Hi, I’ve just been diagnosed with High grade DCIS 13/7/16 which was a bit of a shock as I’d only had an achy pain in my boob! I went for assessment and was told that it all felt OK and to have a mammogram just to get checked out . Mammogram and ultra sound found calcifications , again I was told they look benign so don’t worry . A few days later I was asked to come back and have a biopsy which then revealed this little nugget ! The staff at the hospital are fabulous , informative and really kind and although I’ve started off really positive I’m starting to have slight panic attacks. I’m waiting for an MRI scan then surgery , I was told that it all looks contained so far but I’m worried the MRI will show something more . ?
Hi Clair
I got diagnosed with high grade DCIS following my first routine mammogram, no symptoms. The first few weeks were a blur of biopsies and results, went from shock to being overwhelmed and back out the other side as things gradually fell in to place. I had surgery two weeks ago. It is a difficult time, take all the support you can get, good that you have supportive hospital staff, don’t be afraid to ask questions or talk things through with them. Hope everything goes well for you and is as straight forward as possible xx
Hi thank you for your message, how are you feeling? I’m trying to keep busy and work is helping a lot, I break up for the 6 weeks holidays next week and I’m hoping that things get sorted asap ? Do you mind if I ask what type of surgery you had ? My nurse has been talking to me about total mastectomy and reconstruction depending on the MRI results. Xxx
HI
I don’t mind you asking at all - obviously everyone is different but it does help to hear about other people’s experiences. Like I said, I went for my first screening mammogram and got called back within a week - microcalcifications in both breasts but they were most concerned about the right side - several rounds of core then VAB biopsies but I didn’t have an MRI. Results showed what was thought to be a 5cm area of high grade DCIS in the right breast and they were unsure whether it may have started to move out of the ducts. Because of the size of the area and I’m small breasted (A-B cup) then a mastectomy was really the only option, with a sentinal lymph node biopsy to check it hadn’t spread beyond the breast. I also had a surgical biopsy on the left breast at the same time. Results after surgery showed it all to be DCIS, no spread, but actually 7.5 cm; unfortunately they also found a very small area on the left breast so will need some more treatment for that.
Physically I’ve found it quite an easy operation to recover from but obviously there is an emotional impact as well so I’m taking it easy and trying to do nice things, spend time with supportive friends, that sort of thing.
Hope that’s helpful, do ask if you want to know anything else, hope things get sorted for you xx
Sorry I haven’t replied I’m just finding everything really overwhelming at the moment ? Xx
Hi, I’ve got my MRI appointment on the 29th July and I’m taking everyday as it comes ? I scared myself a bit by reading to far into things !! No point in worrying until it happens they say … So I’ve made a plan to catch up with family / friends . Started a to do list around the house and garden. I’ve also decided if I need a mx which it looks likely, I’m not going for reconstruction as I want everything to be over and done with asap. thank u for your support I hope all is going well for you at the moment xxxx
I really hope it all goes well on Friday and you get some more answers and options, same with your other appointment ? I’m really trying to be positive but I think I’m really just trying to wish it all away by pushing it away. My family and friends have always seen me as a strong positive "she’ll sort it "type of person and I feel like I can’t shatter that illusion. I’m really good at pretending everything’s ok. sorry I’ve gone on a bit. I have been reading your other posts and you’ve been through such a lot thank you for taking the time to help me xxxx I’ll definitely let you know how I get on keep smiling xx
Hi Clare - I had the same in April and I’m now at the beginning of week 3 post surgery with immediate DIEP reconstruction. My care has been amazing, take all the help and advice and importantly allow the TIME that you need, you can be referred to a counsellor if it feels too overwhelming and help you think about options and processing. I’ve just had pathology results with no micro invasions - i had my sentinel lymph node biopsies a few weeks after the initial diagnosis as knew I wanted to ensure immediate reconstruction was an option for me. Payhology came back as a larger area than the already large area and highest grade that were confirmed from the previous biopsy. Stay positive and you have options and there is light at the end of this.
