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Unusual DCIS a presentation?

skg64
skg64 Member Posts: 8

Hello this is my first post so hope it works. About a year ago I noticed clear nipple discharge on the left side of my bra. I was send for mammogram andultrasound which were negative but a MRI showed a 4.7x 4.2 x 2.5 suspicious area of tissue. ADH was found on needle biopsy then DCIS grade 1 on excision wire biopsy.

My surgeon told me I could have lumpectomy with 20 rounds of radiation or a mastectomy. In my mind these both seem extreme for stage 0, grade 1, ER negative DCIS in a female over 50. I have tried to research options on the 'wait and see' approach but have found very little. Most posts seem to have DCIS discovered from calcifications on mammogram or a small lump. Not sure if presentation by discharge leads to a worse or better prognosis? can find nothing on this topic.

I was wondering if anyone has has a situation like mine? If so what options were presented. Is there anything I should consider with treatment due to the fact mine does not show up on mammogram?
Anyone advised they can watch and wait with grade 1?

I would think DCIS grade 1 is slow growing. I have read articles saying in 20 years from now I would most likely still be fine as it grows so slow. Many possible side effects and complications for surgery so trying to decide is hard.

Comments

  • smoothoperator78
    smoothoperator78 Member Posts: 72

    DCIS *is* cancer. It isn't invasive yet. But it is cancer and doesn't really fall into a wait and see situation. Surgery is the standard of care. With lumpectomy, radiation is part of the deal to get equivalent outcomes as mastectomy.

  • jelson
    jelson Member Posts: 622

    SKG64 - You are correct, there are physicians who advocate/have advocated a "wait and see" approach, but I haven't seen any actual studies which support such a protocol. It all seemed theoretical, based on some DCIS seeming to have disappeared over time - the conclusion being, some presentations of DCIS, not yet defined, might not require treatment. Your Grade 1 seems to be in your favor. However, here is a study that might be of interest to you, where different modes of treatment for DCIS are compared and a proxy for needle biopsy only is used. https://www.clinicaloncology.com/Breast-Cancer/Article/09-16/Data-Show-Risk-of-Watch-and-Wait-Approach-to-DCIS/37871.

  • moderators
    moderators Posts: 7,685

    SKG, we welcome you to the BC.org Community! Sorry you have to be here, but we're so glad you've joined us and hope you find it to be a place of support and information. If it helps, here is an article you might be interested in, from our main site:

    Treatment for DCIS

    Hope you find it helpful!
    The Mods
  • skg64
    skg64 Member Posts: 8

    SmoothOperator: Thank you for your response and at bit of an reality check. Not sure about my negative status as I think only ER was tested. Report says “ER negative 1% of cells ALLRED score 2/8”. I asked the surgeon about this and she said ER did not matter with DCIS. The nurse beside her said “negative is a good thing”???? I was thinking ER negative, grade one and older age was a good thing. However I do realize the area is largish and presented with discharge so something to consider. Also scary I have regular mammograms since age 40 with never a call back.

    Jelson: Thanks for the link to the article. Depressing to read but great information, something to think about seriously. I think I am struggling with fear of pain, complications, and recovery. My wire excision/lumpectomy is still very sensitive and tender post 3.5 weeks. Worked one day and had to leave early last week,I think I have a low tolerance for pain. Also have a teenage son with autism so lots of concern with being out if commission for weeks. I guess no one wants to be here as it all sucks. Thanks again.

  • salamandra
    salamandra Member Posts: 725

    SKG64 - can you ask your doctor about intraoperative radiation? It would let you have a lumpectomy (less recovery time) and be done with the radiation in one go.

    As far as I know this is mostly used for older women since it's equivalence to tradition radiation is still unproven, but if you are a sole caretaker and breadwinner for a disabled son, and since you're dealing with DCIS, maybe it's a possibility?

    Your doctor is telling you the standard of care - optimal - treatment, which is right and what you deserve to have access to. But if you make it clear that your life circumstances are causing you to consider doing no treatment at all, your doctor will hopefully be willing to think more creatively about sub-standard of care treatments that are still better than nothing.

  • skg64
    skg64 Member Posts: 8

    Hi Salamandra,

    Thanks for your idea, I have never heard of this. I quickly looked it up on Google and it does look easier than 20 rounds of rads. The breast centre I am with, pretty such does not offer radiation at all. From what I have heard the building for this is at a larger hospital 5 minutes away. However I am not sure so I will ask my surgeon. How did you find radiation treatment? Any long term issues

  • khakitag
    khakitag Member Posts: 19

    I had a lot of the same questions as you and did plenty of research. I opted to do a lumpectomy and nothing else. I feel good about my decision and am willing to accept the risk of recurrence (30-40%) for me because my mother had invasive breastCA. I feel like if I work hard to be healthy, maintain a normal weight and exercise regularly, it heaps the odds in my favor (60-70%) chance I will be fine. From what I’ve read, if a CA recurs and is invasive it’s usually small enough to be dealt with and then you can get aggressive. I would at the very least, have the lumpectomy, though.

