Help - can anyone shed some light please.

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shelloz1
shelloz1 Member Posts: 405
edited June 2014 in Lymphedema

Hi,

I was diagnosed with BC back in 2006, I had a lumpectomy followed by chemo, rads and Herceptin.  My treatment was completed in April 2008, so basically I am 5 years clean.

Recently I had a pain and swelling in my breast cancer side hand, followed by a large red line that went up my entire arm and at the top of the arm it was swollen with a very long hard lump (almost like a snake under my skin) and it was hot and the vein looked like it was bulging (plus it pulled when I straightened my arm).  I went to the ER, they thought that I had a blood clot, gave me some blood thinners and did a doppler (which showed NO blood clot).  The ER department put me on a 7 day (every 8 hour) antibiotic drip followed with anti inflamatory pills and an oral antibiotic for 5 days.  The red lump seemed to almost disappear, but was still there.  The ER was worried that perhaps I had a blockage in my lymph nodes or perhaps even a new occurence of cancer and sent me to my Oncologist.  My Oncologist said that I had definitely had a superficial blood clot and sent me to the Cancer blood clot clinic, where I was told again that I had definitely had a blood clot and they were worried that I had a new occurence.  I was sent to do an Ultrasound, blood work, cat scan and MRI (chest).  The blood work showed that my EA markers were at the high end of normal, and all the other tests were normal. 

In the meantime, the swelling has now moved down into my hand and fingers, a red mark appeared on my fingers, back to ER I went, back on a drip again but unfortunately it has not helped, and the vein is starting to bulge and pull again.

I spoke to my vein doctor, she was so convinced that I had a new occurence, but said since the Oncologist is not concerned (since the tests all came back with no worries).  She does not know who to send me to, I'm really getting pretty concerned as this is going on 3 months and no one knows what is going on.

Is it possible an MRI is not reveiling something in the lymph nodes or a new occurence?  I'm not sure why the Oncologist didn't do a breast MRI at the same time as the chest.  I did tell her that for a long time I have been feeling something bothering me in my underarm area, but no test reveals anything.

HELP, anyone please tell me what you think or what I should do.

Thanks

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2013

    Shelley, yikes--how frustrating and scary!Frown I read your thread on the Not Diagnosed But Concerned forum too. Have you seen an experienced lymphedema therapist (lymphedema therapists are not all created equal...)? They do see not only the usual lymphedema, but also cording and inflammatory responses to lymph blockages, so they might be able to help your doctors figure this out. I'd sure consider that as a next step. I realize your onc said he thinks it's not lymphedema, and it's certainly not the usual presentation of post-bc lymphedema, but the symptoms you're describing are not unheard of with lymphedema either.

    Hoping you get clear answers and a real fix SOON! Please keep us posted. Gentle hugs,
    Binney

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    Hi shelloz, Im so sorry you have had all this to deal with. What a scary situation.  I can't help you with this but I sure am feeling for you. Yes please keep us posted on how things are doing. Theres some very knowledgeable ladies here and please know we'll all be thinking of you.

    HUGS.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2013

    Binney is the expert...I'm mostly an observer, but I had cording in my MX breast and into my arm.  Nothing so severe as what you describe.  But  NO ONE - including Rad Onc and Med Onc knew what it was.  Rad Onc, in all his infinite wisdom said, "Well, if it's cancer, it will get bigger"   some comfort, huh?   Then my beloved LE Therapist said "it's cording."   She was right.  With LE therapy and stretching, it is almost gone now a year later from its appearance.

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  • shelloz1
    shelloz1 Member Posts: 405
    edited August 2013

    It seems that whatever this is has spread back to where it originally started (in my hand), vein is pulling again, except no red mark yet   Maybe it is a combination of cording and something else, not really sure anymore.  My fingers hurt so bad, I can't even hold a cup of coffee.

    I have an appointment with a new GP, I'm hoping that she will have some thoughts on where to go next.

    Thanks Shelley

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  • Lainey64
    Lainey64 Member Posts: 740
    edited August 2013

    My first thought was cording.  My symptoms were not as bad as what you have, but I did have that pulling feeling and the skin was painful just to the touch.  I would also recommend getting a referral to a physical therapist or LE specialist just to have it looked at. 

    And congratulations on your 5 yrs!

    Keep us posted.

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  • Marple
    Marple Member Posts: 19,143
    edited August 2013

    Shelley, we're thinking about you and hoping things are resolving.  I hope your new GP is helpful.  Hugs galore.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2013

    Shelioz - wonder what you found out about this!   Denise

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  • Marple
    Marple Member Posts: 19,143
    edited September 2013

    Shelley has not signed in for weeks. :(  I do hope she's managing ok. 

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