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Who am I to believe?

17 REPLIES 17
CzechMate
Member

Re: Who am I to believe?

Silver
Usually if a cancer isn't picked up on mammography (20% aren't) then it is not likely to be picked up in the future. A false negative will be a false negative again, I'm one of them
US isn't used as screening detection method but MRI can be so insist on that from now on, not just for now.
Of course you really do not have to go to screening at all if you don't want to as it is not obligatory; it is purely an offer.
See also thread about informed consent when screening.
CM

Silver10
Member

Re: Who am I to believe?

Hi there,

I was dx in March 2010, age 41, after having a clear mammogram. My bc showed up on the ultrasound they did to look at the tender area I was concerned about. I have just had my annual check up and was told that I would only be having a mammogram as this was the best way of checking for further problems, not reassuring I tell you for someone who has already had a bc that did not show on a mammogram!
However when I saw the breast consultant last week he offered me an ultrasound scan as well, so fingers crossed for that this Friday.

Jill

cherub
Member

Re: Who am I to believe?

I'm not sure it would have made any difference to me at the time of my diagnosis back in 2006. I had a large fibroid, this was all that showed up on the mammo and ultrasound when I was referred to the local breast clinic. Even the blood test results came back clear and the surgeon said he wasn't sure what he was dealing with. The following week the biopsy results came back clear as well. I told the surgeon I wanted it removed as I just hated the fact it was there, you could feel it but not see it and I felt it was like an alien in my body. When I had day surgery to remove it, the surgical team found a 33mm aggressive Her2+ tumour under it. It was hidden as the fibroid was 47mm and covering it.

tors
Member

Re: Who am I to believe?

Ha cm, can just imagine it! I had intended exactly the same approach, and i'm not known for being shy, but i found on the day itself i was under such stress it wasnt posdible to function properly. I pinged straight back to the horror and mind numbing shock of being dx'ed and went on autopilot, except for this one embedded point about being rescanned on my (self perceived) dodgy bit. The only caveat is that, as my friend hadnt realised that ypunger breasts werent being ultrasounded, there may be some breakdown in communication between the surgery/breast clinic hospital and the oncologists at the cancer hospital, so I'll have a nice chat with my oncologist next appt about it. Better face to face startled bunny moment for him than having time to consider after a phone message.

ChoccieMuffin
Member

Re: Who am I to believe?

Vickie, I intend kicking and screaming and throwing my toys around until they wheel me in front of the US machine. Yeah, I know breasts are supposed to be less dense after chemo and hormones but my mind won't be at rest until I'm as certain as I can be that there's not another lump lurking in there seeing as this one was mammo-opaque.

sprocket
Member

Re: Who am I to believe?

hi i also found my lump after having my first mammo 4 months earlier (im 52) and it coming back clear. as it has been said with lobular it is difficult to detect on mammo, i was told that i had been very lucky to find mine myself even as it is a very sneaky type of bc

tors
Member

Re: Who am I to believe?

Lolly, our dxs are v similar, have posted on your other thread. 37 now, dx last march, grade 3 idc stage 1, no nodes, 17mm tumour. They wouldnt do us scan at my annual check either, just mammogram. They scanned just the scar area again for mebut that was due to ascare i'd had a few weeks before and i was hyper as the surgeon had said they'd prob us it again at annual review and i'd built myself up for that. They were vreluctant to do it tho, but i think they realised i was onthe edge!

One of myreally close friends is a breast oncologist and works closely with my team, she was surprised they didnt us me too, but not worried. She certainly has my best interests at heart so that makes me feel better about it. My tumour did show up on the mammogram but i'd feel v different if ithadnt as then its ridiculous not to do an us surely?

Vickie

lolly73
Member

Re: Who am I to believe?

Lulu34, i think you are medically trained in this area, so could i ask whether you think it is worth paying £250 each year for a private u/s, or is the nhs mammo alone good enough?

linky
Member

Re: Who am I to believe?