Thank you Psanchez/ Liz I’m making an appointment to see my dr just to talk through a few things, I’m finding that I feel really nauseous after eating and I’m getting really tired but then I can’t sleep … Can’t win ? Im not planning on reconstruction as I’m terrified it’ll come back again, I know I’m jumping ahead a bit. One minute I think I have it sorted in my head then I change my mind !! I will talk to the consultant and nurses when I know more from the MRI but that’s my gut feeling at the moment xxx
Absolutely - I was luckily referred to a psychiatrist as I found the whole experience a whirl wind and too fast. This was a real lifeline for me and can’t say how much this little bit of time and extra help with my own thoughts and not just the diagnosis was so important. Hang in there, time really does make a difference.
Morning Liz, thinking of you today hope it all goes well xx
That’s really good news it definitely pays to get a second opinion ? I’ve had a really good day today, I caught up with a friend who’s been through similar bc as me and is 6 years clear ,we’d never really talked about it before as it happened before I knew her, she was so helpful so I’m feeling really positive. I’m off on holiday with my hubby on the 2 August our 1st one alone since we had our kids, I’ve got to pop back for the MRI results on the 3rd it’s a good job we’re not going far. What about you? Xxx
Hi Liz , I had my MRI on Friday it wasn’t as bad as I thought it would be and I just kept thinking about what you said it’ll give a better idea of what’s going on so thank you for that advice ? I had my results today and I’m so lucky because it’s all contained in a 2 cm area , I’m having it removed on the 15 th August as a lumpectomy then they’re going to check it out and see if I might need radiotherapy, I was so worried it had spread. We’ve gone back to our bb today and I’m going to really relax before the next hurdle xxx How are you ? Xxx
I’m having a wobble day today ? I’ve got my BCN and pre op tomorrow for the WLE on Monday which means it’s really real !! I just want to go away and come back when it’s all sorted but it’s never going to be sorted is it ! I know it could be worse and it’s been caught early but it’s the what if’s again. I’ve written some questions to take with me this time for the nurses it’s all such a whir when I’m at an appointment I always forget . Sorry I just needed to vent xx
Thank god for the BCN she was amazing. She showed me the mammogram and we saw the size of the DCIS it’s amazing how they found it. She calmed all my fears for Monday now I’m ready to go. If I could give anyone advice it would be please ring your BCN if your worried as they are magnificent. They even spoke to me husband and offered him support to. I hope everyone else is doing ok xxx
Is there anyone else like me who had a small area (10mm) high grade DCIS removed then a re-excision to get clear margins followed by radiotherapy worried that because of the high grade they have a higher risk of a recurrence of DCIS or invasive cancer? Most of the posts I read are from those who have had a mastectomy for various reasons for their high grade DCIS and have no concerns about a recurrence.
Hi 76ag , I’m in tomorrow for a WLE to remove a 2cm DCIS I’m hoping that they get it all and yes I’m petrified it’ll come back as I have 2 other bits of calcification in the same breast. I spoke to the BCN and she showed me my mammogram and explained that they are different shades of colour than ones that change into cancer although that doesn’t mean they won’t in the future . She also reassured me that I’m in their system now I’ll have regular mammograms and can go direct when ever I feel a change even if it’s not a lump but just a feeling and I’ll be checked. As I’m going through this I’m trying to go step by step. I find the what ifs the hardest but then I remember I’m lucky to have had this found early and am on the radar ?. At the moment I’m still on the waiting game surgery first then results of that to see if Ii have any invasive cancer what sort it is and if I need radiotherapy but like I said step by step for me . Xxx
Morning everyone, I’m feeling good this morning glad this bit is over. The op went well Even though the radiographer found another bit of DCIS and they decided to take the 2 bits out! My consultant who is quite funny really said I’m a complicated person ? as I bring up new things every time he sees me ! But that’s ok because it means they’re looking closely and working well as a team so I feel confident so far. I’m taking everything bit by bit and not thinking about anything else but getting over the surgery. Hope everyone is doing well and sending you lots of love xxx
Reading a lot of these posts I find lots of people who had a WLE also had a sentinel node biopsy. I am concerned now that I only had the 10mm of high grade DCIS removed and a re-excision for clear margins but nothing else biopsied. Concerned that something could have been missed. Did anyone else have a WLE without sentinel node biopsies?
I didn’t have node biopsies when I had my WLE as I had an MRI that showed they were clear. My consultant believes you should only have the surgery that you need and I agree. I worry surgery can release damaged cells into the body to spread xx