I had high grade DCIS dx in 2007 and I had a mastectomy/DIEP flap reconstruction. All went really well and I had clear margins and no other treatment required.
Yearly mammograms of the remaining breast have been fine since then. But I’ve just been recalled for an ultrasound and of course I’m worried, though trying hard not to get over-anxious. Has anyone else been here before recently? What did it turn out to be, if anything?
Reading the posts I’m extra worried because it looks as if mammograms are possibly a bit of a blunt instrument in showing up recurrences. Should I be asking to have other sorts of tests (or considering paying for them?).
Hi
I’m sorry to say you are only likely to get replies from people like me, who have had recurrence in the other breast, because those who had a negative result will probably not be on the forums any more, even if in the majority of cases things will be negative. Stats must show that if 10% of women get bc then 10% of those will get it again. But a recurrence is not so bad., I am still planning to be cured again.
See my profile. Ultra sound will give them a better idea and they’ll do a biopsy if necessary, then you will have to play the waiting game. Horrid.
All the very best to you,
Hugs
Maria
Hi Maria
Thanks so much for posting. It makes you feel much less alone, even though you know you aren’t really alone because so many women are going through this stuff. And you’re absolutely right of course; the ones who have had this happen but were OK, won’t be on the forum.
When I was dx back in 2007 no-one talked about an invasive form of DCIS. They seemed to regard it as non-invasive by definition, although with a 30% chance of becoming so if not dealt with. Now I realise that while it’s not exactly misleading to say this, it’s not quite as simple as that either. Whatever happens I’ll be asking for a bit more information this time around.
All the very best with your second bout with bc. And I hope your niece can be reassured by a realistic calculation of her risk.
hugs
Hi
I was recalled after an annual mammogram (about 5 years after treatment, the other breast). They said ‘its probably nothing’, but we want to take another one and do an ultrasound to be sure. This really scared me because I remembered they said something like this when I was first diagnosed, so I had a sick feeling of ‘here we go again’… but it was nothing! Just some strange distortion in the tissue. I have had two more since and no trouble.
I wish you the best with your results
Sarah
hi marleybone
like maria i have had a recurrence.
i remember very clearly writing a post very like yours a year ago. i had invasive BC and high grade DCIS 3 years prior to that.
they actually recalled me because it looked benign on mammo, but as it was suspicious i was called back… the repeat mammos looked more suspicious of maligancy and the ultrasound confirmed it was a new primary cancer.
at the time i was in a complete state of shock to go from ‘its probably benign’ to ‘its most definitely malignant’ in the space of an hour.
but now its a year down the line iv had the surgery, the chemo and the rads and i guess iv kinda faced all my demons in that time and BC doesnt scare me any more.
although teh screening is looking for cancer they will recall you if it looks benign as well as malignant and the further tests and biopsies tehy do will hopefully be able to give them a better picture.
eg i found another lump before xmas and they did a mammo of that… this time it looked suspicious of malignancy and had ultrasound and biopsy and was told to prepare for the worst… but this time was benign.
so at this stage you are really going for further assessment… the majority of people who attend for assessment are found to have benign changes but in a few cases unfortunately the changes are malignant.
btw DCIS is non-invasive its in-situ which means its contained and removing it will mean there is no risk of recurrence or metastases from it… however that doesnt stop you getting another episode or a new cancer in the future.
best wishes
Lulu xx
Dear Lulu, Sara and Maria
Well I had another mammogram and an ultrasound yesterday and I hugley happy to report that it’s all OK.
I thought I would make sure I reported back to the forum. Not only to thank you all for responding when I was so worried, but also because I’m mindful that it’s probably a good thing to write about reassuring, happy outcomes as well as sad ones.
The recall was made by a very cautious head of radiography (bless that man) who thought it just might be worth looking more carefully at a dot I could hardly detect even when it was pointed out to me.
He went into great detail about it and even after the first repeat mammogram he said he was pretty sure it was absolutely nothing to do with DCIS or an active cancer either. But he would do the ultrasound as well to triple check and to give me peace of mind, given the history.
After all was finished he said he was very satisfied (and happy to tell me)that it was nothing at all. Huge relief all round - I nearly rushed out ecstatically without remembering to dress!
I’m not so daft as to think this is a guarantee for the foreseeable future - no-one can give me that. But I do feel I am back in the realms of the normal statistical likelihood of BC.
bless you all
Jane (aka Marylebone)
Hi Jane
Thanks for letting us know - it was almost exactly the same for me - the radiographer pinned up all the images to show me what had concerned him. I honestly couldn’t see what he was talking about, but was too happy to care!
I think we should post these ‘non-event’ occasions as well. We get so spooked by BC that when they say things like ‘we just want to do another one to be sure’ we don’t believe a word of it! But I think most of the time it is just that - they are being careful.
All the best
Sarah
Wonderful news, Jane
Thanks for sharing your good result
Hugs
Maria
hi jane really pleased to read your news.
Lxx