DCIS & axillary lymph node dissection

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issabgm
issabgm Member Posts: 4
edited March 2014 in Breast Cancer #1
I am scheduled to have a mastectomy next week and have decided to NOT have the axillary lymph node dissection since the probability of lymph node involvement is so low. Has anyone else made this choice? What was the response of their oncologist? How did they deal with the uncertainity of not knowing if the lymph node was positive or negative?

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  • jeancmici
    jeancmici Member Posts: 665 Member
    #2
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    If you have a small lump and think the probability of lymph node involvement is small, why are you having a mastectomy?

    Seems you would have a lumpectomy with sentinel node being checked at the same time.

    Did your oncologist suggest you had a choice? I had five doctors examine my underarm and no one felt anything - but the sentinel node was cancerous.
  • sassysally
    sassysally Member Posts: 150
    #3
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    I had a lumpectomy the first time and was very small, still had lymph node involvemet. I'd have them test, but its a personal choice. I would want to know and not take that risk. If you don't have them tested, I think it will continually eat at you what if......get them tested, I think you'll be gald you did. Maybe you doctor doesn' think there is involvment, but like anything medicine is a science, and not perfect. Knowledge is power. Won't hurt anything to get tested, might just save your life, but again a personal choice. Good Luck
  • issabgm
    issabgm Member Posts: 4
    #4
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    jeancmici said:

    If you have a small lump and think the probability of lymph node involvement is small, why are you having a mastectomy?

    Seems you would have a lumpectomy with sentinel node being checked at the same time.

    Did your oncologist suggest you had a choice? I had five doctors examine my underarm and no one felt anything - but the sentinel node was cancerous.

    I have no lumps, just microcalifications. My DCIS is extensive so that rules out a sentinel node dissection. I really am concerned about lymphdema since there is no cure and no really good treatments. In Dr. Susan Loves's Breast Book said there probality of lymph node involvement was less than 3 percent with DCIS and it would be reasonable to forego the axillary lymph node dissection.
  • blackbandana
    blackbandana Member Posts: 64
    #5
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    I was first diagnosed with DCIS with extensive margins. Had mastectomy and it turned out that my cancer was behind my breast, I followed up with lymh node dissection and turned out to have 2 lymh nodes involved. I started off at stage 0 (DCIS) to be later staged at IIb. It is a personal choice, but for me I am glad I did all. I'm finished with all my treatments and back to feeling good, but had I not gone for lymh node dissection I could be dealing with it all again later. I do understand that I'm still at risk, but I feel that I was given the opportunity to beat this 1st time round and wasn't prepared to do it half heartedly. Again its a personal choice and only you can make it. I wish you good health and a speedy recovery. Take care
  • sassysally
    sassysally Member Posts: 150
    #6
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    issabgm said:

    I have no lumps, just microcalifications. My DCIS is extensive so that rules out a sentinel node dissection. I really am concerned about lymphdema since there is no cure and no really good treatments. In Dr. Susan Loves's Breast Book said there probality of lymph node involvement was less than 3 percent with DCIS and it would be reasonable to forego the axillary lymph node dissection.

    my last and 3 occuraance with bc was also mircocalcifiations and they looked like grains of and on the mamogram. Not big at all. Still had lymph nodes tested, and there was involvement.I wouldn't forego the axillary lymph node dissection. They gave me the option, and infact stated what you have stated as they probably are not involved. I opted on the side of "better to be safe than sorry."... glad I did the dissecetion. Hope you do to.
  • fordss55
    fordss55 Member Posts: 5
    #7
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    I too had DCIS which was scattered and required mastectomy. I opted for bilaterals because of LCIS which was also present. My surgeon did not give me a choice and did not take any lymph nodes. He told me to continue with self exams. Path report was good and I'm fine with the decision. Good Luck!
  • inkblot
    inkblot Member Posts: 698 Member
    #8
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    issabgm said:

    I have no lumps, just microcalifications. My DCIS is extensive so that rules out a sentinel node dissection. I really am concerned about lymphdema since there is no cure and no really good treatments. In Dr. Susan Loves's Breast Book said there probality of lymph node involvement was less than 3 percent with DCIS and it would be reasonable to forego the axillary lymph node dissection.

    Hi Issabgm:

    I didn't realize that the Sentinel Node procedure could be done with diffuse DCIS. I think that's an amazing step forward! Almost 2 years ago when I had my surgery (lumpectomy) the qualifying criteria didn't include DCIS. Things change so quickly and I think that's great!

