Rare form of breast cancer.

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Cheriden
Cheriden Member Posts: 6
edited August 2014 in Just Diagnosed

I've been diagnosed with triple positive breast cancer. Spread to the lymph nodes under my arm and in my neck. The rare thing about it is there is no cancer in my breasts. All the mammograms I have had did not pick it up. It originated in the tissue bedside my breast under my arm. That is why it got away from us!

Is there anyone else out there with the same type of breast cancer? The doctors told me it happens in less than 1% of cases.

Starting chemo on Wednesday as there is no point in operating.

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  • wanda90804
    wanda90804 Member Posts: 1
    edited August 2013

    You and I are in the same boat. I have not breast cancer in my family and I was just diagnosed with triple positive breast cancer. The only reason that the doctors caught it was because I started having pain in my underarm that didn't go away back in April. After going through an ultrasound and biopsy they found a small tumor but also lymph node involvement. My surgeon was to do a lumpectomy as well as removal of the nodes in my underarm, but after my MRI they discovered that it had spread to my neck as well. Now I am waiting to see a second oncologist, I didn't like the first one I met. I go see the new doctor tomorrow. I will most likely be going through at least 18 weeks of chemo, then surgery, then radiation.

    Just like you, this came out of the blue. My husband and I are still in a state of shock, but we are hopeful.

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  • Cheriden
    Cheriden Member Posts: 6
    edited August 2013

    I am sorry, I know how shocking it can be. My mom was a breast cancer survivor so I've always been waiting for it. Had a mammogram every year, although all for not.

    I am happy we can chat about it though. They couldn't do surgery on me, probably never, because it is in the tissue beside my breast. I will be a chronic cancer patient. I think of it the same way diabetics have to cope with insulin shots. i love my oncologist, she is awesome which is very important. I start chemo on Wednesday. 6 treatments, one every 3 weeks, then herceptin for probably 1/12 years, radiation, then pills.

    Go buy the book Kicking Cancer's Ass by Dena Mendes. It gives hope, lots of it.

    I plan on kicking it's butt and I will be here for you too.

    My husband is a mess, I feel I have to be strong for him.

    We will live for years and it is better than getting hit by a bus! Also I'd rather it be me instead of my husband or kids.

    Hang in there kiddo, we can DO this.

    Take care Wanda.

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  • christina0001
    christina0001 Member Posts: 1,491
    edited August 2013

    Wow. I am triple positive as well but that is amazing that there is no tumor. Cancer is so sneaky. Good luck with the chemo and I encourage you to join the August 2013 chemo support thread. The thread for the month I started was invaluable to me, a huge help in getting through treatment. Are you doing TCH then? I did six rounds of it; it is not easy but it was very doable for me, and it was not nearly as bad as I feared. I did herceptin for a year and that was cake. You can do this! Good luck to you.

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  • Cheriden
    Cheriden Member Posts: 6
    edited August 2013

    Thank you Christina. I just found out my oncologist changed my chemo from TCH to just TH. I don't know why she changed it and I can't talk with her until Wednesday. Makes me wonder.....

    Congrats on your recovery, you are awesome!!

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  • msphil
    msphil Member Posts: 1,536
    edited August 2013

    hello sweetie, you and all of us are in my prayers, I didn,t have this kind of breast cancer But we are all in this together, come here and share and we will be hear to listen, come and vent also, we know what you are going thru been there, and for INSPIRATION, I am a 19 yr Survivor(Praise GOD) and I also wrote a book about my battle with disease and just when I found the man of my dreams, and making wedding plans. My book is called"The Healings Of Breast Cancer", A Physical And Spiritual Healings Of My Body And Soul, get it on Amazon.com and Barnes&Noble.com, it will Inspire Yoy.  msphil(idc, stage2,0/3 nodes, L mast, chemo:adriamycin,cytoxin, 5fu, rads and 5 yrs on tamoxifen) 

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  • Cheriden
    Cheriden Member Posts: 6
    edited January 2014

    Wanda, how are you doing and what kind of treatment did you decide to do?

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  • Cheriden
    Cheriden Member Posts: 6
    edited January 2014

    Hi Christina,  I have a question for you.  How did you cope with the radiation part of your treatment.

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  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    What type of cancer did they tell you it is?  Triple positive is only part of the DX. It means that the cancer 'feeds' off of estrogen, progestron and HER2.

    Many of us have had positive nodes/tissue under arm and they can be removed.  With Inflammatory BreasCancer it often does not show up on mammos or US as a 'lump'.    When my lymph node under arm enlarged, my mammo was less than.  Mths old and it had not shown anything strange.  Between 1% and 5% of all BC are IBC , I don't know the breakdown between TN, TP, ER/PR+/HER2- or ER/PR-/HER2 +.   

    Neoadjuvant (before surgery) chemo is standard protocol for TX to get it to shrink and form a lump so it can be gotten out with surgery.  Neoadjuvant chemo is being used more often now with other types of BC to shrink and get better results.  

    Ask your Dr for more info.  It is possible that you will wind up doing 2 different 'batches of chemo with the C being removed from the current TX plan.  I don't know - again this is sometimes the protochol.  I did 4 A/C, surgery (UMX), 12 Taxol, 25 rads in that order.



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  • Cheriden
    Cheriden Member Posts: 6
    edited August 2014

    Hello,

    I just spent the last year doing what I had to do! Survived the chemo but ended up with bloodclots from my port and lymphadema. I made a decision in December to do Vitamin C IVs and started exercising. Imwas in remission by April. I managed to not need surgery or radiation so far. 

    I've been going along in lala land. Thought I should go off Herceptin because I want the port out. My onc freaked out. I did more research and understand why she did!

    Are any of you still doing Herceptin?  I'm also on arimidex and would like to get off it as well and continue with the holistic/naturopathic route. Am I crazy? I'm starting to doubt myself.

    C

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  • bluepearl
    bluepearl Member Posts: 961
    edited August 2014

    No you are not crazy but you are feeling desperate. Please note that there is NO evidence that holistic/naturopathic remedies cure or treat effectively any cancer.... in fact, quite the opposite. Her2+ makes your tumor very aggressive and only herceptin can address this type of tumor successfully. Since you are hormone +, arimidex keeps cancer down by 50%. It is dangerous to replace science-based medicine with unproven alternative treatments no matter what the websites promoting them say. No one enjoys cancer or its treatments. It is a nasty disease and just because a treatment "feels good" doesn't mean it's working. Just because it feels bad, doesn't mean it's working either, but you have to lay your bets on a horse with 4 legs, not one with only one...that being false hopes and promises. I don't know how big your cancer was etc. but if it stands a chance of being cured, it is only with science-based medicine. You can ADD alternative if it doesn't interfere with standard treatments. While doing "research" please include those websites that are science based, sourced, and sourced by legitimate sources, not Mike Adams or Suzanne Sommers. 

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