Stage 4 breast cancer

irish5
irish5 Member Posts: 2
in Breast Cancer #1
I would like to hear from anyone who has had metatastic breast cancer spread to the scalp. I am undergoing treatment now and find it difficult to find anyone else to talk with about this. irish5

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    #2
    Scalp Mets
    This board for the most part deals with stages 0-3. There are a lot of women with stage IV too. However it is not exclusively stage IV though there could be someone with mets to the scalp that will answer your questions concerning your situation.

    There is a webpage that is for only stage IV kept by a man whose wife began the web page back in 2000. There wasn't any back then that dealt only with metastasis or stage IV.

    http:www.bcmets.org is the web page

    I put in the search engine "scalp mets" this is what came up. Not all of them deal with scalp mets, but just skip over those post.

    http://www.bcmets.org/archive/search?q=scalp+mets&sort=date


    Another web site that deals with only stage IV is:

    http://community.breastcancer.org/forum/8

    They also have a search place on the upper right side of the page.


    Another is: http://www.inspire.com/groups/advanced-breast-cancer/new/active/

    It's harder to do a search on that one than the other two. It's more discussion and their search engine isn't as good as bcmets.org.

    Mine are in the lungs and pleura, so I am not able to help you.

    Best Wishes to you,

    Doris
  • kbettimac
    kbettimac Member Posts: 1
    #3
    Scalp mets
    In March 2011, I discovered that my breast cancer (originally diagnosed and treated in 2010) had returned with lung mets. I began treatment with Faslodex and during the treatment I found a bump on my scalp. I thought maybe it was a bug bite but it didn't itch and it also didn't go away after a month. I went to a dermatologist unaffiliated with the medical group handling my cancer. She thought it was a cyst and said it was common. After the cyst was excised and sent to a pathology lab, it turned out to be a breast cancer. Now I'm in a clinical trial with Avastin and Ixabepilone which has been working for my breast cancer and lung mets, but I've noticed that my scalp mets has expanded. Sometimes it itches and sometimes it hurts.

    My oncology team has a bad habit of forgetting about the scalp mets since it was discovered outside of their institution so I recently had a CT Scan done, although my oncologist thought it wouldn't reveal much. At this point I just want an institutional record of the scalp mets. Since I'm in a clinical trial, what my oncologist proposed for treatment-radiation -- isn't an option. The trial will only permit surgical removal, so I'll have to wait for another scan to see if the treatment has continued to work. In the meantime, I'm seeing another oncologist at a different institution for a second opinion.

    You've probably discovered that there's not much research on the subject except as associated with cold caps. I'm continuing to look for research out there and will be happy to share my findings with you.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #4
    kbettimac said:

    Scalp mets
    In March 2011, I discovered that my breast cancer (originally diagnosed and treated in 2010) had returned with lung mets. I began treatment with Faslodex and during the treatment I found a bump on my scalp. I thought maybe it was a bug bite but it didn't itch and it also didn't go away after a month. I went to a dermatologist unaffiliated with the medical group handling my cancer. She thought it was a cyst and said it was common. After the cyst was excised and sent to a pathology lab, it turned out to be a breast cancer. Now I'm in a clinical trial with Avastin and Ixabepilone which has been working for my breast cancer and lung mets, but I've noticed that my scalp mets has expanded. Sometimes it itches and sometimes it hurts.

    My oncology team has a bad habit of forgetting about the scalp mets since it was discovered outside of their institution so I recently had a CT Scan done, although my oncologist thought it wouldn't reveal much. At this point I just want an institutional record of the scalp mets. Since I'm in a clinical trial, what my oncologist proposed for treatment-radiation -- isn't an option. The trial will only permit surgical removal, so I'll have to wait for another scan to see if the treatment has continued to work. In the meantime, I'm seeing another oncologist at a different institution for a second opinion.

    You've probably discovered that there's not much research on the subject except as associated with cold caps. I'm continuing to look for research out there and will be happy to share my findings with you.

    I didn't know about this
    I didn't know about this kbettimac. I am so sorry that you have to deal with this again.


    Sending prayers and positive thoughts.


    Sue :)
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #5
    Ritzy said:

    I didn't know about this
    I didn't know about this kbettimac. I am so sorry that you have to deal with this again.


    Sending prayers and positive thoughts.


    Sue :)

    My friend was dx
    My friend and classmate's cancer was Stage IV. It came back 12 years later. She lived another year.She put up a good fight for a year then passed away this past January. Going to her visitation was hard.At the time only 1 1/2 years since my dx.She was strong through the treatment but her condition became worse. That's when it's HARD.

    Lynn Smith
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #6
    Lynn Smith said:

    My friend was dx
    My friend and classmate's cancer was Stage IV. It came back 12 years later. She lived another year.She put up a good fight for a year then passed away this past January. Going to her visitation was hard.At the time only 1 1/2 years since my dx.She was strong through the treatment but her condition became worse. That's when it's HARD.

    Lynn Smith

    bumping .. topic
    up!
  • mzl0ve
    mzl0ve Member Posts: 62
    #7
    scalp mets
    I also have stage 4 with scalp mets, I had one spot on the right side of my head over my ear, only way i knew it was there was the Pet Scan, at this point im dancing with Ned, we have been dancing for almost 3 month.
  • moossee99
    moossee99 Member Posts: 1
    #8
    breast cancer on scalp
    I was diagnosed with stage 4 cancer l2 years ago, given 3 years to live and was on Tamoxifen for 5 years, then one year later it was back and I was on Femara for two years but quit because of the pain from the Femara and it has re-curred again. All three times it has been a small bump or lesion on my head, near the top, starting out similar to an ingrown hair resultling in changing colors and twice it was "punched" out by a dermatologist and this time the derm did not think it was cancerous at all and just sliced off the top of the lesion and sent it to lab. Funny enough, in the last 6 weeks since the lab the spot has smoothed out completely, as in the punched out times. this week we are discussing what treatment I will undergo this time. Has anyone had radiation on their head for this?
  • Duffles
    Duffles Member Posts: 1
    edited January 2020 #9
    Scalp mets

    I had spinal surgery, fusion, and rads. now just started Ibrance with Letrozole. Has anyone has success with this treatment?

  • Nikki718
    Nikki718 Member Posts: 2 Member
    #10
    https://csn.cancer.org/discussion/226428/stage-4-breast-cancer

    Hi, I was diagnosed with stage 4 breast cancer and at the time I was diagnosed, I had a bump on my scalp that was biopsied as the breast cancer. I started Verzenio and Lupron right away and the bump on my head went away. A year and a half later, the Verzenio stopped working and I started taking pill-form of chemo (xeloda). I was on xeloda 5 mos and now I notice the bump on my head has returned and is wider than it was before. I see my oncologist tomorrow for the bump. I’ll remind her that the bump went away with Verzenio, seemingly returned after I stopped Verzenio, and see what she says. Im starting piqray in a week or so, which is apparenly similar to Verzenio, so Im curious to see if the bump goes away with piqray. I’ll keep u posted. Be well all.

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