Lymph nodes painful on both sides?

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Lovemygirbabies
Lovemygirbabies Member Posts: 4
edited May 2016 in Diagnosed and Waiting for Test Results

I've been reading these boards since I was diagnosed but haven't posted anything yet.

I felt a lump in my breast mid April that I knew shouldn't be there, went to my GP, was referred to my local breast center, got an ultrasound, and scheduled a lumpectomy. Doc wanted to do a biopsy but due to prior (terrible) experience, I wanted the whole thing excised. I asked him to do wide margins, just to be safe, and he did not (because I am lactating; I'm 31 and have an 11 month old I breastfeed). It ended up being cancer, obviously (or why would I be here, lol?) ER-/PR-/HER2+++ grade 3 IDC. Margins were not clear. I developed a very large seroma and cellulitis, was given abx for the cellulitis but was told they wouldn't do anything for the seroma, no matter what. It is large and painful (original lump was about 1.3x1ish, seroma is 5x7x4. My boob look deformed.

Anyway, I wanted a 2nd surgery ASAP to get clean margins and test nodes but surgeon said no... I need to wean first. It is pretty much impossible to wean an 11 month old overnight. Even then, after long term lactation, it can take forever for milk to dry up. I have dramatically reduced my nursing, but in the meantime, got my care transferred to another hospital several hours away (one of the top rated hospitals in the country, and they saved my life before so I'm hoping they will now, too!)

In the last two days, I have gotten mammos, node ultrasound, and breast MRIs. They said my nodes are swollen on the cancer side. TBH, my nodes hurt on both sides. The doc who did the surgery also did a node US right before and said at the time that my nodes did not appear to be affected. What are the chances that my nodes are now swollen because of metastasis? Could it be illness or surgery? They didn't check the contralateral nodes but they have been feeling sore as well. I am extremely scared. I have two sweet kids and I desperately want to live :

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Hi lovemygirlbabies, and welcome to Breastcancer.org!

    We hate that you have to be here, but we're really glad you found us and decided to post. We're sure you'll get some good answers soon from our other incredibly helpful members.

    In the meantime, try to remain calm and think positively until you have more answers.

    Please continue to post and keep coming back here for support. We look forward to hearing more from you as you navigate your treatment!

    --The Mods

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  • windingshores
    windingshores Member Posts: 704
    edited May 2016

    I had a cancer scare while nursing and got a lot of bad recommendations. I sought the help of Susan Love and ended up with her wonderful partner Helen Cooksey.  She is now in LA. These two are really good with breastfeeding issues, and most oncologists aren't, at least in my experience. I wonder if you could contact Dr. Love or Dr.Cooksey for advice.

    Even a lactation consultant would be a huge help. Both with how the baby can stop nursing in the least traumatic way, and how you can speed up the drying of your milk.

    Does your 11 month old take a bottle at all?

     Have they told you that you need to be on Herceptin and chemo? These cannot be given to your baby via breast milk.

    It would seem that you need to stop nursing as soon as possible. Can you do the chemo and Herceptin as neo-adjuvant therapy before the second surgery? I don't even know if it would be neo-adjuvant or adjuvant since the tumor was taken out.

    So sorry this is happening to you.

    Her2+++ really responds to the Herceptin and chemo, I have read and heard. Others can confirm with personal experience perhaps.



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  • Lovemygirbabies
    Lovemygirbabies Member Posts: 4
    edited May 2016

    Thank you for the dr. recommendation, I will check them out! Even if I can't see them, perhaps they will know someone that I can see.

    Chemo/Herceptin are not an option for me, even if I were to wean. I have a comorbid genetic neurological condition that causes me to grow tumors, and one of them caused me respiratory failure for 7+ years prior to removal. I have an enlarged heart and dysautonomia, which causes me other heart related problems.

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