DCIS

Hello everyone,
I have just been told that I have DCIS and I am scared. And I don’t know what to do, what to ask, where to go.

Hi Duel,

Welcome to the Breast Cancer Care Discussion Forums. It sounds like you’re having a really difficult time at the moment. While you’re waiting for replies from other forum users I thought it might be helpful to post a link to BCC’s booklet on DCIS just in case you hadn’t seen it:

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-bcc39

Please do also remember that the Breast Cancer Care Helpline offers information, emotional support and also details of other BCC services, tel. 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.

With best wishes,
Anna, BCC Facilitator

Thank you AnnaB BCC,

I have the booklet. I’m just apprehensive of what the surgery is going to be - what I have to decide. What questions I have to ask. And my daughter is sitting beside me whilst I am writing this.

Hiya duel

Sorry to hear you have been diagnosed with DCIS.

Normally the surgery will depend on how big the area they need to remove… Some people have lots of DCIS scattered throughout the breast which would normally require a mastectomy but if it’s just in one area then normally you would a have lumpectomy followed by around 4 weeks of radiotherapy… If it’s a mastectomy you can have a reconstruction at the same time.

Very occasionally when they remove the dcis they find a small area of invasive BC which would require them to do some surgery on the glands under your arm called a sentinel node biopsy… It’s not usually done where they are fairly sure it’s only dcis, but some unit may well do it as standard at the time of surgery.

DCIS is cancer cells that are confined to the duct of the breast and tended re cannot spread anywhere else in the body so you do not normally need to be treated with any other drug treatment like hormones or chemotherapy.

You should see a surgeon and breast care nurse who will tell you what to expect and what kind of surgery you should be offered and go into it all in a lot more detail.

Hope that helps a wee bit

Lulu xxxx

Thank you Lulu.
That helps a lot. I know that I am not going through what a lot of other people on this forum are going through and I feel like a bit of a wimp. Just that the diagnosis was so, so unexpected.
Duel

Please can anyone tell me what Mx and Dx mean? I’m reading through the posts on DCIS but I have no clue …help please. I’m due to see my…what?..consultant? Surgeon? on the 12 December and I really think I need to know the terminology and my options.
Thank you in advance for any help you can give me.
:slight_smile:
Duel

Hi Duel

So sorry you’ve had to join us. The waiting - first for results and then to find out what’s next - is always the worst bit.

This thread might help…

share.breastcancercare.org.uk/forum/abbreviations-and-acronyms-used-on-the–forum-t24993.html

Take a look at the Glossary section too - it’s in the list on the LHS.

Dx = diagnosis
Mx = mastectomy

Take care

DJ x

Thank you, DJ007. That is so helpful…:slight_smile:

hi duel-my dcis was picked up by mammagram in may-massive shock-these forums are great-really helped me through this scary time-i had a lumpectomy and 3 weeks of radiotherapy-i took some time off work(i’m 57-work fu;ll time)-it was all much better than i expected-you can’t see my scar-and all i’m left with is a tiredness that overwhelms every now and then but that’s improving all the time.it’s the mental anguish that drags you down-get on here as often as you need to-someone will always come on th help-thanx folks x

Hello Duel

I’m sorry to hear you’re going thru’ a difficult time at the moment.

I was diagnosed with DCIS at the beginning of October. If they haven’t told you you should ask how extensive it is in the breast. They talk about ‘quadrants’ which means if they were to draw lines, they would divide your breast into four quarters. In my case, I had DCIS in two opposite quadrants and therefore the only practical option for me was a mastectomy (but I had an immediate reconstruction). After doing a number of biopsies, they also found that the DCIS had developed into a few invasive cells too.

I don’t think you said how they had found the DCIS. In my case, it wasn’t picked up by mammogram. In the end I had two scans, two biopsies (two samples taken each time) and an MRI but at least I felt that everything had been done to ensure they had the correct diagnosis.

I also found it really helpful to talk to the staff on the helpline on this website (0808 800 6000). For me they acted as a second opinion because I would ask them before I saw my surgeon/team what I should ask and then afterwards I would call them again to discuss with them what I’d been told. When they confirmed that what I’d been told was accurate, it gave me alot more confidence in the team who were looking after me.

You’re going thru’ the hardest time at the moment. Not knowing is torture. But ask loads of questions (as them for a copy of your pathologist’s report too), speak to the professionals here, share your concerns with the other ladies on this site and then you’ll be in a much better position to make decisions that will be best for you.

