SNB with prophylactic mastectomies

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SusanAnne
SusanAnne Member Posts: 245
edited March 2014 in Breast Cancer #1
This question is directed at anyone who's had prophylactic mastectomies. Was the subject of sentinal node biopsy discussed? My cousin (diagnosed with LCIS) will be having bilateral mastectomies in January. Not quite sure why SNB would need to be done so wanted to check others experience. Thanks.
Susan

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  • seeknpeace
    seeknpeace Member Posts: 259
    #2
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    Well, the SNB can help to determined more accurately if there has been passage of any cancer cells through the lymph system that would support her area of LCIS. I did have a prophylactic on the left side, and as that breast had no cancer of any kind, no SNB was done. But, with the right cancerous side, which was DCIS, I did have the snb. I was told that the SNB was not normally done for DCIS, but, that my grade of cancer and aggression warranted it. And, my oncologist still sees me every three months, and I am coming up on a year in Feb. It may depend on the grading of the cancer and honestly, I am not sure how they grade LCIS. Is it looked at the same as DCIS? I know that they are reluctant to treat LCIS, and I am not sure why...Jan
  • elizagain
    elizagain Member Posts: 43
    #3
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    Hi, yes I had a prophylactic mastectomy along with my 'regular' one in June,and they did an SNB, which came out fine. I guess as long as they are in there, it's a good idea to check.
  • tlmac
    tlmac Member Posts: 272 Member
    #4
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    Susan, There are many posts on this board from women originally disgnosed with DCIS or LCIS only to find that they had invasive cancer in the breast that wasn't originally detected. If this were the case and it had spread to lymph nodes, a simple mastectomy wouldn't be enough. I think, for whatever reason, your cousin's medical team wants to rule out any possibility of something going undetected. If it were me, I'd definitely let them!
    I hope all goes well for your cousin.
    terri
  • munnkybaby
    munnkybaby Member Posts: 1
    #5
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    elizagain said:

    Hi, yes I had a prophylactic mastectomy along with my 'regular' one in June,and they did an SNB, which came out fine. I guess as long as they are in there, it's a good idea to check.

    I hope that I am not intruding. I am looking for someone who has had a prophylactic mastectomy and would be willing to talk about it. I am looking for information for two reasons. One, I am required to interview someone for a research paper I am writing on the subject, but mostly because two, I am a high risk person and have become very interested in this topic. Reply back if you would be okay with a few questions, or if you know someone else who would. Thanks.
  • SanFranciscan
    SanFranciscan Member Posts: 9
    #6
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    Susan, I had a bilateral mastectomy a year ago, after being diagnosed with aggressive DCIS in one breast and LCIS in the other. I had sentinel node biopsies on both sides, both negative. This gives me better peace of mind, but I do have some continuing discomfort on the left side where 8 nodes, rather than 2 were taken because the sentinel nodes were not as easy to identify. Node removal also increases the risk of developing lymphedema. I'd advise your cousin to ask her doctor about the pros and cons of a sentinel node biopsy for her particular situation. We're all unique.
  • Bunny100
    Bunny100 Member Posts: 2
    #7
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    SanFranciscan said:

    Susan, I had a bilateral mastectomy a year ago, after being diagnosed with aggressive DCIS in one breast and LCIS in the other. I had sentinel node biopsies on both sides, both negative. This gives me better peace of mind, but I do have some continuing discomfort on the left side where 8 nodes, rather than 2 were taken because the sentinel nodes were not as easy to identify. Node removal also increases the risk of developing lymphedema. I'd advise your cousin to ask her doctor about the pros and cons of a sentinel node biopsy for her particular situation. We're all unique.

