Anyone else have 6cm plus of DCIS?

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BWH5
BWH5 Member Posts: 56

DX 11/30/18

DCIS two places. Combined approx 6.6 x 6.1 x 4.4

.7 cm from nipple

My BS says this is a large area and a lumpectomy may not be possible.

And if a masectomy is needed I probably would not be a candidate for nipple sparing mx.

Anyone have DCIS this large? What surgery did you have?

I am concerned that there may be IDC not found on the biopsIes due to the large size ofc the DCIS. I have not had a chance to ask my BS yet as I just thought of this after reading these boards.

Any advice is appreciated.

Thanks

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Comments

  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2019

    I had a 8cm x 6cm x 3cm area removed in 2016 but had a lumpectomy. Yes there is a shark bite out of that side but I don't think about it much. When my RO asked me if I was thinking about plastic surgery on the other side I said no of course not. It's really not that big a deal. So sorry about the location of yours.

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    Ingerp,

    Thank you for the reply. I really appreciate it.

    Where was your located? My is 9 to 10:00 area Did you have to have a rexcision or were margins clear?

    Thanks

  • MCBaker
    MCBaker Member Posts: 1,555
    edited January 2019

    Yes, much larger; 10.5 cm was the largest dimension. By the time the MRI revealed that, they told me that a lumpectomy was not an option. This was OK, because from the first moment, my reaction was to chop it off. Statistically speaking, the larger DCIS is, the more likely there will be an invasive component, no matter how small. I honestly don't know how they can inspect every millimeter and find everything in such a large mass. I may have been lucky they found it. I ought to call the lab and see how they do it. Most of mine was the upper right quadrant of my right breast.

    Will be praying for good decisions for you and a long life.l

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    MCBaker. Thank you for the reply.

    When they did the MX did they find invasive cancer as well?

    I have not had an MRI. They have never mentioned one. I wonder why? I hope that I don't need one though.

    Thank you for the prayers.

  • MCBaker
    MCBaker Member Posts: 1,555
    edited January 2019

    yes. They found 3mm. Like a needle in a haystack!

  • AMLMom
    AMLMom Member Posts: 102
    edited January 2019

    I am in a similar situation. First spot initially thought to be 1 cm. Grade 3 comedo necrosis. MRI picked up another 7.5 cm. I also have another area of calcifications behind the nipple.

    They will biopsy the most posterior part and the area behind the nipple tomorrow via MRI. I’m very concerned about there being hidden invasive, even if a lumpectomy is an option. I am also not sure if nipple sparing will be an option. I am following your post carefully. It would be good to know how many women had invasive found after their original DCIS diagnosis


  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    AMLMom. Thank you for the reply. Sorry you are going through this too.

    I agree. It would be helpful to learn how many found invasive or larger areas after surgery with DCIS.

    I never had an MRI. They never even mentioned one. Maybe because I have grade 2? Not sure.

    Good luck and let's keep one another posted.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    It's hard to believe the sizes. How is it still "in situ" when it has gotten that big?

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    Santabarbar.

    From what I understand it is because it is within the ducts so it grows along the ducts in a linear pattern.

  • AMLMom
    AMLMom Member Posts: 102
    edited January 2019

    BWH5 - I will keep you posted and hope you so the same. Perhaps you should ask for an MRI? I didn’t ask. It was recommended because of my age (45) and because my breasts are dense. I’m very happy that I had it done. Best wishes

  • jo6359
    jo6359 Member Posts: 2,279
    edited January 2019

    My sister had DCIS 7+ cm. She had a lumpectomy and radiation. She had clean margins when the tumor was removed. She is doing great.

  • Walden1
    Walden1 Member Posts: 202
    edited January 2019

    Hi, I had two tumours (mixed IDC and DCIS) close together which were suspected to be surrounded by DCIS (based on imaging) totaling about 6 cm of disease. I was told I needed a mastectomy and nipple sparing wasn’t an option. In the end I chose to go ahead with mastectomy without reconstruction.

    After surgery it was confirmed that one of the tumours was almost entirely DCIS and the other was moe mixed. No comments on pathology about the extent of the DCIS beyond the tumours. If you have larger breasts it is sometimes possible to do a lumpectomy combined with a reduction rather than a full mastectomy. I’m doing fine after my mastectomy but often wish a lumpectomy with reduction would have been possible given I wasn’t interested in reconstruction. Benefit of the mastectomy is I got great margins, and that gives m a little extra piece of mind.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2019

    BWH--my large area of DCIS was on the outer lower side of my left breast--low enough that I really don't notice it when I look down. I did need a re-excision that time. I read back then that it's very common--happens in 25-40% of lumpectomies. My BS said DCIS is "squirrelly"--you can't see it or feel it, so surgeons have a hard time figuring out where to stop. This time around (other side), I specifically told him to "go big." It was a much smaller area anyway but given the big chunk out of my left side, I didn't care much about how much he took out of the right side. I did not need a re-excision this time around.

  • Dizzybee
    Dizzybee Member Posts: 142
    edited January 2019

    I had 5cm of DCIS , I had a lumpectomy and breast reduction, originally the surgeon said if I didn't get clear margins it would have to be a mastectomy. But when it came to it, he said he'd try again as the margin was clear but too close. And the margin shave was successful. I was very afraid they would find some amount of invasion, they warned me it was quite likely as it was high grade comedo-type. But thankfully it was all in situ.

    I also had two reductions to the other side for symmetry, I had to wear a partial prosthetic for a year as radiotherapy and two excision left a very big size difference. But finally the cosmetic outcome is fine, and I'm really happy with the results of my lift and reduction.

  • LAstar
    LAstar Member Posts: 1,574
    edited January 2019

    I had 7cm, no IDC. I tried 2 LX's but couldn't get clear margins. I had BMX due to some suspicious spots on the contralateral side that turned out to be nothing. No rads, no AIs.

