Mammos & ultrasounds - not good enough?

It seems to me from reading posts on these forums that it isn’t until surgery that the exact nature and extent of what we may have is truly determined. I’ve read that 1.5cm turned out to be an area of 6cm requiring mastectomies rather than WLEs. I find it really disconcerting than within a short space of time what is really there is so different to what showed up on the mammogram or ultrasound.

Is it because the equipment being used just isn’t good enough or is it that DCIS can be multiplying at an alarming rate?

Not only a problem with DCIS - I had one tumour show up on mammogram and ultrasound - Which when I had WLE turned out to be three tumours, and two satellite lesions, and some DCIS. I think the surgeons would be be first to say that imaging has it’s limitations, it is true that it is only when we have surgery that the exact nature and extent of the cancer can be determined.

The technology is a little blunt really so I would put it down to mammos and ultrasounds more than multiplying at an alarming rate.

There’s new detection methods being tested that use thermal imaging which look like they’ll be much more accurate (and cheaper so more available woohoo). Thermal imaging was kind of written off because it too wasn’t good enough but the latest versions are based on military thermal tech which has improved massively over the recent years. One to watch but not for us yet.

Currently in use in the US but I can see this possibly being used over here in a few years.

I am just tinkering with the idea of booking a private MRI scan on both breasts.as I have been dx with DCIS in one breast but how do I know that is all that is there? I have read posts that seem to show lobular doesn’t show up very well on mammos and ultrasounds and am starting to think that anything could be lurking and I won’t know anything about it until after surgery. If mammos aren’t that good then how can I really trust there to be nothing in my other breast?

Julie

If you jump the queue then how would you know about it? You wouldn’t.

I was told my tumours were both 5 or 6 cm and in the end they were 1 inch and 1 cm and I often wonder if my surgery was based on the US scan and not what was found when opened up. I have queried this and been told that as I had IDC that was multifocal and several lymph nodes involved and vascular invasion then there was no option. That said I know that in France surgeons are much more cautious and aim for conservation. It’s a tricky business to say the least. If I were in your position I would request MRI scans and be done with it. I regret that I didn’t do that a long time ago but the clock cannot be turned back.

Please do what gives you peace of mind.

Hi Julie

I have private health care also but when I asked my BCN she said if I went to my local private hospital it would be one of the consultants from the NHS hospital that would see me, the only difference is I would be seen and have my treatment quicker. You would recover in a private hospital but unlike the NHS one you wouldn’t have a ward full of nurses who specialise in after surgery breast care on hand if anything went wrong. I went through the NHS and I made the right decision.

I have also looked into having a private MRI/CT scan but as I was told if you have a couple of cells or even a couple of mm lump it would be very difficult to spot. If it would put your mind at rest have a scan it can’t really do any harm.

I had a mastectomy six weeks ago for a cancerous lump and during the biopsy they found an 8cm x 5cm area of DCIS which hadn’t been spotted on the mammogram or ultrasound, they rechecked the mammograms after and could still not see where it had been. I am going to have the other breast removed once I have recovered from chemo as I don’t want to worry that there is or will be DCIS that might be undetectable. It’s just not worth the risk as it could already be there.

Do what is right for you.

Take care.

Ann

xxx

Dahlia - yours is yet another example of how different the real size was compared to what they originally said and I do find it worrying. I wish the NHS could afford to just give us all MRI scans - I’m sure it could save them money rather than finding out later that there are other nasties lurking invlolving more surgery and expensive follow up treaments. It would certainly give so many people peace of mind or at the very least let them know as quickly as possible exactly what their position is.

Ann - again I’m horrified that such a large area of DCIS hasn’ been spotted on a mammogram or ultrasound. At least having rechecked you know they couldn’t have spotted it earlier so know you had the best possible treatment with the information available to them. If small lumps are difficult to spot on an MRI I suppose that does change things. I think I’ll wait for my results and make a decision then as to whether to have one or both breasts scanned privately.
It sounds like you have made the right decision for you to have your other breast removed - at least you’ll know that there isn’t anything lurking then.

Julie,

I was diagnosed Dec '07 with a grade 3, 3.5cm IDC (Invasive Ductal Carcinoma) tumour. I decided to go private with my treatment as I knew having scans and other tests would be more accessible and I would also get the results a lot quicker. I was also persuaded by the fact that I would be able to see the consultant oncologist more or less when suited me rather than having to wait weeks on the NHS.

I was diagnosed on a Friday and by the Monday I was having all the staging tests done (scans CT/MRI, blood tests, x-rays, etc) and had the results three days later - all pretty quick. I had surgery five weeks ago - mastectomy and immed recon (expander implant). I was on a private ward with my own room and I think that helped greatly in my recovery because I was allowed to rest when I wanted without being disturbed by other patients and their visitors. It was a cancer ward and all the nurses were specialists in treating patients who were going to or just had surgery - I must say the care I received was absolutely second to none.

Please can I recommend a book for you to read - it is called the Breast Cancer book by Dr Susan Love and you can purchase it on Amazon. There is a huge section in it about scanning and why MRI/Ultrasound equipment is not advanced enough at the moment to pick up tiny areas of DCIS and can only usually pick up tumours once they have become a certain size. It is very interesting and certainly opened my eyes.

I wanted to give you my story - I hope it helps in making a decision that is right for you. Best wishes Jacqui x

Jacqui - I hope your surgery has done the trick and removed all the nasties from you and that you are recovering well.

I guess the fear is the same for most of us. Just wish I could fast forward a few months though and get it in the past as quick as possible.

I’ve just read an article by Peter Harvey about after the treatment which I thought was very good and am looking forward to getting the Susan Love book.

Jools,

So glad to hear that you are feeling a bit more positive. Please don’t underestimate your feelings - they are very real to you. There will aways be people in a worse off situation than yourself, but it is happening to you at the moment and that is your main concern… We are all at varying degrees of diagnosis, treatment etc, but all equally share the same fears, emotions, highs and lows. Best wishes to you. Jacqui x

This forum is so good - although not nice to know so many are going through bad times it is good to be able to be in contact with others in the same position.

yes ultrasound is one the advance technology to detect your some disease…

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Ultrasound Repair