I don't think it's lymphedema?

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runnergirl4life
runnergirl4life Member Posts: 34
edited June 2014 in Lymphedema

Hi all,



I had a lumpectomy and sentinal lymph node biopsy on December 2, 2010. It was on my right side so the scar from the lumpectomy is parallel about 4ish inches below the one in my armpit from the biopsy.



I had no drain tubes or anything and healed quite nicely. Just occasional soreness from doing too much too soon. About a month ago out of the blue the area right below the lymph node scar was tender and inflamed. It has not completely gone away since. I've iced and taken ibuprofen and rest and it does seem to help but easily gets worse when I've been sitting up a lot. I'm a runner and this doesn't aggravate it at all.



I finally called the surgeon today to make an appointment. I received a phone call back saying that he wants me to have a mammogram before I come in. I'm very reluctant to for two reasons: one, the affected area is on the side in my armpit and two, it is a tender area.



My question is is that has anyone ever experienced this?



TIA,



Reneé

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  • ptdreamers
    ptdreamers Member Posts: 1,080
    edited February 2012

    Runnergirl, Personally even though it is tender I would do as the surgeon suggests and get the mammo before you see him. I am basing this on what you have said. You haven't identified any precipatating factors such as a flight, heavy lifting, etc. It may be nothing serious or it may be something. Having the mammo will at least rule out masses that need further evaluation. Best of luck.

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited February 2012

    Thanks, ptdreamers. I did fly last October and just this past week, but with no side effects. My arm and hand feels fine as well.

    To me, it feels like scar tissue as it feels hard right along the lower side of the scar. It's just weird to me that it showed up so suddenly out of the blue.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2012

    Gosh I hate to guess, but it could be fibrosis or an infection or both.

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  • ma111
    ma111 Member Posts: 1,376
    edited February 2012

    Get the mammogram before you go to rule out nodal involvement. Yes mine hurt when I had nodes in the armpit and they mashed it for the mammogram, but they will need to know if it is a node. The pain is less then what you have experienced thus far.

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited February 2012

    I emailed my doctor because I can't take more time out of my schedule until next month (I'm a bookkeeper) and he said to keep my appointment with him and schedule the mammogram when I can.

    Infection is something I've thought of as I've had issues lately with not feeling well and I never get ill.

     Thanks, ma111. It is a good idea to at least have it done so they can rule out other things. 

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  • ma111
    ma111 Member Posts: 1,376
    edited February 2012

    If you start running fever, your family doctor can put you on antibiotics. My family doctor communicates well with my other doctors and she has better office hours, no time off needed to see her.

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited March 2012

    Well I went to the dr and he immediately set me up for several stat scans and mammogram. Bone scan, ct scan, and ultrasound all found several tumours from the neck down to he chest. A but shocking. It was the last I'd expected. All signed up now for treatment starting in a little over a week.



    Amazing enough I'm much calmer than the initial diagnosis in November 2010.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012
    Runnergirl, that is a shock!Frown So glad you took care of this so quickly, and that everything is in place to begin treatment. Huge hugs, and prayers for a great response and a quick return of NED! Thanks so much for letting us know, as we want to be here for you.
    Be well!
    Binney
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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited March 2012

    Thank you, Binney.

     Treatment was to start this afternoon, but received a call from the nurse saying that I needed to reschedule because I just had the biopsy appointment yesterday. The dr. wants to have the pathology report first. Which is understandable. In all my scheduling and talking to doctors and nurses at all other times, timing wasn't mentioned at all. I'm highly irritated as I worked hard to get everything done in the right way and a timely manner. 

     My daughter is getting married on the 1st so the dr. didn't want me to start treatment next week and not be feeling well so treatment got pushed forward two weeks from today. It is a bummer as I've had an increase in pain and loss of feeling down my right arm and hand every few days. It's strange, I was pretty upset and pretty emotional about having to reschedule. I guess it's just that I want to get this thing moving.

