We are 208,564 members in 82 forums discussing 150,085 topics.

Help with Abbreviations

All TopicsForum: Lymphedema → Topic: Do you guys think I have lymphedema?

Topic: Do you guys think I have lymphedema?

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

Posted on: Jul 12, 2018 10:34AM - edited Jul 12, 2018 11:03AM by Balance101

Balance101 wrote:

Hi everyone! I have an appointment on Monday with a physical therapist, but I'm not convinced this is lymphedema. I had bilateral SLNB in April (3 on each side, all clear). I had my hubby take my BP on my left arm a couple times about 3 weeks ago because I was getting lightheaded and dizzy (since resolved). Shortly afterward I started getting pain in my arm. It has gotten progressively worse to the point of not being able to move my upper arm. The pain is not in my underarm, but in my shoulder and upper outer arm. From the elbow down feels normal. No swelling aside from having to remove my rings one morning, which subsided the next day. Hurts most first thing in the morning. I can barely lift my arm enough to put deodorant on and it hurts like hell if I try to move it too much. Thanks in advance!

Dx 3/27/2018, ILC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 4/8/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Log in to post a reply

Page 1 of 1 (9 results)

Posts 1 - 9 (9 total)

Log in to post a reply

Jul 12, 2018 01:58PM edwards750 wrote:

Balance - I don’t have lymphodema but several ladies in my church group do. It’s positively brutal. They are in constant pain. Also, they all had multiple nodes removed. I know it doesn’t have to be a lot of nodes but the more that were removed the more likelihood it could develop.

There is a link on this website about lymphodema. You might want to check it out. Hope you don’t have it.

Diane
Log in to post a reply

Jul 12, 2018 02:24PM gb2115 wrote:

Good to get evaluated. Are you sleeping on that side?

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
Log in to post a reply

Jul 12, 2018 02:30PM Balance101 wrote:

The thing that stumps me is that I don't have any pain under the arm. Is that something that everyone experiences?

No, I don't sleep on that side. It would be way too painful. I lie on my back to sleep.

Dx 3/27/2018, ILC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 4/8/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Log in to post a reply

Jul 12, 2018 02:34PM SpecialK wrote:

Sounds like it could be frozen shoulder or a shoulder injury like rotator cuff or overuse, but the evaluating PT should be able to make a determination what is going on whether it is LE or something else. If you do receive a diagnosis of lymphedema make sure you are treated by a certified lymphedema therapist with breast cancer patient experience Good luck!

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
Log in to post a reply

Jul 12, 2018 02:40PM Balance101 wrote:

Thank you! :)

Dx 3/27/2018, ILC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 4/8/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Log in to post a reply

Jul 12, 2018 03:18PM - edited Jul 12, 2018 03:19PM by Outfield

I'm not going to hazard a diagnosis over the internet, but one thing you (and anyone) should know about lymphedema is that there is a wide range of symptoms. Evaluating symptoms, it's impossible to say "Because you don't have X" or "Because you do have Y" that you do or don't have lymphedema. It does not always hurt, in fact in the old patient and medical literature it was always described as "painless" swelling.

If swelling is not obvious (you would have had to have been a ninny not to see that my arm was swollen even though it wasn't that big), then it takes an experienced provider looking at sometimes subtle things to make a diagnosis. There are several tests that can be done, although none of them has risen to level of being the "gold standard" or uniformly available yet. If lymphedema is still on the list of possibilities after you see the physical therapist, make sure you see a certified lymphedema therapist. This is a great resource for information: https://stepup-speakout.org



Log in to post a reply

Jul 12, 2018 03:21PM - edited Jul 12, 2018 03:21PM by Balance101

Thanks Outfield, I'll take a look. I do realize that I can't be diagnosed over the internet. I think just hearing your experiences and symptoms helps me decipher this somewhat. After reading about frozen shoulder, that does sound like what I have. Will keep you posted. Thanks for the link! :)


Dx 3/27/2018, ILC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 4/8/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Log in to post a reply

Jul 13, 2018 04:57PM flowergal wrote:

Hi Balance,

How about calling your PCP to see what its all about? Could be rotator cuff tear,strain, or other things .Good luck.

Dx 1/2018, IDC, Left, 1cm, Stage IB, Grade 1, 1/1 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole)
Log in to post a reply

Jul 13, 2018 05:05PM Balance101 wrote:

Hi flowergal! I don't have a PCP. I called my breast care center as I was told by my surgeon if I had any arm pain. They set me up with a PT that specializes in lymphedema, whom I will see on Monday. I still don't think that's what it is. I'm thinking frozen shoulder, but we'll see. It's actually getting a bit better. I can lift my arm a little more today.


Dx 3/27/2018, ILC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 4/8/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

Page 1 of 1 (9 results)