• FREAKED OUT!! Lymphedema... side effects... will life ever be the same?

    Asked by HearMeRoar on Tuesday, January 29, 2013

    FREAKED OUT!! Lymphedema... side effects... will life ever be the same?

    UGH! I'm working hard at being positive, really, really I am! I am 36 with two awesome kids a great husband and a killer brand-new job! I'm reading people's experience on here and it freaks me out... I don't "work-out" or "exercise" on a regular basis but I love being silly, running around with my boys hiking, biking and doing things I feel like doing with/ for my boys. It seems like there is a potential for a lot of long-term side effects. I HOPE THIS DOESN'T HAPPEN TO ME! ALL I HAVE TIME FOR IS A SURGERY AND SEVERAL MONTHS OF CHEMO! I gotta be me again after this! XXX! Okay... thanks for listening.

    14 Answers from the Community

    14 answers
    • Clyde's Avatar

      I know where you are coming from and felt much the same way. Try to calm yourself. My experience has been that pre-surgery/treatment was far scarier than post. And while no one can predict exactly what your future holds, mine is that there is nothing so far that I have discovered that I can't do that I did before. There are some adjustments I had/have to make, but very minor in my case. Think of it as a bump in the road, not a cliff and it will be easier to deal with each step.

      over 3 years ago
    • GregP_WN's Avatar

      I am a 24 year survivor, with my most recent diagnoses and treatment 4 years ago. It took me a year or so to get back to being like I was before, during my first two dx's. After that, I couldn't really tell in my daily life that I ever had cancer. This time, I am 4 years out, still not quite as quick and nimble, (ha ha) like I ever was, but I am getting back all the time. I've gained all my weight back, plus some. Still fighting side effects, but I don't let any side effect or cancer in anyway, limit me from doing what I want to. When I say I just can't do something anymore, I think it has more to do with the fact that I'm 53 now, instead of 28!

      Keep moving, don't ever say you can't do something, just do it. ..Hey, I think there's a slogan there somewhere.

      over 3 years ago
    • Mel's Avatar

      Breathe!!. :) completely understand what your saying. Will life ever be the same??? Hmm good question I stlll wonder that!....Staying positive can be hard and there will be alot of up and down days and everybody handles everything differently in our daily lives to the Meds. Now I mind you I do enjoy working out and have probably slacked in the last year or so but when I do it makes me feel so much better, but I think personally having those 2 awesome kids and that great husband is going to make you push forward and be who you want to be who you are now!. There are side effects to all this stuff and I prayed that certain things wouldn't happen to me some did some didn't but nothing has stopped me from doing what I want (maybe a smidge tougher at times) I'm not great at my words but I hope this helps. Thinking of you!!... :)

      over 3 years ago
    • nancyjac's Avatar

      First, take a breath. Second, do you have lymphedema or are you just stressing about the possibility of getting it? If the later, end of conversation. There is no more reason to stress about lymphedema than there is about getting run over by a car tomorrow.

      Stay focused on what you have, not what you don't have. What you have need all the attention and energy you can give it, without wasting it on random what ifs.

      over 3 years ago
    • SDomiano's Avatar

      I wished it wouldn't happen to me either, first I noticed I could not remember things, things people just told me and then it was days, I couldn't remember what I did the day before now I forget what I am talking about in mid sentence. This is the worse feeling, I use to be a wiz at math now I can't even add with out writing it down Chemo Brain they call it does it go away or am I scared for the rest of my life...Now I am going through Chemo for the second time what's going to happen this time?? I hope to God I am me again soon too!

      over 3 years ago
    • SueRae1's Avatar

      Being silly is one of the best way of dealing with this. I find silliness and a great sense of humor can help you get through a lot. With any luck you will have the energy to many of the tings you enjoy, just not as much or as long as per-treatment. I still have the energy to take a Pilates class once a week, walk for 10-30 min most days. Go to plays, movies and dinner with friends (though with a suppressed immune system I need to careful in crowed public places). The first 24-48 hours after treatment are usually the worst energy wise. You will learn what you side effects are, when they kick in etc. My biggest issue was figuring out how not to over extend myself when feeling energetic especially in my off week.

      over 3 years ago
    • princess123's Avatar

      Once I went on chemo break ( I will have some sort of treatments for life) I started feeling better. Each month it gets better.
      I do get tired easy but I still have the cancer in me and chemo can take 6 months to get out of your system. Just keep a positive attitude. I think support from my family and friends has helped me a lot too.
      Take small walks regularly to keep your strength up. Keep smiling and don't quit on yourself.