    I looked at my calendar to see how the rescheduling was going to mess with things and it looks like treatments will have to not be consistent a couple times due to a vacation I just booked the other day and a graduation. It's just the way it is and I'm determined not to let this get in the way of living my life and not missing out on important things. On another note, it will work out better for the 5K and two half marathons coming up as treatments will be the week following each race. And I'm determined to do them.

    Now to figure out the language everyone speaks here. Is there a page explaning acronyms? I'm much to overwhelmed to try to figure them all out. Lol.

    Thanks for encouragement, Binney!

    Renee' 

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  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    So very glad you had it checked!  You know the board will be here, no matter who is on it.  Take care of yourself!

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited March 2012

    Thank you Galsal. Me too!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Oh, Renee, being put off is so hard! I'm so sorry! When it's happened to me it was like I was psyched for an extreme sport and then -- bam! -- they called off the meet.Surprised All that prepping yourself, getting your mind and spirit in just the right place to face off with it.

    Aaaarrrgh!Yell

    Deep breaths, and think about the wedding and enjoying that time. Yikes! You sure have a lot going on in your life!Smile

    It'll be good,
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Oh, and abbeviations here:

    http://community.breastcancer.org/forum/62/topic/735716?page=1

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  • Omaz
    Omaz Member Posts: 5,497
    edited March 2012

    runnergirl - I just came by this thread and I wanted to wish you the best with your treatments.  It was very proactive of you to get things going in a timely manner.  I will check back here !  

    (((gentle hugs and well wishes)))

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Just happened to see this post. I will be thinking of you, too, runnergirl.

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited March 2012

    That's totally what it felt like, Binney! Thank you for the abbreviations link. It will be very helpful.

    Thanks for the thoughts and wishes, Omaz and Tina!

    Renee' 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2012

    Renee, thinking of you, and you're getting set for the wedding and running, and the treatments start soon.

    Kira

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  • newksmom100
    newksmom100 Member Posts: 55
    edited March 2012

    Renee', I just happened onto this post and I too will add you to my prayers. 

    Julie

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited March 2012

    Thank you, Kira. Yes, much to keep me busy and my mind on better things. :)

    Thank you, Julie!

    Renee' 

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited April 2012

    So....just an update. Went to consultation appointment with oncologist this morning prepared to start treatment afterwards and was delayed yet again. This time it was because I cracked a tooth and everyone but the oncologist thought it would be ok to go ahead. So he trumped everyone. To make a long story short I went ahead and had tooth extracted and have to wait three more weeks. That makes 5 weeks total delay so far. The emotional toll this time was worse and I'm looking forward to just getting some decent sleep. I feel like its been so long!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2012

    Oh, Renee,Surprised I hope he gave you something for anxiety/stress! And then you had to have a tooth pulled on top of it all. Are you able to eat yet?

    Prayers for quick healing, strength for all the activities you have planned (so hard to focus when you still have everything hanging!), and decent sleep. Still here cheering for you, and sending hugs and chocolate,
    Binney

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Yes, perhaps one of your doctors can give you something for anxiety? This long stretch of stop and go is emotionally exhausting. Hope you can get some sleep and heal quickly. Still thinking of you, Renee.

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited April 2012

    Renee,

    Just wanted to add my .02 - I'm praying for you - please hang in there and keep us updated on how you're doing. 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2012

    runnergirl - I feel ya!  I know how hard this is - I was dx'ed 9/27, had to wait for the surgeons until 11/1, then found pos nodes on post-op path, so had to have ALND 5 weeks later (waited for surgeon who was out of the country at a symposium in Japan) then 2 weeks later an emergency surgery on the prophy side TE, then 2 more surgeries (and TE out) on same in the next month, then finally chemo on 2/17.  Thought I would never get there and I was worried about the delay, as I exceeded the 12 week window from BMX.  I am so sorry this is happening to you, and stressing you out.  On a happier note, how was the wedding?  Sending you a hug!

