Small lumps on the back of my arm

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solfeo
solfeo Member Posts: 838
edited May 2018 in Lymphedema

I'm wondering if lymphedema ever shows up as individual swollen lymph nodes? I have some lumps on the back of my arm on the cancer side that have been concerning me. One of the lumps is a little tender. They are about halfway between my armpit and my elbow. The breast surgeon dismissed them as remnants of large weight loss, but she dismisses everything so I don't trust her. My MO said it would be an unusual place for cancer to spread but not impossible. She offered me a PET scan or said we could watch them for awhile. I hate scans so I chose watch and wait but I'm spending more time worrying and wondering about it.

I have been in intense physical therapy for rotator cuff tears and a frozen shoulder, and I do a lot of repetitive arm movements with weights, and in the pool with resistance. I'm wondering if this could be contributing to the lumps. The injury and/or the PT. What I don't know is if lymphedema always presents as general swelling, or if individual nodes could be swollen. I only had 2 nodes removed so risk is low but not zero. I haven't been able to find any information about this anywhere. Anything I read about lymph nodes doesn't even talk about the existence of nodes in this area on the back of the arm, and I don't know for sure that the lumps are nodes. Just trying to get to the bottom of what they might be, and of course trying to ease my mind about spread of cancer.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited March 2018

    they could be cysts. I have one in my left arm just below the elbow. Freaked me and DH out when it first came up. Primary care doc diagnosed it-it’s not something BSs or MOs see everyday. Maybe make an appointment with your primary doc. Good luck!

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  • solfeo
    solfeo Member Posts: 838
    edited March 2018

    Thanks Lula. I have wondered if they could be cysts. My breasts were very cystic, and I had one in my axilla that was surgically removed last year. The BS thought it was a lipoma going in but it deflated when she cut. I have had other unexplained lumps come and go elsewhere, but these are different. There are a few of them of varying sizes in a cluster, and too close for comfort to the cancer zone. I would rather have an ultrasound than a PET scan, but neither one of the cancer docs wanted to give me one. I was thinking I should ask my regular doctor, but she'll probably tell me I should be talking to the MO or BS.

    I'm still curious if lymphedema is even a possibility with this type of presentation, if anyone knows.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2018

    Solfeo, the swelling of lymphedema has little to with the nodes smelling. What swells is the tissue in the limb or torso, because the lymph vessels are not carrying off the excess fluid from in between the tissue cells. In answer to your question, though, it is possible to have lymphedema swelling in only a small area. Some women here have swelling just in an area above the elbow, or just in a small area of the chest. But I've never heard of that swelling taking the form of multiple small lumps--it's more like a single "lump" that contrasts, say, to the other arm or other side of the chest.

    I hope you get to the bottom of it soon. I hear you on not wanting any more scans, but sometimes they're better than weeks of worrying. Please let us know what you discover.

    Gentle hugs,
    Binney

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  • solfeo
    solfeo Member Posts: 838
    edited March 2018

    Thanks Binney4, I felt silly asking, but I really didn't know. It does seem conceivable that all the working out I have been doing could trigger something but if there is any generalized swelling or pockets of fluid it is so slight I can't detect it. Measurements wouldn't help because I have lost a massive amount of weight since the surgery.

    While I'm on a roll with the stupid questions, can someone tell me if we even have lymph nodes in that area of the back of the arm? As I said they are about halfway between axilla and elbow. I think it's too high to be supratrochlear nodes, and it's probably too far to the back as well, but I am nowhere near sure of that. Picture of the location below.

    I will do something about this medically but I want to understand more about what the possibilities are if I can.

    image

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  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited March 2018


    Solfeo,

    I would make an appointment with a dermatologist, he or she would know. There are so many different skin conditions, you really need an expert. This is the curse of breast cancer, every little thing that pops up is suspect. I've reached the six month milestone where a rash, a pimple or a cough is cause for worry.

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2018

    I occasionally have lumpy bits there on both arms; they appear and go away or unknown reasons, but the people doing my LE massage have never commented on or targeted them. It's probably worth having someone take a look so you can relax, but it doesn't sound like lymphedema or cancer to me.

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  • solfeo
    solfeo Member Posts: 838
    edited March 2018

    Good to know ksusan, thank you for sharing your experience.

    I'm probably never going to get an answer to the question about lymph nodes existing in this area of the arm or not. I did an online visit with a GP through my insurance company just to ask that question. She didn't think so but she was not 100% sure either and couldn't find a solid answer in her resources. I give up.

    I emailed my MO two weeks ago to try to get a referral to the lymphedema specialist just to see if she had seen anything like this before, and the damn MO didn't even answer me. I was trying to face up to it in baby steps, but my doctors always make everything harder for me. If the MO would have told me I needed the PET scan to begin with I would have had one, but instead she asked me if I wanted one. The answer to that question is always no, so it gave me room to squirm out of it and drag it on.

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  • xxyzed
    xxyzed Member Posts: 230
    edited March 2018

    There are no lymph nodes in that section of the arm. You have some in the axillary area and then the next ones are at the inner elbow area. They are joined by your lymphatic system which could become partially blocked with stagnant lymph fluid. The exact spot you have circled on your picture is where my swelling is worst and at times I have a bump feeling there that can be massaged outbut it is never multiple lumps.

