Chest wall recurrence that had to have arm amputated

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DiV
DiV Member Posts: 231
edited January 2017 in Just Diagnosed With a Recurrence or Metastasis

I was just diagnosed with a chest wall recurrence. The only way to remove tumor is to amputate my arm. Scared to death, praying for the best.

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  • Outfield
    Outfield Member Posts: 1,109
    edited December 2016

    I don't even know how to respond, but I feel I have to. I am so sorry anyone has to go through this. I see you're in Cleveland, so you have access to some very good medical care there.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Thank you for replying. Yes have great medical care getting treatment at Cleveland Clinic.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    MammaRay I am getting treatment at the Cleveland Clinic downtown. I am so sorry that we are here and sending you prayers also. So many men and women are getting breast cancer these days it's unbelievable. Where are you getting treatment?

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited December 2016

    Div, I am so sorry what this beast we call cancer is doing to you. You will be in my heart

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  • xxyzed
    xxyzed Member Posts: 230
    edited December 2016

    That must be so scary for you. When I had my mastectomy and axillary lymph node clearance it turned out a lot more nodes were effected than the scans indicated with one of the lymph nodes wrapped around the nerve running down your arm. The surgeon said it took quite some time to untangle and was the likely cause of the tingling and pins and needles I had felt running down my arm but he was confident he got it all. I have been left with mild lymphedema but my arm otherwise works. Only time will tell if the treatment was effective on my cancer. Hopefully your specialists can effectively shrink with chemo or radiation before attempting to remove the tumour.
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  • Emily2008
    Emily2008 Member Posts: 605
    edited December 2016

    What?! I've never heard of that. I'm so sorry!

    Are they considering doing neo adjuvant chemo to shrink the tumor? Is amputation your only choice? Get some other opinions from other major centers: Sloan Kettering, Mayo, Dana Farber, etc.

    I'll be praying for you. Again, I'm so, so sorry.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Emmily 2008 Thank you to all that replied support really helps. I'm so sorry that all of us are here and send prayers and hugs to all. Oncologist tried neo adjuvant chemo and tumor didn't respond it grew. My team of doctors consulted with a lot of other doctors on my case and amputation is the only choice. Again, thanks for all the support!

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2016

    div, I am so very sorry that you have to endure this treatment. Praying for your healing.

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

    I am so sorry. That totally and completely sucks. There's no 2 ways about it. My hope that is you will learn to function well with one arm, and find creative strategies to do all of the things we do with 2 and take for granted. You'll need creativity, patience, and resilience, but life is worth fighting for. Please keep us posted. Sorry you have to endure this crap in such a harsh way.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    DiV I am so glad you opened a new thread specific to your situation! I told you it would reach out to new ladies for support. We are all holding you in our thoughts and prayers, so please keep us posted about your journey.

    Much love, sweetie!

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited December 2016

    DiV, I too am in Cleveland. My care has all been at various UH facilities. I am so sorry to hear of you current prognosis! Are you connected to any local bc support groups? The Gathering Place is the only one I am familiar with and truly is wonderful. If you haven't had the chance to look into it, when you have time, they have wonderful resources and support of all kinds. Prayers for steady hand of the surgeon, peace of mind for you and a steady recovery back to health!

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Thank you Barbe 1958. Saw my oncologist and radiologist today. Doctors changed treatment plan. Start radiation January 5th and Start chemo (cisplatine and etoposide) January 9th. Will have cisplatine on day 1, days 2-5 will have etoposide then cisplatine again on day 8. Will have radiation for 35 treatments then the same chemo treatment again after radiation. Doctors (me included) hope it shrinks tumor some and gives tumor smooth edges so they get it all. Doctors said i will still have to have arm amputated in order to eradicate disease. I'm scared but also stubborn guess that the Taurus in me. Will be hard i know but like i said i'm stubborn.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    I'm a Taurus too, so I get it!! I am stubborn but flexible when I need to be. Sounds like a solid plan in place. Have a Happy Holiday, even if your heart is heavy, let the season lift a bit of your spirit.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Happy Holidays to all of you as well! Forgot to mention i get my pet scan tomorrow. Keeping fingers crossed that cancer hasn't spread. If cancer has spread doctor's won't do the surgery. I have faith cancer is contained to chest wall.

