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Topic: Weird symptoms

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 10, 2006 04:59PM

NaomiS wrote:

Hi there,
I haven't visited this thread much because I didn't have LE symptoms. I looked around tonight and realized I should have come here for some education. Live and learn.
I'm having some weird swelling in my throat. It has been going on for almost a week with some mild pain. I just thought I had a touch of seasonal allergies. This morning, I realized that my throat was so swollen I could see it just by looking in the mirror. (near the top of my throat/neck)It is sore if I touch my neck, hurts a little when I swallow and it is sometimes difficult to swallow. No swelling anywhere else. I saw my P.A. today and she asked if I had had any LE problems. She also assumed that I had had some instruction re:LE prevention after my bi-lat mastectomy and SNB in January. (nope) She took blood for a thyroid test. She said she asked about LE because sometimes fluid can build up in other areas. If the thyroid test comes back negative, we'll look at something else. I am so ignorant about this. I would appreciate any insight you all might be able to share with me. This is my first "illness" post BC surgery. So I have gone from someone who never worried about anything to a hypochondriac. Have you heard of LE-related fluid problems in the throat or salivary glands?
Thanks for listening. I feel like a dumb**s for having a freakout... Log in to post a reply

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May 10, 2006 07:38PM Binney4 wrote:

Oh, Naomi, there's nothing dumb about it -- this post-bc stuff is so hard. Not only do we panic over our cancer history, but just the thought of dealing with doctors again can cause all kinds of nasty anxieties. Doesn't seem to get any easier, does it? You'd think we'd all be pros by now...

I'm really sorry nobody's bothered to inform you about your LE risk and the steps you can take to prevent it. That's really important -- and doubly so for those of us who are bilateral! Here's a web site or two to get you started:
www.lymphnet.org
That's the National Lymphedema Network, one of the best groups for LE advocacy and education. They have Prevention Guidelines that should help get you acclimated to the fairly simple lifestyle changes you can make to help avoid LE.
Or try LymphNotes for easy-to-read articles on all aspects of LE:
www.lymphnotes.com

I'm glad your P.A. is at least aware of LE, but I'm wondering if she was aware enough to take the blood for the thyroid test from your foot, since both your arms are at risk. Unfortunately, our medical personnel are not well trained in the lymph system, so we do have to be our own advocates and educate ourselves about it. If your insurance will allow it, a visit with a well-qualified LE therapist to get baseline measurements and to teach you some massage and prevention helps would be a great idea. You can find qualified therapists near you by using the therapist finder at:
www.mylymphedema.com

As for your throat problem, your neck could conceivably be affected by LE (especially if you've had sc radiation), but that would be really uncommon, and I'd think you would have swelling elsewhere as well -- either arm and hand or more likely back, chest or side. Also, I'd think there would have to have been some incident that would trigger it -- an injury to your neck, say. It would, in other words, be conceivable, but barely so. There was a thread or two up on the Moving Beyond board recently about thyroid problems post-bc, and it seems to be a fairly common problem, and fortunately one that can be very successfully managed. Neck swelling also happens with infection sometimes, so you might want to keep track of your temp and report any elevation in that to your P.A.

I know none of that helps with the anxiety -- the only thing that helps that is to know what's going on and fix it! But hopefully your new interest in LE prevention will keep you out of ever having to deal with LE at least. Please let us know what you find out, and do feel free to ask any questions you may have about LE as there are lots of ladies here who are dealing with it successfully.

Be well. Let us know!
Binney
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May 11, 2006 07:50AM NaomiS wrote:

Binney, thanks for all the lnks, information and encouragement! I guess I need to study up.
The thyroid test came back negative, so my PA might schedule an ultrasound. I already had an appointment scheduled with my breast surgeon tomorrow, so maybe she will have an idea what is going on.
Thanks again. It's great to have cyber-sisters for advice.
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May 14, 2006 10:01AM RobinTN wrote:

Binney thank you so much for the links.No one informed me of the lymphodema issues until I saw a OT who is also lymphodema certified and she told me alot about it.Now I realize my left arm is quite a big larger than my right.and it seems heavier also.I am going to ask my onc about a compression garmet at my next visit.I am a RN and I have found that dr's and nurses think I know it all and dont properly take the time to educate me.But i dont,I need education in this area like everyone else,but am learning the hard way,for myself it seems.So i really appreciate the links you provided.

Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+
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May 14, 2006 01:00PM NPat wrote:

Robin,
Welcome, my fellow nurse! I hate to welcome you to LE but I welcome you to a site that you can use to obtain accurate information on LE. Binney is our resident Crusader Rabbit on LE. I am a family NP who entered the ranks of the "wrapped wonders" a couple years ago after a lumpectomy and axillary dissection. I was STUPID about LE. I never had studies related to it in undergrad or grad school. I just gave diuretics and ordered pumps. Now that my LE therapist has trained me about LE (a big job on her part!)... she sends patients to me because I will make sure they take precautions about infections (prophylactic antibiotic Rx always available in event of skin trauma) and sign all the paperwork so they can get their garments processed through their insurance (a BIG problem). I speak as much as I can to anyone who will listen about LE and when someone asked me at the mall if I have "carpal tunnel" ... give them a dissertation on LE. This usually makes theur heads spin and they are embarrassed but I have trouble containing myself. I have even gotten people in my church holding onto my gloved left hand now and not shrinking when they touch me. Keep surfing the websites that are posted and you will get a lot of good information. I faithfully wear my garments... glove and sleeve... have truncal LE and the Bellisse ended up not working for me but I found some Anita bras at www.womenspersonalhealth.com that do a better job... not perfect but the swelling is more completely controlled. As you become better informed, you can become an advocate for your patients and bug the providers. I once was "dumber that dirt" about LE but not now. Binney is super!!!! She needs to publish a collections of short stories... we could call it the...ugh... Lymphomaniac Monologues...
Pat
NPat
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May 14, 2006 02:03PM RobinTN wrote:

Thanks Pat,My goal is to become a FNP also,would already have been but this BC claimed 2 good years of my life.I already have a MD to sponser me when I can get my but in gear and get to work.I recently got a boil on my bad arm,it ruptured and left a big draining hole,I kept it dressed and took Keflex and it is now healed.I dont know what caused it as I have never gotton one there before.Have you ever saw this in a LE arm?I am just begginning to read up on LE and am so afraid now that I will have another chronic disease that I have to deal with.
Thanks for your kind post.Sorry we had to meet this way though.
Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+

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