Look after yourself. You’re going to be alright.

Love

White Daisy
x

Hi there,
I can imagine how you feel and I’ll gladly do anything I can to help you through this period. I was in your position In September, totally out of the blue. No lumps, no symptoms, why my, why my nice boobs???

I was totally knocked out when I was recalled after a mamm in August. I didnt expect to have a core biopsy at the recall, and from that point I was so scared and shocked. The radiologist showed me the slides and before the results appointment I read all I could about DCIS. at lest when the surgeon told me it was widespread DCIS I knew about it. It was the most awful moment of my life though, and it’s really understandable to be angry, scared hurt etc…i certainly was, and let it all out at/to/with my (grownup) daughters over a really bad weekend while I started to come to terms with things. For me, it was important to understand the options before I heard the results, I don’t like things sprung on me. other people prefer to go with the flow, it’s whats good for you that matters.

What I have discovered is how personal this disese is, so there have been constant uncertainties, a lot of different possibilities. This is really normal and not suspicious…in fact some areas don’t do all the tests and ladies on here have had to press for some of the tests. At the end of the day, It’s good to know that they do lots of tests to make sure they get a proper diagnosis. At it’s simplest, DCIS can be removed and that’s all that needs to happen, but there are many possibilities to be explored along the way and I found this a really hard time…everyone says the waiting room is hard!! Spool yourself whenever you can!!

I was lucky that my dcis hadn’t spread although it was very active. I ws unlucky in that it was 4 tiny pieces but spread around so I needed a mastectomy. but that has meant I don’t need radiotherapy or chemo or anything.

Now i am the worlds most squeamish, scaredy cat person, never had any surgery or anything. It has ALL been a challenge for me, but if I can do it, take my word for it, you can too!!! So here I am now, sitting on the sofa in regular clothes, tights, ankle boots etc, 11 days after a mastectomy with immediate recnstruction including a tummy tuck! ( known as a DIEP flap). There are many different kinds of recons and you should be offered all that are clinically suitable for your body. I opted for the biggest surgery, and for once a bit of extra tummy fat came in useful. Do PM me ( send a message using the message button at the top) . if I can answer any specific questions you or your daughter have?? This is a horrid place to be, but so many people here have got through it all and out the other side. Lots of hugs, Lynette

White Daisy,
My DCIS was found through a mammogram - only four weeks ago!.. In that time I have been called to the screening clinic, had a core biopsy (ouch!), been told my results and now have an appointment with the consultant for next Monday. I took your advice and 'phoned the number you gave in your post - an absolutely wonderful lady talked me all through it and suggested questions I should ask. She is also sending more booklets in the post tonight, so thank you so much for your very helpful advice. XX

Nonsuch,
Like you, mine came totally out of the blue - one week a mammogram, the next week the screening clinic, the following week the damned biopsy and the following week my results. Then, the week after that the appointment with the surgeon. My head is absolutely spinning. I also have grownup daughters and one has been an absolute brick. The only time I have had a tear or two has been with her, and she is coming with me next Monday when I see the surgeon.
Judging from what I could see on the really ‘blown-up’ picture of my breast, there appeared to be a cluster - and I use that term advisedly - of about 10-12 instances of calcification. I couldn’t tell how far they extended.
I will just have to await the meeting with the surgeon on Monday.

Thank you both so, so much for your messages. You cannot even begin to realise how much I appreciate it. You have made me feel better!
:slight_smile: :slight_smile: :slight_smile:

Duel

Hi Duel

I was dx with DCIS last Sept 2010 5mm in size very small the surgeon told me.I knew right from the very start what my decision was going to be i was not going to take any chances with getting clear margins I opted for a mx from the very start. This is not the option most people will take or will be advised to take, but I can onestly say it was the right decision for me. I have had no further treatment or any drugs. It is very difficult to decide what to do my only advise is the ask as many questions that you need and if you don’t understand don’t be frightened to keep asking until you are happy. If like me you will have caring family who will only want the best for you. I am a very sporty person play squash go to the gym and do a lot of walking I was up and about in no time. Sorry forgot to say I am 51 with 2 kids 24 and 17 and a very supportive husband. Good luck for the next few weeks and keep positive.

