Lymph node removal-HELP!!!!!

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alrz1980
alrz1980 Member Posts: 47
edited June 2014 in Lymphedema

Hi ladies! I'm unique since I don't have cancer. I had one lymph node removed three weeks ago to check for lymphoma. I was given no after care instructions. The lymph node was benign. I am angry and frustrated that both my PCP and surgeon (who I loved before this) did not offer me any other options to rule out lymphoma. Now I'm stuck with one missing lymph node. I asked three different times about lymphedema risk. Surgeon said zero percent. Now PCP admits to very small risk. Both told me no restrictions are necessary. I don't believe either of them. I'm getting copies of my paperwork to see if it was listed on my consent form as a possible side effect. If it wasnt, im getting a lawyer. Now I have to live with restrictions and I am paying myself to see a LT in two weeks to learn. My PCP will give me a referral. I have a 2 year old daughter. I got the biopsy to clear me of lymphoma so I could get pregnant again with no worries. Now I'm afraid todo it. How would I possibly lift a baby carrier, etc. also afraid of pregnancy triggering it and the IV's, blood pressure etc during labor. And breast pumps applying pressure to the area. Am I being a freak? Would love some kind, honest advice please.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited August 2013

     I had 17 nodes removed during mastectomy and never got lymphedema. My DIL had one very large one removed in her groin and didn't get it.

     None of my friends have gotten it either. It is not a sure thing!

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited August 2013

    Your chances of developing it are small, but it is possible. For any woman who had nodes removed, you should not get blood pressure, IVs, or shots in that arm. ALWAYS have them use the other arm. A bit of a pain, but doable. As far as lifting, you should still be fine for a baby carrier. Use both hands to distribute the weight, don't carry for long distances, etc. All common sense and easy adaptations. Not sure about the breast pump, but I am sure some one else will chime in about that. You might want to look into getting a sleeve, for flying only.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    alrz1980 First, I am so sorry yet another person has had to go through the "misinformation" phase, or the plain lack of information where you don't get to make an informed choice. I would be spitting tacks too. Gentle hugs. The good side to this is that the chances of you not getting LE are good, but nevertheless the downside is that now, you will always have it hanging over your shoulder that you just might.



    There are things you can do to minimize that risk considerably which shouldn't be a total deal breaker. In addition to what BayouBabe has said, just be careful of bites nicks scrapes burns hangnails and the like etc and that you have antibiot cream handy at all times to ward off possible cellulitis. Try not to subject your arm to too much heat or cold. Keep well hydrated, and keep arm welll moisturized. All these are doable without too much disruption to our lives.



    I hope you never have to deal with LE

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  • kareenie
    kareenie Member Posts: 339
    edited August 2013

    Where exactly was your lymph node removed from?

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  • alrz1980
    alrz1980 Member Posts: 47
    edited August 2013

    It was my right armpit.

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  • Kicks
    Kicks Member Posts: 4,131
    edited August 2013

    Any surgery can result in LE even if no lymph nodes are removed. Just the act of cutting in an area can cause enough damage to the system. I have a friend who had minor knee surgery and now fights LE in her lower leg far worse than what I do with my arm that had 19 nodes removed. Also any traumatic injury to an area can result in LE.



    Was the node removed or was a biopsy done on tissue from it? The node does not have to be removed to do a biopsy. Why did you feel the need to check/clear yourself of lymphoma? Didn't you do any research on options for ruling in or out?



    Every POSSIBLE SE can not ever be listed! Our bodies are each so unique. I've had SE throughout life that are unique to me as do so many others. It is our responsibility to educate ourselves and listen to the answers to our question - if they do not make sense then ask more and not blindly hear what we want to hear of what we are being told. I recently went through a medical issue where IF I hadn't educated myself the outcome would have been much worse if I hadn't stood up for myself and DEMANDED to be referred elsewhere. I have some new issues that require attention NOW (BCC & SCC) - I am researching them (and possible relationship to my IBC) so I can be prepared when I see my DR/new DR. Anything they tell me, I will be researching IF it is different than what I have already found. In 'today's world' with the internet there is no reason to not educate ourselves - so much easier than years ago when we had to go to libraries and use books there so no excuse!

