Question on LE diagnosis, help please:-)

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HouseDivided
HouseDivided Member Posts: 21
edited October 2018 in Lymphedema

Apologies in advance for the long post...

About two months ago my left arm near the elbow swelled up very noticeably. It went down a little but has stayed quite a bit larger than the right. When my daughter measured it, there was anywhere from 3/4" to 1-1/2" larger than the right from the wrist to the shoulder. I felt like my left foot was swollen and it measured anywhere from 1-2" larger than the right from the foot all the way to the thigh. The arm feels heavy and tight.

I saw my MO for a normal follow up and he said it looked like lymphedema but my lumpectomy, radiation and SNs were removed on the right side. So he ordered an ultrasound on my arm and leg to look for blood clots, both came out clear, good blood flow. Also ordered a CT Scan of my chest with contrast to check for pulmonary embolism (clear) and lymph nodes (looked good).

So now he says we should do an MRI of the arm to make sure there's no growth. And see a PT to see if they can reduce the swelling.

I asked him since the chest lymph nodes looked fine could it be an issue with lymph nodes somewhere else in the arm and he said he'd feel it if it was in my neck or under my arm.

So my questions:

If you have LE, can you (or your doctor) feel the blockage?

With a difference of up to 1-1/2" bigger arm and 2" bigger leg, with no blood clots, does that mean it's LE? A lot of what I read says if you rule out blood clots and other issues, then it's LE.

I feel like why have an MRI of my arm to rule out a growth when the leg is swollen too? I don't think I have a growth in my arm that is somehow affecting the leg.

Should I be seeing someone else to diagnose this?

I have heard from a few people that they got LE on the opposite side of their treatment but I know it's rare. Any advice you can give me is greatly appreciated!!!

Thanks!


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

    Hi, HouseDivided,

    This is a fairly strange situation, as LE generally appears on the side where your surgery/radiation was. Did you have any surgery at all on your left side? Do you still have a port, and if so, is it on the left side? There are times when port placement can impact both the left arm and a leg or both legs, as there is a large lymph vessel there that drains both legs and the left arm, and can be blocked by the port.

    The diagnosis of LE is made by a specially trained LE therapist. They evaluate by both measurement and physical examination, as they're familiar with what LE feels like under the skin. Good idea to make an appointment with one. Here's how to find a qualified LE therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified...

    Hoping you soon have real answers and a "fix"!

    Gentle hugs,
    Binney

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited September 2018

    Hi Binney - thanks for your comments!

    I didn't have a port on the left side. As for surgeries, I have had a left knee replacement and a myomectomy and hysterectomy.

    I will find a qualified LE therapist, thanks for the recommendation.


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  • Gogirl4321
    Gogirl4321 Member Posts: 1
    edited September 2018

    HI. I completely relate to your story. After ending weekly chemo and having my first herceptin transfusion without added chemo cocktail, my opposite arm swelled up! It aches and feels heavy. Ruled out blood clots and met with a LE therapist. My ankle and foot on the same side as lumpectomy and lymph node removal also swollen. It has been five weeks and continues to swell, especially when hot and using my arm or hand. Port is working fine. Radiation treatment started post edema.

    I wear compression garments and rest my arm and elevate my foot when I can. I wonder if my swelling is related to Herceptin or if it truly lyphedema. The longer it goes on, the more I believe it is lymphedema. The Herceptin will continue for 8 more months. The discomfort and having to cope with yet another side effect, has been mentally challenging. I thought I was out of the woods with side effects, when chemo ended. Please keep me posted on what you learn about your condition. I will see the LE therapist for a second time this week. She did not think it was lymphedema because it is the opposite arm from surgery.....I hope it is not lymphedema since this is a chronic condition. Good luck to you and again, keep me posted and I will do the same.

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited September 2018

    Hi Gogirl! Thanks so much for your reply. What side is your port on? I've heard LE can sometimes happen on the side the port is on. Did your LE therapist think your foot wasn't LE either? With that on the surgery side it would seem like a definite possibility.

    I've been on Femara for almost two years now and I've heard that one of the SE's is inflammation of joints but since it's almost my whole arm (not the hand yet) and the whole leg and foot, it seems like that is more than inflamed joints.

    Frustrating to be different than the norm and not get answers.

    I'll definitely keep you posted on what I find out and please stay in touch on your experience. I'll be thinking of you!

