I hope I’m in the right forum.

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Swami7774
Swami7774 Member Posts: 24
edited June 2021 in Stage IV/Metastatic Breast Cancer ONLY

Summation: in July 2016 my wife was diagnosed with Stage 1/2 breast cancer. She had a lumpectomy and 4 chemo sessions and everything seemed okay…until this past March, when she noticed(ONE day after her yearly oncologist meeting) nodes popping up on her clavicle. This was diagnosed as metastatic breast cancer. A CT scan confirmed nodes and masses elsewhere. She immediately began weekly Taxol treatments. She has had 11, with the 12th(and we thought final) this coming Friday.

In early April she had a brain MRI to see what was causing a weird sensation(not pain, just strange feeling). It located a lesion on the lower left part of her skull. The lesion was radiated 5 times in 5 days. She then had a follow up brain MRI. We got the results today. The radiologist called it “mixed.” The lesion that was radiated is much smaller and appears to be almost dead. But about 3 other spots that were noticed before have grown. They’re in the skull, not the brain(although one of them is “close”). He also said the spots are “not troublesome” except for the one that’s close to the space between the brain and skull.

He will coordinate with my wife’s oncologist to determine the next step(s).

I don’t really have a question here; I just feel like I’ve been kicked by a mule and have nowhere to turn. I’m sorry if I’m adding my own problems without providing any insights or solutions. I just need to get this all out.

WHY IS THIS HAPPENING???

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  • moth
    moth Member Posts: 4,800
    edited June 2021

    Hi Swami, I'm sorry you find yourself here. It's just a random shitshow. We don't really understand yet why some of us progress to metastasis and others do not ... there are some hints in the genomic profiles of some tumors and I think scientists are getting closer to understanding what drives certain cancers to mutate and metastasize...but for now, I chalk it up to random bad luck.

    So she has mets to the brain and somewhere else too? there is a brain mets thread as well as threads for mets to other areas... There's also an active weekly taxol thread for stage 4. Drop into any of them with any questions or just to vent. We get it.


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  • Swami7774
    Swami7774 Member Posts: 24
    edited June 2021

    No, nothing in the brain. It’s in the skull.

    The other areas were/are along her clavicle and in her chest, near the lungs. Her last torso CT scan a few weeks ago looked “really good” according to the oncologist. Apparently the Taxol is working somewhat on the torso tumors but not so much on the skull ones.

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  • moth
    moth Member Posts: 4,800
    edited June 2021

    ah, so bone mets forum is what you want then https://community.breastcancer.org/forum/8/topics/...

    & I'm guessing the others are in lymph nodes in the thoracic area.

    It is frustrating but not unusual to have response in one area but not another. Sometimes it turns out the tumors are slightly different when you do the biopsies.

    Is her cancer hormone positive or not? Because that changes treatment options a lot .

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  • Swami7774
    Swami7774 Member Posts: 24
    edited June 2021

    Her biopsy showed she’s hormone positive but barely(6). The oncologist is looking to immunotherapy as the next step.

    Her first time around, 5 years ago, her tumor was well over the hormone positive threshold. She was put on Letrozole. A lot of good THAT did

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2021

    Swami,

    First , let me say I’m sorry that your wife finds herself in this situation. This early period is very tough, especially emotionally. It is hard to get ones head around but none, absolutely none, of the medications or treatments that early stage bc patients get come with guarantees. Actually, neither do meds or treatments at stage IV. We just try something and when it fails we move on to the next something. So please don’t blame letrozole. As moth said it seems to be very random. Heck, 13 months after a clear mammogram I was not only dx’ed with bc but shortly after my surgery a bone met was found by accident! Random indeed but that was 10 years ago.

    Please try not to get ahead of yourselves as you move through the initial phase of dealing with mbc. Stay away from worst case or catastrophic scenarios because it is unlikely that many things you imagine might happen. We also have a forum for families/caregivers. You may find it helpful to chat with other spouses and loved of those with mbc. Take care

    https://community.breastcancer.org/forum/144


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