    Live Life Ever Minute - the other option is no life.

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  • alrz1980
    alrz1980 Member Posts: 47
    edited August 2013

    I came here because ladies have been so helpful in the past to help me with benign breast issues. I did not write to be scolded as if this is my fault. I realize now I shouldn't have trusted my doctor of many years. I had symptoms of lymphoma which is why the biopsy was done. And yes I did research. And the research says a biopsy of tissue will NOT rule out lymphoma. It can give false negatives without removal. I appreciate your opinions but I do not need any responses that blame me for the doctor telling me incorrect information three times when I asked!

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  • cp418
    cp418 Member Posts: 7,079
    edited August 2013

    I didn't see mention of how many nodes you had removed or if there is a drain.  However, when I had 18 nodes removed and after drain removed the best thing I did was to continue use of the arm and exercise.  There are recent articles stating that exercise really helps during the healing stage - - so do not be fearful to use your arm as before.  Stretching your arm up is excellent to prevent cording issues and can be done during hot shower to help stretch your arm.  It's been several years now and so far I have no issues......

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    alrz1980 can you be specific please about who was scolding and blaming you?



    It is one thing to be ignored when you do your best to inform AND encourage someone but quite another when someone wrongfully makes insinuations/accusations towards you as well.



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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited August 2013

    When I had my MX in November I was told the Lymphedema risk for having 4 nodes removed was like 5%. I had the rest of them (left armpit) removed a few weeks ago and they tell me my risk is now about 20%. They gave me specific instructions for my arm. No BP, no IV, no injections... forever. They told me to always use the other arm. Also, wear a sleeve when I fly.  I have a medical alert bracelet that I wear on my left wrist stating the no nos and that there is a lymphedema risk. It's not a sure deal that you will get lymphedema in the future. It's just a risk we need to be aware of and be proactive. I was very concerned about this when I was deciding to have the rest of my lymph nodes removed. I also asked a bunch of women I met on here if anyone had an issue with lymphedema. There are a few but nowhere near as many as I thought. Hang in there!

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited August 2013

    These might help also...

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    http://www.stepup-speakout.org/manual_lymphatic_drainage_massage_lymphedema.htm

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  • alrz1980
    alrz1980 Member Posts: 47
    edited August 2013

    Hi Musical. My comment was directed towards "kicks" who asked me why I felt the "need" to get checked for lymphoma...as if I asked to do it. I had symptoms and I followed my doctor's directions. She also asked me why I didn't do research before surgery. I feel like I asked appropriate questions to my doctors and they lied to me. I thought I was smart about it. I appreciate your kind words:) just looking for support because I am scared out of my mind of LE.

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited August 2013

    I don't see what else could have been done. The lymph node had to be removed to rule out lymphoma. I wouldn't worry so much about one lymph node.  I've had heard we have 200 all thru our bodies. The removal of one can't be that worrisome. You chances of getting LE is really small.

    I posted that I had 17 nodes removed years ago. Neither the doctor or anyone else told me about possible LE; they just said not to have BP taken on that side.  But now after so many years I don't worry about that.

    I also had just finished a marathon before my surgery so got back to running after 3 weeks. I did not baby the arm at all (since nobody had told me to do that) and I think the constant pumping of the arm during running probably kept me from getting LE.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2013

