DCIS- The uncertainty of it all/confused

My Mum recently had a routine mammogram, and they discovered DCIS. She was refered to St George’s in London for further tests, including a biopsy. She was advised she would need surgery and possibly Radiotherapy.

Today we saw a consultant at the Royal Marsden to find out what the surgery would involve, and I have a few concerns.

Firstly, the consultant explained that DCIS (low grade) is isolated, but there might be invasive cancer and they would not know until the surgery. He offered my mum a small operation to remove the DCIS and a small area OR a Mastectomy. Although he recommended the small OP, he did not explain the benefits of the mastectomy. She opted for the small op at which time they would have to decide if she would need another op (Mastectomy)
He mentioned my mum would have a wire biopsy as well, although I can’t recall if this is done a few weeks before at her pre med assessment, or on the morning of the op.

Should they not have done enough tests to decide if there is invasive cancer, or would this only show up when the post operative pathology results come back.

I’m concerned my mum is not up to the stress of repeated surgery, she suffers extreme anxiety at times and we are all going to get her through this, but I know she will be fretting and over worrying until the operation, and then the 7-10 days post OP.

I lost my dad to lung cancer in 2002, and am being told how strong I am being, but to be truthful I just feel numbness.

Thanks for reading and sorry if I don’t make much sense.

Lee

Hi Lee,

I’m sorry to hear of your mum’s diagnosis. Usually a small op called a WLE (Wide Local Excision) or breast-conserving surgery is performed in cases of DCIS as long as the DCIS doen’t cover a large area. If the area is large then it is sometimes necessary to perform a mastectomy. They will generally have a reasonable idea of the size involved from doing the biopsy, although in some cases DCIS can be found to cover a significantly larger area when operated on. It may depend on the grade. If the doctor recommended the WLE then it sounds like they are confident that she doen’t need to have a mastectomy.

I had a wire-guide inserted on the morning of my op so that they knew exactly where the DCIS was located. The wire was inserted following a local anaesthetic and they then checked, using a mammogram, that it was in the correct place.

DCIS is exactly the same as IDC except that something, and doctors do not know what it is, is holding the DCIS within the milk ducts. When they remove the DCIS they will take a reasonable margin around it to try and ensure they get clean tissue. If any of the area outside the duct has cancerous cells then it will be IDC. Sometimes they will have no knowledge that IDC is there until the pathology is undertaken on the tissue removed in the op. It isn’t any failing by those performing the biopsy - it is just an unfortunate circumstance.

The waiting time between the op and getting the pathology results will be the worst. Mine took three weeks which was a real killer - but thankfully it was ‘just’ DCIS.

The main thing is that your mom has the support of the family and you can come on here and get support and information to help you all get through this.

Take care.

Hi Suzanne,
Thank you for your reply, it has put my mind at ease a little, coupled with the copy of the letter sent to her G.P which she received in the post this morning.
It states low grade A DCIS 33mm area, so she is somewhat reassured. I know that the invasive cancer is a possibilty but we are all trying not to think about it and have adopted a “one step at a time” policy.

My heart goes out to anyone who has been through this and has had “the wait” after an operation. It must be turmoil. I’ve awaited results for a potentially life threatening illness before, and while I was all clear, the wait was awful, as I had time to think, over analyse and be a bit negative. Obviously I’m keeping my mum as buyoant as possible.

I feel angry, angry at the cancer, but this is just fuelling me with energy I never knew I had and am finding it easy to set aside my own problems and do everything I can to support mum. But to me that is no big deal and just natural instinct kicking in.

I’m so lucky that I have a great relationship with my mum, and as a gay man we are able to discuss everything openly. We are best friends as well as mother and son.

Thanks again Suzanne for your reply.

all the best

Lee

I just wanted to post an update. My mum had the WLE last year, they did not get clear margins so she had to go back for another op, as day surgery. 2 weeks later and she had the results back, thankfully all clear of DCIS.

Fast forward to March this year, my mum has routine mammogram done, and they find something in her other breast.The radiographer told my mum it had probably been there some time. When we mentioned this to the specialist he was rather unconvincing saying that the breast tissue changes is more fatty as woman get older,so it was only spotted this time, could things have changed so much in less than a year?

They did other tests and we go back to be told “it’s not cancer” then the but

There were abnormal cells that needed removing…and also a small lump.
How could the specialist be so sure it was not cancer?

On my mums 61st birthday she had to go to the Marsden for pre op assessment.

Last Wednesday she had the guide wire put in and more mammograms. She is so brave and did not complain once. She had the WLE and small lump removed. Her op was at 3.30pm and they let her home at about 9pm. I don’t live with my mum so slept in the armchair overnight to make sure she was ok.

I’m feeling really confused about things and I have questions about why my mum was not given adjuvant treatment after the first instance of DCIS last year, especially radiotherapy, as she was not told of any exceptional circumstances. I don’t know if she should have been offered hormonal treatment.

We have to wait till the 24th for results, but something is nagging at me that my mums treatment has been mismanaged.

I know it’s late, just can’t sleep.

Hi there Rockbird
Sorry to hear about your mum. She will be grateful I’m sure for all the emotional support you are currently offering her. Believe me, it will help her through these worrying times.
I had DCIS too but was only offered a mastectomy because I had 52mm and it was multi focal. I was angry at having to lose my breast but after the op I was told 8mm was invasive. They could not have known this before the op.
Your concern and love for your mum is heartwarming to read. She will get through this with you by her side. In the meantime continue to use this forum as you need support too. The shock and worry have hit you hard too. You will get lots of help and advice here.
Annys x

Thank you sweetheart. My mum got a letter today saying it is DCIS, but no other information. I wish she did not have to wait another 9 days for results. The 24th is also my brothers birthday!

The good news is she has decided to quit smoking (after 43 yrs!)
She is going to use the electronic cigarette which only contains nicotine.

Sending love and light to you Annys. I hope your recovery is going well.

Lee

I called the Royal Marsden today to speak to a doctor re the dcis. They would not tell me much. I asked if he thought my mum would need radiotherapy and he said it’s best to wait for the appointment, which has me worried now.

My mum has been really tired post surgery, and I don’t know how much more she can take. She puts on a brave face but inside I think she is terrified :frowning:

She was talking about saving the money from quitting smoking and putting it in a savings account for me to have “one day”

I can’t imagine a world without my mum in it, and I’m not sure I would want to live in a world without her.

Hi Rockbird

As well as the support you are receiving from the other forum members
if you need to talk to someone whilst you are going through this tough time with your Mum please remember you are welcome to ring the BCC helpline. Here you can share any worries and concerns you may have
about your Mum with a trained member of staff who will offer you a listening ear as well as support and information if required.

Please do give them a call as it can sometimes help just to talk things through.

I hope this is helpful

Best wishes Sam (BCC Facilitator)

Hi Lee
So sorry to hear you are still feeling so upset and worried. Your mum is in good hands and will have the best treatment I’m sure. Are you feeling calmer today?
Annys xx

Woops, should have added that Sam’s idea to fing the BC helpline is a good one. I did it on a day when I was feeling frantic about my treatmtnt and found it much easier to cope after talking. Give it a go.
Annys xx

Hi Annys and Sam, thanks for the replies and info. I’ve not been great, can’t sleep, been awake 22 hrs. I need to pull myself together, got my mum coming over for the weekend, just ordered a guest bed for me to sleep on so she can have my room and big kingsize bed :slight_smile:

I will give the number a call if I feel a bit stressed. I need to be strong for my mum, but my anxiety levels are high anyway in every day life, so it’s a struggle.