Well I found my lump (after regular mammograms). When I was referred to the consultant, and had a mamogram they couldn't see it!!! So they did the scan when it showed. I have since had a lumpectony (followed by all lymphs removed). When I had my one year check, I said about all of this only to be told mammogram is the be all and end all. I remain unhappy and continue to argue! (ie want scand not mammos)! After all, it isn't their boobs is it, their mine!!!

Lulu34
Member

Re: Who am I to believe?

lolly ultrasound doesnt find the 10% that mammos miss.... nothing is 100%.... ultrasound doesnt pick up cals so DCIS doesnt show up on it so they could potentially miss very many early cancers.

stressy_messy
Member

Re: Who am I to believe?

Think it should be pointed out before people panic about mammograms causing cancer that "Scientists have worked out that there is less than a 1 in 25,000 risk of the radiation from a mammogram causing breast cancer".

Melxx

CzechMate
Member

Re: Who am I to believe?

Hello
Mammograms are at 80% effective - at best.
For younger women they are less likely to show abnormalities because of the denser tissue. Family cancers also "hide" from mammograms.
Very rarely even US doesn't show lumps but mostly they do show on US so I'd insisted on having US if you need to have anything at all. Besides, US and MRI have not been proven to cause BC whereas mammograms have.
I was recently lectured at my local NHS hospital about the harms of mammography - and this by a radiologist in the breast screening unit. Straight from the horse's mouth!
CM

lolly73
Member

Re: Who am I to believe?

Thanks for your replys which seem to point at the nhs consultant being right.

Has anyone heard that ultrasounds show the 10% that mammos dont?

ChoccieMuffin
Member

Re: Who am I to believe?

I was told by my surgeon that the chemo and tamoxifen change the breasts so that they become less dense, but I share your concerns. My tumour was mammo-opaque and even though we knew it was there, the mammo showed nothing so I had an MRI to check that there wasn't anything else there that the mammo had missed. Fortunately there wasn't but it was a nervewracking time.

Lulu34
Member

Re: Who am I to believe?

ultrasound as a screening tool isnt very effective its of use if something shows on mammo or MRI but it only looks at bits of the breast therefore better if they have an area of suspision.

for dense breasts you best with mammo and MRI... but mammo is still really effective even in women with dense breast it can still pick up cancers however some units will offer MRI for women who also have dense breasts, however funding is variable from health authority to health authority.... and scans like MRI are also more likely to show up benign changes which need further investigation and can cause lots of stress.... prob worthwhile talking it over with your consultant to see if this is something they offer and if you would be considered and have some idea of the pros and cons.

Lulu xx

staycalmandcar
Member

Re: Who am I to believe?

I have lobular, which notoriously doesn't show up on mammograms. I asked about follow ups after my treatment and was told that i would have MRI due its type.

x

saffronseed
Member

Re: Who am I to believe?

I too have dense breasts and my tumour did not show up on my three yearly mammogramme I am over 50.

I felt a lump myself and when diagnosed my tumour was 9cm. I was told I could have an MRI scan instead of a mammogram. I was told that a Ultra scan is not a screening tool and it is used with a mammogram when there is something to direct it too ie a mass showing up - So for dense breasts it would seem that MRI is the best tool although in itself can show up everything -and then you may have to have a Ultrascan to confirm/or not confirm what the MRI is showing. Consultants do not like MRI scans for this reason.

lolly73
Member

Who am I to believe?

Following on from a previous thread i posted on another section of this website, i am trying to find an answer to this..

I am 37 with what ive been told are very dense breasts. 3yrs ned.

It has been confirmed today by my nhs consultant that from now on i will only receive an ultrasound if mammo shows a problem or i have a lump, otherwise i dont need one, just annual mammo is good enough.

However, at a private hosp i have been told that mammos only show 90% of probs and u/s shows the other 10% so its important to have both.

Who do i believe?