Low grade DCIS treatment options?

I took everything they offered in 2015.  I had two areas of concern 10mm and 5mm. 5mm benign , 10 mm upgraded after surgery from intermediate grade Dcis to 11mm high grade.  No invasive cells, small scar on top of breast.  Followed by 15 sessions of radiotherapy.  I then had annual mammograms till 2020 then called for first routine in 2021.  All other breast calcifications stable since 2015.  

I too went on holiday 4 days after diagnosis, my surgeon had told me some think over treatment of DCIS but it's her preference and what she herself would have.  I'm glad I did as they can only tell so much from scans .   For your wife it's about peace of mind too .  Is she doing nothing as scared.  Will she be constantly worrying the cells have changed .

Thank you Carol for sharing your experience. My wife has only one 6mm, she has no family history, no smoking, no drinking. She actually doesn't worry about it at all, she is more confident than I am on monitoring option.

She is more worried about the op will change her body shape, some online pictures put her off. Do you know your op margin? how much difference between before and after?

Thank you again, Charlie

I was just told I had clear margins and no invasive cells and it was not hormone receptive so no hormone treatment required.  My scar is on top left quadrant of left breast . You can't see scar.  Mine had dissolving stitches and glue .   I'm a 36 G cup if that helps your wife . If I lean toward you can see a dent but no noticeable difference to anyone else.  If you click my name you'll see I had scare on other breast at y3 and recall y6 on affected breast for magnified monitoring of calcifications. 

Family history - my gran had breast cancer et 70 & 74, lived to 90 after double mastectomy and radiotherapy.  No chemo.   My mother's cousin had BC age 75 still with us 13 years later.  She refused chemo after mastectomy. 

My mother died bowel cancer age 61.  Late diagnosis and a lump appeared in her breast in last couple of weeks.  
My eldest sister died age 59 of brain cancer just a month after diagnosis.  My other sister 60 has had clear mammograms.  My brother 67 healthy despite smoking and working too hard!  

I was 51 on diagnosis, working full time , not fit but not unfit .  I'm fitter now walking 3 times a week (I took early retirement) doing Pilates etc.  .  Non smoker for over 30 years , moderate alcohol.  

i feel no different about my breasts now that I have done for 45 years.  They too big but I'm sitting in bikini top 

staystrong i have just been diagnosed with two clusters of DCIS, one is low grade 6mm, the other high grade 8mm. You are right, there is a lot of discussion online regarding the rate low grade grows and whether leaving and monitoring is an option as it could even outlive us - like all things, there will be pro's and cons and I don't think that study has fully concluded.

I'm having both areas removed via a lumpectomy in two weeks and some moving around of tissue (hopefully). Like Grogg, mine are in the top left quadrant (flatter area above/left of nipple), so an area which may leave a dent (for info, i've smaller boobs, 36B, but dense, so round and a good shape).

When i started this journey, only a few weeks ago, i was also worried about the shape of my boobs, and a mastectomy filled me with horror. Quite frankly, the shape of my boobs is no longer my main priority, preserving life is, but that looks different to everyone.  

The high grade doesn't leave me with the same choice, however, with the low grade, that would have been an option, and one which went through my mind. However, i want it out. Mine is estrogen receptive (it thrives off the stuff), so I want that gone too.

There is a lot online about secondary cancers, particularly following 'early diagnosed' cancer and cancer coming back. It's a complicated area and much is still not known.

Buzzzgood luck with surgery.  Did they leave markers in place at biopsy or are you having wire guided.  I had letter.  Similar procedure to biopsy but they leave a find coiled wire in place to guide surgeon.  I had this done same day in one hospital then second hospital for surgery.  I went to theatre at 3pm and home eating soup by 8.30pm

I was warned that as biopsy only pick up a few cells the diagnosis can change when full area removed.  My biopsy said intermediate grade, surgery pathology said high grade so mine was changing.  

