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All TopicsForum: Lymphedema → Topic: Does axillary clearance always result in Lymphodema?

Topic: Does axillary clearance always result in Lymphodema?

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

Posted on: Jul 31, 2017 05:08AM

rubyredslippers wrote:

Hello, I've recently had my second partial mastectomy and a lymph node had some cancer in it, so the surgeon now tells me he wants me to have another surgery to remove all of the lymph nodesin my right armpit. He says it's not necessarily going to mean I will have ongoing complications?

Does anyone have this done and not have any issues?

Surgery 7/5/2008 Lumpectomy; Lymph node removal: Sentinel Dx 6/20/2017, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- Surgery 7/28/2017 Lymph node removal: Right Surgery 9/5/2017 Lymph node removal: Underarm/Axillary Radiation Therapy Breast Chemotherapy AC
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Jul 31, 2017 12:49PM Binney4 wrote:

Ruby, MOST women who have node clearance surgery do not develop lymphedema. That said, though, it's impossible to know beforehand who will and who won't. There is a risk of arm lymphedema with any breast/chest surgery, and the risk does rise with node removal, but it is still true that a majority of women will not develop lymphedema.

It's always wise to see a well-qualified lymphedema therapist before surgery for baseline arm measurements, personalized tips on lymphedema risk reduction, and possibly fitting for a compression sleeve and glove to use prophylactically for travel and exercise. Your surgeon, medical oncologist or PCP can write you a referral. Here's how to find a well-trained therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

I'm hoping you'll never have to join our Swell Sisterhood, but knowing your risk and getting good care promptly if you run into trouble can make this much easier to manage. Wishing you smooth sailing and quick healing as you move forward!

Gentle hugs,
Binney


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Jul 31, 2017 05:36PM - edited Jul 31, 2017 05:36PM by rubyredslippers

thank you binney4!


I'm very disheartened. I am feeling that the cancer recurring from 9 years ago, and having alrwady spread to a lymph node that was "right next to it" means that it's just a matter of time before it shows up somewhere else? I'm so scared. I'm scared of developing the problems I've read a bit about in thi Lymphodema section. I can't deal with this.

Surgery 7/5/2008 Lumpectomy; Lymph node removal: Sentinel Dx 6/20/2017, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- Surgery 7/28/2017 Lymph node removal: Right Surgery 9/5/2017 Lymph node removal: Underarm/Axillary Radiation Therapy Breast Chemotherapy AC
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Jul 31, 2017 06:39PM Binney4 wrote:

Ruby, you really have had a lot thrown at you, and it must all be such a shock and so scary. And of course you can't deal with it all, at least not all at once. You've faced off with this before, and you CAN do this--you've already proven that. It sounds like you have a good team already in place, ready to be aggressive about conquering the beast again. But dealing with the cancer treatment ahead is MORE than enough to cope with right now. Please don't take on the fear of lymphedema as well, because that really is something you may very well never have to worry about. (And if you ever do, believe me, we're here for you, and we've got your back. This all gets better, honest!)

You can do this, and we're rooting for you all the way. Please keep us posted as you move forward. And do tell us, please, how we can help. There is still every reason to look for those amazing moments of joy in every single day.

Hugs, and prayers,
Binney

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Jul 31, 2017 07:57PM sunnyjay wrote:

rubyredslippers: I had a similar thing happen. I had unilateral mastectomy on my left side and sentinel node biopsy in May. One node was positive, so I was back in surgery 48 hours later to remove more lymph nodes. The good news is that there were no additional positive lymph nodes. The bad news is that I am at a risk for lymphedema. I am left-handed so I was always paranoid about using my arm to do anything. My PT told me that I should use my arm as normal, except for carrying anything more than 10 lbs., and avoiding ways to get infection in that arm (no blood pressure cuffs, no needle sticks for blood draws, etc). So far, I haven't had any lymphedema symptoms, and the tightness and limited arm movement from surgery has been relieved with PT and daily exercises. I know that lymphedema can happen anytime now, or months or years later, but my PT reassured me that if I suspect lymphedema to contact her anytime for help in minimizing the symptoms. Hopefully you can find a similar PT that will work with you.

Dx 3/23/2017, DCIS/IDC, Left, 4cm, Grade 1, 1/21 nodes, ER+/PR+, HER2- Surgery 5/16/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 5/18/2017 Lymph node removal: Underarm/Axillary Chemotherapy 7/19/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 1, 2017 02:45AM ChiSandy wrote:

Living in fear robs from the pleasures of living. Using common sense preventive measures (weight lifting restrictions, avoiding needle sticks, BP cuffs, sunburns, insect bites and cuts & scrapes—and treating them promptly) is all you need to do for now. (The one thing I should have done differently was lose weight as soon as I was diagnosed with bc and continue to lose until starting my AI, because adipose tissue is more susceptible to have lymph fluid pool & stagnate).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Aug 1, 2017 04:52AM rubyredslippers wrote:

thanks all. I can't have surgery until sept 5, as otherwise I'll have no one to look after me when I leave hospital. Is that a bad thing?

