Anyone have LE on opposite side of breast cancer and treatment?

HouseDivided
HouseDivided Member Posts: 21
edited July 2019 in Lymphedema

HI - I was diagnosed with breast cancer almost two years ago, had a lumpectomy on my right breast, then SN removal on right side and targeted radiation.

Then about 6 weeks ago my left arm swelled up without an injury. It went down a little but is still noticeably larger. I saw my MO yesterday for a follow up and he said it looks like LE but that is weird since I had nothing done on the left side. He ordered some labs, a doppler ultrasound and a chest CT with contrast to check for blood clots.

While I wait for those results, I wondered if anyone has had a similar experience.

Also, it sounds like you shouldn't have lab work or blood pressure, etc. taken on the LE side but that's the side I use after the SN removal on the right side. I get the blood test Monday, should I just have it on the left side as usual?

Sorry for the questions, I know this is early in the game for this but it seems like almost everything I'm reading says the LE risk on the treated side although you may have it on both sides.

Any advice or stories are welcome! Thanks:-)

HouseDivided

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  • StillKicking
    StillKicking Member Posts: 115
    edited August 2018

    My cancer was in my left breast. I had a bilateral mast. and now have lymphedema in the right arm. I've always wondered if they did the checked the wrong lymph nodes during surgery.

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited August 2018

    Thanks so much for responding StillKicking! My left leg and foot are swollen now as well. Not sure what is up with me but it's good to hear your story. Take care!

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  • WAJ
    WAJ Member Posts: 11
    edited October 2018

    To HouseDivided: I had R Mastectomy 12/2012 with 20 lymph nodes removed...only 1 positive. LE onset halfway thru chemo. Fast forward almost 6 years later...I now have LE from head to toe & all extremities...literally. Ive seen numerous doctors & none have a clue. I have a Flexitouch LE pump I have to use 3-4 hrs daily. I’ve learned we are all different & react differently.

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited October 2018

    Thanks WAJ. I'm hearing from the medical staff I am working with that the lymph system is unique in most people and so LE can appear on the opposite side or anywhere in the body although it's typically on the surgery/treatment side.

    I've been lucky to find a great LE therapist who has been working with me to reduce the swelling. I am down 7" in my leg and 4" in my arm. I got the Flexitouch LE pump Friday and do it two hours a day. I can't imagine 3-4 hours a day! I also got measured for custom sleeves, I'm lucky that there is a manufacturer in Phoenix so I am buying direct for $100 a sleeve.

    I feel for you, I am really praying that the LE doesn't start to affect my other side and body.

    I also say regardless of the cause, the treatment is the same so let's get on with things!:-) Keep in touch please!


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  • herskaren
    herskaren Member Posts: 1
    edited October 2018

    I have been looking thru out the yrs for a site like this with no lucks. I just found this site and I also have a question..I had 21 lymph nodes removed under my left arm..21 yrs ago..plus did chemo & radiation. As time went on..I saw my right breast grow bigger...then my right upper arm..& it's also in my right leg and thigh as well. Is this common? Can anything be done for the right side? If so, what? Also..will be flying soon..do I need to worry about it? I've flown about 4 yrs ago with no problems. So I should be ok? I guess I am worried cause I'm getting older..71 young.Hoping someone can give me advice. Thank you.

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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2019

    Experiencing lymphedema 2 1/2 years after surgery on the opposite side from where the lymph nodes were removed. I have seen a lymphatic therapist 3 times now, and she describes it as very unusual for it to occur on the opposite side and wants me to see the oncologist, since she is not a diagonstician. I have not been able to get in to see the oncologist. Initially swelling in R-arm 0.8 -3.6 cm larger than left arm. I wear a compression sleeve, do self-massage. At sessions, she manually massages as well as using a pump massage, and has given me a few exercises to do. Swelling has gone done a little since initial visit. Has anyone else experienced "lymphedema" on the opposite side? I initially went to urgent care who thought it could be a clot, but ruled that out after an ultrasound.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

    10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited July 2019

    Hi BlueGirlRedState - I started this thread because I have lymphedema on the opposite side of where my breast cancer was. It's very unusual but I have found several people this has happened to. I've been told that even though bc, sn removal and treatments can cause LE, any trauma to the body can result in LE. I was also told by a rep at Tactile Medical that she has seen many people with LE on the opposite side.

    I wish you the best of luck in dealing with this, let me know if you have any questions...

    HouseDivided

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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2019

    HouseDivided - was treating the opposite side any different than treating the usual/expected side? Right now I am wearing compression sleeve and glove (loaners, I have a fitting scheduled for next week), and I am doing lymphatic massage, 1-2x/Day. How long before you noticed any reduction in swelling? Someone posted this link for a video on self massage which I have found very helpful. A cancer survivor does the massage while her therapist explains what/why she she is doing it, from India Lymphedema Foundation https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be . The video suggests it might be a couple of months of regular massage to see reduction, as lymph is drained and the body learns new routes to expell. A second video is very similar, Mercy Health, sequences a little different, but I like the presentation in the first better, https://www.youtube.com/watch?v=Up_sIKnZ-_g .

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  • kcrd4766
    kcrd4766 Member Posts: 22
    edited July 2019

    By the way, this is interesting to hear about the turmeric. Have you added it back in?

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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2019

    Thank you for the reminder about turmeric. Once I'm in a routine, I'm pretty good about doing things I think are healthy, like regular turmeric. I have not added it back in on daily basis, but am trying more ways of having it, such as fruit/yogurt (or maybe ice cream) shakes.

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  • HouseDivided
    HouseDivided Member Posts: 21
    edited July 2019

    Hi BlueGirlRedState - yes the treatment for LE is the same for either side and whether it's primary (at birth) or secondary (like we have).

    My treatment started with my arm being wrapped tightly for about three weeks and going to PT where she would unwrap it, do massage and I would use their Lymphactic Pump on my leg and arm. I also wore compression socks on my left leg. After those 3 weeks I didn't have the wrap anymore but still went in twice a week to get the massage and use the pump. It took about 8 weeks to see noticeable differences. She then ordered me a pump of my own and once I got that I didn't have to go back to PT unless I had a flare-up. So now I do the pump for two hours a day (one for stomach and leg and one for arm). Once my leg got better it has only acted up if I am on it all day or not keeping it elevated part of the day. Oh and I needed custom fitted compression sleeves since the LE caused my upper arm to be much larger than the lower arm and hand. So I wear the arm sleeve every day, most of the day and night. Hope you get control of it soon!

    HouseDivided

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