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  • Rebah
    Rebah Member Posts: 1
    edited March 2018

    I have something like this on my forearm. I had a lumpectomy almost 2 years ago. I developed pain going down my arm to my hand about a month ago, that I first noticed when I was reaching up to a high shelf. I believe it's cording. About two weeks after the pain started, I began having swelling in my hand/arm. So along the path of the pain(cord) there is a tender lump. Cording is not very well understood, but I did find this description of subcutaneous nodules along the lymph vessel path:


    "Two studies described two patients with AWS that presented with subcutaneous nodules on the cord.14,37 In one case, the pathologist found the cord to be a lymph vessel that had undergone fibrosis surrounded by fat and granulation tissue with the nodule being a cystic enlargement of the lymph vessel."



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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Hi Rebah,

    Welcome to the forums!

    Just letting you know that this thread has been inactive for almost 2 years so you may not receive many responses here to your post.

    We do strongly suggest that you go to see your doctor about your concerns as no one here will be able to know what your symptoms mean.

    You may also find it helpful to create your own topic if no one responds here to your post.

    Wishing you well

    The Mods.

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  • solfeo
    solfeo Member Posts: 838
    edited March 2018

    The mods deleted their post, so now I have to edit mine to remove my response, or no one will know what I was referring to. Everything below remains the same.

    Rebah, not having definitive answers for myself I can't help much, but I do appreciate the info about nodules of the lymph vessel. I don't have cording, but I think there is a high probability that is what is going on with me. I am going to be more proactive about getting that referral to the lymphedema specialist. Thanks!

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  • solfeo
    solfeo Member Posts: 838
    edited April 2018
    These lumps are now multiplying. I finally got in to see the lymphedema specialist. She said she has never seen anything like this before but she thinks it's possible it could be an unusual presentation of the early stages if there is some kind of valve blockage that is distorting the lymph vessels. She wants me to wear a sleeve when I exercise and I'm going back for fitting on Friday. I'm fine with this, but it doesn't rule out cancer since she's not really sure.

    She did say we do have lymph nodes in this area, which was the question I had difficulty getting a solid answer to before. She said they are everywhere, but the charts only show the major clusters. Then she paused and said, "At least that is what I think," which is exactly what the online doctor said when she was telling me we DO NOT have lymph nodes in this area. I found neither of them convincing so I still don't feel like I know for sure.

    The breast surgeon dismissed them as nothing after barely even touching them, so now I've moved on to the oncologist, who will hopefully be ordering an ultrasound or some other kind of imaging soon.
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  • ksusan
    ksusan Member Posts: 4,505
    edited April 2018

    I hope you're able to get speedy imaging.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited April 2018

    Solfeo. Please let us know how it's going. I got weird little whiteheads between my finger webs once that lasted about a year.My girl had no idea what it was and she's been a therapist for many decades. I found out it was my “too tight for finger webs gloves. Ugh. Doesn't this ever get easier? It went away with custom gloves.

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  • Sophiemara
    Sophiemara Member Posts: 66
    edited April 2018

    It sounds very much like cording to me, which is a result of post op lymph node removal. It almost feels like small lumps connected together, it’s tight and hurts or sensitive to touch. I had it initially exact same place. I massaged the heck of it in accordance with what my lymphodema physio said and it went eventually. It is fairly common post op and my physio said women with slighter frames tend to suffer from it more.

    Lymphodema physios are usually well accustomed and insightful about this condition and with massage therapy and stretches it usually goes away

    http://www.breastcancer.org/treatment/side_effects/aws

    https://www.lymphnet.org/membersOnly/dl/reprint/Vol_25/Vol_25-N2_What_is_cording.pdf

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  • solfeo
    solfeo Member Posts: 838
    edited April 2018
    After the second appointment with the physical therapist I'm not so sure she's that much of an expert. She's certified but doesn't seem to have all that much experience, so that might be why she hasn't seen it before. I did see another lymphedema PT shortly after surgery, and she told me cording feels like spaghetti. I have never felt anything like that so cording hadn't occurred to me. I have another appointment today and I'll ask her about it.

    I am infuriated at my MO's office because I'm still waiting for my imaging referrals. I never really thought it was cancer until the MO said it would be very unusual but not impossible, and offered me a PET scan. Now they are making me wait and worry unnecessarily. I asked for an ultrasound first because I figured that could identify benign causes without the anxiety of a PET scan.

    I will keep y'all posted. Thanks for all the info and support.
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  • solfeo
    solfeo Member Posts: 838
    edited April 2018
    I finally got word that the imaging is scheduled for May 4th. Now the dread sets in waiting for it to be over. It really never does get easier.

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  • solfeo
    solfeo Member Posts: 838
    edited May 2018

    Ultrasound today. I'm still not too worried it isn't benign, but there is the mode you get into when diagnostic tests force you to confront the fact that anything could happen at anytime, and that no one is ever safe. Ultrasounds are not too bad, but with my luck it will be just suspicious enough to warrant more testing, and down the roller coaster we go. I do not have time for this.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    solfeo- did you have the PET scan today?

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  • solfeo
    solfeo Member Posts: 838
    edited May 2018
    I had the ultrasound yesterday and they didn't see anything but normal tissue. They could feel them but not see them.

    The MLD, and wearing the sleeve when I exercise does seem to be smoothing out the newer lumps that formed in the last few weeks, so I will keep it up. The ones that have been there awhile don't go away completely, but I won't be worrying about it anymore.
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