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited April 2012

    Binney, nothing for anxiety or stress. Except for chocolate. Wink

    The more I go to onco, the less I like him. I talked to my case worker/nurse about how I felt about how things went with the first delay and all she could tell me was that I'm sorry you feel that way and I don't know what to say. I said how about I'm sorry for not telling you the way the tests needed to be appointed? She refused to even take responsibility for that. I even suggested that maybe the next person after me wouldn't have to go through what I did if she changed the way she communicated that and she told me she didn't think she did anything wrong. I finally asked for another nurse and got a very nice one that I think will be a very good advocate/mediator. I did ask about sleeping and she told me that I could take unisom. I got a prescription for another pain med as Vicodin isn't doing much anymore. I was prescriped Percot but it makes me so sleepy so I just take it at night and use Vicodin during the day. It just seems like I'm playing the prescription drug thing and really don't like it at all. I've NEVER been a med taker. Any suggestions on how to keep track of everything?

    I can't believe how exhausted I felt. I finally slept a good stretch last night and feel like I'm on the way back to feeling myself.

    Oh, SpecialK, I so feel for what you went through then. Yes, worried about the delay, but I guess they know what they're doing, but in the meantime, they're telling me they're worried about my schedule delaying treatment more. It's a contradiction to me. If they were so concerned, they might've wanted to be more diligent about my test scheduling.

    The wedding was GREAT! Much better than I'd imagined and is still hard to imagine my baby girl is married. She is so happy, so that makes it easier to deal with and she and hubby are coming for Easter to spend the day with us. Her first holiday as a married woman and bringing dinner goodies to top it off! I made sure to get dibs on them two weeks ago. LOL. 

    Thank you, too, Tina and Suzy, for well wishes and prayers. I'm sure you all know how reassuring it is to have this support.

    Renee' 

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited April 2012

    Renee--Thinking about you and hope things start looking better.  I am happy the wedding was more than you hoped for.  Have a great Easter day with the baby girl and new SIL.  Becky

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  • runnergirl4life
    runnergirl4life Member Posts: 34
    edited April 2012

    I hope everyone had a good Easter. Mine was great. It was so nice to have DD and new SIL over for the entire day and evening. It's a bit crazy to see your kids all grown up and married.

    Renee' 

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2012

    runner - glad you had a nice Easter, our was quiet.  DD's boyfriend (Navy SEAL) comes back from deployment on Friday so that is good news.  DS is coming to visit with his girlfriend sometime in May, something to look forward to.  Neither of mine are engaged or getting married anytime soon, something to look forward to when the time comes! Glad the wedding was nice, and even though you are waiting to start treatment and worried it is great that you could enjoy that special time.

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited April 2012

    Runnergirl.....about the tooth.  Really important that you got it taken care of prior to chemo.  I know this may not be ideal, but trust me, you don't want to be doing chemo with any possibility of infection.

    I had a dental episode in the middle of AC.  I had an implant put on which should have gone just fine (UPS had screwed up the delivery, and this was all supposed to happen 2 months sooner than it did).  Just screwing onto the post.  However, because I had grown additional gum tissue, it did not seat properly and unscrewed itself.  Fortunately, I was able to gently remove and nothing terrible happened.

    That was Part 1.  You can't leave an open post, so back to the oral surgeon who trimmed the gum to put a healing cap back on.  My oncologist turned a shade of pale that seldom happens, but I was healing up just fine (thanks to Neulasta).

    However, this was not the end of things as the healing cap wore a sore in the side of my tongue.  It was the gift that kept giving so returned every single chemo cycle, and there were 8 more of them.  I still get these occasionally.

    Anyway, a couple of weeks after the healing cap fiasco, I had the crown reattached, and all was well on that end.  Things have worked just fine ever since.

    But you will see why I don't think that waiting a bit for chemo to begin is the worst of fates.  NOTHING in the six months of chemo I had came close to the dental misery.

    Good luck. - Claire

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  • JNS
    JNS Member Posts: 24
    edited April 2012

    Runnergirl, I also stumbled onto this thread and I'm rooting for you.  I hope the delays clear up asap and your treatment starts soon.  Wishing you strength and a complete recovery!  Contratulations also on your daughter's wedding. :)

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