DCIS After Stage 2 Breast Cancer

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Momtonicholas
Momtonicholas Member Posts: 3

Hello, I am new to this community and this is my first post.  I'm a 14 year Stage 2 invasive ductal carcinoma survivor.  I had 2 lumpectomies, chemotherapy, radiation, and 5 years of tamoxifen.  That was age 32 and I prayed it was over.  Well, this week I was again diagnosed.  After a mammogram and biopsy, I received the call that my second breast (non affected the first time) has DCIS.  I have calls out to everyone, and I'm spinning.  Has anyone had this?  I understand it is a new primary breast cancer, and not a recurrence.  But with my history, can I anticipate chemo again?  I'm hoping the answer is no.  I can honestly handle surgeries, and even radiation, but I don't think I can do that twice.  And I now have a son and it breaks my heart to have to tell an 8 year old about this.  Any words of wisdom here, please?  Thank you in advance.  Just devastated.

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  • Annette47
    Annette47 Member Posts: 957
    edited March 2013

    Sorry this has happened!  If your diagnosis is "pure" DCIS, or even DCIS with a microvinvasion, chemo would not be recommended - chemo is to treat any cancer cells which may have left the breast, and DCIS by definition is contained within the breasts (actually it is contained in the ducts, so hasn't spread to the rest of the breast yet).   Even in cases such as mine where there is a very small amount of invasive cancer associated with the DCIS, as long as it is small and lymph nodes are clear, chemo is rarely if ever recommended because the risks associated with the chemo are thought to outweigh the chances that it has spread outside the breast.

    So, the odds are in your favor that chemo will not be recommended or necessary!    Standard of care for DCIS is usually (depending on the size) lumpectomy with radiation or mastectomy.  In cases where the DCIS is close to the chest wall, radiation might be recommended even after a mastectomy, but my understanding is it is not usually needed.

    What I told my kids who were 12 and 9 when I was first diagnosed (at the time I only knew about the DCIS) was that this wasn't  the kind of cancer that can kill you, but that since it could eventually turn into that, we needed to treat it now.   They were fine with that explanation and didn't seem to worry too much.   I never bothered explaining the microinvasion to them once it was discovered as it didn't change the treatment plan or prognosis.

    Hope this helps a little ....

  • Momtonicholas
    Momtonicholas Member Posts: 3
    edited March 2013

    Thank you, I do appreciate your time in responding and it has helped.

  • Lisa_Lock
    Lisa_Lock Member Posts: 16
    edited March 2013

    Dear Momtonicholas,

    I am really sorry you are having to face this again. I was dignosed with DCIS less than six months ago, and my "journey" has been based on my family history, the grade of my tumor, and I relied heavily on a second and third opinion from a breast care specialist, and many other factors. You will have alot of decisions to make to help rest and control your fears. One thing I pushed for myself was an Oncotype DX test. It can be done for DCIS. It was a test they can do to determine reoccurance percentages in the next 10 years on the cancer. This helped me with my decision process. My score was a 54 and so I chose to have a double mastectomy and reconstruction. I did not have any cancer in my other breast- but I have read plenty that tells me if there is another reoccurrence, it is usually in the same sight or the other breast. I do not want to be going through this again when I have my last child graduate, or I am planning my daughters wedding some day. I am sure you know that once you have radiation on something, you can never have radiation on that ONE part again. They do not use chemo on DCIS normally, but they will want to do a lumpectomy, and recommend radiation and if your er/pr tests are positive ( mine were both negative) then some sort of hormone receptive treatment like tamoxifen. You will have to decide if you want to go that route and if you will handle the fears of "if" there will be another reoccurence at a later time. There may never ever be another reoccurrence though. You have to choose what is best for you. I chose to have a mastectomy after two other doctors did recommend it, and also have reconstruction. I told my kids, (20,18, 11) that I want to be here a long time, and this is going to be a hard few months, but I want to have a future with them and their children if I can control that. iam not sure if anyone has ever regretted doing something aggressive to ensure help themselves. Really do some research as to how to choose your treatment. You are young to be dealing with cancer two times already. My doctor told me I was young haha (45) and though they cannot prove it aside from the few gene tests out there, it is normally a genetic thing when people have aggressive cancers that are not considered older.. Look into the Oncotypedx test and ask your oncologist to order it. It is expensive, and my insurance company would not cover it at first, but the Oncotype score company called and said that they would help me deal with the insurance company if I gave them the go ahead with the test. I am really glad I did. It helped me personally make a decision on my mastectomy. I wish you the best and hope you get some solid answers to help with your decision. Make sure you look at articles on this site, and do not go to too many web pages that give undocumented information. 

    Praying for peace as you make your decisions,

    Lisa

  • Momtonicholas
    Momtonicholas Member Posts: 3
    edited March 2013

    You have been a tremendous help! This board is a prayer come true. I will keep you posted and best to you too.

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited March 2013

    Hello, Momtonicholas - so sorry you have to go through this again. My story is pretty much like yours, add another 4 years to the previous cancer (mine were 18 years apart) and I thought I was in smooth sailing. My first was aggressive, IDC and fast growing, 2.5 cm (the options to say how big tumor was do not have decimals, so I rounded down).



    This was the first regular mammo I went to that I was not nervous - the one they found the DCIS with microinvasion through stereotactic biopsy a year ago last Feb.



    For me, I understood that I wouldn't have to do either chemo or rads if I had a mastectomy, make that a double. So I opted for that - the left side, where the new cancer was found, had not had radiation and I wasn't sure I liked the idea of radiating it with it being so close to my heart, that I opted even more for the bmx.



    I opted also for natural reconstruction (which is a subject all it's own) for various reasons that worked best for me. I'm a year out from my bmx, with recon and working on getting everything all worked out - but after it is all worked out these breasts will be mine forever and will gain when I gain and lose when I lose.



    I went to my oncologist last week and he made an appointment for me to see him again in 9 months. I have not been told to take chemo, do rads, or take any other cancer specific anything. I am on Vitamin D for sure but not from this visit.



    Pretty different than last time when I had IDC and lumpetomy, lymph node disection, chemo, and radiation!!!! AND then had to go back to the oncologist every 3 months, then after a year every 6 months, then again another year and every year after that one!



    I was told by several PS and drs that if I just did a lumpectomy again it would almost be a mx because of the calcifications were in a pretty large area, and because it wasn't a lump as was my first they would have to take out more tissue to make sure. And, I would also have to do radiation which is their standard of course for lumpectomy with DCIS.



    Hope this helps??? It certainly isn't what you wanted, but certainly doable!

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited March 2013

    And, AMEN to Lisa's prayer!!!

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