What questions do I ask?

I was diagnosed with DCIS on Friday. I had a definate diagnosis in a lump & a possible diagnosis in another area of tissue: I had a core biopsy (my 3rd) yesterday & the Dr took 5 samples to get a good & definate result. If I only have the DCIS cells in the lump, I’ll have a lumpectomy, but it there’s more I’ll have a mastectomy.
I think I’ll go for immediate reconstruction: I had an accident 17 months ago & now have a mobility disability, so feel pretty low about myself anyway, before all this. I’ve had 2 operations: 1 of them 3 1/2 hours so quite major, in the last 17 months. I’m worried a reconstruction from the shoulder could affect me when walking on crutches, which I will be back to if I have to lie in bed for a couple of days, but I don’t want to delay a reconstruction & have to have even more surgery.
I’ve been reading up on it all and I’ve read about biopsies being tested for hormone receptors, is this relevant to DCIS?
My grade of cells so far is 2 or intermediate and I get my results from yesterday’s biopsy on Friday, with a chance to speak to the consultant to ask questions. I don’t know what to ask, I’m still in shock really.

Hi Loubee,

Welcome to the BCC discussion forums, you’ve come to the right place for support from your fellow forum users who I am sure will be along shortly to offer that support. In the meantime, could I suggest you give our helpline team here a ring and have a chat, they’ll be able to explain things to you. Calls are free, 0808 800 6000 lines are open now until 5pm (Mon-Fri 9-5 and Sat 10-2)

Hope this helps, take care,

Jo, Facilitator

Hi Loubee
Really sorry you have been having such a horrible time, but I’m sure there are people here who’ll help you through it. I had intermediate DCIS and I was told DCIS isn’t hormone receptive. However, because of where my DCIS was I had a mastectomy and they found some invasive cells when they did the pathology. So I think I’d really want to know a lumpectomy was going to sort it for you once and for all as it sounds like you don’t need more surgery than you can help. If you decide on a mastectomy there are different sorts of reconstruction you can have, but give yourself time to decide which is best for you. You should have a Breast Care Nurse assigned to you who will be able to go through everything with you in more detail if you and the consultant have decided a mastectomy is right for you. I’ve got a tissue expander which means I have to have a permanent implant put in later, but there are ladies here who have had other sorts which I’m not familiar with. I’ve bumped this to the top in the hopes you’ll get some more replies, but if you don’t you could try posting on the “Reconstructive surgery” thread as there will be people reading that who’ve had reconstruction but not DCIS, if you get my drift.
Hope someone else comes along soon.


Hi Loubee

Sorry you are having such a rough time of it! I was diagnosed with high grade DCIS in March this year and after the MRI showed a further suspicious area in the same breast the recommendation went from lumpectomy (WLE) with radiotherapy (RT) to follow to mastectomy (mx) with probable immediate reconstruction depending on the results of the Sentinel Node Biopsy (SNB). Have you had an SNB yet (this would indicate whether there is further spread through the lymph system) or have they not suggested it? It might be that if you need to use crutches they are investigating using other means as it would limit your use of that arm.

I was quite happy to have the mx with immediate recon as I did not want RT! As I had a large spare tyre (fat belly!!) and no previous abdominal surgery I was a prime candidate for a DIEP. I had my mx with DIEP on 29th May this year and am recovering nicely and nearly back to normal. It is major surgery and a long op - mine was about 6 and a half hours but it can take as much as 8. You need to take your time and get them to tell you all the options and the pros and cons of each. They will probably have something in mind already for you as it will be different for you and they will hopefully know your medical history!

Don’t allow them to rush you - you have time (unless there has already been spread which is highly unlikely) to think about what is best for you and research things thoroughly.

So you need to ask them about:
The options for reconstruction.
The pros and cons of leaving treatment until you have recovered a bit more. It might be that the risks are minimal as you have intermediate grade.
Whether or not you will need RT/chemo afterwards.

Such a scary time for you on top of everything else you are going through.

Hugs and best wishes

Liz x

Hi I had a bilateral mastectomy in June, as I had a smallish lump in the right breast 1.2cms but also a strong family history too. I had immediate recon with implants and will consider nipples at a later date! Physically I have done well I think! I was after surgery found to have a large 6 cm area of DCIS in the left breast which is HER positive. This is apperently unusual and they say I dont need herceptin for it as DCIS isnt invasive??? I will have tamoxifen once my chemo is done though as the breast ca was ER positive
Good luck at this very difficult time
Mandy x

Thanks for all your advice. I’ll find out the results tomorrow. Fingers crossed -xxxx-

Good luck for tomorrow Loubee
Liz x

Well, it is a mastectomy & I’m having some lymph nodes removed on Thursday to check that there’s nothing in there. Hopefully, I’ll be able to have a mastectomy with an immediate reconstruction on the 15th & nothing invasive will be found in the tissue I have removed. I’m still in shock really. 1 question though, I am a twin, although my twin is male, is he at a greater risk of developing something himself?
Lizdeb, reading your story is inspirational, thanks: hope the outlook is good for you.