Suziex

Just another thought Duel,

I was a total wimp about procedures…injections, anything. Unfortunately there isn’t anyway round them. You’ll probably be sent for lots of tests which are just to make sure it is still DCIS and hasn’t mutated and travelled anywhere else. it’s normal to be worried about this too…omg, I was. Mostly they aren’t as bad as you expect, I’m just mentioning this because the mention of the tests was a big shock to me, I thought they meant something. In fact they are routine.

As the first surgeon said, they take you right down to the bottom when they send you for the test, then you are waiting for results, then you get built back up…and at least it’s giving us an MOT !

I asked very early on if I could have any help with my fears about procedures and was lucky to get to see a psychologist. I hadnt slept for two weeks by that time. She has given me lots of practical tips, but also a relaxation cd which got me to sleep in 4minutes. So do try to get this sort of support if you can, it makes your and their life easier! The first time they approached me with a cannula, before I saw her, I was in a real flap internally, but my psych has helped me cope all the way. I offered to be flexible in where I saw her, and that helped me get a quick apptmt.

Do keep me posted and in the meantime, let your kids treat you as a princess!

Lots of love,

Lynette

Hi everyone,

this is my first time using one of these forums. The nurse at the hospital recommended looking at this web site for info. My GP sent me for a mamogram even though i had no symtoms at this appointment they did a scan and biopsy ( was so shocked i fainted and had no one with me) I have been diagnosed with DCIS only last week, and mastectomy has been suggested but need MRI and more scans nest week. The also mentioned calcifications and something that was 5cm or mm i cant remeb er anything once they said mastectomy. I am really finding it hard to come to terms with the whole thing, am only 43 with 2 children who are 5 and 7. I dont feel i know enough about all this its all so new.

Any advice would be welcome as i am having the surgery in early january and would feel better if i was more informed.

thanks

Hi Lego and welcome to the BCC forums

In addition to the valuable support your fellow users will be along with shortly I am posting a link to the DCIS publication from BCC which you may find useful:

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-bcc39

Our helpliners are here to offer you further support and information on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat

Take care
Lucy

Hello Lego,

As you will see from my first post, although I received this diagnosis a short time ago I have yet to see the consultant/surgeon (appointment Monday next)so you are way ahead of me. The ladies on this forum have really helped me and have made me feel loads better about this - and especially the lady on the helpline mentioned at 0808 800 6000.

I hope that all goes well for you - possibly I will be having to face surgery at about the same time as you.

Good luck
Duel

Hello again everyone,

Well, I’ve finally seen the consultant. He told me I have a high grade DCIS of about 6cm (yes, I was pretty shocked by that too!) and my best option was to have an Mx. What he said next really made me much more positive about the whole thing. He told me that a lumpectomy (I think) would leave me with a misshapen breast that would not match up with the other one BUT…they now do an Mx which leaves the entire skin of the breast, including the nipple and aureole, intact which would then be filled with…I don’t really know what. I am just so relieved. I know that sounds pretty stupid, but the thought of being disfigured was really freaking me out. So, I am now being referred to a specialist breast surgeon at another hospital and will now have to wait for an appointment for the surgery. I will only have to have radiotherapy if they find that some cells have invaded the chest wall, and the chances of my developing a similar situation in the other breast are only 1%, and they will be monitoring me carefully from now on. So…onwards and upwards!!
I hope that this will help some of you to come to terms with our shared disease.

Take care, everyone.
Duel
XXX

p.s. The Macmillan nurse at the hospital was brilliant!

Hi duel,
So glad that the consultant was able to reassure you. Like you I was freaked by the idea of having a breast"off", for DCIs, but having the top off and having it refilled didn’t seem nearly so bad…Like you I was referred to a PS at a big teaching hospital for the op.

So here I am, two and half weeks after my op…they say it’s all gone very well and Ill have a good match. My original surgeon did the mx through the nipple/aerola area, and it’s been filled with fat from my tum by a plastic surgeon… I was advised that it was best for me to have the nipple removed as the ducts lead to the nipple, so have a slight risk of cancer there, so I’d need rads on the nipple if I kept it. The area has been patched with a very small circular piece of skin from my tum and Ill have a Nipple made later. I’m so pleased to have no major scar on my breast or chest!!!

Wish you all the best, so glad you’ve got a way forward that’s so positive!

Hugs all round,
Nonsuch xx

Duel that’s great news I’m glad you are feeling more positive.

Nonsuch it good to hear your experiences and I’m sure duel will find that extremely reassuring.

Hugs Lulu xxx