    Regarding which procedure to have: I'd recommend that you research the Sentinel Lymph Node Dissection as an alternative to having the standard dissection. No node pathology at all seems a bit risky as the doctors really can't know the extent of your disease and make the best recommendations for adjunctive treatment. I know only one woman who had DCIS and three surgeries to get it all and had no nodes whatsoever removed.

    I had the SLND and have not experienced any problems. Actually, it healed very quickly and very well. Only a tiny incision was necessary. You do need a surgeon who's highly skilled to do this procedure though. If he's done less than 100 such surgeries, I wouldn't have him do it. It requires a considerable degree of experience to successfully find the correct nodes. A surgeon's 'FIND RATE" needs to be very high. I'd want to see 98% or better.

    I've never spoken with any other women who had the SLND who had any residual problems or lymphedema.

    Since only the nodes into which the radioactive dye drains, are taken, it's far less traumatic. Your remaining nodes are left intact and functional. Ideally, completely untouched. I think it's the absolute best "first" choice for any woman who's a candidate for it and has the option.

    It was uncomfortable having the injections around my tumor, prior to surgery, but I'd highly recommend it for two reasons: It greatly reduces the chances of any arm numbness or lymphedema problems and it tells the docs and yourself what the status is without the more traumatic taking of one or two whole levels of nodes. When the latter is done, you lose the nerves and blood vessels connected, as well as the entire sponge like bed in which the lymph nodes are positioned. That's an awful lot of tissue to lose, if you don't have to. I haven't followed all the reports but the procedure typically has an excellent outcome in the hands of an experienced surgeon.

    Just thought I'd share my own experience with you.
    If you go to www.nci.nih.gov, there's a whole section about SLND, (in the breast cancer section)which may be helpful.

    Since you're having mastectomy, you only have one chance, prior to surgery, for the SLND. Once the mast. is done, the procedure can no longer be utilized.

    Hope this helps in some way and I'm wishing you all the best. Please let us know what you decide.

    Love, light and laughter,
    Ink
  • issabgm
    issabgm Member Posts: 4
    #9
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    inkblot said:

    Hi Issabgm:

    I didn't realize that the Sentinel Node procedure could be done with diffuse DCIS. I think that's an amazing step forward! Almost 2 years ago when I had my surgery (lumpectomy) the qualifying criteria didn't include DCIS. Things change so quickly and I think that's great!

    Regarding which procedure to have: I'd recommend that you research the Sentinel Lymph Node Dissection as an alternative to having the standard dissection. No node pathology at all seems a bit risky as the doctors really can't know the extent of your disease and make the best recommendations for adjunctive treatment. I know only one woman who had DCIS and three surgeries to get it all and had no nodes whatsoever removed.

    I had the SLND and have not experienced any problems. Actually, it healed very quickly and very well. Only a tiny incision was necessary. You do need a surgeon who's highly skilled to do this procedure though. If he's done less than 100 such surgeries, I wouldn't have him do it. It requires a considerable degree of experience to successfully find the correct nodes. A surgeon's 'FIND RATE" needs to be very high. I'd want to see 98% or better.

    I've never spoken with any other women who had the SLND who had any residual problems or lymphedema.

    Since only the nodes into which the radioactive dye drains, are taken, it's far less traumatic. Your remaining nodes are left intact and functional. Ideally, completely untouched. I think it's the absolute best "first" choice for any woman who's a candidate for it and has the option.

    It was uncomfortable having the injections around my tumor, prior to surgery, but I'd highly recommend it for two reasons: It greatly reduces the chances of any arm numbness or lymphedema problems and it tells the docs and yourself what the status is without the more traumatic taking of one or two whole levels of nodes. When the latter is done, you lose the nerves and blood vessels connected, as well as the entire sponge like bed in which the lymph nodes are positioned. That's an awful lot of tissue to lose, if you don't have to. I haven't followed all the reports but the procedure typically has an excellent outcome in the hands of an experienced surgeon.

    Just thought I'd share my own experience with you.
    If you go to www.nci.nih.gov, there's a whole section about SLND, (in the breast cancer section)which may be helpful.

    Since you're having mastectomy, you only have one chance, prior to surgery, for the SLND. Once the mast. is done, the procedure can no longer be utilized.

    Hope this helps in some way and I'm wishing you all the best. Please let us know what you decide.

