Feels too easy

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Mom2fourplusmore
Mom2fourplusmore Member Posts: 183
edited September 2016 in Stage I Breast Cancer

I have been diagnosed as stage 1. I have 4 seperate lesions. One is IDC, another is ILC and IDC, and the last 2 are ILC. I went to a second MO yesterday. This one is considered to be the best in the area. He said they don't worry about how many and they determine the stage based on the largest one. He also said they don't treat my situation any different then someone who only has 1. He explained that what is most important is that they all are ER +. It doesn't matter that some are grade 1 and some are grade 2. He tells me he wouldn't have even worried about a bone scan or the OncoDX because my lymph nodes were clear. He said there's no reason to believe I will have any problem at all and my BMX will be all I need except for the Tamoxifen. Then he said that I will be seen in 3 months and then every 6 months at that point and I will not have any more testing. No MRI or mammograms. From here on out I will only get tested if I have symptoms. I'm thinking that's nuts. Absolutely nuts. I found the first one myself and my GYN didn't think it was anything at all. The second one was with a MRI and the last two they didn't find until the BMX. So I see this as them saying until it's gone too far then we will worry and treat you. Anyone else get the same type of answer from the Drs

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  • inks
    inks Member Posts: 746
    edited August 2016

    I had 18 tumors and I got the same talk. However the hospital that I had radiation at did upstage me because of the overall tumor load. You should talk to a radiation onc since mine told me that with multifocal and multicentric you need radiation even after mastectomy. I saw two rad oncs and they both agreed. And yes it is mindblowing that there will be no tests or scans after breast cancer just waiting for symptoms. Some places however will do scans with ILC since it is so hard to detect. I never had a bone scan and I am stage IIb or IIIa. I was told I could not have OncoDX because hey would have to test all tumors and that would be too expensive. But some women do get it with multifocal tumors but they test only one. Some women even pay for the testing themselves.

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  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited August 2016

    18....I am soooo sorry. I feel like I'm whining now. I can't even imagine what you must have been thinking when they told you. That's crazy. And then for them to not stage appropriately seems like they just want to minimize the situation. My Drs won't even send me to a RO. They say my case is way too minimal. I guess it is compared to so many other cases.

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  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited August 2016

    oh and just a question do you have any idea how I get my diagnosis to show up under my posts? I filled them all out but they don't seem to show for some reason. Thank

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2016

    I think if you adjust the privacy on them, they'll show.

    I would push hard for the oncotype or mammoprint. It is generally the standard. You want to make sure these are as low risk as they are assuming them to be. Even if they do not test all 4, test at least one. I agree with an RO consult. Good thought!

    I had multiple tumors my second time. I remember reading that the standard of care is to base treatment on the largest tumor. I also recall reading that many experts disagree because they feel, like one of your MOs, that it underestimates tumor load. It is hard being in that situation, but hopefully you can get them to do mammoprint or oncotype.

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  • smilethrupain
    smilethrupain Member Posts: 160
    edited September 2016

    I was told no RADS because the SNLB came clean with 0 nodes and because I had MX.

    but oncotype DX was the deciding factor in choosing chemo before tamoxifen

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  • Yaniza
    Yaniza Member Posts: 140
    edited September 2016

    I had a lumpectomy and four nodes removed . The lumpectomy had clear margins and the nodes were clear . I opted for a bilateral mastectomy with reconstruction . My cancer was estrogen receptive . When the pathology report came back from the mastectomies my margins we're clear in both breasts but the breast that did not have a tumor was found to have a mass of precancerous cells . Because the margins were so good in that breast also I don't have any follow-up treatment... in other words, no radiation, no chemo and tamoxifen or something like it was my choice and I did the research and chose not to do it.

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  • inks
    inks Member Posts: 746
    edited September 2016

    Show your doctors this study and ask for a consult with radiation oncologist. http://www.redjournal.org/article/S0360-3016(12)01428-9/fulltext#sec3

    Conclusions

    MF/MC disease is significantly associated with at least double the risk of local recurrence, even after accounting for type of surgery and omission of RT or hormonal therapy. This study suggests that such patients may benefit from additional therapy to improve LC and thus perhaps should be considered for RT after mastectomy. Further study is required.

    Here is a study that finds poorer outcome with multifocal multicentric tumors http://bmcsurg.biomedcentral.com/articles/10.1186/1471-2482-15-1

    Conclusions

    Our results indicate that MF/MC cancers have a negative impact on prognosis and are related to higher loregional and distant relapse independently from the type of surgery performed. Adjuvant therapies did not modify the poorer outcome, but in patients receiving adjuvant anthacyclines, the differences with unicentric tumors were reduced. Our data support the hypothesis that MF/MC tumors may have a worse biological behavior and that the presence of multiple foci should be considered in planning adjuvant treatments.

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