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

    I think stubborn is good! Keep us posted. Thinking of you

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Kbeee Happy Holidays! Yes stubborn is good cause i found you fight harder to achieve goals in life. Had pet scan today. Good news cancer contained and tumor shrunk a little compared to scan from 9/30/16 was happy to hear that.

    Wishing everyone here Happy Holidays and Happy New Year!

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  • Lucy55
    Lucy55 Member Posts: 3,044
    edited December 2016

    Div ..So sorry you are going through all this ..But it is wonderful news that the cancer is contained !!!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    DiV thank you for letting us know the good news. Can we attribute some of that to the power of prayer?

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Barbe 1958 Yes prayers are powerful! All the well wishes too! I see you had radiation treatment what can i expect? I know they will do chest and on the side up neck.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    kbeee Merry Christmas! You've been through alot too! How are you doing through all of this?

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    DiV I had chest wall, left axilla (armpit) up the left side of my neck and up through my back. It was tiring going every day and got boring as it only took minutes to do when I got in but I had to drive 90 minutes to get there. Kind of anticlimactic really. It felt more like a job than treatment. Drive there, find a parking spot, weave the way to the cancer Centre, register, change, wait to be called, set up machine and zap! Then do it all backwards. It doesn't really feel like anything is being done until you start to get a tan.


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  • xxyzed
    xxyzed Member Posts: 230
    edited December 2016
    I've just finished radiation as well. It is really boring going every day. You lie on a table and they line up numbers against the tattoos they give you. Tiny pinpricks that you can barely see even when you're looking for them. A machine buzzes for a few seconds a few times and then rotates to buzz at you from another direction. There are no flashing lights or anything other than the noise to tell you it's going. I was buzzed from four directions like barbe1958. My skin held up well and is very dark on my side boob and a little swollen under my scar line. They used a bolus to protect my heart which is just a bit of plastic placed over the scar line each day. I have been told it will worsen for the next two weeks before it improves and that it may feel dry, peel, itch or become an open sore and to call them for advice if this happens. My underarm is a bit sore and my lymphedema in my arm is a bit achy but overall so much better than I was expecting.
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  • DiV
    DiV Member Posts: 231
    edited December 2016

    xxyzed Hi! Merry Christmas! Thanks for responding. I start radiation January 5 and start chemo January 9. The first 6 days of chemo I will have to take iv cart with me to get my radiation. After the 6 days of chemo it's just radiation then chemo again after radiation then surgery. I hate losing my hair again. I just got my hair grown out to below my shoulders now i'm going to lose it again. On the bright side will be alot easier just getting up and putting a hat on.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Barbe 1958 wow you had to drive quite a ways for treatment. I'm lucky i only have to drive 10 minutes and my parents and boyfriend will be with me. Your treatment sounds like what i am going to get. I got the tatoo's thursday but haven't even looked at them . I got 1 in middle of chest and 1 on each side. Radiologist has me scheduled for 35 treatments. Merry Christmas!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    My husband drove me to my first treatment and as we got out of the car he noticed he had a text from work. He was laid off!! What a stressful time that was for us.....it's always nice to have someone with you. A couple of times, especially near the beginning I just slept as he took me back to work. I wasn't as tired as time went on. It's amazing what your body will get used to.

    I did have him rub an approved cream into my rads area immediately after rads - right in the change room and again at night. Ask what you are allowed to use. I used Glaxol Base which isn't available in the US apparently.

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Yes my Dr. gave me a list of approved products to use and a list of bath products. I know what you mean about being laid off. 15 years ago my ex and i worked at same place and company clised the doors on Christmas eve. Is your husband working now?

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  • amarantha
    amarantha Member Posts: 457
    edited December 2016

    Oh holy s*** so terrible. I am o sorry you have to go through this. I am not a religious person, but will be "praying" for you in my way. I am glad they are trying new chemo for now. This is just suck a freaking beast.


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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2016

    DiV, it took him from March to August before he could get part-time work! He's 66 so it's a bit harder due to his age. Did you both find work? How sad to close your doors Christmas Eve....you are affecting so many lives...

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  • DiV
    DiV Member Posts: 231
    edited December 2016

    Yes it is a beast. So many people are getting breast cancer.

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  • xxyzed
    xxyzed Member Posts: 230
    edited December 2016

    It is disheartening losing your hair. It's like a calling card to the world saying sick person here. Especially when it has taken so long to grow. My hair is just starting to show signs of coming back. I'm looking forward to being able to blend into society again

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