I wonder if anyone is in the same situation like me.
I have been diagnosed with DCIS in both breasts. I was told this is very rare (only 5% people have it in both sides). So not much is known about the causes and what the best treatment should be. I am worried about the risk of having more in the future.
Does anyone know anything about it?
Many thanks
Hello. I was diagnosed with an IDC in right breast on 25 June ES+ and HER2-. Was due to get lumpectomy but they went back and looked at mammograms and found 1cm of high-grade DCIS in left and some intermediate grade DCIS also in right. This was after stereotactic mammogram.
On Thursday I had double mastectomy. They also did sentinel node biopsy and oncotype so waiting for that now.
Hope all goes well for you xx
@lynnc123
Thanks for replying my message. Hope you recover well after the operation and all the tests come back ok. Did you have the reconstruction at the same operation?
We had private insurance so all happened quickly. There was going to be a five or six week wait for implant or nine week for DIEP so I went straight to op and can figure everything else out later xx
Yes I’ve got it in both breasts too having both breasts removed fingers crossed 15th August. Should have had the op 3rd July but it was postponed and have been put on Anastrozole ?spelling? A hormone blocking drug which stops the tumours getting any bigger until surgery. I’m having no reconstruction. It’s the waiting getting me down now I just want to get the op. Over with. Hope u get some support from this community it’s amazing. X
Hi what is oncotype? I’m having double mastectomy soon (15th Aug) and be glad when it comes round. How were you after surgery? Did you have any problems with having the sentinel glands removed? Mine are being removed too. I was told it takes 3 weeks to get the result which seems more daunting than waiting for the surgery. Just want to get on with it now
I think this is where they send off pathology to get result back as to whether chemo will be worthwhile to reduce chance of reoccurrence.
I had op on Thursday - I have used the strong painkiller at night and paracetamol during the day and doing my exercises three times a day. I am quite puffy under my arm which I understand is normal, I have been out and about (8,000 steps today) as I was really fit before op and desperate to get back to fitness.
The drains are ok - and I can prop myself up at night to get some sleep.
I had a meltdown today convinced it’s spread and they’re going to give me bad news - despite the surgeon being positive about lymph looking fine on ultrasound. I think I’m just aware that I went from lumpectomy and radiotherapy to double mastectomy in the space of a few days so I’m just wary of positive vibes if that makes sense.
Yes - the three week wait is making me crazy xx
Oh glad you’re doing okay despite pain and swelling! The fluid retention and ‘cording’ worry me more than the op! I think Im overthinking everything so keep going out somewhere to take my mind off it! Do they tell you how much exercise to do after op as I like to walk and exercise can’t stand 4 walls!! Did they measure you for prosthesis whilst you were in hospital and how long were you in? Sorry all these questions but it’s good to be able to contact someone who is having the same surgery x
Don’t overthink the cording etc.
Things may be different in NHS hospital but my timings at Spire were:
Go to NHS hospital to get radioactive dye injected into both breasts for me at 10.30am
Spire at 11am - my op should have been at 1pm but the two ops before were no shows so my surgeon and anaesthetist were literally sitting waiting for me - the nurses were pulling stockings on me while I was confirming DOB etc and TBH this was great for me as I was so scared.
I was back in room at 1.30 I think, I had really low blood pressure so took a while to let them sit me up.
I went home the next morning - they monitored me every hour and then every two in the night.
The physio came and gave me a sheet of exercises and went through them.
My anaesthetist and surgeon popped by to check in and obviously said it’ll be a three week wait for results but everything went well.
The breast care nurse came but no mention of prostheses at all. They talked about the district nurse being in touch yesterday and today, but heard nothing.
I was also sent home with lots of painkillers.
Breast nurse getting in touch again on Tuesday.
Please ask away anything else - and I’ll let you know when I get more info xx
Oh forgot to add, I was working out - weights - four times a week and also walked minimum 10 miles a day (lots of dogs), and the physio said we could try light weights in three weeks if all well.
I also walked 11,500 steps today as just went out again so pleased with that.
They just said listen to your body when it comes to walking.
Can’t message at moment as have visitors here!! So grateful for your reply and will message you in morning but amazed at how you are recovering!! 11,500 steps!! X
Hi I had invasive ductal cancer in both breasts last year. I found a lump in my right breast, grade 2 ER+, HER2+ 20mm and had a MRI to size the tumour to decide if chemo before or after surgery and it revealed a grade 1 ER+ 8mm tumour. I had two separate primary tumours. No lymph node spread.
Double wide local incision July, chemo and Herceptin from September, on 15/18 Herceptin now, radiotherapy January followed by Letrozole and zoledronic acid/zometa infusions 6 monthly for 3 years. I had genetics testing due to the bilateral diagnosis as there was no family history, which was negative so no mastectomy. Breast surgeon said no need to perform a mastectomy as outcome is usually the same with a wide local incision for my boob size and diagnosis, she advised they prefer to preserve as much natural boob s possible but for smaller chested ladies it’s not always possible.
It is more common to have one side diagnosis and I was also told only about 5% get both. I remember reading last year that they call it different names if the 2nd tumour is found within or after 6 months.
Synchronous is found within 6 months of each other, see study below rare 1/3% more likely with HER2+ which is more aggressive but treatable.
