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DCIS WORRIER

10 REPLIES 10
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Re: DCIS WORRIER

I have posted about the saga with my SNB on another thread - if you are interested here is the link -
http://www.breastcancercare.org.uk/community/forums/newly-diagnosed-breast-cancer/6-days-diagnosis#comment-2029029
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Re: DCIS WORRIER

Thanks Lindsaylou
Big hugs to you too 🙂
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Re: DCIS WORRIER

Hi Lindsaylou,
The trouble with DCIS is that it doesn't show very well on xrays. I was told initially that mine had been caught very early (my first mammogram) and that it was tiny.....8mm......and easily dealt with. Now, 2 ops later, I've been told that its widespread and could have been there for years. Apparently, even at the time of the op, it can't be seen with the naked eye, so its only when it gets to histology that they know whether they've got it all or not. It doesn't form lumps so you can't feel it yourself. So your MRI is just to try and as much info as possible.
My DCIS was diagnosed before Christmas, I've had 2 WLE but not got clear margins so now I've got to have Mx. I'm having immediater recon. and have chosen DIEP because its important to me not to lose muscle strength, but unfortunately that procedure isn't available in my area so I'm being referred to Nottingham, I think its about 120 miles away. I suppose different hospitals all have their own protocols, I haven't been offered an MRI at the first hospital, they were just going to do everything they needed at the time of Mx, but I don't know what the procedure will be at Nottingham. Where are you being treated?
I agree with Lavender Lassie, the waiting is a nightmare, you try to stay as positive as you can but as the time drags by its draining, between my last appt at Lancaster and my appt at Nottingham is 3 months, then its only an appt for them to make their own assessment. I feel in no mans land at the moment but the support you get on here is great. Good luck for next week, keeping everything crossed for you..
Sharron xxx
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Re: DCIS WORRIER

Thanks Liz
Had my MRI yesterday so next week before I get my results. Hope everything goes ok with your op (well as ok as can be expected). Keep us updated on your progress.
Big Hugs
Lindsayloo
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Re: DCIS WORRIER

Hi Lavender lassie
I just had my MRI yesterday so go back next week for my results, keeping everything crossed. Hope you are well and thanks for asking.
I have been away on holiday for a week so tried not to think about it. Will keep you upto datewith my results.
Thanks
Lyndsayloo
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Re: DCIS WORRIER

Hi all
As everyone else says Lyndsayloo, they just want to be sure what they are dealing with - I had an MRI so they could decide whether the DCIS was just in one duct or whether there was more of it - if it had just been the one that they had originally detected then I could have had a lumpectomy but they discovered another duct that was affected that had been undetectable by anything other than the MRI so now I have to have a mastectomy. It is not that the other one is more dangerous but because they both cover such a wide area a lumpectomy is impractical. I know it is hard not to worry but please try and look on the positive side - it is DCIS and as such it has been caught early
Thanks for your comments Nonsuch - I was beginning to wonder if anyone here had been through what I am currently - I will be having DIEP rebuild at the same time as my mx - my sentinel node biopsy is on this coming Monday - and then my mx on Tuesday the following week - scary thought - good to know others have been there and done that and got the t-shirt!
Talking of t-shirts - what sort of clothing could you wear after your op? I am worried that my jeans will be impossible to wear after my tummy tuck! Do I need to buy some loose dresses do you think?
Good luck with your MRI results Lyndsayloo
Lavenderlassie
Member

Re: DCIS WORRIER

How are you getting on, Lindsayloo? I am struggling a bit with the new website and lost list of posts but suddenly saw your name and remembered you were waiting for an MRI and further results

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Re: DCIS WORRIER

Thank you lynette & lavender for your comments, my mind was running riot with me but after reading both your comments I have settled down abit, its just a waiting game now so trying to stay positive.

Really glad both of you are on the mend.

Big hugs
Lindsayloo xx

nonsuch
Member

Re: DCIS WORRIER

Hi lindsayloo,

My dcis WAS picked up on a routine mamm last summer. When I was called to the clinic they did another mammo, and a stereotactic biopsy of one areq of the dcis with a tiny titanium marker left in, like yours.

I was then sent for an MRI and a CT scan which I gather they do to help make sure it is only DCIS. Have they told you the grade..low, intermediate or High, which they can get from the biopsy. High grade is as it sounds, more active so more risky.

Well, I had two areas of dcis and the one they tested was high grade so they recommended a mx and no further treatment necessary. If there had been just one, theycwould have done rads after a lumpectomy.

I chose to have a recon at the same time as my mx, and chose the DIEP flap type, so prior to this Op I had a sentinel lymph node biopsy (op) to check if any nodes were affected as this would change the treatment. They weren't luckily and at least the op was a practice for the main surgery.

It does feel as though you're being put through hoops, I'm afraid, and for a time you will probably be going for sveral tests and then waiting for results. At least it gets the treatment as right as possible. The meeting of specialists is usually called a MDT meeting and the idea is to make sure all the different types of doctors give their expertise to each case. It's part of the national good practice guidelines so should be part of every diagnosis. Maybe one of the experts suggested the MRI that the original doctor hadnt thought necessary. An MRI is quite expensive and in some areas women have to fight for them to improve their diagnosis.

I hope this helps in some way, its a very scary time and you're probably similar to me and suspicious about why things are being done. In my case it seems to have worked out well and been for th best so I hope it's the case for you too. The trouble with DCIs is that no one knows which cases are going to develop further and so it's better safe than sorry in treatment.

Big hugs,

Lynette

Lavenderlassie
Member

Re: DCIS WORRIER

Hallo Lindsayloo, quite a few people have had similar experiences as DCIS doesn't always show up on the mammogram, but is more likely to show on the MRI. Invasive cancer is much more likely to show on mammograms or ultra sound.
I was picked up from mammogram screening, with a small invasive cancer. A mastectomy was necessary for me for various reasons, and after operation it was found that the actual cancer was surrounded by a bigger area of DCIS which had not shown on mammography.
I had an MRI of the other side to check if there was mammography "invisible" DCIS but there wasn't. 18 months on I have completed treatment and am well.

I hope you get some replies from some others who have had similar experience
This bit of being in "The Waiting Room" is worse than when they have all the info in and can make a Treatment Plan, truly, it is.
Lavender
xx

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DCIS WORRIER

Hi All

I was referred for a mammogram. Then I had to go for an Ultrasound & more mammograms and a biopsy which was taken and a small clip put in my breast to mark the area, was then told to come back the following week for the results which I was then told I had DCIS and was pre- booked for an op on the 14th May but i had to go back today for another appointment as my mammograms wheren't there to look at and the team of consultants where meeting today to discuss my case. When i went along today expecting to get the exact date for my operation, I have now been told I need to go for a MRI scan because the mammogram isn't showing anything but my Biopsy is. This has totally thrown me and I am scared the MRI shows up something more than DCIS. If anybody else has had a similar experience I would be grateful to hear about it.