    alrz - the risk of lymphedema after a SNB associated with breast cancer surgery is approximately 3-5%, the risk goes up with complete axillary lymph node dissection.  Your risk of other kinds of complications from the surgery could be equal to that of your lymphedema risk, and your risk percentage is unknown because the 3-5% that I mentioned assumes additional breast surgery.  I don't know what the specific risk is for lymph node removal only.  To put it into perspective, your non-lymphedema risk from a pregnancy and childbirth is greater than your LE risk from a single node removal.  It does sound as if you had symptoms that warranted the node removal, even if you were aware of the potential 3-5% risk of lymphedema, would you have still had the biopsy? At best, node removal and subsequent lymphedema is poorly understood, even by many physicians/surgeons who deal with breast cancer patients.  Some advocate restrictions, some don't.  Some consents have wording about "swelling" but don't specifically lymphedema, some do.  Some docs give specific restrictions about arm movement, exercise, and weight restrictions in the short term, some don't.  Since there is no hard and fast set of warnings and instructions, obtaining legal assistance is probably not going to be worth it - and you would have to prove tangible damages, i.e. - develop severe lymphedema after being told you definitely would not.  You would have to prove that they "lied", as opposed to stating their medical opinion.  Many of us have had to piece together diagnosis and treatment of lymphedema and have received more information doing our own research and from our physical therapists, than from our physicians.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    alrz, thx for clearing that up. I'm one of those who doesn't see the point in downplaying the facts and I do try to tell it like it is BUT laced with plenty of warm gentle hugs too. If there are good options then as some have stated here, we should take those into account too. It's a balancing act but there is ABSOLUTELY NO POINT in burying your head in the sand about this LE either. Im saying this because Ive heard more than one person here say LE is actually WORSE than having BC. So, knowledge about this SCUMBAG condition is the key.



    You have every right to be worried and upset. As having BC I think it is HARSH to be called out for "not doing your research". Let me tell you... the medical profession are the ones who should be informing us and whats more, when you've got a dx to try and get your head around, well if you can stomach research then great, but don't slight those who don't because they can't (for whatever reason). We're all different. I couldn't. I was so in shock nothing would sink in anywayz. While I'm at it Ill say this. You never know what anyone else is going through. Just because we've had a Cancer dx it doesnt mean that is all there is to life past present and future.



    LE IS a scary prospect and though its good to quote figures, the fact is those figures mean squat if we are the ones who are in the 1% crowd. Its as simple as that. In other words, the fact is YES you most likely will not need to be concerned but on the other hand there's ladies here who have only had ONE node out and have bilateral LE. Its ALWAYS a double edged sword for ANYONE who had had nodes out. The question is, then, how much are we going to do or take on board to circumvent LE. (Preventatively) I can guarantee it wont be as much a dealbreaker as if we get LE because we did nothing.



    These days people don't bat an eye about bareface lying and other insidious behaviours. The medical profession is NO exception. Please consider my little piece below. What SpecialK says is probably right. Me thinks it would be very wise to have facts and proof otherwise legal action could be more trouble than it's worth.



    AUDIO RECORDING

    After catching up on this thread I am only too well reminded of some advice I wrote up somewhere, a few years back on BCORg. I can't understate how convenient (in more ways than one)it is to take a voice recorder to ALL your appts.



    Caveat: Make sure you are aware of your relevant laws for your jurisdiction.



    The law for audio is actually quite different to video and indeed can be more restrictive. In my country only one person in the conversation has to be aware it is taking place but this is not so in other countries...which brings me to this point: either way, its a good thing to let the people know you want to record your meetings/appts. I got the odd one who didnt like it but most were OK when I said things like theres too much to take in and we find it helpful to go over the info later.



    Youd be surprised how much you miss, even if you have a support person with you.



    HTHs.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2013

    Important to note that the vast majority of ladies who post here have also had lumpectomy, uni MX or BMX with their node removal, hence the increased incidence of LE.  The OP has only had the node surgery - not to minimize that - but without accompanying breast surgery her risk is not as great, IMHO.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    I took it from the context of alrz's post that Lymphoma is a type of cancer right? (Sorry for my ignorance but without looking it up Im not sure)



    That said, no she hasn't had BC as such but cancer is cancer and it all stinks. On that score I like to give people a break as far as the stress factor goes. (Just looked back at my post and my wording can be misconstrued that I mayve thought she had BC, but it wasnt meant that way)



    SpecialK I would agree that her chances are greatly reduced with no "extra" surgery, but the point is there IS still that risk and she is right to at least consider the implications about children etc. In the end there is nothing better than an informed choice and then its up to each to weight the maybes, fors and againsts. Sometimes too that takes time to ponder over. I'd also agree her case is rather unusual, or around here on BC forums anyway.

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