Can someone help shed some light

shelloz1

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

barbe1958

Holy CRAP Shell!!!!!!! I'm amazed you are holding together so well - I'd be out of my mind with concern. Which hospital are you being seen at? Could they send you to Princess Margaret or something??? How could they not know?? Have they considered Lymphadema??? I feel SO bad for you as, of course you are scared and worried. I can't believe they have left you hanging. What is the next move they have for you?? I can't see it being cancer (I'm NO doctor!!) due to the red and stuff - does sound more like an inflamation of some sort, but with no blood clot what the heck is it? Have they considered just "simple" cellulitis or is that what the antibiotics were for?

You are officially in my prayers. Please keep us posted. I pray you get an answer FAST, this is long enough.

shelloz1

Hi Barbe,

Originally I was going to the Mackenzie Health hospital (near my home), but the Oncologist and Vein doctor work out of Sunnybrook (very well known for it's cancer care).

At this point no one knows what to do, I'm basically at a standstill, and on my own to figure out what the next step is.  I am going to a new family doctor on Monday, perhaps she might have some idea or suggestions.

The original diagnosis (after they ruled out the clot) was Phlebitis (Cellulitis), which was the reason for the antibiotic, but clearly after many rounds of that it is not solving the problem.

The Oncologist ruled out Lymphadema (not sure why).  I'm thinking at this point send me for a PET, maybe it can figure out what is going on.  I think the reason they considered a new cancer was that might block the lymph nodes and would stop infection from draining.

Thanks for your prayers!

Shelley

Marple

Shelloz~could it possibly be cording?  http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm 

You might want to post in the lymphedema section of the boards and see what kind of feedback you get.

I hope you are able to get some helpful answers soon.

shelloz1

Hi Marple,

Very interesting, my vein actually does look like that in the middle of the arm.  The only thing is on top of that I had the large red lump area, and swelling in the fingers, so I'm not sure if there is a connection.

Shelley

barbe1958

I had thought of cording, too, but wondered about the "bump".....good luck on what you hear next and rememeber to update us. There's probably someone readhing this thread right now that has the same problem and is waiting to see what it ends up being!!

shelloz1

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

Marple

Hi Shelley, I can imagine your frustration.  I was wondering what you just said, perhaps a combination of things.  There are posts on the other thread you started.  I hope your GP can help solve this or at the very least refer you to someone who can.

Rose_d

Shelley,

Do keep us posted on what you find out.  I've been having pain in my arm on my BC side as well down near my wrist.  I keep describing it as my veins hurt.  I don't seem to have swelling or redness although I do have a bruise.  I ran in a Warrior Dash this weekend so can't tell if it is just bruising from that or something else.  I am considering going back to physical therapy because I seem to be tightening back up and wonder if that will help.

Good luck getting some answers!

Rose

melmcbee

Shelley, Im so sorry that you are going thru this. I would try a trained lymphedema specialist. I also thought of cording but wasnt sure when you had your surgery. If you can find someone trained in lymphatic manual drainage I would try that just to see if they can clear rhe channels and see if that helps. Good luck