Cancer has spread/Metastasized - Gigi3

Oh No Associated with Breast Cancer. Posted on June 16, 2019 View this journey (3 Experiences)

Mammogram was negative. 2 months later I was diagnosed with MBC because I kept bugging the doctor about my puffy arm with pain. Had breast cancer in 1986 with chemo, which I stopped after 6 months when it was affecting circulation in my legs. Good until 2002. Had uterine cancer, hysterectomy, and needed no other treatment. Good until this bout. Due to my complaints, finally had a Chest CT. Also had a lesion on the side of my breast that looked like a nasty bug bite. It was biopsied in dermatologist office 1hour before CT scan so I got all results at same time.

11 Comments
  • beachbum5817's Avatar
    beachbum5817

    I am so sorry to hear this. Have they given you a treatment plan? Let us know how you are doing when you feel up to it. Take care.

    4 months ago
  • TinaLeigh's Avatar
    TinaLeigh

    I also keep telling my oncologist about my puffy arm and pain. He looks at me like I’m crazy, I think he thinks it is all in my head. It is clearly not in my head if you look at my swollen arm, which is always puffy and the pain is excruciating.

    4 months ago
  • msndrstood's Avatar
    msndrstood

    TinaLeigh, did you have any lymph nodes removed on the affected arm side? I had 16 removed and developed Lymphedema within weeks of surgery. Just a thought. Good luck to you and Gigi3.

    4 months ago
  • TinaLeigh's Avatar
    TinaLeigh

    Gigi3, I am so very sorry. Praying for you. Look forward to hearing updates from you on how you are doing.

    msndrstood, yes I did have 6 lymph nodes removed which 3 of them were positive. I was given a sleeve to wear but it does not help still continue to have swelling and severe pain. My swelling is all over not just in my one arm. Both arms, hands, fingers, feet , toes and my ankles and knees are always swollen and painful. I did develop a blood clot in my arm which was told it was from tamoxifen. Sure wish one of my physician would be concerned with all this swelling and pain and help me. I’m going to just keep telling them that something is not right!

    4 months ago
  • beachbum5817's Avatar
    beachbum5817

    @TinaLeigh, I am so sorry that no one is listening to you either. I was lucky that when I was getting physical therapy to regain movement in my arms after a double mastectomy, the therapist noticed it. I just thought that my rings and watch were tight because I had gained weight. I had never known anyone who had lymphedema. She made all the difference in the world, and touch wood, it has not returned. Maybe you can get one of your doctors to send you for therapy. Take care.

    4 months ago
  • msndrstood's Avatar
    msndrstood

    TinaLeigh, have you had a cardiac work up done? Swelling all over can be related to decreased cardiac output. I have a standing order for a cardiac echo every 3 months to watch for any changes in output because I was on herceptin which affects the heart, so far so good. I don't know what chemotherapy you've had, I see that you had tamoxifen which usually doesn't have the effect you've mentioned but it can increase the risk for blood clots. If you have other health issues with your kidneys etc, it might be worth a cardiac consult just to make sure your cardiac output is normal. Just a thought. I wish you well.

    4 months ago
  • TinaLeigh's Avatar
    TinaLeigh

    Thank you for responses. I just saw the cardiologist last week, he came in and said none of my problems are heart related and sent me on my way after less than 5 minutes.

    4 months ago
  • msndrstood's Avatar
    msndrstood

    Wow. You do need some answers. And some new doctors. I went through that kind of stuff when I was being diagnosed with MS. I don't know how many times I was told it was in my head (it really was!). Until I ended up in the hospital for 5 days with optic neuritis, then suddenly I had a diagnosis. Good luck and please let us know how things are going and keep fighting until someone listens and actually does something to help you.

    4 months ago
  • Gigi3's Avatar
    Gigi3

    TinaLeigh,
    I, too, had lymph nodes removed with a few positive. I babied that arm over 30 years and it was skinnier than the other. 2 years ago I had back surgery, during which my BP went haywire. They probably threw the cuff on that arm to keep taking it, since the other arm had an IV and arterial line. After surgery I had paralysis on that whole side of my body, head to toe, lasting about 1/2 hour. No one could figure it out and told my hubby it was an anxiety attack. Took two years to find out I have mast cell activation syndrome, and it was an allergic reaction to the anesthesia. I actually have had this over 50 years, but was never diagnosed. Thanks to a friend with it and persistence, I now have a diagnosis and 3 doctors who finally believe it.

    3 months ago
  • Gigi3's Avatar
    Gigi3

    TinaLeigh,
    Forgot to say I took Tamoxifen for 8 1/2 years before they decided you only have to take it for 5 years. Thankfully, I did not have any side effects except weight gain.

    3 months ago
  • TinaLeigh's Avatar
    TinaLeigh

    I’m so sorry. so glad you got answers and have the drs attention now!

    3 months ago

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