High grade DCIS

Hi, 

      Sorry about your news. I got diagnosed in October with a mammogram ultrasound and biopsy. At my appointment they arranged for me to have a CT scan and bone biopsy to identify the tumour. I’m a nurse who works in ITU so didn’t know much about breast cancer. I found my surgeon extremely helpful and knowledgeable. I took a pad and pen with me to take notes and ask questions. Also  got a copy of my CT scan and my pathology reports  after my surgery which helped me. You also see an oncologist who can answer your questions. It’s all so overwhelming. I also got a big folder to take away all about the different type of cancers. Hope everything goes well on Monday xxx

Morning 

Warm welcome to just about the busiest Macmillan group :-/

Are you still waiting for the ER/PR and HER2 receptor biopsy results ? as your treatment regime may change once these are confirmed or ruled out - or are you having surgery then a treatment plan put in place depending on post surgery histology ?

J was high grade DCIS but had to have a mastectomy (8 mm cluster behind and attached to nipple and small breasted) Histology came back and it was found to be ER/PR+ and HER2+ positive... Triple Positive meant her needing a kitchen sink approach including 6 x chemo and a year of Herceptin, 15 x Rads and 5 years of aromatase inhibitor oestrogen busting tablets. So 'just' dcis isn't always the fluffy kitten it is made out to be. Her only symptom was a slightly inverted nipple.

You really need those receptor results, they determine all follow on regimes ?

Hope this is of some help, take care, G n' J

I initially had DCIS which wasn't seen in a mammogram several years ago (they thought there was something but the u/s looked clear),  and when it was checked last year before surgery after my tumour was found it still wasn't seen,  but it was there. Mammograms (and ultrasounds) sometimes miss cancer, and lots of women have other areas found after the initial surgery.  My sentinel nodes looked clear in the u/s,  but 1/2 taken had 6mm(!!) which was not seen, and my surgeon said about 20% who seem clear aren't. I was told I didn't need a mastectomy,  argued for one as I felt it was best,  and my oncologist said that it was the right choice after seeing the results.  Thankfully after level 3 clearance nothing more was found so the initial surgery removed all the visible cancer. Looking at stories here and on a couple of F******k forums I'm a member of it's uncommon but not rare for this to happen. 

Having a mastectomy for such an apparently small area of DCIS might be difficult get approved,  as surgeons like to consider how it will affect you after treatment as well. I think that in some areas reconstructions are beginning again if that's what you'd like, but there's a huge backlog of women who were diagnosed from March onwards still waiting on surgery.  

Having an MRI sounds like a really good idea to get a clearer picture  Have they agreed to this on the grounds of deciding which surgery? 

Hi

I am only going on my experience here and what I have found out on my journey - so please don't take this as what must/should happen as things change all the time. At present you have a diagnosis of DCIS which is classed as stage 0 cancer, ie it hasn't become invasive. Until you have surgery this diagnosis won't be confirmed. Surgery is for the existing cancer you have, and whether that is DCIS or invasive a lumpectomy followed by radiotherapy will always be the preferred option for any team (and follows NICE guidelines). The comparison between lumpectomy/radiotherapy against mastectomy for recurrence in the breast is that there is no real difference. A mastectomy will always leave some breast tissue.

All/any treatment after surgery is to prevent the recurrence, and that will be guided by your histology after the operation and whether any invasive cancer is found during your operation.

What can happen during lumpectomy surgery (and happened to me) is that further cancer is found and no clear margins are obtained which then results in a "cavity chest shave" to remove more tissue. If you look at my biography you will see my story so I won't bore you with it - but consequently I ended up with a mastectomy, by which point I was desperate for the to remove my breast.

Fast forward 3 1/2 years, and a mastectomy is a huge difference to a lumpectomy, mentally as well as physically, and can cause many more issues in the future, I have had two reconstructions and will probably need another operation due to issues in the last one, when all I want to do now is try and move on.

What would I suggest? Call Breast Cancer Now (if you google you can find their number) and speak to one of their team about their "someone like me service" who will be someone with a similar diagnosis as yourself. I would also ask your surgeon what their percentages of "failed" lumpectomies is, nationally it is about 20%. Ask them how they decide on the lumpectomy/mastectomy decision. If a mastectomy is a possibility ask what reconstruction they offer and whether where your DCIS is would you also lose your nipple.