Hello and sorry to hear about your wife’s diagnosis of DCIS.  DCIS is a very sneaky early cancer and how I wish they could determine whose DCIS would progress and whose wouldn’t.  I was diagnosed last September with DCIS low and intermediate in right breast.  Diagnosis was made after stereotactic biopsy as only thing in mammogram was micro calcifications.  When I saw breast surgeon I mentioned about just being monitored and he pretty much said that he didn’t think it was the best idea as the trials are still in progress and it would be a few years before the data is gathered.  He is a well respected breast surgeon and I know he gave me excellent advice.  So plan was lumpectomy followed by radiation as I was 72 but very active and no other health issues.  My DCIS was also estrogen and progesterone 100% positive so had to go on anti estrogen hormone too.  Well that was the initial plan but after more testing, ultrasound negative but MRI showed couple small issues left breast and a small area in right separate from DCIS location.  So to make a long story short I had stage 1 invasive cancer grade 2 left breast so had two lumpectomies and bilateral radiation.  Was a lot to digest as my plans changed because of  results.  Am very happy with results and it is not easy to make these decisions.  I saw those photos online too and they would deter anybody but I think they are extremes.  Sure wish they would do more research on DCIS.  Good luck.

Barbara

Hi staystrong, sorry to hear what your wife is going through.  Does she have follow up appointments with her consultant planned? My consultant and breast nurse were so helpful going through the best treatment options for me, and listening to my concerns.  Unfortunately, as I have a large area of DCIS, I need a mastectomy, and have opted for a DIEP reconstruction at the same time. One thing to consider is that biopsies are just samples of the affected area - as Grogg says, until the whole affected area is removed and histology checked, you cannot be sure if there are high grade or invasive cells.  

I'd be guided by what her breast team suggest, as she has a small area, so her treatment if likely to be different to what I've been advised for my DCIS.  If you are in the UK (I'm sure this also happens in other countries too) there are MDT meetings where all the specialists (surgeons/nurses/radiologists/histopathologists etc) get together to discuss all the cancer diagnoses and suggest treatment plans. 

Thank you very much for everyone's support. She has an appointment with doctor next week when we are back to the UK, the initial consultation with the same doctor was taking place the next day when she had the result which the paperwork had not been forwarded to the doctor yet. Hope next weeks appointment we will discuss in details about the diagnosis and of course treatments.

Her calcification was picked up in NHS screening mid July, and was sent to North London Screen Centre for further tests on 22nd July. A bright dot was shown on mammogram but nothing shown on ultrasound, followed by biopsies taken. A week later she was informed the result - non invasive DCIS 6mm, referred and recommended surgery. The first consultation with the doctor was just an education session because she had not received the paperwork, and we didn't think about other options at all, everything we talked was about surgery as the bias were from test centre's suggestion.

The two weeks away from home give us some clear minds that we think and read, that's how we found there could be other options too. I understand the studies haven't fully concluded but some numbers are impressing, e.g. 40-60% of women with DCIS didn't progress to harmful disease, 20% women with DCIS who developed to IBC weren't related to origin DCIS. 

Of course we are not medical professions, we probably don't know what we don't know. that will be part of the conversation with her doctor next week.

How many consultations did you have before ops? what sort of questions should we ask the doctor?

all the best to everyone here!

Charlie

Hi Charlie,  I think the most important thing is to go with an open mind to your appointment.  Has your wife had MRI done?  My DCIS was just calcification on mammogram and no lump felt.  However the stage 1 invasive cancer in other breast was found on MRI, nothing showed up on mammogram or ultrasound.  Had lots of talks with my breast surgeon before surgery.  In fact had lumpectomy done for DCIS 5 months after diagnosis.  Had lots of ups and downs during the process but got through it.  Physically felt great but my emotions were running high and wanted to make sure I made a decision based on science and not my emotions.  That is not easy.  Can you go for a second opinion?  
Here is a link that may help you both understand DCIS in more detail.

https://dcisoptions.org/resources/faq
Barbara