Freaked out about Lymphedema

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its_real
its_real Member Posts: 23
edited May 2019 in Lymphedema

Hi All - How soon after surgery can lymphedema show up? I cannot tell if I am overreacting/freaking out, is my arm sore and slighly swollen from surgery or is it lymphdmea. I had a lumpectomy and axillary dissection on March 5th, 8 nodes removed. In the menatime pathology reports came back with bad margins so heading back to surgery on Friday for mastectomy F*&K!!!

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  • DesertPup
    DesertPup Member Posts: 53
    edited March 2019

    I don't know much about your Lymphedema question but I just wanted to say you'll be fine. I'm about 8 weeks out from my BMX and it wasn't close to as bad as I thought it would be. Set up your bed and rooms to be your cozy spots, let people do EVERYTHING. I stocked up on all the good smelling body and facial wipes, the lotions I like, tons of nice skincare and a big pretty plant for my room. Tried to make it as spa like as could. Ordering a food service helps too. To have healthy cooked meals was a god send.I get really cranky when I'm hungry. Just take so much care of you :)

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2019

    ItsReal, I'm so sorry for that very crummy news. Looking forward with you to only good news after this Friday. You can do this!

    As to the question of lymphedema, what you're experiencing is still likely soreness and swelling from the surgery--early days yet. Always a good idea, though, to make an appointment as soon as possible with a well-trained lymphedema therapist. S/he can answer your questions, give you some personalized risk reduction tips, and may even order a compression sleeve/gauntlet to use prophylactically for exercise and travel.

    Wishing you smooth sailing through the "adventure" ahead. Please do let us know how it goes.

    Gentle hugs,
    Binney


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  • blah333
    blah333 Member Posts: 270
    edited March 2019

    It can happen right away but your body is still probably just recovering from surgery! It was only 11 days ago..... you're in healing mode


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  • gb2115
    gb2115 Member Posts: 1,894
    edited March 2019

    It could just be the surgery at this point, but I second the advice to get hooked up with a certified lymphedema specialist. I had quarterly sessions with one for a year and it was great to have monitoring and support. I can still call her anytime if I need something.

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  • its_real
    its_real Member Posts: 23
    edited March 2019

    Thank you everyone. Feeling much better after hearing from you all. I asked for a referral to a lymphedema specilaist and have to call the Dr. tomorrow to get the info. and plan to get in as soon as I can. In the meantime I watched a video on self massage and did some of that last night - figure it can't hurt even if what I am experienceing is not lymphedema but after affects of surgery.


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  • LymphActivist
    LymphActivist Member Posts: 64
    edited March 2019

    Usually there is post surgery swelling for the first week or two. There is a natural healing that should take place after then. Lymphedema can be present if the swelling does not go away in a few weeks. But if you have radiotherapy after the surgery lymphedema is more likely, but doesn't show up until months after the radiation.

    In any case, get measured by your therapist as soon as possible, preferably before the surgery and radiation to get a baseline against which future monitoring can be done. Also, find out from your medical team how soon you can start exercising to aid healing and to prevent lymphedema.

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  • RebeGue
    RebeGue Member Posts: 1
    edited March 2019

    Hello I just joined this evening and saw your post.

    I had a radical mastectomy with axillary lymph node dissection 2 weeks ago. They removed 34 lymph nodes and I am having pain, swelling and limited mobility in my arm. I saw my Oncologist today and we discussed radiation therapy and the increased risks I face with getting lymphedema because of all the lymph nodes removed. He is going to send me for lymphedema therapy and physical therapy. I am so scared I do not want to get lymphedema.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Hi RebeGue! We want to welcome you to our community here at BCO. We're sorry that you find yourself here, but we hope you find this to be a supportive and information place as you continue with your treatment.

    It sounds like your doctor is being proactive in sending you to a lymphedema specialist and getting the ball rolling on that sooner rather than later. As others have mentioned, the swelling you're experiencing now can very well be related to your recovery from major surgery. But in any case, given your risk factors for lymphedema, it could be highly beneficial for you to get started with therapy early. Please keep us posted on what you learn from the lymphedema doc, and best of luck on your continued recovery!

    The Mods

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  • its_real
    its_real Member Posts: 23
    edited March 2019

    Hi RebegGue - yes this cancer journey is really scary so much to htink about. What works for me is to educate myself and getting to a lymphedema specialist is the next step so you are on the right track. I was really gald that the overwhleming fear subsided for me - the feedback from folks on this site helped me enormously so stay connected if you can.

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  • its_real
    its_real Member Posts: 23
    edited March 2019

    Thanks Lymphactivist - unfortunaltey the surgery train has left - I will be seeing a lymphedema specialist at some point after my next surgery. Appreiate your comments and support.

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  • sarahchase
    sarahchase Member Posts: 1
    edited March 2019

    I’m six weeks out from a BMX with axillary lymph node dissection...I had 30 nodes out in total. The PA at my last TE fill said I was fine to resume spin classes which I did regularly prior to treatment as long as I listen to my body. Some of what I’ve read seems to indicate that jumping back into intense exercise can trigger lymphedema. Does anyone have any experience with getting back into exercise with a new lymphedema risk? Would love some insight. I don’t have an appointment with my lymphedema specialist until next week. Any advice is appreciated

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Hi sarahchase, and welcome to our community. Take a look at our article here:Lymphedema and Exercise

    We hope this is a helpful resource!

