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Topic: Questions about lymphedema and how it affects your life.

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

Posted on: Sep 12, 2018 06:12PM

hapa wrote:

I'm hoping some of you will share your experiences with lymphedema with me. What grade is your lymphedema? What do you have to do to manage it? Does it limit the things you can do, and if so how? I've just finished my BMX with ALND and have been recommended a course of radiation to the axilla, chest wall, and nodes. This will put me at high risk of lymphedema so I'm trying to understand what exactly that means before I decide if the risk is worth it. Any information you can give me would be helpful!

Dx 12/8/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall
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Sep 13, 2018 05:54PM Binney4 wrote:

Hello, hapa, and welcome,

These are all good questions, and I'll try to answer them. My lymphedema is complicated by the fact I had surgery on both sides, so it's bilateral. I also had trouble getting it diagnosed and properly treated, so it had progressed before I could get it under control. You will not have that problem, because you're already aware there's a risk, and you'll be alert and able to get help promptly. Getting treatment early means you will have an easier time of controlling it going forward.

By far the best plan is to get a referral to a well-qualified lymphedema therapist NOW, for baseline arm measurements and personalized risk reduction suggestions. Here's how to find a well-trained therapist near you:

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

And here are some suggestions for lowering your risk of developing lymphedema:

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

Because of the BMX, you are already at risk to develop lymphedema. Adding the radiation may increase the risk somewhat, but if that provides you with a way to beat the real beast of breast cancer, it will be more than worth it. There is no comparison. No one here will tell you lymphedema is easy, but it is not life-threatening, and even with bilateral arm and breast-chest lymphedema I'm living a very full and creative life. Bottom line is, we're here to help any way we can. Please keep us posted, and tell us how we can help.

Hopefully others will be alone to share their thoughts.

Gentle hugs,
Binney


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Sep 13, 2018 08:24PM hapa wrote:

Binney - what exactly do you have to do to manage your lymphedema? Are you wearing a sleeve every day? Anything other than that?

Dx 12/8/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall
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Sep 13, 2018 09:01PM Binney4 wrote:

Hi, hapa,

Yes, I have bilateral lymphedema, so I wear sleeves and gloves on both arms, and since I have lymphedema in my chest and back as well, I also wear a special compression camisole. I do 15 minutes of special exercises most days, and I'm careful with any kind of cut or scratch--prompt cleaning and use of an antibiotic ointment--because the risk of infection is greater in an area with lymphedema. My right arm is worse than the left, so I use a left-hand-only keyboard with my computer. But we are all different, and what I need will be different from what anyone else might need. Especially if you catch it early, managing lymphedema is easier. Lots of women only use their compression sleeves when they're exercising or traveling, and how much anyone can do with their lymphedema arm differs too. Generally, exercise helps with lymphedema, because the lymph fluid is moved by muscle movement, as long as you start gradually with new kinds of exercise and work up in strength. Swimming is especially good, as the added compression of the water is helpful in controlling it. Some women find salt intake affects their lymphedema, but it doesn't seem to bother mine.

I don't want to make it sound like it's nothing, because it is. Buying garments, learning self-care, remembering to be careful about bug bites or hang nails, arguing with uninformed medical folks about not using your affected arm, finding clothes that look good with your compression garments--none of that is a walk in the park. Feeling out of place with compression garment, or even the fact that our lymphedema is a constant reminder of our battle with breast cancer can be difficult to deal with. But it's all doable. Honest!

Does any of that help? Hope so! Hugs,
Binney

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Sep 24, 2018 12:46PM sylviaexmouthuk wrote:

Hello Binney4,

Thank you for a most interesting and informative post.

With love and best wishes,

Sylvia.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Sep 25, 2018 11:20AM Binney4 wrote:

hapa and Sylvia, good morning!

It just occurred to me that there was an article I wrote a couple of years ago about this question, and you might be interested. It's here:

http://www.literarymama.com/columns/seniormama/arc...

We each make our own decisions about how we handle this problem, how we take back control of our lives despite limitations. There's hope in that!

Hugs,
Binney

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Sep 26, 2018 05:31AM sylviaexmouthuk wrote:

Hello Binney,

Thank you for the link, which I shall have a look at later.

I agree with your words of wisdom at the end of your post.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Oct 7, 2018 08:32PM RuthElizabeth wrote:

I’m having terrible arm pit pain and surrounding areas. Could this be lymphedema? I already have it, but not sure of this new pai

Dx 5/26/2015, IDC, Right, 1cm, Stage IA, Grade 3, 0/19 nodes, ER-/PR-, HER2- Surgery 6/10/2015 Lymph node removal; Mastectomy: Left, Right; Prophylactic mastectomy: Left Surgery 6/10/2015 Lymph node removal: Right; Mastectomy: Left, Right Chemotherapy 7/13/2015 AC Chemotherapy
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Oct 8, 2018 05:40PM Binney4 wrote:

RuthE, lymphedema can certainly cause pain, especially when it affects the arm pit and chest/back area (called "truncal lymphedema), though of course there could be other causes as well. Time to head back to your LE therapist for an evaluation of this new development and, if it's lymphedema, help adjusting your self-care to relieve the pain.

Hoping you soon have real relief. Please let us know what you discover.

Gentle hugs,
Binney

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