No MO recommended and a couple of other questions!

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Bookpusher
Bookpusher Member Posts: 75

I am scheduled to see a surgeon at a highly respected breast care center affiliated with a large university 4 days from now. I am going to repost my biopsy report here, because I am struggling with my decision on MX/BMX. I have a couple of questions listed below, but to familiarize those who are willing to offer opinions, here's my report first:

Diagnosis:

High Grade DCIS with comedonecrosis.

Intraductal papilloma. Microcalcifications identified.

ER (low positive, 2%); PR (negative). The samples each contain multiple irregular fragments of yellow to hemorrhagic soft tissue ranging from minute fragments to 2.0 cm in length by 0.2 cm in diameter.


MICROSCOPIC DESCRIPTION:

Histologic sections demonstrate cylindrical fragments of breast tissue.

Focally the ducts are expanded with atypical cells and central comedonecrosis, consistent with DCIS. No definitive invasive carcinoma isseen. There is also a small intraductal papilloma.

Microcalcifications are seen adjacent to the DCIS.

I was referred to a breast care center about 3 hrs away. They called to schedule me and the gal told me the recommended doctors for me to see were: a surgeon, a radiologist, and a plastic surgeon. I questioned her about seeing a medical oncologist, but she said that was not on my recommended list of physicians to see. The center was able to pull up all my records via mychart. I think maybe a PA or nurse scans your biopsy report and determines who you should see before they ever call you back. I assumed even with a DCIS diagnosis, I'd see an oncologist.

Please bear with me, and help me with these questions.

  1. Reading my biopsy report is it acceptable not to see a medical oncologist at this stage? I am certain I want a mastectomy, no reconstruction. (debating on BMX) I assume a SNB will be done on the affected breast.
  2. Are there any further tests I can ask for when I see surgeon to help me decide between Mx/BMX?
  3. Am I being too aggressive in giving very serious thought to a BMX? Some of the reasons for considering BMX: I have dense breast, mother had breast cancer, (diagnosed around 60), want to avoid rads if I can (I know mastectomy is no guarantee), fear of a new breast tumor in saggy, healthy breast, afraid I'll be upgraded from DCIS to IDC after surgery. Given I am 70 I am also thinking getting the BMX while I am relatively healthy and can recuperate easier might be a good idea. Do I make sense here or am I being overly paranoid? Such a hard deciision. I was also thrown off by not talking to a medical oncologist upfront and wondered if any test prior to surgery could help me decide between Mx/BMX. I apologize for this long post.

Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2021

    Bookpusher,

    It's actually pretty common for those with DCIS or early stage invasive cancer to not see an MO until after surgery. I've had two diagnoses; I didn't see the MO until after surgery both times. Surgeons are responsible for surgery; ROs are responsible for radiation. MOs deal with everything else. For patients where it is clear the surgery will come first (which is certainly the case with DCIS), the role of the MO doesn't kick in until you have the final pathology, at which point the MO will make recommendations about any additional treatment that might be advisable.

    If you have not had a breast MRI, that would be the one imaging test that could help with the MX vs. BMX decision. Given that your mother had BC, genetic testing might be helpful too. That said, since only about 15% of breast cancers are caused by genetic mutations, since genetic breast cancers tend to present at a younger age and you are 70 (and your mother's diagnosis also being post-menopausal too), it's unlikely that your cancer is genetic.

    I can't comment on whether a BMX would be too aggressive. Only you can decide on that. For one person it would be, for someone else it wouldn't be. The factors driving these decisions are different for each of us, and we all assess risk differently.

  • Bookpusher
    Bookpusher Member Posts: 75
    edited July 2021

    Thank you so much, Beesie! May I please ask your opinion on this statement from my biopsy report :

    GROSS DESCRIPTION:

    Received in formalin labeled "right breast calcs/STB" is a circular clear plastic device with wells designated A-L. All wells contain tissue. Per the specimen container lid, the following wells are markedwith an 'X': wells D, I, and J. The wells each contain multiple irregular fragments of yellow to hemorrhagic soft tissue ranging from
    minute fragments to 2.0 cm in length by 0.2 cm in diameter. The specimen is entirely submitted as follows: "A1" - tissue from wells D and I; "A2" - tissue from well J; "A3" - tissue from wells A, B, and C;"A4" - tissue from wells E, F, and G; "A5" - tissue from wells H, K,and L.

