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Topic: Quick Question

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

Posted on: Feb 1, 2018 05:14PM

TriciaK wrote:

I have no visable swelling so my GP refused to give me a referral to see a Lymph specialist. I've had lots of pain in my axilla and hand (not sure if they're connected) and my whole arm feels strange and heavy. Unsure what to do next, GP says see her in two weeks and that won't make a difference, I always thought early dx was best. Could this be Lymph or something else as there's no swelling ?? Thirteen years out and nine nodes removed initially. Thanks for any help.

Tricia Dx 7/4/2005, IDC: Cribriform, Right, 2cm, Stage IIA, Grade 2, 3/9 nodes, ER+/PR+, HER2+ (FISH)
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Feb 1, 2018 07:29PM - edited Feb 1, 2018 07:31PM by hugz4u

Welcome. So glad and your smart you dropped by. Your right early treatment is best. It makes LE reversible otherwise it just gets worse.

I hope it's not lymphedema but if it is then you can fire your doctor like I eventually did when he laughed in my face and said I would NEVER get lymphedema. (Sorry I'm still mad at him,I should just forgive his ignorance and move forward for my healths sake)

The problem is docs only spend under a hour learning about the lymph system so it's not really their fault. It's med sch fault. So your doc is expecting to see a huge blown up arm for lymphedema as that's what he's seen in Med books.

My arm is normal size and I've been in garments since 2010. My initial symptoms were no pain, just a bit tired and bit achy when I overused it.

My axilla feels like it has a hard boiled egg placed at the back of my pit and my breast gets stingy at times. I wear a too small compression men's tee( women's cap sleeve is to short) and it relieves pain and swelling in my upper trunk also. A sleeve and hand garment is necessary.

You really need an evaluation by someone well trained in lymphedema. See stepup-speakout.org a fabulous site our girls here develop to find a trained therapist near you and get educated. No weekend course taker therapist either. Ask about their creditials.

For now drink tons of water to flush lymph. Deep belly breathe every so often and elevate arm on pillow but don't tire it out. Try not wearing a bra and see if that helps. Tight bands around bust usually gathers in lymph fluid that can’t drain. A compression camisole is good to.

Go back to doc and say your really uncomfortable with your arm and you need to be prudent.

You can get le from even one node out. I'm not saying you have it but try these tricks to see if it changes things for the better. Also check and see if it feels better right after you wake up which is usually when we are not as fluid filled. As day goes on we get more fluid not draining then we swell usually causing pain. Try not to sleep in the arm. If this improves your situation then you likely have LE.

Let's us know how it goes

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Feb 2, 2018 10:35AM Binney4 wrote:

Tricia, you're on the right track. You can try getting that referral from your oncologist. Otherwise you'll have to work at smartening up your GP. Here's information for doctors about lymphedema, written by a GP who got lymphedema after breast cancer:


There's a printer-friendly version available if you'd like to take a copy with you.

And here's how to find a well-trained lymphedema therapist near you:


A few more tips about what to do while waiting for that appointment, to add to those Hugz mentioned, here:


Keep us posted!

Gentle hugs,

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Feb 2, 2018 04:53PM TriciaK wrote:

Thank you so much for your reply and advice, I have an appointment to see another family Dr in a few days and will post an update and hope this one will take my concerns seriously.

Tricia Dx 7/4/2005, IDC: Cribriform, Right, 2cm, Stage IIA, Grade 2, 3/9 nodes, ER+/PR+, HER2+ (FISH)
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Feb 2, 2018 04:54PM TriciaK wrote:

Wow great info and thank you Binny, will keep you posted and appreciate your advice.

Tricia Dx 7/4/2005, IDC: Cribriform, Right, 2cm, Stage IIA, Grade 2, 3/9 nodes, ER+/PR+, HER2+ (FISH)

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