      over 3 years ago
    • gogolf's Avatar

      You will be fine! I do not blame you for freaking out but take a deep breath and go with the flow for just this short amout of time and live your 'new normal' while you are in treatment. Do not worry about lymphdema, that was one of my first signs that something was wrong. It does not put many limits on you, I have played golf this whole time. My only limit was one I put on myself from vanity about having a swollen arm, now I do not care who sees it and I do not even try to hide it with long sleeves. Of course I can't relate how difficult it is to go through cancer treatment with children at home because I am now a grandmother but let them help you and I would guess they would like to be there for their mother when you need them. There is a great book written by a mother about your age going through treatment. I beleive the title is something like 'Bald In The Land Of Big Hair'. I have little sayings buy my computer and one of them came from that book, it is, 'I have cancer, cancer does not have me'. You go girl, you can do it, Hugs

      over 3 years ago
    • gwendolyn's Avatar

      It's easy to get freaked out by the long lists of side effects and complications. Please try not to worry about things that may not happen to you. Easier said, then done, I know! Each stage of treatment was easier for me than I initially feared and I tried to reassure myself that the next stage I was dreading would go better than planned, too.

      Take comfort in the fact that your youth and active lifestyle will help you tolerate each treatment phase better than most people. I promise you that.

      over 3 years ago
    • gwendolyn's Avatar

      One more suggestion: Try not to spend too much time on the Internet reading horror stories. It will give you the distorted impression that all the complications are very common.

      over 3 years ago
    • Heather's Avatar

      Lymphedema can be managed. I wear a compression sleeve on my arm and I should be exercising to prevent swelling. Physical therapy is also great (I still need to go). Just don't freak out. I had 10 lymph nodes removed and just am super careful with that arm (no needles, no blood pressure, ect) in the affected arm and you should be okay! Don't worry!! There are some really easy exercises that you can do at home, like walk your fingers up a wall - super easy!! :)
      Hang in there!!!!

      over 3 years ago
    • polgara's Avatar

      So many great suggestions already made, try to stay postitive you hubby and your children will be your greatest inspiration - mine are and I know that you can do this. I started my journey in July 12 and finding the silver lining has helped me. When I lost my hair my daughter told me it wss a great way to save money on shampoo.Is there a local cancer group maybe you can speak with another survivor. My sister is an eight year survivor and she has not had any issues with lymphedema at all. She told me when her drs recommend a dbl mastectomy she said well I rather have no breasts and be alive. So do I want lymphedema no but if it means that removing my lyphnodes will keep me around a little bit longer than take them. We all been frighted this is a frighting experience but you are strong and you can do this. We are all here to help you.

      over 3 years ago
    • Carol-Charlie's Avatar

      Oh come now Roaring... (being a smart aleck) You just described more exercise than I do in a month. You are you dear and you are the only one qualified to do that. I had two years of chemo starting at age 62. I have three sons, two step sons and three step daughters. I found their father on a street corner when I was 37. (I'll share those details later) You will return to being you.... My thing was I wanted to dance. my hubby and I love to dance. After chemo, I danced at my grandson's wedding, I held two great grandchildren.. (play with them now) I had stage IV Ovarian... I have been cancer free for 7 years. Life is slightly altered... my fingers are numb and sometimes I type some really weird typos. But I walked the beaches of Cape Cod, as I'd dreamed I would. I traced my ancesters who arrived in USA when it was the colonies.. in 1635... We stood by graves in Boston Churchyard... This summer we're going down to Houston to visit my brothr... Give your Oncologist what he/she asks for this year. You can still work and do the basics. The boys will understand.. Your main job... KILL THIS CANCER!!!! Then trust me God will help get everything you want back to you... sometimes even better... for WE ARE WOMAN... HEAR US ROAR!!!!!!

      over 3 years ago
    • Angel_1's Avatar

      What I understand about it, it all depends on how many Sentinel nodes and axillary nodes are taken out. Sometimes if only a few are taken out, you will not experience it. I have lymphedema on my right arm. My surgery started March 31, 2011 and has been on-going. But, just started the therapy for lymphedema today. They say with therapy and compression garment, it should help. I have been able to do everything I did before the surgery, except for heavy lifting, but only been a few months out since my last major surgery. Hope this helps.

      over 3 years ago

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