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Dcis high grade

Vivi1405 Member Posts: 2

About a month ago i did a mammogram and ultrasound that found a large area of my left breast had calcifications clustered, did a core biopsy with ultrasound guide and results came back DCIS high grade with comedo necrosis. Gen test came back negative so doctors recommended mastectomy of the left breast but since its a large area and the biopsy only tests that one piece he’s concerned. Oncologist said no radiation or chemo hopefully but id need two medications afterwards since the biopsy shows it is estrogen receptive .

This is all so new to me and my head is overwhelmed, I just started to do research and see that the medication has side effects and i also saw some women that decided to remove both breast either way but im not sure what their individual situation was.

Does someone have a similar experience or maybe can help me with information or sharing by your experience/thoughts?

Im not worried about cosmetics right now im basically worried about my risks short and long term and just want to get this thing out . Sorry for the long post, excuse any typos English is not my mother language and I’ve been extremely nervous its affecting how i function in my life i cry all the time because im so scared .


  • mfk
    mfk Member Posts: 35

    Hi - sorry to hear about your diagnosis, but glad you've come here for support. So is it the large area that driving the recommendation for the mastectomy?

  • Vivi1405
    Vivi1405 Member Posts: 2

    I believe so combined with the fact that i also have extremely dense breasts and some benign cysts. My Breast is small and the area is considered large most of the upper half . Dr explained that on the biopsy just a small part of the area is tested so they can’t completely know for sure anything else until a pathology report . But mri and other images confirm dcis .

  • tntnsd
    tntnsd Member Posts: 124

    Hi Vivi

    So so sorry that you have to go through this. The waiting, and the unknown at the beginning is really tough part.

    I had my mastectomy (left breast) around this time (roughly 2 month after mammogram/ultrasound and biopsy to confirm diagnosis). I chose mastectomy because the amount of DCIS, dense breast, and with the hope to avoid radiation (not all mastectomy can avoid radiation, but I was lucky that I didn’t have too, as final pathology has clear margins, no IDC at the end). Like you, I do not care much about cosmetics, so no reconstruction for me). I am on medication for 5 years now with ER positive. So far the I tolerate it alright, still have to monitor closely for any other side effects, but I learn to not to let that worry me constantly. One year later, I am feeling much much better.

    I know it is hard for you yo believe it will get better once you start your treatment, but it is true for most of us, who found ourselves on this path. If your worry interfere with your normal sleep, activities;, please do not hesitate to ask your doctor for some medication. Waiting is the hardest part (in my opinion), and Google too much info does not help much with anxiety.

    Wish you all the best

  • Vivi, if your final diagnosis after surgery is pure Stage 0 DCIS, then with a mastectomy, it will be entirely optional on whether or not you take anti-hormone therapy, either Tamoxifen or an AI (Aromatase Inhibitor). The value in taking these meds would be primarily as risk reduction for your remaining breast, since any of us diagnosed one time are higher risk to be diagnosed again.

    If your diagnosis is Stage 0 DCIS and you have a bilateral mastectomy (i.e. both breasts), these meds are not required and should not be recommended by your doctors. At that point your future risk, either for a recurrence or for a new primary breast cancer, will be lower than your risk of serious side effects from these meds. At least that's true in most cases. The two exceptions are if the patient is BRCA positive, and therefore still might have an 8%-10% breast cancer risk even after a bilateral mastectomy (because a small amount of breast tissue always remains) or if the surgical margins after the mastectomy are too close or positive, meaning that there might be a few DCIS cells left in the breast. In the second scenario, with close/positive surgical margins after a mastectomy, either radiation or anti-hormone therapy might be recommended. This is an unusual situation, however.

    The following discussion thread has more information about all of this:

    Topic: A layperson's guide to DCIS

  • buzzbomb
    buzzbomb Member Posts: 45

    Hi vivi, I was diagnosed back in December and will see my surgeon on Friday (we were leaving for Mexico when I got the news, hence the delay). I will post anything different I might learn fromthat appointment. At this time I have no idea of the size of my DCIS, and I have scoured my documents….I have no idea what will be recommended for me. All I know right now is DCIS grade 2, that could change.

    I am in Canada and I don’t know what differences in therapies there is between different countries. It’s interesting to read everyone’s paths.

    My thoughts are with you. Please don’t worry.

  • salamandra
    salamandra Member Posts: 725

    Hi Vivi,

    I hope you can get your doctor appointment soon and that they can clarify for you that DCIS will NOT kill you.

    Cancer can't kill you from the breast, it has to get out of the breast to do that. And the good news with DCIS is that by definition, it has not been able to escape the breast (as opposed to invasive cancer, where there is the possibility that some cells have escaped the breast and are too small to detect).

    That means that if you get a mastectomy with clear margins and confirmed DCIS, you are DONE with that cancer and can be confident that you are cured.

    There is still the risk that you could get a separate new instance of breast cancer. But that is not truly a new risk since everyone has that chance and the highest risk factor for breast cancer is simply being female.

    Wishing you an easy and full recovery!

  • vandercat
    vandercat Member Posts: 43

    Vivi - Welcome to the fray. I also have dense, lumpy, cysty breasts. Mammograms for years have shown calcifications and I've had at least four biopsies prior to the one that found my DCIS grade 2. My surgery was a week ago and I am now in the lacuna between excision and pathology report. My team will not make any decisions about radiation or AIs until after that.