    Lymphedema
    I am having a bilateral masectomy April 18th due to DCIS in left breast and a strong family history of breast cancer. During an Mri an area of concern was found in the right breast and I need to dceide if I should biopsy it and hope it is benign or wait until surgery to find out but then would need to do a sentinel node biopsy on both sides and am concerned with the risk of lymphedema. Is there anyone who has had a SNB done on both sides with no signs of lymphedema? I am very active, lift weights, hike, bike and I also travel by air quite a bit and often to higher altitudes.
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #8
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    Bunny100 said:

    Lymphedema
    I am having a bilateral masectomy April 18th due to DCIS in left breast and a strong family history of breast cancer. During an Mri an area of concern was found in the right breast and I need to dceide if I should biopsy it and hope it is benign or wait until surgery to find out but then would need to do a sentinel node biopsy on both sides and am concerned with the risk of lymphedema. Is there anyone who has had a SNB done on both sides with no signs of lymphedema? I am very active, lift weights, hike, bike and I also travel by air quite a bit and often to higher altitudes.

    No LE with ME
    I had a Bilateral Mastectomy. DCIS on the right side. Presurgical MRI showed a spot deep in the left breast. I was so tired of biopsies, lumpectomies, etc. I had already made up my mind that if the MRI showed anything at all, I would get that removed,too. I was told that once I had the mastectomy I couldn't get an SNB at a later time, I opted on the safer side to get it done. I do not have LE, BUT I do have a severe case of post mastectomy pain syndrome from nerve damage. I don't regret my decisions at all. It left me with piece of mind, even with pain.Good luck on your journey.
  • Bunny100
    Bunny100 Member Posts: 2
    #9
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    cinnamonsmile said:

    No LE with ME
    I had a Bilateral Mastectomy. DCIS on the right side. Presurgical MRI showed a spot deep in the left breast. I was so tired of biopsies, lumpectomies, etc. I had already made up my mind that if the MRI showed anything at all, I would get that removed,too. I was told that once I had the mastectomy I couldn't get an SNB at a later time, I opted on the safer side to get it done. I do not have LE, BUT I do have a severe case of post mastectomy pain syndrome from nerve damage. I don't regret my decisions at all. It left me with piece of mind, even with pain.Good luck on your journey.

    Do you know if the nerve
    Do you know if the nerve damage is from the SNB or from the masectomy? Was the spot on left breast benign? I sure know what you are saying about being tired of the biopsies, lumpectomies, etc. What do you do now if you need to have blood drawn or you blood pressure taken as they say you should not do it on the arm that had the nodes removed?
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #10
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    Bunny100 said:

    Do you know if the nerve
    Do you know if the nerve damage is from the SNB or from the masectomy? Was the spot on left breast benign? I sure know what you are saying about being tired of the biopsies, lumpectomies, etc. What do you do now if you need to have blood drawn or you blood pressure taken as they say you should not do it on the arm that had the nodes removed?

    The nerve damage came from
    The nerve damage came from nicking nerves close to the sentinel nodes(The pathology report said I had one axillary node removed on the right arm). I am a hard blood draw to begin with and have always gotten blood draws on the hands. I use my left hand for blood draws or sometimes the top of my foot if I am having many tubes drawn at once. I used to get bp's done on the upper arms, but because of the pmps, I would be in extra pain for a week, so I went to the lower left arm, but had a problem with it once, so I went to leg bps. I have noticed the last few times, they have not been able to get bp from the lower leg with machines. Seems like some machines can get it, some can't. If it is necessary for treatment concerns, I will let the do the lower left arm, but they can't go past a certain number or I make it stop.
    Some women who have had SNB's are very proactive about no needles nor bps in the arms. Some like me, take some precautions, but mine are mainly because of PMPS, not LE. Some women, don't take any precautions. It runs the whole range of degrees.
    Just because one person has a treatment side effect, does not mean that someone else will.
    The left breast was benign, PASH, a tumor whose only treatment is surgery anyway, so I am content. I also had very large breasts and hated them and bras. Since I didn't have recontruction, I love being flat or almost flat (I have some tissue left that looks like weird boobs with no nipples) and not having to wear a bra. And, I didn't want all the extra surgeries and discomfort that goes into reconstruction. Some women want it, my choice was not to.I don't think I would have like one real one and one reconstructed one anyway.
    Breastcancer.org has some really large forums that have thousands of women talking about LE, Surgeries, Txs, reconstruction, no reconstruction, stages, etc. I use both this site and that site. It may help you to look around that site,too.
    Have you talked to your surgeon about your concerns?

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