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Lymphedema and one numb finger

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    Posted: Aug 18 2015 at 8:39pm
Hi TNBS sisters!

I searched the whole site and only found two references to lymphedema in the entire TNBC Foundation site!

Does this mean that TNBC patients/survivors/thrivers don't get lymphedema much, or that there is another place to talk about it, or we have bigger cancer-related issues to discuss?

I'm hoping for some help and opinions here. Two months after my radiation ended (25 tx to four fields) I got the dreaded lymphedema. I did EVERY preventative measure known to woman from the time of my surgery to favour that arm (I had 20 lymph nodes removed), but it came anyway.

With massage, self-massage, skin care, compression sleeves and gloves, I kept my arm at 3% over the size of my left.

I have revision of my breasts in May, and by June my hand and arm had jumped to 23% larger than my left. Now I am bandaging for 23 hours a day. I hate it. But that's what's necessary to get the arm down.

Two weeks after I started bandaging my ring finger went numb on the top and the left side. I still have mild neuropathy in my fingertips on the right, which I have had since chemo, just tingling almost all the time, and nothing to complain about. But the top and side of this ring finger are completely numb, as in I cannot feel anything. I tried not bandaging for 2.5 hours one night after massage, and no feeling in the finger. I then tried no bandaging (but with elevation) for an overnight, and no improvement.

Has anyone experienced this? What did you do? Did it get any better? Worse?

Thank you so much for any and all input. Stay strong. Thumbs Up  

Jacquelyn

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2015 at 7:53am
Jacquelyn,

Unfortunately I think Lymphedema affects many women.  Click on this link and it will show the threads talking about it.



Have you talked to your medical team about the numbness?  I'm concerned that you have total numbness and no feeling in your finger.  There may be something they can suggest.  Hoping you get some relief soon.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2015 at 11:06pm
No primary site,
Sounds like you've got quite a case of lymphedema!  From what I read those have mastectomy have more problems with lymphedema.  I had more problems with fluid retention in my breast.........since I had a lumpectomy.........I did have all my lymph nodes removed under my left arm.  I got fitted for a flexitouch machine which messages my lower area and then up to my chest.  I also have the arm and hand messagers which I have had to use for about a week a couple of times.  If I get a cold my arm and hand swell (I had to quick get my rings off! )  I was referred to this by my Physical therapist that I was using at the time to help with the fluid retention in my breast. (I was having difficulty with pain due to this fluid).  I don't know if it is an option for you but you should look into it.  For the lower area and chest it takes about 24 min./day for the arm/hand added it takes about 52 min. (It is very powerful on the arm and hand) Hope you get some relief.  I had one finger that was kind of numb at the beginning but has slowly improved. 
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LymphActivist Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2015 at 2:14am
MLindaG:
Sounds like the "fluid retention on (your) breast" may be "breast lymphedema", caused by the interruption of the fluid drainage of your breast due to the sentinel node dissection and radiotherapy. It is important to keep the swelling down to avoid or retard breast infections. Is your physical therapist certified in lymphedema therapy? 

If you wish to read more about breast lymphedema please see my web site at http://www.lymphactivist.org/breast_lymphedema_for_therapists.pdf


Edited by LymphActivist - Aug 20 2015 at 2:16am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SAMOM01 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2015 at 10:56pm
Impact of lymphedema can be different for everyone.  I only had 11 lymph nodes removed and I'd consider the impact I had pretty bad in the beginning (1st 6 months).  I would suggest talking to a health professional to see a lymphedema specialist (physical therapist with lymphedema therapy training).  They can show you how to move the fluid as well some exercises you can do in order to alleviate some of the discomfort that comes along with it.  You may need relief from the fluid build up at the oddest times. This was the best option for me.  While it is better on a daily basis for me now 1+ years out I do have a sleeve I wear (especially on planes and when I exercise/do yoga). Something about the heat of my body makes it flare up.  I also was told that certain reconstruction types like DIEP Flap reconstruction can exacerbate lymphedema swelling.  I had a double mastectomy and the DIEP Flap reconstruction procedure and I can feel the fluid build in by back, chest and left arm.  Being able to do the exercises anytime has been great.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2015 at 6:11pm
I had fluid retention in my lumpectomy breast for over 3 years! It wasn't til 4 years post surgery that you could see a difference in breast size. It's now a solid cup size smaller, but it took 4 years for the swelling to subside. It still aches when the weather changes. I tell my husband,"my boob says it's going to rain", and I'm usually right.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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