Surgery 7/5/2008 Lumpectomy; Lymph node removal: Sentinel Dx 6/20/2017, IDC, Right, <1cm, Grade 3, ER+/PR+, HER2- Surgery 7/28/2017 Lymph node removal: Right Surgery 9/5/2017 Lymph node removal: Underarm/Axillary Radiation Therapy Breast Chemotherapy AC
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Aug 2, 2017 02:21AM sunnyjay wrote:

Rubyredslippers: I had my surgery 2 months after diagnosis. Since they are removing lymph nodes this will be major surgery and you won't be able to drive yourself because if the narcotics they give you for pain. It was recommended not to drive for 2 weeks or until you get range of motion back. I don't think it's a bad thing if you don't have anyone to care for you, it just makes life easier. You will most likely have drains to deal with also, and will give you limited range of motion. So it's good to have someone around to help for at least 2 weeks.

Dx 3/23/2017, DCIS/IDC, Left, 4cm, Grade 1, 1/21 nodes, ER+/PR+, HER2- Surgery 5/16/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 5/18/2017 Lymph node removal: Underarm/Axillary Chemotherapy 7/19/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 2, 2017 04:12AM ChiSandy wrote:

Ruby, the hospital will likely have nurses visit you at home daily for the first week or so after surgery. And if you are on Medicaid or Medicare (or your insurance provides for it), you might even be eligible for a temporary aide till you get your ROM back.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Aug 2, 2017 07:14PM ShetlandPony wrote:

Ruby, did your doctors explain exactly what "a lymph node had some cancer in it" means in your case (e.g. isolated tumor cells, a micrometastasis, or a macrometastasis)? Have they explained to your satisfaction why complete ALND is required in your case? Depending on exactly what is found in the sentinel node(s), and other aspects of the pathology report, complete axillary node dissection is not always recommended. In certain situations, radiotherapy following the lumpectomy may be considered sufficient.

For example, see

http://www.ascopost.com/issues/april-15-2012/sideb...



2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda
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Aug 2, 2017 07:42PM Jennie93 wrote:

My nodes surprised everyone - three positive out of 6. (Later some micro cells were found in the 4th.) Had not shown up on any imaging beforehand. However the BS, MO, RO & tumor board all agreed that, while in the past they would have gone back in and taken out more nodes, now they don't recommend that. They just radiate the heck outta them. I had to get rads anyway. It wasn't bad. Maybe you should get a second opinion?



49 at dx. Found on routine mammogram. Complications: cording, truncal LE. Dx 8/2012, IDC, Left, 2cm, Stage IIB, Grade 2, 4/6 nodes, ER+/PR+, HER2- Surgery 9/5/2012 Lymph node removal; Mastectomy: Left Chemotherapy 10/16/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/24/2013 Lymph nodes, Chest wall Hormonal Therapy 5/23/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/1/2015 Arimidex (anastrozole)
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Aug 2, 2017 08:49PM hugz4u wrote:

Ruby we are in your back pocket don't give up. Two step backwards for now but one step forward and you'll get there eventually. We're flagging you ahead girl

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Aug 2, 2017 09:17PM ElaineTherese wrote:

Ruby,

I had all 20 of my Levels 1 and 2 lymph nodes removed from my right arm pit and I haven't developed lymphadema. I agree with Jennie that you might look into radiation as an alternative if you don't want to have more nodes removed.

sunny,

I drove to work the day after my surgery. No one ever told me not to drive for two weeks!


DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Aug 2, 2017 09:56PM Jojobird wrote:

I had 21 nodes removed and have not developed lymphedema. I have been very careful and continue to exercise, do stretches, keep my weight down.

My blog: chestybreastypuller.blogspot.com/ Dx 3/2016, IDC, Right, 6cm+, Stage IIIC, Grade 3, 21/21 nodes, ER-/PR-, HER2- Chemotherapy AC + T (Taxol) Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy Whole-breast: Breast, Lymph nodes
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Aug 17, 2017 12:59PM cmlorino1 wrote:

I had 14 positive nodes out of 32 removed from my left armpit, with no lymphedema to speak of. I travel by air a lot and wear my sleeve and gauntlet with no problems thus far after 13 years. It is possible

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Aug 17, 2017 09:09PM hugz4u wrote:

Cmlor it's a crapshoot. Some get it day one others 30 yrs later some never!

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