hi every one just a bit nervous been diagosed with dcis high grade as two large areas on right breast i have a large lump with swollen breast with this dcis which my surgeon said is very odd to show with dcis ultra sound was clear but mamagram showed microclafications had a stereocore biopsy showed all pre cancer cells now i have been told may need further treament after had the masecectomy with immediate reconstruction with implants and muscle frm my back i am really scared it has invaded already which would mean what ? does it mean it will spread else were? im so confused and scared any body else like to share any storys wid me would me great thanksxxx
Firstly, have you read the leaflet from this site on DCIS? That will give you an explanation of exactly what it is.
Your core biopsy will give the surgeon a very good indication of what is inside but it probably wont be until after your surgery when more tests are carried out that you will be given a definitive diagnosis. DCIS is confined to the milk duct(s) and as long as that is still the case after you have your post-surgery results then it cannot have spread to elsewhere.
As your DCIS is high grade and covers a large area you will probably undergo radiotherapy afterwards (once your wound has healed) to mop up any stray cancer cells and reduce the risk of recurrence.
Don’t think too far ahead and start thinking of invasive cancer but just deal with what you know you have now otherwise you might scare yourself for no good reason. What you will be going through is enough for you to contend with right now.
Take care.
Hi Faith
beta.breastcancercare.org.uk/server.php?show=nav.373
will take you to the information Suzanne mentions.
Best wishes
Ann
Im a frightened young mum too 28 (if you can still call that young!) My little girl is 2… I was diagnosed on Friday and its been the longest weekend of my life!! I couldnt have got through this without reading the stories on here… Its comforting to know your not alone and there is lots of support out there for us. I hope everything goes well for you and you stop your not frightened anymore… Good luck
Julia x
So sorry to hear your news Faith and Julia. I went through it all exactly this time last year with a two year old and a 6 year old. It is very hard and frightening when you have young children and the waiting is the worst. I really feel for you both.
However, just want to tell you that once you have your mastectomy - so long as they don’t find anything else when they take the breast off, then that is it. Pre-menopausal women aren’t offered tamoxifen for straightforward DCIS and radiotherapy is usually only given, so far as I know, if you have a lumpectomy - which of course isn’t as radical as a mastectomy. The mastectomy IS the treatment for DCIS and that’s it. So far as the mastectomy, though brutal and hard to lose a breast, it is in fact not too difficult a thing to go through really. The operation lasts about an hour or two and (though I was personally a bit sick) the woman opposite me in my ward was up and about the same day, eating, watching telly etc. You’ll be out of hospital within a few days - as soon as the drains (the things - totally painless - they put in your side to collect the liquid from your wound) are out. Recovery is immensely quick and you will get back to normal very quickly.
Now for the bit I know you are both worried about and I know I was - particularly when you have very young children. Waiting for the results. With high grade widespread DCIS there is a very small chance (1% I think) that there has been some small spread and even if that were to happen, it is still very early cancer and very treatable.When they take the breast off, they will really have a good look through it to see if there is anything else but DCIS there. Also, they may take lymph nodes out (they did with me as it was high grade and widespread) to see if there has been any spread, usually in the form of very early ‘microinvasions’.
However, with DCIS only 1/3rd to nearer a 1/2 (depending on what stats you believe) ever go on into ‘real’ cancer. So major chances are that you will have no spread. If I tell you that I was misdiagnosed and had bleeding from the nipple for 3 years before the correct diagnosis and STILL there was no spread outside the ducts -ie, it remained pure DCIS - this shows how slow growing it is.
So, sending lots of hugs to you both at this time. You can’t stop worrying - that is impossible. It is a horrible thing to be told - and for you both so young. However, DCIS is not seen as actual cancer and once the breast is off, it is the most likely outcome by a long shot that that is it.
Hope this reassures you a little.
Love
L xxx
Thanx Flax… Wow, you’ve been through alot!!! Cant believe they didnt catch it sooner… Idiots!!! Not sure what type mine is yet but i’ll be sure to make a note and remember to ask my doc on Thursday… All these questions!! He’ll be sick of me by the time i leave! hahah x Take care x
Good luck Julia for Thursday and tell us how you get on.
L x
hi every body thanks for all the kinds reasurrance im sorry i have not been on here lately but just couldnt face any think b4t the op any way im on week 1 post op and doing ok cant belive how relived i was to wake up in recovery had my result on friday and am pleased to say that its just dcis i am so made up yet still in emotional and phyiscal shock and yet feel so guilty that not every body is a lucky as me if you call it lucky well i do i had and snb which was all clear they are testing it for estogen now to see if i need any medication but to me surly that ismior to what could of been i hope al ges well for you julia and im sending lots of postie hugs and thoughts your way im sure thta helps you through your jouney its a tough road but we all will cme out on top im sure xxxx
Faith11 have posted a message on the ‘prophylactic’ thread - but so glad you got the results you hoped for. It is a huge relief but you still have a right to grieve for what you have lost!! And the strain and shock of it all. I mean, honestly, people get sympathy for flu!!!
I was oestrogen postive but was told that tamoxifen wasn’t given to people with straight DCIS pre-menopausally - unless you really want it. I would be interested to know if you are going to be given it.
But glad again for your results and well done for getting through surgery!
Love
L x
I was diagnosed last year with high grade DCIS. I did not have a mastectomy but obviously had surgery, removal of nipple and areola. My surgeon reduced my breasts to match in size and I am pleased with the result. Due to my age (39 at diagnosis), I had 25 sessions of radiotherapy. I now have follow up every 6 months and will have a mammogram every year for the next 10 years when I will go onto the national screening programme.
It is important to discuss your case with your consultant as we are all individuals with a different prognosis. An example of this is that I have been told something different to Flaxhigh that relates to me and therefore, it is important to find out what is specific to you.
I wish you well with your recovery.
Kat x