    Warmly,

    The Mods

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  • Oceanlove25
    Oceanlove25 Member Posts: 28
    edited March 2019

    Hi its real...I totally understand you're freaking out about the lymphedema. I had surgery Feb. 5 and one axillary node removed. In talking to my nurse navigator, I was high risk due to the node and my weight and bmi. It was recommended I go in to a lymphedema specialist to be evaluated. It turned out I was had stage 1 lymphedema. I never would have known. It was caught early and I am going to therapy twice a week for treatment and was taught lymph drainage to do myself. It is a godsend. Also I got a sleeve which I wear during the day and remove at night. It is especially important to wear everyday while going through radiation. The PT is hoping that after radiation I may only need to wear it every other day. The key to lymphedema is keeping it under control. Finding a therapist who specializes in lymphedema is also key.
    So I still freak out? Sometimes but only a little...lol...just hang in there and take it one day at a time. I hope hearing my story helps.

    Sending hugs!

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  • its_real
    its_real Member Posts: 23
    edited March 2019

    Thank you all for such wonderful su[pport - my mastectomy surgery on 3/22 went well - onward to radiation and seeing lymphedema specialist to learn how to do everything I can to prevent lymphedema.

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  • its_real
    its_real Member Posts: 23
    edited March 2019

    Trying to educate myself about the 'next' phase which will be radiation - does anyone have suggestions about good resources - I would esepcailly like to learn about the risk of recurrence for doing vs. not doing radiation and what are teh increased risks for lymphedmea with axillary node dissecion - I had my mastectomy on March 22nd - doing well and got clean margins YAY. I have also read that having used taxanes increases the risk for lymphedema when receiving radiotion. I imagine I will agree to it however I really like to know what my choices are - there is so much taht feels out of my control. I have an appt. with my oncologist on Tueasdy and am trying to gather soe quesiotns to ask her.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2019

    it’s real - I know you are anxious about having radiation and to be sure there are risks like any other treatments. I had 33 treatments and had no issues except mild burning and fatigue halfway through the treatments which was expected. However, there are countless women who did suffer debilitating side effects from intense burning that was long lasting. I’m not sure you can know for sure if you will experience those side effects until the treatments start.

    As for the risks in electing not to do radiation I’m sure your medical team will provide you with information and percentages of recurrences. Someone on this board can cite some resources for you to read so you can be prepared. Frankly I just decided to do it because I dodged chemo. I was so relieved I didn’t really care about the possible side effects. There are possible long term issues with radiation like lung scarring but I didn’t want to take a chance on not doing any treatment. There are women who opted not to do any treatments. It’s your call.

    Several ladies in my support group at church have lymphadema. It is brutal for them. One lady however had this surgery done in Houston that had made her’s more tolerable. One thing I recall my MO saying about it is you don’t want to get it. Duh. I do remember her advising me not to do any heavy lifting. Also one of the ladies admitted she kept on doing what she was doing which was a lot of manual labor and got lymphadema 2 years later. We all thought you get it right away but that’s not the case. A lymphadema specialist told usIt can show up years later. Ugh. I had one micromet in my SN. Obviously the more lymph nodes removed the greater the risk.

    So my advice would be do your homework and once you decide what to do don’t let anyone bully you into doing something you don’t want to do. It’s your body and your life but just be sure you don’t second guess yourself or look back and wonder what if...

    Good luck!

    Diane

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    Check out Proton Radiation. It still has some of the same risks but there is no "exit" dose. Protons can be programmed to stop & deliver the energy into the tissue that is being targeted. So it does lower damage to healthy tissues. I did proton rads last month, finished 10 days ago and am practically all healed from the (fairly gnarly by the end) burns I got. Protons not available everywhere. A few places (U Penn was one) have observational non randomized clinical trials in Proton Rads.

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  • Ginaslupe
    Ginaslupe Member Posts: 1
    edited May 2019

    I had breast implants removed now I’m having lymphadema in my right side I can’t take this pain please tell me what I can do thank yo

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  • Leidy222588
    Leidy222588 Member Posts: 18
    edited May 2019

    Hi, Ginaslupe. I have lymphadema, but mine is not painful, just a tight feeling sometimes in my index finger and arm that is relieved by wearing my glove and sleeve every day. If you are in bad pain, maybe it's something else...how long ago was the surgery? Also, if it is lymphedema, a lot of my truncal issues resolved slowly over time, and now it's just my finger and arm. I hope the passing of time helps you, too, if that's what it going on.

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  • lakewoman
    lakewoman Member Posts: 267
    edited May 2019

    Had rt mastectomy in 2008.sentinel nodes only removed. Mets to lungs in 2018..on meds for that .Then PET found nodule in my " 'left'over" 😊 breast was TNBC..Mastectomy with only sentinel nodes removed in May of that year. Bottom line ,month later lymphedema of left arm!!!..Wear sleeve and gauntlet..Going to travel ..first airplane ride since all this. Do I wear sleeve on unaffected arm also? TY in advance ..

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