I am new to here and was wondering if there is anyone else in the same position as me.
In November I had a call back after a routine mammogram. I had multiple biopsies taken and a marker fitted. Ob 22nd December I received the diagnosis of 5mm DCIS non invasive high grade. I had a wide local excision on 12th January. On Friday 9th February I received my results and was told it is now 30mm and I require another wide local excision. They are requesting an MRI prior to surgery. I am just wondering if there is anyone else in a similar position to me? I am struggling to understand how it can change from 5mm to 30mm. Thank you xxxx
It happened to me too.
I was diagnosed with ductal invasive cancer measuring 17mm. I had a wide excision and 9 lymph nodes taken in October and the histology came back as DCIS and LCIS measuring 49mm in addition to the original diagnosis. I was so shocked that I was unable to ask any questions at the appointment. Like you I couldn’t get my head around the discrepancy. Even my breast care nurse couldn’t understand it and she requested a review of the pathology which confirmed the result. How could this have been missed? I even queried if they had the right notes and report. My mind went to some very dark places.
Discrepancies in measurements are not unusual as they cannot be sure until surgery but it is unusual for it to be so great.
The breast care nurse that I spoke to on here was really helpful and although didn’t have any answers talked me through it and gave me advice about what to do and ask.
My advice would be to ring the helpline on here and your breast care nurse to talk it through.
I had further surgery 2 weeks ago, get my dressing removed today and results on 26th February. I am dreading the results.
I hope that you get some answers to put your mind at rest. Sending a virtual hug.
Thank you holly.52 for your reply.
I am so sorry that you have experienced the same as me. It definitely sends your mind into overdrive. I thought the same … do they have the correct notes?
Did you have an MRI before your second operation?
I wish you all the very best for good news on the 26th.
Sending virtual hugs back to you xx
No, I haven’t had an MRI. I do have extensive calcifications in both breasts considered to be benign but obviously some were DCIS. It scares me that other areas may have been miss-interpreted and is something that I will be asking my surgeon about. I had breast surgery twice in the 80s that was diagnosed as pre cancerous which I am now told is what DCIS was called in the past.
Hi @tracy1 ,
Sorry to hear that the first operation wasn’t successful and you needed a re-excision. I am going through the same experience, and this is my second time round with DCIS as I have previously had a lumpectomy and radiotherapy on my left breast which was successful first time round.
I was diagnosed with DCIS again in December but this time in my right breast, my consultant was very good and explained that it hadn’t spread from my previous occurrence. I had surgery at the beginning of January which wasn’t successful as the pathology report showed 2 margins still contained DCIS, I asked the consultant about why it wasn’t picked up and apparently it isn’t that unusual, it was explained that early-stage DCIS doesn’t always show up as calcified but is it can be identified in the laboratory. I felt better knowing that it wasn’t suddenly there and they hadn’t missed it but more couldn’t see it and hope this helps you too. Interestingly I wasn’t offered a MRI scan prior to surgery, and I had a re-excision on the 2nd February and go in for my results tomorrow.
I hope all goes well with your re-exision and that the online community is helping you, understand what is going on, there is always the Someone Like Me service available through Breast Cancer Now where you can speak to someone who has gone through a similar experience.
Hi @holly.52 Thank you again for taking the time to reply. I have a lot of calcification too, but they were only concerned about this area. They have put me forward for an MRI, but said it may not be sanctioned if they dont feel it will help.
I have also developed quite a large haematoma, but they have said the surgeon will remove that during my next surgery.
I feel in limbo now, just waiting for my next appointment xx
Hi @Summer-sunshine Thank you so much for your reply. How was your second excision? Was it any more painful than the first? Im absolutely dreading going through it all again. I questioned like you did how can it be so much bigger than they originally thought and, like you, they said it sometimes can only be seen under microscope xx
Hi @tracy1, The second excision was more sensitive for the first 48 hours but has settled down quicker than the first operation, and the bruising has now gone after 10 days (i do bruise easily so not sure if that is normal).
