast. Has anyone had a similar experience?
I had a lumpectomy in october after finding a lump in my right breast. I had an ultrasound and mammo which only showed one tumour. When i went to see the surgeon post surgery he informed me the pathology showed a second cancer in the breast, pathologically different from the initial one. They rechecked my mammo and said nothing else was apparent. Very worrying. Anyway they started me on chemo and have recommended an Mx when chemo is complete to which i have agreed. I was also ER + and HER -
I have the very same concern about my left breast and wonder if there could possibly be an early cancer in it
i examine it religously fr lumps and changes. Its a worrying thought but i fully intend to raise it with my surgeon before my mx.
My tumours were grade and stage 2. I cannot have a reconstruction until 12 months post Mx.
Hi,
You have moved me to make my first posting! Same with me, I had lumpectomy, then MRI because my surgeon was trying to prove that I did not need a mastectomy - I wanted to avoid rads but that’s a different story - the MRI showed several more suspicious areas. I had them biopsied and all were clear. My gut feeling was to stick with a mastectomy which I did, after a bit of a fight. The pathology came back with another small tumour not detected by any scans!
Like you I am uneasy about my other breast and keep wondering about another mastectomy.
I think even MRI scans have false negatives as well as false positives. I asked my surgeon and he just shrugged his shoulders.
This is all such a game!
What to think about is you will now be getting monitored more closely than before… Mammos can usuallynonly pick up from around 7mm in size and MRI from about 3mm in size so many people who have scans will have tiny tumours too small to be seen… It can take many years from a single abnormal cell developing into a cancerous lump even a tiny lump… I have seen in some instances where a cancer was diagnosed and when the makos were looked back it was there for 12 or 15 years but didn’t appear significant at the time… Most of the growing of cancer cells are it going on when it would be invisible to the naked eye.
Bilateral cancer isn’t common… Only around 5% of cancers are bilateral unless you have a genetic mutation where it’s around 50-60%. although lobular cancers tend to be more likely to be multifocal or bilateral than ductal at about 25%. Based on this some people do request a double mastectomy, but you can discuss it in more detail with your surgeon… Often they want to treat the cancer they know is there in the first instance and deal with the ‘what ifs’ and ‘maybes’ at a later stage… I know it doesn’t stop the worrying though… Speak to the helpline nurses here or give your BCN a call and write a let of questions so you can quiz your doc at your next appt.
I have had three tumours over a six year period and with no evidence in between but after finding the first lump myself the two subsequent cancers were picked up by screening, one on mammo and one on MRI… I know thus isn’t the case for everybody and mine weren’t lobular but just thought it might help… Also if you notice any changes yourself always get it checked out too.
I have had 2 primary cancers in the same breast. The first one I found myself but it didn’t show up on a mammogram and the second one was detected by mammogram but I can’t feel it! How strange.
I have been wondering about MRI scans for after my MX next month both on the other breast and the reconstructed breast. Do the NHS offer these as a precaution (doubtful) or do you have to pay privately? How often should you have them done?
Lobular cancer is a sneaky little bar steward. I had clear mammograms and it was only through self examination that included looking in a mirror with my arms above my head that I found I had a problem. By which time it was stage and grade 3. Only showed on ultrasound! I will be insisting on ultrasound rather than mammograms on my next checkup.
I asked if I could have ultrasounds at follow ups last time but was told that they are only beneficial if a lump could actually be felt so that they know where they are looking, otherwise its like looking for a needle in a haystack – their words not mine. Frustrating isn’t it!
this thread has certainly made me think… i found my lump, had the usual tests including MRI scan, at this point i was told the suspicious area was too large for lumpectomy and had to have mx, at my follow up appointment, i was told there were 2 lumps. Lulu did kind of reassure me in her post, as one of the lumps was i think very small.
would a scan pick up suspicious areas, because i’m sure when i had my scan the man (not sure of job title of this role) who did it, said my arm pit looked suspicious, and it turned out my lymph nodes were affected.
God, this is all such a mine field. I just think that this will come back at some time in the future, and its a scary thought
Hi Lulu34,
Thanks for those figures, I have googled endlessly and not found anything on the sizes picked up by scans. Do you have a source for information like this or has it come from your experience?
The 25% for lobular is a bit scary as that is what I have - perhaps I should get a private MRI annually if I can?
I would also appreciate knowing where to get good recurrence statistics from. I am having trouble taking Letrozole and want to calculate my particular risk if I do not continue with it. My surgeon gave me a risk factor of 3% - I assume that is with Letrozole, so if I add on another 20%, that is still really low. I guess that is for the mastectomy side though and the good side might be higher. I know I am grasping at straws a bit here but I felt so ill on the pills I don’t think I would be able to work. I have chronic spinal pain to start with and difficulty walking. It is difficult to take something that makes you feel even worse everyday and calling in sick is getting really difficult at work.
Thanks so much for your help,much appreciated,
Kathy
My ILC dx was also confirmed by US, the second tumour had not shown on the mammogram either although it was 3cm, the symptoms which prompted me seeing my GP was a hardening under the skin. My first annual check up last year was a mammogram in the remaining breast and physical check in the reconstruction and MRI. All was clear. I just had my second annual mammo & MRI going for results on Wednesday. I wasn’t offered a prophylactic mx at my unit, I know other units do for lobular.
Thank you for all the helpful responses. It seems that I’m not the only one where an MRI scan hasn’t picked up a problem. I’ve got a list of questions to ask the oncologist on Wednesday, but am still very shocked that my third tumour hadn’t been detected - I really thought that an MRI scan showed up anything unusual, particularly a 5mm tumour. If I’d known that I had an invasive lobular carcinoma, I would have at least discussed the possibility of having a bilateral mastectomy and reconstruction before I had my DIEP!
Echium the figures are what our radiologists and Mammo readers can see… They use magnified veiwing glasses to look at the films closely and the digital mammos can be zoomed in so they do look closely as much as is possible… But nothing is 100% effective in screening and most people still find the dancer themselves because of a lump or breast changes so breast awareness is the key! Get to know what the new normal is for you so you can get any changes investigated… And don’t be worried about feeling you are being a hypochondriac your not!
Grey cat often things may be picked up better on MRI but can appear normal or not appear abnormal… On my MRI in 2010 I had an indeterminate leision which was a cyst and on MRI in 2011 I had n indeterminate leision which was a cancer… Indeterminate leisions on MRI are more likely to be benign than indeterminate leisions on Mammo.