If they find invasive cancer and this is shown in the SNB, do they operate and remove all nodes in the same operation (my hospital check whilst you are under and do it all in the one op, others have to send the sample away and it results in a further operation) Ask what they check for in any histology ,my invasive cancer was ER+ and HER2+, I was told DCIS isn't checked for HER2+ as chemotherapy is not a treatment for DCIS , so ask about this.

Just another thing in the lumpectomy/mastectomy debate, you cannot have a mammogram on your flat or reconstructed breast, so that goes unchecked once you have had your op - the mammogram is just on your healthy breast, wheras a lumpectomy allows for both breasts still to be checked.

I hope this has helped and not confused you, there is so much to take in and so many decisions to be made, and I think people who have a medical background find this much harder being on the other side of the decision making.

Take care and best wishes for Monday

Jo x

Hi 

Just adding on to all the others that have posted (especially the stage 0 that has been mentioned by jowoomot).  I had IDC ER+ 15mm grade 2 and then DCIS - 2 separate areas grade 3 (high grade) of 34mm and 20mm ER/PR-.  Unusual to have 2 different types as I didn't find this out 'til much later and sometimes I think now that 'ignorance was bliss'. I think I would have been a full panic mode had I realised at the time that the DCIS I had, hadn't turned into the cancer, but was another type...

As a nurse you have more understanding of the human body than most of us and that is possibly a curse as well as a blessing.

Because I didn't have a clue and hadn't found Macmillan forum when I was diagnosed I just 'did as I was told' and was delighted when the surgeon examined me and said "we can save your breast and do a lumpectomy/WLE"

If things were normal now, I would be having my year 3 annual mammogram in a couple of weeks - clearly all this is on hold - who knows when this will happen! - but lumpectomy and radiotherapy was naturally sufficient for me as my sentinel nodes which were removed during the surgery were clear.  The treatment plan is always based on the tumour, rather than the DCIS so for me, being ER+ for the tumour I have ER reducing tablets and no chemo, despite the DCIS being negative for ER. DCIS not tested on the HER2 because the tumour was negative (it was about a year after my op that I thought to request my medical records for the actual diagnosis).

So, what I'm trying to say is that at the age of 51 when diagnosed (my first ever mammogram call up) with high grade DCIS (no spread) and a total of 69mm of cancer/DCIS the oncologists felt that lumpectomy/WLE and radiation was more than sufficient to prevent recurrence and so far - so good!

My oncologist was a miserable git to be honest and he wouldn't even answer my questions (the surgeon I saw first - who didn't carry out the operation was such a lovely lady) but he was very dismissive and almost aggressive with his replies to any question I asked as if I was wasting his time by asking them!  Being a nurse you will have more sway, I guess but I would be surprised if an MRI was offered, given that you at the moment you are being graded as stage 0 and even with 54mm of high grade DCIS plus a grade 2 tumour I was still only stage 1.  They took 80mm from my breast to get the clear margins around the tumour and the DCIS - and the surgeon managed it first time. (at the time, again I didn't have the knowledge about clear margins needed - another thing that would have panicked me if I'd know about them!)

You will no doubt know all this, but here's the link to the staging and grading on Macmillan for cancer and here's the link for DCIS

As an aside, I would have been absolutely devastated to have lost my breast so the fact that they were able to save it was the biggest win of my life, I definitely wouldn't have even questioned trying to have a mastectomy, so naturally each person is different and that was my mindset at the time.

Best wishes,

In June 2015 age 51 after first routine mammogram diagnosed with 10mm intermediate DCIS.  I had WLE (lumpectomy) and final pathology was 11mm high grade.  I had 15 sessions of radiotherapy to complete treatment.  No hormone therapy required.  I now have annual mammograms. 

Thank you for taking the time to respond to my concerns.  I just want to be prepared to ask the right questions and do the best I can with this challenge.  How are you doing today?  Shirley

Just got results on-line chart site with ER and PR positive but unsure if enough tissue for HER2 but will ask about that Monday.  You are so right about when people hear DCIS, as it is not really telling the whole story--have to go to the detail and completely understand what grading means.  How are you today and how long out?  Thanks you, Shirley

Thank you for taking the time to give me more background and I esp like the saying at the end of looking up.  I have so many mixed feeling about all the steps and treatments, as well as worry about COVID "waiting list" for surgery.  I lost a daughter to brain cancer which is always at my side that I trusted medical staff too much and then a medical error happened and she died before ever getting to surgery.  Will keep the site in the loop after appointment MOnday.  ShirleyN

Thank you for your input and unfortunately the information given isn't always the level that patient's deserve.  How are you doing today? ShirleyN