Double mastectomy 2 days ago for bilateral cancer

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Arya44
Arya44 Member Posts: 54
edited March 2019 in IDC (Invasive Ductal Carcinoma)

I was diagnosed with IDC (2.8 cm) on left side and shortly before planned left sided mastectomy oncologist investigated suspicious area on mammogram on r side which couldn't determine if cancerous in time before planned surgery, so made last minute decision to have bilateral mastectomy with expanders. Post surgery was told there was in fact cancer on r side. Has anyone experienced this? I have concerns about prognosis-is this a metastasis? It's exactly same location as original tumour on other side.

Too early for me to know oncology details.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited March 2019

    Bilateral cancer does not mean metastasis. It's uncommon but not terribly so. Synchronous invasive bc amounts to around 3% of all cases, and invasive on one side with DCIS on the other is a bit more common.

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  • Yaniza
    Yaniza Member Posts: 140
    edited March 2019

    In 2016 I opted for a double mastectomy and didn't find out until the pathology report came back that I had a small mass on the "supposedly" okay side.

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  • Yaniza
    Yaniza Member Posts: 140
    edited March 2019

    I should perhaps also mention that I had ILC diagnosed on the right side and although both sides were investigated to the nth degree, there was nothing found on the left side until after the surgery and the path lab had time to what they do.

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  • Arya44
    Arya44 Member Posts: 54
    edited March 2019

    Hi Yaniza,

    Was the cancer on the left side the same type as the other side? Did they say it is not a metastasis? I am waiting for the results for mine and I find it curious that it's in the exact same location on the opposite breast as the original tumour-both at '6 o'clock' location.

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited March 2019

    I had bilateral cancer, found during my initial testing. We knew going in that my right side was triple negative and my left side was er+/pr +, her2-. What we didn't know was that I actually had 5 different types of cancer, spread across 7 tumors. Lucky me. As my breast surgeon put it, I win at cancer bingo. Totally not what I wanted to hear.

    Even with all the tumors, as well as a single micromet is one sentinel node, I was never considered anything but stage 1B.

    I hope everything works out in the best possible way for you. Good luck.

    Trish



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  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited March 2019

    I had bilateral breast cancer. DCIS one side and on opposite side an "area" that looked the same as the other. It was biopsied as lobular neoplasia before my double mx- but final pathology revealed a small moderate grade IDC. Bilateral breast cancer is fairly uncommon but typically related to hereditary cancers. It is not a cancer spread, but a complete different cancer...

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  • Arya44
    Arya44 Member Posts: 54
    edited March 2019

    Tryshlia...What a rare situation...Is this genetic? random? Wow! Glad that your prognosis was good despite that!

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited March 2019

    If that was addressed to me, snowflake22, it was completely random. No breast cancer anywhere on either side of my family. Genetic testing came back negative as well. Just lucky, I guess.😏

    Trish

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  • Arya44
    Arya44 Member Posts: 54
    edited March 2019

    Peacetoal....I think this sounds similar to my situation although don't know much yet. I do wonder why 2 different cancers would pop up at the same time in the same region in one's life but I guess that could be hereditary or just 'luck'.

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  • Yaniza
    Yaniza Member Posts: 140
    edited March 2019

    hi snowflake, I don't know if it was the same type of cancer on my left side as was diagnosed on my right.

    I opted for a bilateral mastectomy because I could avoid radiation if I went that route.

    I guess I just always assumed that the same body, having gone through the same life, with the same exposure to the same toxins would probably go right ahead and try to do the same thing on the left hand side. I couldn't live with the stress so I chose the double mastectomy. I have an appointment with my surgical oncologist in May so I will ask him the details of the pathology report.

    Just a reminder... that I had a thorough examination of the left breast, biopsies and so forth. It wasn't until the final pathology report came back that my surgical oncologist said, " surprisingly there was a small mass in the left breast". So, totally unexpected by everyone but me.

    Yaniza

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  • Arya44
    Arya44 Member Posts: 54
    edited March 2019

    Thanks for all your helpful responses. I am recovering well from my mastectomies and won't know for another 2 weeks all the final results of my pathology and lymph node analysis, but the ps mentioned after surgery that the lymph nodes looked 'healthy', and that we will know when all the results are in 'if' I'll need chemo and/or radiation. I previously thought that chemo was a given, but now am hoping after double mastectomy if clear lymph nodes if that means I may not need chemo. Is this how it works?

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  • Yaniza
    Yaniza Member Posts: 140
    edited March 2019

    Hi Snowflake,

    I'm very glad to hear that your lymph nodes are clear and that you are recovering well.

    My first surgery was a lumpectomy after which I was told since my lymph nodes were clear that I would only need radiation. When I opted to have a bilateral mastectomy I wasn't required to do the radiation, so I haven't had either, (chemo or radiation).

    Five years of tamoxifen was suggested but I did some research and decided against it.

    I was diagnosed in March of 2016 with invasive lobular carcinoma in the right breast. I just went through my paperwork and I guess I don't have a copy of the final pathology report after the bilateral mastectomy but as I mentioned before I have an appointment in May and I am curious to ask exactly what type was found on the left hand side.

    Yaniza


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  • Arya44
    Arya44 Member Posts: 54
    edited March 2019

    Hi Yaniza,

    Glad to hear you didn't require the chemo or radiation, and that opting out of tamaxofin was the right decision for you.

    I'm not 100% sure yet if lymph nodes are fully clear but that immediately after surgery surgeon reported they 'looked' good, but I think they still have to look at them under microscope or something to know definitively?

    It sounds like from your case my question is answered-if the nodes turn out to be clear then I probably am done...no more treatment?!

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  • Yaniza
    Yaniza Member Posts: 140
    edited March 2019

    Snowflake,

    We were diagnosed with different types of cancer. Mine is infiltrating lobular carcinoma which is apparently more likely to be bilateral.(I just looked it up.)

    Surgeons seem to get some feedback in real time during surgery. That must be how they know when to stop removing lymph nodes. I have a friend whose surgeon removed over 20 and stopped, never finding a clear node. She of course had chemo and radiation. She is doing very well after 2 years.

    Sounds like your surgeon is pretty confident that your nodes are clear. Mine was too... right after surgery.

    Yaniza

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  • Ladyofthelake
    Ladyofthelake Member Posts: 45
    edited March 2019

    Hi Snowflake.

    If your lymph nodes do indeed come back negative, then I think that means you will not need radiation. At least that's the reason they gave me for not needing it after a BMX. As far as chemo goes, it's an entirely different ball game unfortunately. Your breast surgeon will hopefully send off for an Oncotype test of the actual tumor. When the results come back, it will give you a score between 0-100 called the recurrence score. Your oncologist will then use this score to determine if chemotherapy will be a benefit or not for preventing a return of your cancer. The lower the score, the less agressive the cancer will be, and will be less likely to return, so there's no benefit to putting your body through chemo. My Oncotype score was 9, so chemo was determined to give me less than a 1% advantage.

    Here's the website which will give a better explanation: https://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/about-the-test

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  • Arya44
    Arya44 Member Posts: 54
    edited March 2019

    LadyoftheLake,

    Thank you for this explanation, it is very helpful having some understanding of how this works while I wait for the results of the surgery. I did not know that chemo was dictated by oncotype score, which I'll find out probably among other things this week when I meet oncology surgeon for first time since surgery.

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