    These are grueling decisions! Best wishes.

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    Dizzybee. I am glad you are happy with the result. I hope I will be too. My BS is not sure she can do a lumpectomy due to location and size but said she is willing to try. But she too said if it does not work it will need to be a Mastectomy. I do not want a masectomy.

    Thanks for the reply.

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    LAstar. Thank you for the reply. I really appreciate the time everyone takes to reply.

    It is greuling. I have spent endless hours researching and thinking. I have lost so much sleep that it is ridiculous. I still have not come to a decision as to stay in the study and do nothing or have the surgery. I don't know what to do.

  • jo6359
    jo6359 Member Posts: 2,279
    edited January 2019

    BWH5- so many things which are cancer-related fits into a protocol. We tend to forget the cases which aren't black and white. Good luck with your decision making. Keep us posted.

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    AMLMom. How did things go today? Hope you got the news you were looking for.

    Jo6359. Thanks. I will keep all posted.

  • AMLMom
    AMLMom Member Posts: 102
    edited January 2019

    Hi Jo6359, thank you so much for reaching out. I have had 3 unsuccessful attempts to biopsy the large area. The first time they tried, it was with ultrasound, but the tissue was too dense and they couldn't see the area. The second time they tried to biopsy via MRI, and I was told something was wrong with the MRI machine and there was a big black strip through the pictures. I had the repeat MRI yesterday and apparently the breast was too compressed in the machine, so the contrast was unable to reach the breast. No enhancement even though 7.5cm of additional enhancement showed up 3 weeks ago. I was so frustrated with yet another fail, but the radiologist (very senior doctor) saw something in the images that caught her eye even without the enhancement and she marked it and immediately biopsied it under ultrasound with a rush for results. It came back today as invasive ductal carcinoma with some dcis. I really, really hope that you get an MRI and that you have a better outcome <3.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    AMLmom, I'm sorry. What a terrible arduous process to go through just to get more bad news.

    I hope the slog ahead goes as well as possible. Sending hugs!

  • AMLMom
    AMLMom Member Posts: 102
    edited January 2019

    Thank you!! I really needed that virtual hug today. <3

  • LAstar
    LAstar Member Posts: 1,574
    edited January 2019

    AMLMom, so sorry to hear about your frustrating experiences and diagnosis. Best wishes on the next steps.

  • Berniceb4
    Berniceb4 Member Posts: 7
    edited January 2019

    amlmom. I was same as you. Very large DCIS. Then mri. They didn’t tell me about idc but they saw it on mri. Confirmed when I had mx. I was told no choice but mx with all the DCIS. Also no radiation as I had mx. Something to think about. My idc was 1 cm and I also had diep reconstruction immediately. I didn’t need chemo as my oncotype was 22 and I am 53. Very happy with my outcome. Also I had skin sparing but lost nipple. Getting reconstruction of that on Jan 28. Had my initial surgery on June 4 201

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    I really appreciate all the replies. I am still trying to decide how to proceed.

    Thanks

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    AMLMom. How are you doing? I am sorry about the procedures you had to endure abd the test results.

    Have you decided on surgery?

    All the best to you.

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    My Update.

    My doctors are scheduling my lumpectomy with oncoplastic reconstruction. I should know by the end of the week what day.

    I am still enrolled in the Comet Study but will be in the arm where patients undergo surgery and treatment. After much debate, research and a lot of reading I decided 6.9 cm of DCIS was too large for me to feel comfortable doing a watch and wait approach. We have five children and my husband was diagnosed five months before me with CLL leukemia. There is no cure for him. So I cannot take the risk of this turning into something worse in the future.

    The idea of a lumpectomy with possible masectomy makes me uncomfortable. Being under for four plus hours worries me. I know I will be fine but it is just the thought of it.

    But I am kind of relieved that I am no longer consumed with wondering if I made the right decision.

  • LAstar
    LAstar Member Posts: 1,574
    edited January 2019

    BWH5, I'm glad to hear that you made your treatment decision. It does feel so good to have a plan. I was very anxious about the anesthesia, but by the time the surgery date arrived I was so glad to see that anesthesiologist -- let's do this! My BMX and Stage 1 SGAP took 11 hours. It took a while to shake off the anesthesia (incentive spirometers help a lot), but really it was just a nap to me. I had 7cm of high-grade DCIS and no IDC was found, but it was extensive enough that my care team thought it was imperative to remove it. There is a great deal of relief when you wake up and realize that it is GONE. I'm sorry to hear about your husband's diagnosis. It sounds like you will have no trouble staying busy until your surgery date. Best wishes on all the steps ahead!

  • BWH5
    BWH5 Member Posts: 56
    edited January 2019

    Thanks for the encouraging words LAStar.

    11 hours. Wow!!

    Yes. I will be busy. I hope to have the house all cleaned beforehand. We have five children ages 12 to 19. So I cannot imagine how it will look after my recovery. Haha

  • Reikion
    Reikion Member Posts: 50
    edited January 2019

    Hi BWH5,

    I had oncoplastic surgery too - a lumpectomy (left) with a reduction on the right side in 2016. My idc was only about 1 cm (just below the nipple) but they took out over 13 cms of DCIS (somewhere between 5 o'clock and 2 o'clock). I went from a DD to a C.

    It was one surgery about 5 hours long - breast surgeon for the first 30 min or so and then the plastic surgeon. Plastic surgeon took out additional margins after breast surgeon. The surgery went well with clear margins and I hope the same for you.

    I was considering just a lumpectomy but the oncoplastic reduction was suggested by the breast surgeon on the tumor board (surgeon, oncologist and radiologist). I am very happy with the results.

    Wishing you the best,

    Reikion

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