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Multifocal IDC, DCIS, Positive Node, ALND

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Hello,

I was diagnosed in feb 2022.

The cancer in my lymph nodes did not show up in PET scan. It was discovered through pathology.

Left IDC and DCIS; IDC:29 mm; DCIS:48mm; 1/2 nodes positive; Grade 2

Right DCIS: 22mm; 0/1 nodes; Grade 2

Surgery BMx 3/17/2022

Chemotherapy 4/15/2022 TC

ALND ??

Radiation Therapy Breast, Lymph nodes

Here is my current situation. I had seroma liquid oozing out 2 months post surgery and I have been packing the wound daily. Onco wants all the lymph nodes from the left arm removed after chemo. I will also have rad and harmone therapy in the treatment plan. It will be helpful to hear from someone who has been thru ALND their side effects or decided NOT to do ALND.

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  • mswife
    mswife Member Posts: 66
    edited May 2022
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    Hello!

    My husband had a full ‘en bloc’ ALND - level 1, 2 and some level 3 nodes.Everything was matted and a mess. He has mild lymphedema to the left forearm and upper arm, which seems to be a bit worse if he’s down working in his hands and knees. He had a seroma post-op that’s scarred down now after radiation. He’s on tamoxifen.

    He has full range of motion and no pain, just a bit of tightness with arms way over his head.

    The only thing I’ll add is that his onc told him men tend to have less lymphedema than women? I guess due to musculature and upper body activity.
    It seems harder to find ALND patients nowadays, it’s much less common than it used to be.
    good luck!

  • lw422
    lw422 Member Posts: 1,399
    edited May 2022
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    I had an ALND with my mastectomy last August. Unfortunately for IBC (inflammatory BC) patients, the ALND is still "standard protocol" so even though I had ZERO out of 32 (yes... 32!!) positive nodes, all first and second level nodes were removed. I had the LVA (lymphovenous bypass) surgery done at the same time, which connected four cut lymph channels directly to my veins. This procedure is to help drain lymph and hopefully avoid lymphedema. At 9 months post surgery I don't have LE.

    I am still having some tightness; armpit discomfort after surgery was really annoying. I have full range of motion but I have to work for it... if I don't do stretching and other exercises the tightness returns. The ALND is not a walk in the park but like the other treatments, it's "doable."

    I didn't want the ALND, but then I didn't want chemo, radiation, or a mastectomy either. I figure if the procedure helped save my life then it was worth it. We each have to weigh this decision for ourselves, so good luck to you.

  • whimsicalzaadugirilife888
    whimsicalzaadugirilife888 Member Posts: 11
    edited May 2022
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    lw422 - I am sorry that you had to remove 32 nodes!! My doc did mention about lymphovenous bypass. Glad it worked for you and hoping that it will keep out LE.

    Was the ALND with bypass harder than the mastectomy itself ?

  • lw422
    lw422 Member Posts: 1,399
    edited May 2022
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    Whimsical--yeah, I was bummed about the 32 nodes, especially since they were all clear with no cancer cells. However, I learned from my surgeon that each of us is unique in the anatomy of the lymph system. Some people have only a few nodes in the first and second axillary levels, and some people have a lot of them. I know that some people have as few as 8 or 9 nodes in the same area where I had 32. Weird.

    If you have the ALND and your insurance will cover the bypass, by all means... get it! It doesn't add much time to the surgery or to your recovery and may be a way to avoid dealing with lymphedema. I was terrified of getting LE.

    Since I had all the procedures at the same time, it's really difficult for me to say that one was harder than the other. I knew I had to have the mastectomy and the ALND because of having IBC, and I was willing to do everything I could to help lower my chances of going through this again. I was happy that I could get the bypass because of my LE fears. Recovery was tough and sometimes I just get mad that I'll never feel the same or look the same or have a mental break from it all, but life goes on and ultimately I'm happy to still be alive.

    If you are considering not having the ALND, perhaps you should consider getting a second opinion from another cancer treatment facility. I wish you the best and I hope you'll keep posting about what you decide. I'm so sorry that you have to go through this. Take care.