DCIS, Lumpectomy, Conflicted

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Jae_Cali
Jae_Cali Member Posts: 2
edited February 2018 in Just Diagnosed

I'm so happy to have found this community. I love reading the posts and reading all the support!

I too was recently diagnosed with DCIS. I had a routine mammogram in November, was called back in the following week for a repeat mammogram with ultrasound. The following week I was sent for a stereotactic biopsy. I was officially told I had DCIS the day before Thanksgiving.

It has been scary and overwhelming to say the least. I feel like there is pressure to "make a decision" even though at times I do not know what it should be. I do not have breast cancer history in my family, so this diagnosis came as a shock!

I started reading about DCIS and options… Since it is Stage 0, I opted for a lumpectomy, which seemed to be the reasonable choice. Surgery was preformed January 11th. There was a delay getting the pathology report (two weeks). My surgeon called to let me know that my case needed to be presented to the Tumor Board (the board meets next week). Due to the location of the DCIS, my surgeon was not able to get the enough margins, as it was against the chest bone. I will find out next week what the verdict is and may potentially have to have surgery again. I have met with the oncologist (and honestly, I really didn't know what to ask since I had not reviewed my pathology results before the appointment). I will be meeting with the RadOnc next week to discuss radiation therapy. However, depending on the outcome of the discussions at the Tumor Board, therapy might be delayed.

I was finally able to read my pathology report (yesterday) and after reading my results, high nuclear grade DCIS, I'm concerned about the potential for reoccurring cancer. I feel conflicted about what to do and I'm now questioning if a mastectomy is a better option given the grade.

I would love to hear your experiences and thoughts about this. Scared and conflicted!

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  • Dustien
    Dustien Member Posts: 56
    edited February 2018

    Jae_Cali,

    I'm afraid I don't know enough to help, as I'm newly diagnosed and have only gotten as far as MRI.  Hopefully I'll have surgery next week.  I, too, am going to go for the breast conservation surgery along with Radiation.  I'd not heard of a Tumor Board, but it sounds like a good move, that they will be a team on your side working for the best outcome for you.  

    I'll tell you though, I totally understand why you would be scared and conflicted.  You would think with Stage 0 cancer, you'd have the Lumpectomy and it would all be over... easy peasy!  Shucks!  It's 0 for heaven's sake!  But noooo, it has to go before a "board"...and you see the diagnosis....  What I want to know is who in the heck gave it the name Nuclear!?  In anyone's mind nothing good comes from the word Nuclear, right?  They give you hope saying it's 0 cancer, then crush your hopes in the same breath by saying it's Nuclear...and not only Nuclear, but high grade at that?  As in High Grade Plutonium??  YOU'VE A RIGHT TO BE VERY CONFUSED... I am confused for you.  It had to be men who named it...  Oh, don't get me started. 

    I really came in just to welcome you to the boards and I hope someone pops in to help you make some sense of all this.  Hugs!  Everyone is here for us, thank goodness.  I'm glad I found this community too.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited February 2018

    Hi there JaiCali. This is a very common dilemma sadly and a very personal decision. In general, lumpectomy + radiation reduces your recurrence risk just as much as masectomy, as you have probably read. But you will want to hear what the tumor board recommends, read your pathology report, ask for an individual risk assessment, and then go from there. I would also advise taking the time to get a second opinion at another hospital since it is DCIS and you should not feel rushed.

    Someone who has been in your situation will probably be around soon to give you the benefit of their experience. I had IDC and ILC, and happily chose a lumpectomy and radiation.

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  • MagicalBean
    MagicalBean Member Posts: 362
    edited February 2018

    Hi Jae_Cali. I was DX'd in 2014. High grade DCIS with >95% ER and PR +. I did a lumpectomy followed by rads and am now 3+ years on Tamoxifen. For me, this has all been uneventful so far.

    The thought of recurrence is always just under the surface, and will probably be with me for life, but I have faith that the Tamoxifen will keep any repeat at bay.

    I remember my breast surgeon telling me that I will die from something someday but it certainly won't be from DCIS.

    I wish you the best as you go through your treatments, whatever they may be. Please check in often.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2018

    Hi Jae Cali, and welcome to BCO. You may find this page helpful, and read more about the Oncotype DX DCIS test here as well, that could be helpful. DCIS Treatment. Hang in there!

    Here is an excerpt from this page: The Oncotype DX DCIS test is a genomic test that can help you and your doctor make decisions about treatments after surgery for DCIS. The Oncotype DX DCIS test analyzes the activity of a group of genes that can help doctors figure out a woman's risk of DCIS coming back and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after lumpectomy.

    The Oncotype DX DCIS test results assign a Recurrence Score -- a number between 0 and 100 -- to the DCIS.

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2018

    Jae, usually for women with DCIS, rads is recommended after a lumpectomy but is not necessary after a mastectomy. The exception however is when there are close surgical margins at the chest wall.

    So, two questions you should ask your doctor when you hear the recommendations of the Tumor Board:

    1) With the DCIS being right up against the chest wall, it is possible or evenly likely that rads will be recommended even if you opt to have a MX?

    2) In the event that the answer to the first question is “No, rads likely won't be recommended after a MX", then which option provides a lower recurrence risk, a MX without rads or a LX (including possibly a re-excision surgery) with rads? Although intuitively it seems logical that the bigger surgery, the MX, would provide a lower recurrence risk, it could be that with DCIS cells right near the chest wall, rads might provide more risk reduction benefit than surgery (a MX) alone.

    Dustien, nuclear grade has nothing to do with plutonium or being 'nuclear'. “Nuclear grade" is an assessment of the size and shape of the nucleus of the tumor cells, as compared to normal cells.

    Mods, not sure why you would include a reference to the Oncotype DX for DCIS test. This test helps women with a lower risk DCIS diagnosis determine if radiation is required after a lumpectomy. In Jae's case, with high grade DCIS and close chest wall margins, there is no question that rads will be necessary after a lumpectomy, and as I noted earlier in my post, rads might even be recommended after a MX.

    Edited for typos only.

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