Anyone else have pain & lumps in arm (same side as cancer)?

Hi everyone,

Rather than consult with Dr. Google, I thought I'd ask for more trusted opinions. 

Has anyone experienced pain & had small lumps in their forearm?  It's been going on for about a month or so now (and seems to be getting worse) on my left side--the side where my axillary lymph nodes were positive & removed.  I don't know if it makes a difference, but I also had extracapsullary extension from some of the nodes but never really understood what this meant, if anything, with respect to any kind of recurrence in the area?

And, silly me, I've been trying to avoid Dr. Google so much that I never bothered to see where other lymph nodes in the arm are until today, so I feel a bit ignorant.  It looks as though there is a chain of lymph nodes right where I'm experiencing the pain & lumps.  Can the cancer spread down the arm through lymph nodes?--stupid question! I know it can go anywhere it wants!--I honestly hadn't even thought of the arm as a possible site for recurrence before because I haven't really heard of that.  Plus, after surgery, chemo & radiation to the axilla, etc. I didn't think the rest of the arm was anything to worry about.

At first I thought it might be lymphadema, though I wear my ugly sleeves and hand gauntlets all the time & I just had my physical therapist measure me because I was concerned & she said there is no change in size--and I've only experienced minor swelling in the upper arm, not in the forearm, all along. 

And when I went for my Herceptin, the nurses at the hospital said they saw no signs of infection but could feel the lumps.

Has anyone else experienced anything similar?  I hate to run paranoid to my onco to ask for some kind of testing if it's nothing, but I'd be lying if I said I wasn't worried...

Thanks for your help...

Thanks Sharon, Jenny & Jackie...

Thanks for the encouragement to call the doctor--even after everything I still find myself not wanting to look like a hypochondriac or a complainer--sometimes I just need someone to remind me that it's important to get these things checked out.  I guess even if it's not cancer, there probably shouldn't be lumps or so much pain in there...

Jackie--I've never heard of that before!  This week marks one year since surgery for me, so am I too far out for fatty necrosis?  (I'll probably google it after I finish typing this.)  :-)

Sharon, did anyone ever tell you whether there's any significance to having the extracapsular?  I was just told it's not a good thing, but not much more than that.  And I never really found much on the internet about it.  

Sorry about your LE, jennyboog...  I've only had minimal swelling in the upper arm & underarm (and neck??-but they've told me LE isn't supposed to go there?).  Sorry to hear your whole arm is affected.  Terrible that after everything you go through, you still have to worry about LE, too.  Such a cruel disease...

Thanks so much for responding...  I'm going to call the doc...  

Sorry to hear you are having neck issues, too, jenny...

How long have you been having problems?  Mine started in March.  I was still getting radiation, so I showed it to my radiation oncologist first--actually, he saw it when he walked into the room--because I figured maybe the radiation was causing it (I was getting radiation near the area for positive supraclavicular nodes).  But he told me that radiation didn't do it and sent me down the hall to my medical oncologist--who immediately sent me off for an ultrasound because he was worried about a jugular clot!  It wasn't a clot, but that was the end of the diagnostics.  I asked if it was LE and they told me what they told you, it goes down, not up.  So I still have swelling in my neck 6 months later & no one seems too concerned--except me every few weeks when I worry that it's cancer in the middle of the night!  :-) 

I haven't heard the "throat infection" reason yet, though I've been on antibiotics for other things a number of times since the swelling started and they haven't affected my neck size, so I'm curious to see whether the antibiotics work for you.  I'm personally leaning toward LE as the reason--sounds like you're not convinced it's not that, too.  Seems like too much of a coincidence that we both have it only on the BC side!  I certainly get your frustration!!!   :-)

I'll let you know how my appt. goes.  I called the onc today to ask him about the arm & they said "you know you have an appt. tomorrow, right?"  I had completely forgotten, so I guess I'll be able to ask him in person!

Thank you--so nice to talk to people who understand...

Thanks for the information & advice, VictoriaB.  I was seeing a LE therapist who also helped me with my range of motion after the surgery and I stopped going a few months ago when we decided that my ROM was better and that I wasn't having too many issues with the LE.  I guess I was too quick to stop going... and I should probably go back to see her...  I'll google AW after this...  Glad you are getting some range of motion back...  Hope you continue to improve.  Thanks!

Hi jennyboog, thanks for your words...  I'm seeing my other oncologist tomorrow (because I've gotten most of my treatment at the cancer center but I have to get my herceptin at the hospital & need to see an entirely different oncologist there--long story!), so I'll bring everything up with her, too, and see what she says.  I'm sure the neck must be LE (at least I think so most of the time!) and that there's LE in the arm, but I'm still really leary of those lumps in the forearm.  I guess that, along with some of my other symptoms, still makes me worry about something going on in the lymph nodes down there... 

I haven't checked your thread yet, but I hope your MRI went okay.  I'm sorry that you have to wait now.  Sometimes I think that's the worst part...  I'm hoping that things are okay...  I'll be thinking of you... 

Hi lyndawatkins,

I'm sorry I can't offer much in the way of answers.  The lumps that prompted me to start this thread are still there.  When I wrote my last post, the onco wanted to send me for a PET, but the next day they found something on my ovary that after more ultrasounds and a CT a few weeks ago, they determined to be an ovarian mass, so that has taken any focus away from the arm and neck lumps.  But they are still there and still troubling.  Are yours are in the axilla?  Mine are around the inner crook of the arm and into the forearm and it seems like there is a possibility they may be related to LE??--I would think that lumps in the axilla would be a lot more concerning than the location of mine--did they take all of your lymph nodes during surgery?  I can understand your anger and fear, especially if they told you you still have cancer in your body.  It's a travesty that your insurance won't pay for the PET unless you go through having a biopsy done first, especially since a PET would be helpful anyway if they know there is active cancer in your body.  Do they want you to have a needle biopsy or to have them surgically removed and biopsied?

The only thing I can think to suggest is to talk to the doctor who ordered the PET and see if there is anything he/she can do to make this happen.  Or, whenever I have an issue with insurance, I talk to the social workers at my cancer center and the hospital--the doctors and SWs always seem to be able to do more than I can as the patient.

I am so sorry that you are going through this.  It's bad enough to have cancer, but to not be able to get the things you need medically because of insurance is just horribly wrong...  Thinking of you...