    Can you interpret this gross description? I can’t make heads nor tails of it. Sounds like there might have been multiple 2.0 cm DCIS found in each of the different wells of specimen? I wish they had said how many were that big.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2021

    The gross description refers to the sample itself, not the pathological findings. It describes the biopsy tissue as it was received by the pathologist. It says nothing about what the pathologist found when he/she looked at the tissue under a microscope. So there is no indication as to how much DCIS was found - this describes the sample prior to it being cut apart and analyzed.

    Do you recall how many core needle samples were taken? It sound as though the largest core needle sample of tissue was 2cm in length and 0.2cm in diameter, and there were multiple smaller samples.


  • Bookpusher
    Bookpusher Member Posts: 75
    edited July 2021

    Beesie,

    I thought they told me they took 10 core samples at the biopsy. But when I count the “wells” described in the gross description I think it might have been 12.

    Again, thanks so much. What an asset you are to so many of us out here struggling to understand our diagnosis and treatment options. I go from MX to BMX about every other minute.

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited July 2021

    Bookpusher if it helps at all, my initial biopsy was DCIS, upgraded to IDC upon final pathology. I too had dense breasts and we got very lucky to catch my issue in time. However, now that MRI is being utilized more often to monitor those with denser breast tissue, might be much less of a concern. I decided on a double because of that imaging concern. If symmetry troubles you, speak with the PS about options ie, a lift on the remaining breast vs a BMX. Its just a lot to process and if you feel like you are not ready, speak with your surgical team. There is no reason you cannot push things back just a bit in order to make up your mind. I can remember, though, I didn't decide on a double until a week before the surgery. My PS told me she would book the OR with enough time to go either way. That really helped. Wishing you all the best.

  • Bookpusher
    Bookpusher Member Posts: 75
    edited July 2021

    Thanks for your comments, Rah2464. That is great they booked OR with enough time to go either way. That had to lessen your anxiety about deciding which way to go.

    I am concerned bc my DCIS is grade 3, with comedo neucrosis present. Makes me feel like my DCIS is exploding as I sit here typing. Been having call backs on this right breast for several years. So I wonder how long this has really been going on. I read where it takes 3 yrs for high grade DCIS to become invasive. Grade 3 is aggressive with high recurrence rate.

    Because my ER/PR has a negative status (actually 2% positive ER, but that is so low it is looked at as negative) I would not benefit from hormonal therapy. In essence, I'll have one less arrow in the quiver to fight this cancer. I think if IDC is found at final pathology they could only offer me chemo. Does this sound right?

    Saying all of this, I still don't know what I am going to do. I am a mess. Hopefully surgeon will tell me what he thinks I should do with the healthy breast. I know I'll opt for mastectomy in affected breast.

    I so appreciate your reply. If you have any other thoughts on my case, I'd love to have them. Trying to gather as much info as possible.

  • muska
    muska Member Posts: 1,195
    edited July 2021

    when you say “ healthy" breast - were there any micro-calcifications in the healthy breast? Any other issues? How frequently will that other breast require monitoring? What kind of monitoring? These are the questions you may ask the breast surgeon to help you with the dec

  • LivinLife
    LivinLife Member Posts: 1,332
    edited July 2021

    Thinking about you Bookpusher!!! This is a really difficult time - making a decision about type of surgery. I remember being totally focused only on mastectomy and it was only a few + days later I decided on BMX..... Floors me how quickly I made such a drastic change in view and was (and still am) completely comfortable with that. You will know when you reach a decision you truly are comfortable with.... you will know it in your gut, though it's important you're basing your decision in information....vs. emotion....

  • Bookpusher
    Bookpusher Member Posts: 75
    edited July 2021

    Muska, I am just assuming the other breast is healthy. I have never had a call back on it. But who really knows?

    LivinLife, thank you for your kind words. I am going to discuss my concerns with the surgeon. I am tempted to say take both, I want as much peace of mind as I can get. If I could take the hormonal meds, it might be different. That is really worrying me.


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