Hi Loubee

Whilst you wait for the other users to reply to your question, can I suggest you give the BCC helpline a call and talk this through with one of the trained members of staff. Here you share all your concerns with someone who will offer you a listening ear as well as practical infromation. The number to call is 0808 800 6000 and the lines are open Saturday 10 to 2pm and Monday to Friday 9 to 5pm.

Best wishes Sam, BCC Facilitator

I had 3 lymph nodes removed for testing on Thursday & am now waiting until next Thursday for the results. The surgeon popped in to see me before I went home & said that the nodes were swollen. I can’t sleep with worry. I did call the BCC helpline & spoke to someone who tried to put my mind at rest, but I can’t help but worry.
I went to the Drs on 9th August & I had my 1st biopsy on 22nd August, I’m finding it difficult still being in the waiting room. I know I’ve got DCIS in a lump plus several other areas & that I’m going to need a mastectomy on the 15th, but if the lymph nodes don’t come back clear, it means I’ll go into chemo & who knows where it will have spread? Not having an immediate reconstruction is the least of my worries right now.
What strategies do you have for the endless uncertainty and waiting? People tell me to be strong & fight it, but how can I when I still don’t know what I’m up against?

Hi Loubee
Just been reading your post and first of all I’m really sorry to hear about your diagnosis. You’re going through a really difficult time and it is this not knowing that is the worst. I was diagnosed with high grade DCIS last January and had to have a mx when they couldn’t get clear margins from the WLE. Luckily my lymph nodes were clear but there was so much waiting around for results and this honestly was the worst bit. Like you I thought I’d go for immediate reconstruction but after thinking about it as it is a major operation I decided against it and for me it wasbecause I didn’t want any more scarring on my body but that’s my personal choice…I feel I can live with me as I am. However, you say this is now the least of your worries as you are worried about it having spread…I nearly went demented with worry when I was going through it all…once you know what exactly you are facing and you are given a treatment plan you will feel more positive because something is being done. I won’t tell you to be strong because I wasn’t…my legs turned to jelly on the days I got results but what I do know is that once I had a plan of action I felt more positive.
It is a huge emotional roller coaster of a ride no matter what so I will be thinking of you on Thursday xx

I have been unable to go online for a week so have not seen this till today - I do hope your node results are negative Loubee. Please let us know what they say today.

Thinking of you today

Liz x

My lymph nodes were clear! HUGE sigh of relief!! So, I’m having a mastectomey & recon on Monday. They’ll check that there’s nothing hiding underneath, but if there is it is only likely to be very small, 2mm or so. If there’s no extra carcinoma, just what’s in the lump in the duct & in the microcalcifications, that’s it. Mx & recon & fixed, not even chemo.
Best wishes to all of you out there who are newly diagnosed & going through treatment at the moment. It’s a very scary time, the uncertainty plays on your mind: usually at about 2.00am! I’ll keep you posted on what happens & the outcome of the mx. Thanks Lisdeb & everyone who has answered my posts & been there for me. I hope your treatments are all going well.
Best Wishes -x-

Hi Folks, well my mastectomy & reconstruction surgery was done & seems to have gone well. I’m waiting for the results from the breast tissue that’s been removed: hopefully there’ll be no nasty extra surprises. It’s a painful recovery; I had an LD flap reconstruction so I can’t get comfortable front or back.
I’ve had a haematoma develop on my back which is quite painful & is still solid. I’ve been told that when it softens up, I’ll be able to have it drained in clinic. Has anybody else had this? I was wondering how long it would take to go liquid & soft & how long it is likely to last for?
Thanks -x-

Hi Loubee. I too had DCIS grade 3, but lymp nodes were clear so had a mastectomy and reconstruction (LD flap)on 20th August 2012 with no treatment to follow great… Was in hosp for 8 days, had 4 drains, but all drains removed before leaving hosp. After the op. I too found it very uncomfortable at first. Bad enough having to wear very tight sports bra 24/7, but my back just felt as if I was in a straight jacket.Visit the hospital every two weeks, and each time they’ve taken some more drain from my back, but each time it’s been getting less. I’m now into my eleventh week. Got used to wearing the bra permanently, my back is still quite solid, but think it’s very very slowly getting better. I was advised to use Bio Oil on the scars which I’ve been doing twice a day and it does seem to make the scar softer and not so taunt. Doing exercised religiously 3 times a day which hosp. gave me sheet instructions, now added 1.5 kg weight to exercise, but only do what my body will let me do. My movement is getting slightly quicker… not shuffling around so much. The plastic surgeon told me it will take a good 12 months before feeling back to normal. But so relieved they were there to help me get better.
Masses of good luck to you Loubee and to all the other ladies with similar problems. Big hugs to you all. We’re all here to tell the tale, so that’s got to be good!!! xxx

Thanks capital, that’s really cheered me up. I’ve not had anything drained yet, but hopefully they’ll be able to next week. I’ll try your idea with the bio oil, thanks.
Good luck with your recovery & thanks for your reply,
Loubee -xxxx-