  • salamandra
    salamandra Member Posts: 725

    For me, radiation was fine. I had some pinkening of the skin and irritation, and got gel packs for it which I would wear on and off. It was definitely the easiest of all my treatments, except for the time/travel. But I took off work and the whole time ended up being a real mental and physical break for me which I think did a lot of good.

  • SuQu31
    SuQu31 Member Posts: 73

    Hi there

    I'm so sorry you are facing this. I understand your reluctance to go through a lot of treatment that might not be necessary, but it might help to consider the treatment now as a way to hopefully prevent recurrence or an invasive cancer. Also, the reality is that until all DCIS is removed and testing is done, you can't be certain that there isn't an invasive component. I mention this because it did not really sink in for me until after my mastectomy that they might find IDC on final pathology, which then would have changed my treatment plan.

    Also, I would seek out more information about the ER/PR status. As you can see from the info in my signature line, my DCIS was ER-/PR-. My surgeon explained that if the DCIS became invasive, we would not have as many tools in the toolbox to treat it because the anti-hormonal drugs that keep some breast cancers from recurring are not useful for ER/PR negative. She recommended mastectomy, and so did the surgeon who gave me a second opinion, based on my situation.

    There are no guarantees, no matter what treatment you choose, and everyone has different factors that go into their decision-making process. For me, I knew that if I did not do everything I could, I would not be able to deal with the “what ifs" should I have a recurrence or another cancer. I wanted all recommended treatment and I could not wait to get the cancer out. I had the non-cancer breast removed because I could not bear the thought of going back through the testing, waiting and worrying phase again.

    There is a lot of good information in the DCIS section that may be helpful to you, and I would encourage you to do some reading there. Many different perspectives and that is a good thing. Know, however, that your situation is unique to you. Best wishes as you make a decision.

  • smoothoperator78
    smoothoperator78 Member Posts: 72

    I’m in the middle of 19 rounds of radiation.

    Let me help share how minimally disruptive it is on my life (and I am working full time).

    I had a one hour consultation with the radiation oncologist telling me what the options and effects would be.

    I had a 40 minute simulation a week later where they oriented my body to the machine, did a quick and painless CT scan, and used that data to plan the treatment.

    Five days later, I had my first treatment. It lasted about 15 minutes. In and out the door in a half hour.

    Second, third, fourth treatments were 15 minutes in and out of the door.

    Fifth treatment was 10 minutes and a quick meeting and skin check with the radiation oncologist.

    Besides for putting Aquaphor carefully on my skin each evening, radiation had been such little time out of my day. It’s about 45 minutes out of every weekday (including commute).

  • skg64
    skg64 Member Posts: 8

    thank you to all who have send a resent response, I thought I posted a long response earlier but it has gone missing or just my lack of skills on this site.

    a few had lumpectomies and seem to do well with rads. Did any of you not have bad pain or long recovery? I am still hurting 3.5 weeks post wire excision biopsy.

    SuQu31: you have a similar diagnosis to me but yours was grade three. You had a long journey through reconstruction. How did you deal with that? I am nervous of everything. I struggle still with low grade, DCIS which can remain indolent and cause no harm. I am aware I am ER negative but not sure if this now makes the grade one more aggressive? Looks like ER negative is more common in grade three so not sure what it means in grade one? Any insight from anyone? thanks!

  • ajminn3
    ajminn3 Member Posts: 284

    Unusual DCIS case here. I had a palpable lump in my left breast. Needle Biopsies (2) only showed DCIS. Due to the size, a lumpectomy would be too disfiguring. I opted for a bilateral MX with direct to implants. My surgeon was fairly confident due to the lump size that there would be some kind of invasive component. Well, post pathology couldn’t find any invasive part in the original lump, but they took 3 sentinel nodes during surgery and one of those had IDC, triple positive. They still don’t know if they just couldn’t find the invasive part in the DCIS or what. All I know is that if I sat and waited on it my prognosis would be much different now. I did the whole treatment works due to being her2+. In my opinion, a lumpectomy and radiation would be a breeze and provide a peace of mind. However, everyone has their own medical preferences and opinions.

  • skg64
    skg64 Member Posts: 8

    ajminn3: wow that must have been a kick in the stomach. I am now hearing about strange DCIS cases like yours especially with a large area over 5 cm. Kinda thinking I should not stress with grade one but starting to re-think. I am sure cases likes our are rare but I don’t know what lurking in the rest of my breast. Sure nice to have all these responses from all you great folks. Everyone’s different perspective gives me more insight to this stupid disease.