    HouseDivided

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited September 2018

    Ok I have an update. This morning I went to get an MRI of my humerus. The tech said he wanted to do the forearm too since there was obvious swelling. Took almost two hours.

    Then I headed to the LE Specialist and she did a history and measured my arms and legs, checked my back and chest, and said that I definitely have LE since everything else (other than getting the MRI results) had been ruled out. She said it's Primary which is very unusual since you have the genetic marker at birth and usually you see symptoms early on and I am 59. She said you had to have some injury, surgery or incident on the side of the LE and I haven't. I'm not sure what to believe but the treatment is the same regardless. She gauged me at between Stage 1 and 2.

    Today my left arm measured 17 cm larger than the right from the forearm up, hand and wrist are not swollen. I forget the difference in the legs but definitely swollen along the whole thigh through foot.

    I had a compression treatment today and she said I will eventually need to get my own machine for home after PT is done. She ordered compression stocking for my leg and bandages for the arm and said we will wrap it for 3 weeks and try to reduce it and then get a custom garment made for the arm. I go back Tuesday.

    I asked her about which side I should use for BP, IV's and bloodwork since I had nodes out on the right and she said use the right since the left is symptomatic could easily get infected so I'd have to take the risk on the right. Not sure I like that.

    Anyway, that's the update so any advice or comments are welcome! Thanks!

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited September 2018

    Hello HouseDivided,

    I read your post with interest.

    I was puzzled by the fact that you seem to be saying you have lymphoedema in the left arm, which is not the surgery side. What do you mean by symptomatic? Have you been told that you have lymphoedema in both arms and is this due to the fact that you have been told you have primary lymphoedema rather than the secondary lymphoedema caused by breast cancer surgery?

    Am I right in assuming that you have been told that breast cancer surgery that affects the arms, can also cause it to occur in the legs or, indeed, anywhere else in the body?

    You might like to read the book "Let's Talk Lymphoedema" by a well known Professor and consultant at one of the well known London, UK, hospitals. It explains everything clearly.

    Wishing you well.

    Sylvia xxxx

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited September 2018

    Hi Sylvia - yes, my cancer was on the right, three Serial nodes were taken on the right and I had targeted radiation only on the right. I have no symptoms of lymphedema on the right side of my body. My left arm is 17 cm larger overall (she measured and added all the measurements together) than the right arm. The left leg is also considerably bigger than the right. They feel heavy and tight and I have been very tired.

    So the LE Specialist said because it's only on my left side and all my breast cancer and treatment was only on the right that it must be Primary LE. It's just weird that I'm 59 and never had any LE issues before and now, two years after breast cancer I have LE.

    My MO was also confused because I had no symptoms on the right, only the left. So are you saying that this could be caused by the cancer treatments even if it's only on the opposite side?

    I will definitely get the book you recommend, thanks!

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited September 2018

    Hello HouseDivided,

    It is very strange about the condition of the left side of your body, both the arm and the leg. I know that chemotherapy treatment can cause lymphoedema. You will find a section in the book I mentioned that discusses the fact that the taxane drugs, paclitaxel (Taxol) and docetaxel (Taxotere) causes lymphoedema and remember that chemotherapy drugs are systemic and go throughout your body. Breast cancer surgery causes it, as does radiotherapy.

    Have you had any other kind of surgery during your life? Lymphoedema is not confined just to breast cancer surgery. My information is that lymph nodes are situated in different parts of the body and any kind of surgery near them can damage the lymph system. I have also read you can get lymphoedema years after treatment. Have you had any surgery near the groin where there are lymph nodes?

    I had lymphoedema come back in 2017 without warning after I had had a flu vaccine for the first time since 2005. I had lymphoedema for a little while after finishing treatment but it just seemed to disappear.

    Since the lymphoedema in 2017 (which does not seem to bother me) I have had problems with a brownish staining around the ankles of both legs and I have been told this is to do with problems with the valves in the vein. I have read that the lymph system and the vein system are quite close in the body so I am thinking that the vein damage is somehow connected to the damaged lymph system.

    I hope this helps and I hope you read the book and look forward to your opinion.

    Best wishes.

    Sylvia xxxx

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  • RuthElizabeth
    RuthElizabeth Member Posts: 103
    edited October 2018

    I’m 3 years cancer free, but got lymphedema right after my last chemo. One Huge suggestion to everyone.... if you need to see a therapist, try to find a LANA certified therapist. You won’t be disappointed...

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