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Lymphadenectomy - Right Breast Cancer

puppyjack
puppyjack Member Posts: 6

Hi, I am presently undergoing chemotherapy for a Triple-negative Right Breast Cancer. Very soon, I will have to decide if I undergo a "Lymphadenectomy"! I have been reading a lot about the side effects would worries me a lot - but I understand that it's a lose-lose situation. Because, if I don't undergo a "Lymphadenectomy" which seems to be the only solution to make sure all cancer cells have been killed, I will then never know if I still have cancer cells in my Lymph nodes. We are also talking about my right arm, and I am right handed.

If anyone out there has undergone a "Lymphadenectomy" I would be grateful if they were willing to share their experience. Thank you so much!

Comments

  • maggie15
    maggie15 Member Posts: 770

    Hi @puppyjack , While someone with TNBC might be a better person to answer your question, there has been a recent shift in protocol for the necessity of ALND. Some people have a very good response to neoadjuvant chemo and previously questionable lymph nodes turn out to be clear. I am ER+/PR+/HER2- with lymph nodes that appeared questionable on ultrasound. My breast surgeon wanted me to sign off on ALND during surgery but I opted for a SLNB instead and told her I would do the ALND in another surgery if necessary. It turned out that only one sentinel lymph node was positive so I didn't need the second surgery. I had radiation to my lymph nodes as a precaution. I ended out with breast lymphedema but my arm (right) has been fine.

    There is a greater chance of LE after ALND although it doesn't always happen. You should discuss this with your medical team and have them justify the decision to do ALND rather than SLNB if there are reasons it should be done. Whatever you do, I hope you can avoid LE. It's not the end of the world but it is one more problem to deal with. Good luck with your surgery.

  • cookie54
    cookie54 Member Posts: 618

    Hey puppyjack I am triple negative and I have had a ALND( recurrence in node 2020) had 8 nodes removed but not when initially diagnosed. First time around in 2016 I had BMX and sentinel node removed and at the time the node was clean. As Maggie said its' not typical practice to have a ALND unless there is proof that there is a very good reason to justify.

    As far as the ALND I was very apprehensive and worried about the chance of lymphedema also. Luckily I have not had any issues , fingers crossed it stays that way. So agree questions need to be answered as to necessity. Sending good vibes and wishes your way.

  • puppyjack
    puppyjack Member Posts: 6

    Thank you for your input Cookie54! Wishing you all the best!

  • puppyjack
    puppyjack Member Posts: 6

    Hi Maggie,

    When they removed the cancer from my breast they did a SLNB and three out of six lymph nodes were affected! I have been doing chemotherapy (AC-PACL)! I will be doing radiotherapy as well.

    They still want to discuss ALND with me and I am unsure if I should do it or take the chance that the chemotherapy sessions as well as the radiotherapy will have cleared any cancer cells in my lymph nodes!

    I am so worried - even though I know LE does not always happen, but if it does ………..

    Thanks for your comments, they are much appreciated.

    PuppyJack

  • moderators
    moderators Posts: 7,691

    We know it's a lot to consider, @puppyjack! We hope that you're handling the chemo well in the meantime, without too many side effects.

  • nume
    nume Member Posts: 81

    Hi puppyjack!

    I had Triple Negative with PCR after chemo. Opted for double mastectomy with reconstruction and during surgery they removed all 23 left lymph nodes, none was affected. I was very sad at first but came to the conclusion I would have always wandered if they shouldn`t have taken all of them out.

    I had no LE but it took 6 months to be able to sleep on a side and use both my hands as before all this started.

    Hope it helps

    XO

  • puppyjack
    puppyjack Member Posts: 6

    Thank you Nume, it helps but still very scary! 6 months is a longtime considering that it is my left side! Did Physio help?

    I am an HR for my daughter's company so I sure hope I can continue this work earlier than 6 months! This saddens me so much! So I don't go crazy I need to stay active!

    When they need a biopsy of the lymph nodes while doing surgery to remove the cancer in my right breast, they found 3 of out 6 affected lymph nodes (2 small ones and 1 larger one)! I guess this is why they are highly recommending surgery of the lymph nodes! Even though I remember, at the time, the surgeon saying it might come down to if I can live without really knowing!

    Thanks again and good luck

  • nume
    nume Member Posts: 81
    edited November 2023

    Puppyjack,

    if you decide for lymphadenectomy you will be able to stay active. I didn`t need any pain meds once out of hospital(day 3) but there is a 2-3 weeks period of time carrying the drains, for me there were 3 months of surgery complications because of the implants and another 2 months until I woke up one morning on my side :) …first time after 6 months… (slept only on my back for 6 months…)

    During summer I got few insect bites and got very scared it could trigger LE but nothing happened.I have been wearing long sleeves all summer and didn`t stay in the sun because I was afraid. Now, if I think about it… there have been changes …but I can use both hands just as well.

    The change is more on the stress level, things I never thought about before: not to cut, bruise or sunburn on my left arm, not to have blood drawn, not to use my left arm for blood pressure… I didn`t lose any function of the left arm and it didn`t change shape in any way.

    Sadly only the anatomopathology report will say for sure if the chemo worked on the lymph nodes and that will be once they are out. It comes to what your surgeon said… can you live without knowing…

    In August I had my first 6 months PET after chemo and surgery. Everything was clear but of course, each time I have a small pain, I get a bit scared. I think my level of anxiety would be worst if I didn`t know for sure there is nothing left there… On the other hand if the surgeon would have asked before the surgery I am sure I wouldn`t have approved to have all the left lymph nodes removed.

    Physio helps for sure(there are few interesting blogs on youtube). I didn`t have any because at the time, after everything settled, I was very depressed… Now I don`t think I need any…

    Good Luck XXO

  • puppyjack
    puppyjack Member Posts: 6

    Thank you very much Nume, these comments help a lot! I feel a little less scarred!

    One more question, did you wear Compression daytime and nigh time sleeves? Anything else I need to know before I embark in this surgery, that seems my only option to make sure all the cancer cells are gone!

    Thank you again for your time, I really appreciate it!

    I will always keep my fingers crossed for you and hope for the best outcome ever on all fronts!

    Take care.