Thankyou ladies a couple of extra q's have been added to my list. in reponse I have lump about the size of ping pong ball, i found it after losing about 2 1/2 stone (god bless weightwatchers) but it is huge compared to my new shrunken breast size. I just want to be really prepared for tom I do already have a BCN - but at present she is that stupid woman.... Wrong of me I know but once I acknowledge her it's real and at the mo I know my diagnosis, but it's not happening to me i'm telling people about a 3rd person if that makes sense... Getting there though and i'm hoping for full plan tomorrow and with that some acceptance and mostly a comprehensive understanding of what is happening and what is going to happen. I hadn't thought about more than 1 surgery so very helpful to have that in my head/on my list ready. I've worked for this trust since i was 17 - i'm now 35 so i have an understanding of NHS procedures/protocols and accessing NICE guidleines but I also realise I'm prob 2-3 steps ahead of myself as worrying about BRCA as have some reasonable family history and a friend is BRCA1 Grrr- need to go to bed and deal with tomorrow tomorrow. I hope you guys are doing well and thank you xxx Michelle xxx
I've come through my journey after being diagnosed with Low Grade DCIS last September.
If it helps I'm so glad you are writing your questions down I didn't to start & wish I had. Not sure what questions to suggest as we are all different.
I wanted to know everything & felt at start they only told me what they felt I wanted. After I met the surgeon following my first op I went with a long list of questions. Most started with "what if".
What if I need further surgery will it be another WLE or am I looking at more drastic surgery.
Is my DCIS in one area only; if more than 1 what surgery can I expect.
Hopefully your not facing a masectomy; but what reconstruction can it be an immediate?
I was very bruised; what after care is there? Once I had surgery I didn't really know what I did if I had a problem (infection), thankfully I didn't so wasn't an issue.
Ask for copies of all correspondence between hospital & your GP. My hospital did this anyway some don't unless you ask.
At each stage ask what next & when. I had to chase up my referral between Surgery & radiotherapy as no appointment when expected. I had been missed off the list so be aware to check & chase if needed.
For me I had an inconclusive biopsy & had a wire guided WLE. DCIS confirmed.
I asked what treatment after surgery; ended up with 2 ops & 3 weeks radiotherapy after initially being told only needed surgery. Until test results known sometimes they can't let you know for sure.
It is very common with DCIS to need a second op as possibly clear margins may not be achieved at first (this is what happend to me).
Do you have a "lump" as I only had an area of calcifications. If a lump you probably won't need the wire localisation first.
You have been referred back from the surgeon to screening; not sure why unless they want you to have another scan of some sort.
I'd phone your breast care nurse to see if she can shed any light on it. Once you've seen the surgeon with DCIS it normally means all steam ahead for surgery to hopefully remove the offending area & then a little more waiting whilst path lab do their stuff to check the whole area removed.
Anything else depends on path results; one step at a time; try not to get too ahead as it could be you scare/worry yourself which may not be something you need to concern yourself with.
Try not to google too much; if you do keep to well known sites like this & the Macmillan site I found very informative.
I was very well looked after by the surgical & then oncology team.
I wanted to know what likely cosmetic result would be; main thing though is too remove DCIS but no harm in asking.
Ask about recovery time especially if like me you work; best to let employer know possible recovery time needed.
Obvious stuff do you not tolerate any antibiotics or other drugs as they will need that info before your op.
Take care I know you are "at the start" but you do get there.
Lots of hugs
Hi, Michelle, I'm sorry you have had this diagnosis.
I think the first thing to ask is the grade of your DCIS, if they don't tell you first. (If a DCIS is low grade and very small, sometimes the decision might be to do nothing and call you back for checkups to make sure it isn't changing. This may be what the doctor meant--that it is something that should be treated, rather than just watched.) You will probably be given a written report of some kind, but they seem to vary a bit in the amount of detail. You can ask about anything you don't understand.
The second is what kind of surgery they recommend, what is invovled and what side effects are likely. Again, they may tell you this before you ask. There may be options about treatment--WLE (lumpectomy) or mastectomy, radiotherapy, etc. If there are options, you will want to ask about the details, benefits and drawbacks of each. You might want to ask about the possibility of working or going on sick leave, and how long.
You probably want to know about your long-term prospects. They may have some statistics about survival rates with the proposed treatment. Again, you may be offered all this information before you ask.
In many centres, a Breast Care Nurse will then have a chat with you to give you more information and a chance to ask any questions that occur to you later.
They may give you information then about what to bring with you to the hospital, after care and so forth, or you may get that nearer to the time of the operation. There should be plenty of chances to ask anything that doesn't occur to you until later. You should get a phone number so you can ask questions or bring up anything that worries you.
They may give you information leaflets produced by Breast Cancer Care (perhaps that's how you found out about this site).
Many people prefer to take someone with them as it can be difficult to take everything in, however clearly it is put.
Diagnosed last week with high grade (no number) DCIS told to come back this week to discuss it further and arrange surgery date then treatment. I'm making a list of questions but any input you ladies have would be fab! My biggest worry is he said 'we want to treat you' which i think is different to 'this is treatable' or am i just over analyzing it all. Also don't understand why this week I am going backwards from a surgeon appt to the breast care consultant.... I'm dreading there is more news that the chap last week wasn't able/qualified to discuss as he was spec reg not consultant. Grrrrr and this man tomorrow originally examined me had said 'hmmm think this is a cyst let me drain it off for you! oh no sorry I can't drain fluid you need a mammogram now' then i had US with biopsy but results of this were clear, but they repeated biopsy under mammgram to test 'the chalk' as they not happy with radio images to accept clear biopsy, and the following week got diagnosis. Sorry I'm blathering again but need my head straight for tom appt so I don't come home wishing I'd said this or asked that etc etc...
Please post the questions you asked or wished you'd asked and i'll compare them to my notes and I may get extra things I hadn't thought of!
Cheers ladies this forum has helped soooo much and I hope once my journey is established I can help others too!