Metachronos is if found after 6 months.
You have mentioned DCIS which is ductal carcinoma in situ and can be sometimes left untreated and some are treated. I’ve added a link below.
I’m now 15 months from finding my lump and trying as much as possible to get back to a ‘normal’ life, it will be even better at the end of September when the Herceptin finishes. I’ve just had my annual mammogram and awaiting results in 2-4 weeks.
Take care 
Thank you all for responding to my message.
I had a small low grade DCIS in my right breast last year and had a lumpectomy. This year I was found to have another small intermediate/high grade DCIS (left breast). My doctor suggests for a lumpectomy to my left breast plus radiation treatment and then have annual mammograms for the rest of my life. This year I have had all sorts of tests since March and am still waiting for my operation. I am so worried that I need to go through this situation each year and also the risk of recurrence. I am thinking of having double mastectomy with implant-based reconstruction, but I am also worried about over treatment and what I will feel having implant in both breasts.
Hi
I was not aware of how rare it is for both breasts to be affected.
I was diagnosed with DCIS stage 2 and 3 in both breasts 18 months ago and had a double mastectomy followed by ECT chemo and 5 sessions of radiotherapy.
The oncx test is done on the cancer tissue removed to help the oncologist decide on need for chemo and further treatment. The score is about likelihood of recurrence and so chemo may need to be given to help reduce the likelihood, my score came back as 27, anything over 25 increases likelihood so chemo is advised I had 6 sessions of ECT followed by 5 sessions of radiotherapy .
I don’t think all hospitals offer this Oncx test, so please take it.
I wanted an immediate DIEP reconstruction but being a bigger lady aged 64 and having a long double mastectomy op was advised to wait and have 2 operations.
I have not yet decided on the reconstruction for certain but instead decided to live without whilst researching the DIEP op, as it’s a big operation and getting through the mastectomy was pretty tough. TBH I’m a little scared.
My breast nurse booked my prothesis fitting appointment after I had healed from the operation in the meantime they gave me some softies. Don’t worry you will get proper prothesis once you have healed and they send a company in to advise and help fit properly. I was given 1 set and 1 bra on the NHS, the company my hospital trust used to supply and fit was Amoena
wishing you lots of luck and love, any questions just ask
@pearly1960
Hi, thanks for replying. I though DCIS is stage 0. Why are they stages 2 and 3? Are they large in sizes? My doctor has not mentioned Oncx test. I will ask about it.
With best wishes and hope you recover well.
It looks like I had what @naughty_boob refers to as metachronous DCIS. I first found a lump in my left breast in the summer of 2020. The initial diagnosis was a small area of DCIS and a lumpectomy was proposed. After an MRI scan and further biopsies the surgeon said they found more DCIS sand so I needed a mastectomy. I chose to have the operation without reconstruction. Afterwards I was on annual mammograms for five years.
Last year this annual check up found a small suspicious area, which the biopsy found to be an invasive type. During the lumpectomy a wider area of DCIS was found. Both times sentinel nodes were taken and found to be clear of cancer cells. However the nature of my second bout (HER2+ and grade 3) meant I had four rounds of chemotherapy, a year of Herceptin (finishing in October) plus radiotherapy.
Hi @lee2 , I have had 2 instances of DCIS first in my left breast in 2020 and the second last year in my right breast. When referring to the grading both times it was High Grade DCIS this can also be referred to as stage 3 DCIS as there are a lot of differences in the cells but the difference from Stage 3 cancer is that the cancer is still contained in the milk ducts so not invasive Understanding DCIS grading and receptors | Macmillan Cancer Support
My treatment in 2020 was a lumpectomy and radiotherapy which was successful, my recent occurrence wasn’t so simple to treat and has resulted in me having a bilateral mastectomy (left breast was self-elective) and a DIEP reconstruction, the results of which I am very happy with and happy to share more details if it helps.
Hope this helps explain the difference in stages of DCIS and invasive breast cancer x
Hi there,
I thought DCIS is always stage 0. The grades can be 1, 2 or 3 from my understanding. I was just diagnosed with DCIS on both sides and am opting for mastectomy. They said chemo wouldn’t even be brought up with DCIS. Did they say why you needed chemo with it?
I am really sorry I don’t know what I was thinking when i replied to you but I had Invasive ductal breast cancer in both breasts.
I think I was focused on trying to answer the question you raised about when you get a prothesis and got carried away, please accept my apologies.
wishing you well
Dear all, after my previous message about ‘DCIS in both breasts’, I had a wide local excision for an area of intermediate and high grade DCIS (left breast) on the 5th August. I thought to give myself a chance to see if I could keep my breasts. But at my follow-up appointment two weeks later (19 Aug), I was told the DCIS was measured 25 mm (not 3mm shown on the images). I now need to have either margin re-excision or a mastectomy. I am thinking of having a double mastectomy (I had low grade DCIS to my right last year). My doctor is going away for 5 weeks. I am worried about the delay for the operation now as I do not have clear margin and whether the cancer cells can grow or spread. I don’t know what I can do now and am very anxious.
Can people also share their experiences of breast reconstruction? All my knowledge is from booklet or internet, not a person with the experience. I am just terrified now.