DCIS

[Mags06]

Hi pinky3

I seen my consultant last week, unfortunately because I have had 2 excisions I am unable to go on the loris trial, we discussed a third op which involves making the breast smaller a lateral mammoplasty, to be done in two weeks , if no clear margin I think it will be a mascetomy, but thank you anyway

[jillybee]

Oh,Sueb,understand completely.I had 13 years between DCIS right side,and again on right side.It was like being in the bottom of a swimming pool,or in cotton wool..people's mouths would move,but couldn't hear!

Then telling people,then the tears.....

when you look back,it is like "did it happen to me"?

the first time I went completely cold,with shock.Next time I almost laughed,as told my husband. Will have a  glass of culled wine ,whatever the outcome.I had several glasses.

you are n this bubble.....take care.💓

[pinky3]

Hello Mags06

I dint know if this is of any help but I would recommend you do some research with regard to the LORIS trial.

I think there is some info on the Macmillan website. It is a new trial for patients with low risk DCIS. Patients are split to follow either the surgery route or careful observation and monitoring. There is a debate on going about patients going through mastectomy or WLE plus radiotherapy for low grade DCIS  as for many women this is considered over treatment.

Maybe you could discuss the trial with your consultant especially if you are concerned about losing your breast for something that may well never become invasive.

Best wishes.

[Mags06]

Hi I felt the same I had low grade non invasive Dcis , 2 ops to remove tissue but no clear margins, thought I was going to then have radiotherapy , but surgeon said no, I was then told a mascetomy , which left me numb and shocked I thought mine was nothing much to worry about and now suddenly I need the whole breast off. I am still trying to get my head around it, I haven't booked op date as they mentioned reconstruction, which I know isn't for me. I can empathise with you, although this is the first time anything has shown up, stay strong and take your time to adjust x

[Janet1954]

I was diagnosed back in January...I went into the consulting room and came out a different person.  I thought why me! And went into a bubble ,thankfully my husband was with me and he became my ears. he came home from The hospital went straight on the computer to understand more of what we had been told.  It was a question of mastectomy or not due to DCIS. I chose ma sector followed by immediate reconstruction...this was my choice and thankfully my margins were clear which meant no Radio or Chemotherapy.  We are now 8 months on reconstruction felt alien at the beginning but like everything else the body needs time to get use to being traumatised, Syemtary was carried out on my other breast and at the age of 61 feel like new.  Reconstruction is not everyone's choice but it was mine. virtual hugs to you for your coming journey.

[Kiki2]

Hi Sue, sorry to hear of your diagnosis. Exactly the same happened to me, routine mammogram recall, DCIS, 2 biopsies and mx . I found at the time the whole thing did feel quite surreal, maybe it's our way of coping, perhaps we detach ourselves until we have had chance for the shock to subside! If you have been through it before you will know what to expect but it sounds as if like mine, they have caught it early. Are you having reconstruction? Do you have a date for your surgery? Nicola xx

[Sueb]

I had a routine mammogram on 3 rd of August a week later I revived a call back on the 24 August I was diagnosed with low grade DCIS and needed gutter biopsies . I got the results yesterday they have found more cancer and I have to have a mastectomy.
This is the second time I have had breast cancer. I had it 15 years ago age 40 . I really don't know how I feel I don't seem to have any emotions I just feel empty when the doctors were talking to me yesterday they might as well have been speaking a foreign language it just seemed to wash over me. I really don't know how to explain it it's almost like looking through ba window watching it happening to someone else. Is this a normal reaction?