  • SuQu31
    SuQu31 Member Posts: 73

    Hi, SKG,

    My reconstruction was prolonged but not due to any one issue. I was in no rush and then my mother had some health issues and subsequently passed away. It was a difficult, emotional time and I also wanted to spend the summer doing lake, beach and other activities that I could not do if healing from surgery. I did not like tissue expanders, but they did not bother me like they do some people.

    I do not know about ER- and grade 1, but I would definitely get some answers from your doctor. I do not know if different areas in the DCIS might grade out differently? But I would ask.

    Please let us know what you learn and what you decide

  • Yes, different areas of DCIS can be different grades. I had two large areas of DCIS. Most of it was grade 3 but some small areas were grade 2.


  • skg64
    skg64 Member Posts: 8

    Hi Beesie, did they fine your Microinvasion before your BMX on biopsy or after? Thanks S

  • My microinvasion was found during my excisional biopsy.

    I had two large areas of calcs. Stereotactic biopsy found ADH. As usual with ADH, an excisional (i.e. surgical) biopsy was recommended to see if anything more serious was lurking. My surgeon was almost apologetic about recommending the surgery because he didn't think anything other than ADH would be found. Turned out that both areas contained lots of grade 3 DCIS, plus there was one microinvasion of IDC. And there were no clear surgical margins anywhere around either area of removed breast tissue. An MRI confirmed that there appeared to be lots more in there, which led to the mastectomy - not my choice at all, I would have preferred to have a lumpectomy but it just wasn't medically feasible. The MX found more DCIS in both areas, some grade 3 but some grade 2. No more microinvasions. Not wanting the MX, I had a UMX, not a BMX. The second MX came with my second diagnosis 13 years later. With the second diagnosis I could have opted for a lumpectomy but after two diagnoses there was no way I was taking a chance on a third, recognizing that a small risk of a localized breast cancer remains even after a BMX, and a BMX does nothing to reduce the risk of a metastatic recurrence. That's my story.


  • skg64
    skg64 Member Posts: 8

    I finally met with a lovely plastic surgeon and decided on a lumpectomy with oncoplasty on right and left. I did not even know this was an option until she explained it to me. I will be left with two smaller boobs but happy as I did not personally want any type of implants. However she wants to remove sentinel nodes just to be safe? She had concerns being I presented with nipple discharge and that began over a year ago. Anyone else with DCIS and having this type of surgeryhad sentinel nodes checked without evidence at this point of invasion?

  • SKG, which doctor is recommending the SNB, the breast surgeon or the plastic surgeon? It's not a surgery that a plastic surgeon would usually do. And is an SNB only being recommended on the cancer side or both sides?

    After a lumpectomy for DCIS, an SNB can be performed as a second surgery if some invasive cancer is found during the first surgery. This is the current standard of care, to avoid the unnecessary removal of lymph nodes and the increased risk of lymphedema. I suppose that there could be some concern that the oncoplasty might shift around the breast tissue in such a way that a subsequent sentinel node injection of dye/isotopes might not travel to the sentinel nodes, but I would want this explained to me and I would think this could be overcome since it's probably not all that different than any SNB done after an initial excisional biopsy (as I had) or lumpectomy.

    Personally I would want a better explanation of why an SNB can't be done later if any invasive cancer is found.


  • skg64
    skg64 Member Posts: 8

    I personally did not mind the 2% risk (I was told by surgeon) of lymphedema, seemed low. If they came back positive I would know I had invasive lurking somewhere and would take more surgical action if needed. As it turned out I did not have sentinel nodes (two different surgeons opinions) checked but I wish I had. My second (re-excision) lumpectomy with oncoplasty showed Grade 2 DCIS. After BS removed DCIS and was done the PS removed a few large areas inferior when putting all back together and it showed 9/16 blocks of DCIS, it not marked or orientated as PS do not remove cancer. So I am pretty much screwed and back to figuring out what to do. Was seen by an oncologist who feels all ‘should’ be gone as I had lots of tissue removedand could do radiation. Both my surgeons think high chance more lurking and recommend mastectomy. Still healing up no desire for more surgery. Anyone ever had such bizarre thing?


  • rah2464
    rah2464 Member Posts: 1,192

    Boy Skg64 that is complicated. Sounds like you had additional areas of DCIS that were unknown and only showed up in final pathology. Given the complexity I think a good move to take your time and get a second opinion on what to do next - surgery or radiation. So sorry things have worked out this way for you. Glad at least no invasive component found.