    I hope you listen to the collective wisdom of this group. Salamandra is right: BC can't kill you.

  • Vandercat, just to clarify. Breast cancer can kill you. But not DCIS, at least not directly.

    Breast cancer confined to the breast is never fatal, because breasts aren't an organ that we need to survive. But if breast cancer cells spread (through the bloodstream or the lymphatic system) and move into the bones or liver or brain or some other vital organ, then the breast cancer is metastatic (Stage IV), and metastatic breast cancer cannot be cured and will eventually be terminal. DCIS cells are confined to the milk ducts and therefore are fully confined to the breast; this is why DCIS can not kill. But if DCIS is not adequated treated and some cells remain, these cells could evolve to become an invasive recurrence and an invasive recurrence has the potential to develop into a metastatic recurrence.

  • minustwo
    minustwo Member Posts: 13,000

    I had a bilateral mastectomy for DCIS. Wanted them both off although the diagnosis was specifically for one. I've been recalled for years. Glad that I chose that because they also discovered problems in the 'good' breast. No invasive components. No further treatment - HOWEVER- related to this statement:

    That means that if you get a mastectomy with clear margins and confirmed DCIS, you are DONE with that cancer and can be confident that you are cured.

    I had wide, clean margins confirmed DCIS. I did not keep my nipples just to get the best possible chances. All serial nodes were negative. I was confident I was "cured", as were my doctors. Two years later I was diagnosed with a local recurrence in a lymph node. Obviously a micro-met escaped before surgery. Not a new cancer - a local recurrence. All my docs were astounded - GYN, diagnostic radiologist, surgeon, plastic surgeon, medical oncologist. So please know, you are not CURED. You can be "NED" - no evidence of disease. But the word CURED is not applicable. Edited to agree with Beesie's statement below - you are likely DONE with this cancer.

    All that said, I have never regretted having a BMX to start. (edited to say - of course other than that I would be happier with 'real' breasts - but that was not an option)

  • MinusTwo, I beg to differ... just a bit. Smile

    I am of the belief that most people diagnosed with DCIS and many people diagnosed with invasive cancer are cured by their surgery and treatments. Any individual who never has a recurrence was successfully treated and therefore cured. The problem, as is often discussed on this site, is that there is no way to know if we've been cured by our treatment until we die of something else, never having had a recurrence. Until then, it might look like we've been cured but there is always a small possibility of a recurrence, even after a BMX and even after many years.

    So I would edit Salamandra's statement to say "That means that if you get a mastectomy with clear margins and confirmed DCIS, you are DONE with treatment for this cancer (except for the rare, 1%-2% chance of a recurrence) and can be very hopeful that you are cured."

    Of course, in addition to the possibility of a local recurrence, there is also the possibility of a new primary breast cancer. That happened to me. But that doesn't change the fact that so far, 16 years out, my treatment (surgery only, a MX) for my first DCIS-Mi diagnosis appears to have been successful and for now, and until proven otherwise, it appears that this first cancer was cured. My second diagnosis was unrelated to that first diagnosis. I'm only 3 years out from my second diagnosis, and although small, it was all IDC, not DCIS, so I'm a long way from feeling comfortable that I might be cured. But I'm still hopeful that the treatment for this second cancer was successful and I was cured. I'll let you know in 30 years when I'm 95, although I'll probably feel pretty confident about it in 20 years or so.

    The survival rate for pure DCIS is 97%-99. This means that the vast majority of patients are cured; even most patients who have an invasive recurrence survive, because they are successfully treated. Best I can guess from the data, the survival rate for all diagnoses of invasive breast cancer is somewhere in the range of 70%-75%. This means that most patients with invasive cancer are cured. The difficulty and challenge for us all is that course we can never know for sure if we've been cured, but for me it's very important mentally to know that the likelihood is high.

  • rah2464
    rah2464 Member Posts: 1,192

    Vivi - I as well had extremely dense breast tissue and my diagnosis at biopsy was DCIS on my left side. I chose to go the double mastectomy route hoping to avoid any additional treatments such as radiation (although I knew there was a chance that could happen anyway) or anti-hormonals. However I had a surprise component of IDC upon surgical resection, so no avoiding the anti hormonals for me. The hardest part is the ups and downs of receiving the information about your situation. You truly won't know it all until after surgery, and please be prepared for some things to change on you. Hopefully they won't, but they can. So try to focus on doing the things you need to do to keep you physically and mentally healthy. If you have anxiety or trouble sleeping, reach out to your doctors for that support. I am sorry you are having to join us here but there is a wealth of understanding, compassion, and knowledge that is shared on this site. Please let us know how things are going for you,

  • minustwo
    minustwo Member Posts: 13,000

    Beesie - Thanks for the clarification. "Until we die of something else." I am always so grateful for your detailed scientific based posts. I do understand that my experience is not the norm - and just 'my experience'. Personally I no longer look for that 'norm' or 'one size fits all'. Each one of us is unique and must make decisions about our specific disease & bodies after educating ourselves as much as possible.

    Vivi - our thoughts are with you as you make these difficult decisions.