It is all a bit of a shock having to go through the whole thing again, but it did feel easier as I knew the process, so didn’t have the unknown to go through.
Feel free to ask questions and take care of yourself xx
Thank you @Summer-sunshine I did read on here that it was more painful the second time. At least I’m prepared. Do you mind me asking what size your DCIS area was please? xx
@tracy1 not at all, my first DCIS in 2020 was just over 50mm. This time is similar to yours as the mammogram showed 6mm of calcification but turned out to be at least 40mm and is showing extensively through 2 margins so they think it is a similar size to my first occurrence
I should add I have annual mammograms due to my previous treatment, so this was picked up early.
Thank you @Summer-sunshine it definitely sounds like mine. I really hope you get good news tomorrow. Your results appear to come through quicker than my hospital, mine took 4 weeks from date of operation last time. I come under Warwickshire, although the testing is done in Coventry I believe. Have they mentioned radiotherapy to you? They have told me I will more than likely need it xx
@tracy1 last time I had the 5day targeted course, over Christmas! It really wasn’t that bad, the setup appointment was the longest and most intense appointment but the others were very quick. Side effects weren’t to bad a sun burnt breast so lots of moisturiser and I recommend practicing holding your breath for 20 seconds as it can feel a bit scary doing that when having to stay very still. I found it was all ok and it had minimal effects on my breast.
I am assuming if all goes well tomorrow then i will have the same treatment on my right breast.
I hope you get your operation date through soon.
Always happy to chat xx
Thank you so much @Summer-sunshine you have been a great help and it’s good to know there’s someone there to chat to. It seems quite a lonely road at times doesn’t it. Good luck for tomorrow. Please let us know how you get on xx
Hi @Summer-sunshine how did your appointment go? I really hope it good news for you I have been thinking about you xx
Hi I was diagnosed with DCIS in November 2022 and had biopsies, markers two surgeries but the cells were covering the entire breast so I had an option of having radiotherapy or a total masectomy. I was devastated i opted for the masectomy. I was doing well for a few months up to September and it was as if the realisation of the traumatic experience i went through i just went into this depression. I now understand that i was grieving for a part of me lossed. I will be starting Talk therapy tomorrow. Take care of your physical, mental and emotional health so important.
Hello @talawah I am so sorry to read about your experience. And i really hope you receive all the support you need. This really is a journey isnt it. Sending you hugs and I hope tomorrow goes well xx
I was at the hospital yesterday until 8 pm talking through options with my wonderful consultant (who was running almost 2 hours late with appointments). Unfortunately, they found some more DCIS in one of the margins which is a bit of a blow, so I am currently considering next steps of whether to try again or just go for the mastectomy and be done with it.
It is a journey but one thing I do keep reminding myself and others of is that this is all early stage and non-invasive so doing this is to prevent a more aggressive cancer in the future, so all is good!
I will keep you updated.
Hi @talawah, I am really sorry to hear about your experience and can fully understand the grieving for part of your body, as breasts are part of our identity. Out of interest, did you go flat or for a reconstruction? I am currently deciding whether to try a 3rd re-excision or a mastectomy.
Hope the talking therapy goes well for you, xx
@Summer-sunshine It’s a hard decision to make I just cried and cried. In the end the decision lies with you. I am 63 years old, 64 in October i have adult daughters so i am truly blessed. My oldest will be getting engaged in June when she goes on holiday with her boyfriend to Italy so positive things to look forward to. I said to the consultant will i be around to see my grandchildren and she said of course you will. So take it one step at a time. I am praying for you that the right decision for you will be made. Have a blessed rest of the week.
@Summer-sunshine I went flat no reconstruction because they thought putting me through surgery again would put me at risk of a blood clot. I take warfarin after having a bilateral pulmonary embolism and a Deep Vein Thrombosis 2009/2014 respectively. There again it’s your decision.