Stage 0 DCIS - advice needed

[Dozymoo42]

Hi all, My DD 26 has just been to the breast clinic and told she has Stage 0 DCIS.

Bit of a backstory she's had an horrendous 12/18 months and is currently being tested for MS. However January she started with pain in her right breast did not think much of it as her on going symptoms are all right sided.

Breast then enlarged to double her left breast size and started leaking blood stained discharge. Doctors give her multiple antibiotics and then sent her to breast clinic yesterday.

Consultant examined her said it was DCIS and has booked her an ultrasound. They have advised that due to her age they wouldn't remove it. And if it doesn't show up on the ultrasound she will be discharged.

My questions are has anyone experienced this? Does my daughter have a right to request treatment by surgery as they literally said they only reason they wouldn't do it is if she wants to breastfeed when she has children.

Apologies for the long post but we have never heard of this stage before and we are concerned and confused

I was diagnosed with dcis following a routine mammogram, I had no symptoms and was told the treatment would be to remove the area through lumpectomy.
Due to developing a massive haematoma they were unable to find the area on both mammogram and ultrasound so were unable to perform the surgery. I was told that there was a 50% change it would not progress or if it did it would take several years so they would recall me in a years time.
The following year I had another biopsy despite everything looking the same on ultra sound and mammogram. This time they found a tiny grade I cancer, (no symptoms or lump) which I had removed through lumpectomy.When I went for my results I was told they had found no cancer but only dcis so they rechecked my biopsy and there was 2mm of cancer which was all removed during the biopsy.I then had radiotherapy followed by hormone therapy as it was hormone positive.
I would see what the ultrasound shows, I may be wrong but I would have thought you would need a biopsy to say it was definitely dcis. My first biopsy was done because they found some cysts that were drained and they wanted to be sure everything was ok.
I’m sure you could ask for a second opinion after the ultrasound , at my hospital they were doing a trial and you had to have annual mammograms for 10 years if you did not have the dcis removed. I personally would pay for a private scan if you’re not happy with the outcome but they may advise a follow up scan in a years time.

Thank you so much for your response and insight into it.

We will hang fire and see what the scan shows, this is the bit that confused me I thought it would be scan and biopsy. But the consultant definitely said it was DCIS.
She also said it Doesn’t always show up on an ultrasound and if it doesn't then she will be discharged.
Everything feels a bit vague and it just fuels the panic, this is why I posted as I know there are lovely ladies on MN that may have had a similar experience.

I hope you are doing well xx

It’s been five years now since my treatment and I’m feeling good thanks.
I can’t imagine they wouldn’t want to keep an eye on things but all I can say is for your daughter to be vigilant if discharged and ask for another referral if at all concerned.

If it was stage 0 I don't see how the consultant would know it was dcis without scan, mamagram or biopsy. Usually when you go to the breast clinic for the first time it is a one stop shop they do a mamagram get the results while you are there, have a biopsy which you might have to wait a week for the results.

This is what is confusing us, however it is definitely what the consultant said as my mum was with her, so it's not a case of mishearing etc
Not sure if the symptoms she had presented with are tell tale symptoms maybe?? - there are also rashes on her breast along with like skin texture changes. The consultant went as far as to tell her to stop taking the antibiotics that she had been put on as it was not mastitis or infection etc

I would definitely push for a second opinion if there are skin texture changes and change in size with discharge. I really don’t understand how they can make a diagnosis without a biopsy.
In my experience something doesn’t seem right with what they are saying, in my case they were over cautious with both biopsies just to be sure. I’ve never heard of them not wanting to treat someone in case they want to breast feed in the future.
i hope you get some answers soon.

Thank you lovely, we will definitely be pushing for clearer info and treatment if needed.

Hi my process was I had a mammogram due to a lump. Turns out the lump was nothing but they found a build up of calcification. I had a biopsy in that area and was advised that I need to have that area (4cm) removed via surgery as it could develop into invasive cancer in the future.

OP, there is something a bit odd about this, I’m not sure where something’s gone awry but there is absolutely not a chance a DCIS diagnosis has been made prior to biopsy. Literally zero. This is not a diagnosis that can be made clinically, or indeed radiologically alone - it can ONLY be made from a biopsy in combination with appropriate imaging depending on the presentation. I of course can’t comment on what was or wasn’t said during the consult, but either way, don’t panic, encourage her to attend for imaging, and then go from there.

(DoI: this is my job!!)

This is my understanding of it too. Not a chance that any consultant would ever actually diagnose DCIS with no biopsy. Because they cannot tell what type of cancer is causing the problem without looking down at the microscope at the cells. It’s also highly unlikely to be DCIS stage 0 when it’s causing pain and the other issues. This woman needs the triple check of mammogram, ultrasound and biopsy. If this has not been done, then kick off until it has.

Hi all, thank you for the comments!

she has another appointment at the breast clinic on Friday so we are hoping whatever needs to be done scans etc are done this time.

Long story short she was in hospital for a neurological issue for around 10 days and during this time we mentioned the swelling in her breast as it had a flare up whilst she was in hospital.They ran checks for infection and when that came back clear they spoke with the breast clinic and basically told them it was a disgrace they had left her hanging like this with no info etc. I did hope for a while that they would do the scans etc whilst she was in but they didn’t unfortunately.

She has been through the ringer the last 12/18 months and we finally have a diagnosis of FND- for all the paralysis issues she has been having just hoping for the same clarity on Friday now!

Just wanted to give everyone feedback who had taken time to comment and offer advice on this issue.
@Booobs As you said something was off with it and you were right! She attended the breast clinic today and the consultant she saw gave her a scan - he was very perplexed and was not happy with the other consultant actually saying that too her. So much so that a formal complaint Is to be raised. They have done a scan and are happy that they cannot see anything sinister so that is a massive relief. The consultant said due to her age and showing symptoms the other consultant should not even have considered that diagnosis.

thank you again for everyone who taken the time to offer advice on this

Thanks for the update. That is good news.

Oh I am SO pleased @Dozymoo42, that’s great, you must both be delighted. Best of luck with everything else going forward too.

I’m so glad you've finally got some answers and the news is positive.
In this case I think the formal complaint is completely warranted , it was truly a shocking way to be treated and caused a lot of unnecessary worry.