Long road, now DCIS found, can someone ease my fears?

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Silverpullet
Silverpullet Member Posts: 28
edited January 2017 in DCIS (Ductal Carcinoma In Situ)

I have been on several discussions and will try to sum up my history. I am 43 and I discovered I carried the BRCA2 gene this year. Extreme maternal family history of Breast cancers and Reproductive. I decided to have a preventative double mastectomy with reconstruction and nipple sparing and a total hysterectomy at the same time. I had this done on Oct 27th. They had started the tissue expanders in with 200 fill on each side the day of surgery. When I went back for my 2 week post op with the Breast Surgeon, the Pathology report showed I had DCIS just under the left nipple area, 6mm. Because I had a total double mastectomy with nipple sparing, they immediately scheduled me for another surgery on Monday to remove the nipple. I opted to have both removed. Hindsight, I did not realize it would be an issue, or I would have had the nipples removed at the same time as the rest. But I digress. My doctor told me that I am very lucky that I had all this done now, and I agree. So, they said there would be no need for any future treatment. I understand that there is always still a cancer risk, and they said it was very low, 2%. The problem is, I am a worrier, and this is essentially a cancer diagnosis. My brain is on overload, thinking I am going to die now from cancer. I realize that I am being extremely paranoid.

Because I have no breast tissue left, and this was found just under the nipple on the biopsy within the last 2 weeks, and now I am having both nipples removed, do I have a pretty good prognosis? I mean, I think having everything done prior to having found this bit and nothing else was found anywhere, I should not have to feel so doomed? I am freaking out, even though I have read that with either surgery or radiation, long term survival is excellent.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited November 2016

    Hi Silverpullet!

    To answer your question, can someone ease your fears, yes. Ask for a referral to a Medical Oncologist to review your case, and see what, if anything more might be suggested. This is the person who can best ease your fears. Make an appointment, then start making a list of your questions. For example, you might want to ask the MO if you should have a meeting with a Radiation Oncologist.

    If there is nothing more recommended--which might well be the case, ask for how you should be monitored going forward. You are BRCA2+, so there may be recommendations which a MO will make to your PCP about your care in the future.

    For those who have only a DCIS diagnosis and a MX, radiation is typically not recommended. If you had had only a LX, radiation would probably have been suggested.

    What does the pathology report say about the ER/PR status of your DCIS? If you don't have a copy or aren't sure when looking at the report you have, be sure to ask at your MO referral.

    HTH,

    LisaAlissa


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  • VegGal
    VegGal Member Posts: 507
    edited November 2016

    Hello,

    I was diagnosed with a 6 mm mass of DCIS in January and had a BMX in March. All of my doctors say that is all that is needed. They say the hormone blocking meds would cause more issues than they might help. Two percent is pretty good!

    It's very typical to feel paranoid. I am still that way even this far out from surgery. Some days are better than others and there's no going back to the pre-cancer days so I just let the feelings bbe felt and continue with my days.

    Continued good health to you!

    C

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  • Annette47
    Annette47 Member Posts: 957
    edited November 2016

    If all they found was DCIS without any sign of an invasive component then yes, your prognosis is excellent ... close to 100%.

    Yes, it is a cancer diagnosis, but cancer that is contained in the breast cannot kill you. To do that, it must mutate from DCIS and become invasive, then spread to other parts of the body. If yours was caught before it could make that leap, so remained DCIS, then once it has been removed it should no longer pose any problem.

    Now, because you are BRCA +, there is a higher chance than average that you might contract a new primary cancer, but with so little remaining breast tissue, that is extremely unlikely, as is a recurrence especially given that with only 6mm of DCIS located near the nipple the mastectomy should have provided wide margins.

    So all in all, you should remain vigilant, perform self-exams and do whatever checks your doctor recommends, as the chance is not zero, but really, you should try not to worry because it is pretty darn close.

    For what it’s worth, it is very normal to worry no matter the diagnosis, but you will find that the further out you go (it will be 4 years for me next week), the less and less you will think about it.

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  • Silverpullet
    Silverpullet Member Posts: 28
    edited November 2016

    thank you guys for your replies. I had an oncologist in the beginning that is who did the genetic testing. I have a standing appointment next year with him already. I do have a copy of the pathology report but do not know what anything means really. What is a ER/PR status?

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  • Junebug57
    Junebug57 Member Posts: 10
    edited November 2016

    Estrogen/progesterone positive or negative. If either are positive, then you may be able to do hormone therapy but it may not be necessary either. My cancer was estrogen positive and I am menopausal so I started Arimidex after chemo/surgery/radiation for the next five years. Younger people may take tamoxifen.

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  • LAstar
    LAstar Member Posts: 1,574
    edited November 2016

    Your prognosis is excellent. I found it difficult to find an oncologist to follow me. One said, "Just let me know if your bones start to hurt" which was no consolation. I finally found an onc that felt that monitoring is important, so I see her annually and have MRIs every two years. March will be my 5-year diagnosis anniversary, and it's nice to have someone that has been keeping an eye on me. Best wishes on moving ahead. You can feel completely okay with feeling shell-shocked and worried for a while, but slowly life will find the new normal. xo!

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  • 2008andbeyond
    2008andbeyond Member Posts: 3
    edited November 2016

    Happiness is a good beginning, middle, and end. Or at least two of the three.

    Be your own navigator. I got no follow up plan from 3 doctors. Found out at 6 years out that my critical time for reoccurrence had past. Lucky me! Seriously I asked tough questions and got the cured speech. Call me if you need me.

    I did get two MRI's - one in first year and one at year 7. Why do I feel like I was falling through the cracks? Because I was.

    I got yearly gynecologist exams but that was it. It should make the medical community stand up and take notice. Just because you are DCIS doesn't make you get no future treatment plan outlined.

    Be strong and loud and relentless in seeking what you need. Did my doctors really think I needed nothing more?




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  • Silverpullet
    Silverpullet Member Posts: 28
    edited January 2017

    I was surprised to see this active again. I have been through all the expanding process, and a week from Monday, (2 days away) I will be getting my implants put in. I have been fortunate to have excellent doctors and an excellent plastic surgeon. Oh, and excellent insurance and husband!! I cannot wait to get these expanders out, and into more comfortable models.


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