Double mastectomy after axillary node dissection?

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pammm56
pammm56 Member Posts: 1
edited March 2014 in Breast Cancer #1
Newbie here. I've had a lumpectomy with a positive sentinel node followed by an axillary node dissection. I'd like to skip radiation and am thinking about a double mastectomy. One of the reasons I'm avoiding radiation is because of the raised lymphedema risk. But I can't find anything about the lymphedema risk of having surgery (like the mastectomies) following the axillary node dissection. The surgery might solve some other problems as well, and I know it is serious stuff, but am having trouble figuring out how to figure out risks.

Thanks for any help.

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  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #2
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    Hi & welcome -although I'm
    Hi & welcome -although I'm sorry you have breast cancer & have to be here with us. This site will be one of the best sources of information, encouragement, advice, and kinship that you will find through this ordeal. We're here to help you, as we've all been where you are now.
    I had a double mastectomy. Here's how it went - found BC in my right breast, approx 2 cm. I elected to have both breasts removed, thus skipping radiation. I had the sentinal node biopsy at the time of my surgery, as well as tissue expanders placed right after they removed my breast tissue. I did not have any positive nodes, but they did remove 3 for the sentinal node biopsy. I'm not entirely sure about the percentage of risk of lymphedema associated with mastectomy, but I do know there are some women on the boards here who went on to have mastectomies after not getting clean margins during their lumpectomy, and hopefully they can chime in & help answer your question. I do not regret my surgical decision at all -even though it was looked at as "radical" by some people. The surgery itself wasn't nearly as bad as I had imagined -I had c-section births for both of my daughters and the c-section was MUCH MORE difficult and painful, and longer to recover from.
    My thinking is that your risk of lymphedema would be around the same whether you had another lumpectomy or a mastectomy. If you will be having chemo you can get a port put in so that you don't have to worry about only having blood drawn on one side -the port is so convenient & really didn't bother me much, and the surgery to have the port implanted was a breeze, outpatient, tender for a day...
    I hope some of the other sisters on here will shed some light on their experiences with you. In the meantime, best of luck & health to you & please keep us updated on your treatment, and ask away ANY questions you need help with, that's what we're here for :)
    *hugs*
    Heather
  • jessiesmom1
    jessiesmom1 Member Posts: 915 Member
    #3
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    Lymphedema risks
    I had an excision biopsy followed by a complete axillary dissection. 22 lymph nodes were removed and 2 were cancerous. A right mastectomy followed. Then came 4 rounds of A/C and 12 rounds of Taxotere. I did not have any radiation and no hormone therapy as I am triple negative. After the axillary dissection I was warned about the risks of lymphedema. I was told not to have any injections in the affected side, no blood draws in that side and do not have my blood pressure taken on that side. So far I have had no lymphedema problems at all. My arm and shoulder on the involved side are sore but that is about it. You can get a lot of information online about lymphedema. I always find the Mayo Clinic website informative and the Lymphedema Society website, too. I feel that worrying about side effects that may not happen are a waste of my time. It is good to be informed so you know what to expect but don't go overboard. Lymphedema can be managed via compression sleeves, lymphatic massage, etc. I think you should write a list of your concerns and discuss them with your doctor or nurse practitioner. Unless you have medical training I don't think you are properly equipped to make decisions about your treatment based on supposition. Good luck!
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #4
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    Heatherbelle said:

    Hi & welcome -although I'm
    Hi & welcome -although I'm sorry you have breast cancer & have to be here with us. This site will be one of the best sources of information, encouragement, advice, and kinship that you will find through this ordeal. We're here to help you, as we've all been where you are now.
    I had a double mastectomy. Here's how it went - found BC in my right breast, approx 2 cm. I elected to have both breasts removed, thus skipping radiation. I had the sentinal node biopsy at the time of my surgery, as well as tissue expanders placed right after they removed my breast tissue. I did not have any positive nodes, but they did remove 3 for the sentinal node biopsy. I'm not entirely sure about the percentage of risk of lymphedema associated with mastectomy, but I do know there are some women on the boards here who went on to have mastectomies after not getting clean margins during their lumpectomy, and hopefully they can chime in & help answer your question. I do not regret my surgical decision at all -even though it was looked at as "radical" by some people. The surgery itself wasn't nearly as bad as I had imagined -I had c-section births for both of my daughters and the c-section was MUCH MORE difficult and painful, and longer to recover from.
    My thinking is that your risk of lymphedema would be around the same whether you had another lumpectomy or a mastectomy. If you will be having chemo you can get a port put in so that you don't have to worry about only having blood drawn on one side -the port is so convenient & really didn't bother me much, and the surgery to have the port implanted was a breeze, outpatient, tender for a day...
    I hope some of the other sisters on here will shed some light on their experiences with you. In the meantime, best of luck & health to you & please keep us updated on your treatment, and ask away ANY questions you need help with, that's what we're here for :)
    *hugs*
    Heather

    I never knew that rads would
    I never knew that rads would have anything to do with lymphedema. I thought that usually comes from removal of your nodes.

    The main thing I want to add is that rads kill any stray cancer cells that might be left from surgery. If your oncologist thinks you should have them, I hope you do.

    I know some on here have had a mastectomy and taken rads, and, some haven't.

    Good luck,

    Debby
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #5
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    Chiming in
    Hi. I can shed some light based on my experience. I had a lumpectomy followed by a partial mastectomy with sentinel node (1) biopsy. I developed lymphedema of the breast only. I have been treating with an occupational therapist. The way it was explained to me by my therapist and by my primary care and ob/gyn is that there is no predictability as to who will develop lymphedema and if they do where the lymphedema will take hold (arm, breast, etc.) Lymphedema is essentially the improper draining of fluid from whatever portion of the body is effected. It's root cause is a disruption in the body's lymphatic system. This can be by surgery, by injury, or by infection. No matter which you decide on (surgery or radiation) you will be essentially betting the odds. The websites the other ladies provided are excellent resources. No matter what you decide find peace in your choice and don't beat yourself up :)

    Hugs!
    Michele
  • Kylez
    Kylez Member Posts: 3,761 Member
    #6
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    jessiesmom1 said:

    Lymphedema risks
    I had an excision biopsy followed by a complete axillary dissection. 22 lymph nodes were removed and 2 were cancerous. A right mastectomy followed. Then came 4 rounds of A/C and 12 rounds of Taxotere. I did not have any radiation and no hormone therapy as I am triple negative. After the axillary dissection I was warned about the risks of lymphedema. I was told not to have any injections in the affected side, no blood draws in that side and do not have my blood pressure taken on that side. So far I have had no lymphedema problems at all. My arm and shoulder on the involved side are sore but that is about it. You can get a lot of information online about lymphedema. I always find the Mayo Clinic website informative and the Lymphedema Society website, too. I feel that worrying about side effects that may not happen are a waste of my time. It is good to be informed so you know what to expect but don't go overboard. Lymphedema can be managed via compression sleeves, lymphatic massage, etc. I think you should write a list of your concerns and discuss them with your doctor or nurse practitioner. Unless you have medical training I don't think you are properly equipped to make decisions about your treatment based on supposition. Good luck!

    I don't have lymphedema,
    I don't have lymphedema, and, hope I never do. I think it comes from the removal of nodes. Some do get it and some don't. I don't believe rads causes it.

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