    Love, light and laughter,
    Ink

    Hi Inkblot, Thanks for your input, however SNLD does not work for extensive DCIS that is why my surgeon wants to do a axillary node dissection. I did not realize that having extensive DCIS increased my chance of lymph node involvement 7 times. I'm still hesitate because I heard what lymphdema does to your life. But I really have no choices do I?
  • sisler01
    sisler01 Member Posts: 10
    #10
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    Please consider all your options. My tumor was huge-almost 4cm at it's widest margin and I had a lumpectomy and still have most of my breast. I believe you would benefit from a sentinal node biopsy-it is much less traumatic. Your oncologist can let you know exactly what is involved. I had 19 lymph nodes removed (all Neg!!) and while I don't have any problems with lymphadema, I have considerable numbness in my armpit and back. Even though they "got it all" within the tumor bed I went thru very aggressive chemo and radiation in the hopes it would prevent/stop it's growth elsewhere in my body. My oncologist gave me encouragement that I will never forget: she said that if I get cancer again-either in my breast or anywhere else, I will at least know that I have done everything in my power to prevent it. That meant alot to me and I don't regret going thru my treatment for that exact reason. There is comfort in knowing that. My prayers are with you.
  • annyo
    annyo Member Posts: 7
    #11
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    issabgm said:

    Hi Inkblot, Thanks for your input, however SNLD does not work for extensive DCIS that is why my surgeon wants to do a axillary node dissection. I did not realize that having extensive DCIS increased my chance of lymph node involvement 7 times. I'm still hesitate because I heard what lymphdema does to your life. But I really have no choices do I?

    I had extensive DCIS and had bi-lateral mastecomies, with a Sentinel Node biopsy on one side. My understanding is that there is no reason that SNL cannot be used with extensive DCIS. However, many people opt not to have any node dissection at all. Best of luck.
  • inkblot
    inkblot Member Posts: 698 Member
    #12
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    issabgm said:

    Hi Inkblot, Thanks for your input, however SNLD does not work for extensive DCIS that is why my surgeon wants to do a axillary node dissection. I did not realize that having extensive DCIS increased my chance of lymph node involvement 7 times. I'm still hesitate because I heard what lymphdema does to your life. But I really have no choices do I?

    Hi:

    Perhaps you do have some choices? As you can see from the replies to your posts, at least two ladies here HAVE had the SLND, with a dx of DCIS. Remember that surgeon's are just like everyone else and have their own differing opinions. If YOU feel comfortable with it, take the time to consult a different surgeon. Preferably one who specializes in breast diseases/conditions, if there's one near enough to where you live. This is your right as well as your responsibility to yourself, in order to fully explore and understand your options.

    I understand how you feel and the time it takes for a consult may perhaps detail some other options for you and be time well spent. I think I was initially just as afraid of the lymphedema risks as I was of the cancer itself! But on the very realistic and bright side, many, many women have the standard node dissection and experience absolutely no problems, so try to keep that in mind.

    Love, light and laughter,
    Ink
  • issabgm
    issabgm Member Posts: 4
    #13
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    inkblot said:

    Hi:

    Perhaps you do have some choices? As you can see from the replies to your posts, at least two ladies here HAVE had the SLND, with a dx of DCIS. Remember that surgeon's are just like everyone else and have their own differing opinions. If YOU feel comfortable with it, take the time to consult a different surgeon. Preferably one who specializes in breast diseases/conditions, if there's one near enough to where you live. This is your right as well as your responsibility to yourself, in order to fully explore and understand your options.

    I understand how you feel and the time it takes for a consult may perhaps detail some other options for you and be time well spent. I think I was initially just as afraid of the lymphedema risks as I was of the cancer itself! But on the very realistic and bright side, many, many women have the standard node dissection and experience absolutely no problems, so try to keep that in mind.

    Love, light and laughter,
    Ink

    Thanks again Inkblot. I fired my surgeon and cancelled the surgery. I am scheduled to have my mastectomy Monday 3/24 with another surgeon. I suspected my other surgeon had his own agenda (he hadn't performed many SNLD). My new surgeon pioneered the procedure in San Antonio and even convinced the hospital to buy the equipment. He has done hundreds of SNLDs. I feel much better now about everything. I also found out from Dr. Susan Love my DCIS is not extensive since I do not areas greater than 5cm. I was afraid to cancel the surgery, but my gut feelings told me the Dr. was not being honest with me.

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