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Topic: Concerned about developing Lymphedema

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

Posted on: Dec 8, 2019 09:08AM

Plum wrote:

Since August 2019 I've had 2 lumpectomies (August, September) because of a DCIS diagnosis and a mastectomy (November) on my right side. Repeated lumpectomy because of the DCIS margin went beyond the surgical area. Lumpectomy pathology showed invasive cancer. A biopsy was done on one lymph node during this surgery and it was negative. Surgeon now wants to remove all my lymph nodes under my arm. Because of the repeated surgeries to my right side, I am very concerned about developing lymphedema. I am a very active (do lot of sports),slim 63 year old woman with no other medical issues and want to keep up that lifestyle. Any advice would be welcomed.

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Dec 8, 2019 11:35AM MinusTwo wrote:

Plum: I think you are right to be concerned. That doesn't mean not to do the surgery, but good to be informed. Maybe they don't have to remove ALL of the nodes? Maybe get a 2nd opinion? I can't tell where you are located, but an NCI facility would have the most updated treatment info.

I have mild breast and truncal LE after ALND surgery. I wear a compression bra 24/7 but luckily it hasn't invaded my arm. I do wear a sleeve & gauntlet for flying.

Below is a link to one of the best sites for information. IT was created with input from BCO people.

https://www.stepup-speakout.org/

In addition, there are lots of LE threads here that will be informative.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 8, 2019 09:18PM ruthbru wrote:

Here is an old post of mine, with some of my thoughts & tips on the topic. I put it together for an exercise thread, hence the emphasis on that; but you might find it helpful:

I had 11 lymph nodes removed (12 years ago), so lymphedema has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.

First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.

That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):

  • No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry
  • Wear gloves when doing yard work, gardening etc.
  • Wear sunscreen when out in the sun, bug spray when out with the bugs
  • If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
  • Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
  • Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does this, but that's just me
  • Keep a healthy weight
  • Keep hydrated, limit alcohol
  • Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land)
  • Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking a heavy bag (that's what I do)
  • When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
  • One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.
"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Dec 9, 2019 09:08AM Plum wrote:

Thank you Ruthbru - this is all good information and very helpful.

Best regards,

Plum

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Dec 9, 2019 09:39AM ShetlandPony wrote:

Plum, I agree with Minus Two that a second opinion is in order. I recommend it be at an NCI cancer center or at lease a University hospital. Some surgeons are too old-school and too ready to remove all the nodes. The evidence-based treatment trend is to do less of this. I would want to know there were very good reasons and no better alternative before agreeing to complete ALND.

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. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Dec 9, 2019 10:12AM Plum wrote:

Thanks SheltandPony, I am getting a second opinion from an oncologist at large Cancer Hospital in Ontario, Canada (where I live).

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Dec 9, 2019 10:49AM ShetlandPony wrote:

I’m glad to hear that, Plum. Sorry, I should not have assumed you were in the USA. But you didn’t say “Eh” in your posts. 😉

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. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jan 3, 2020 12:24PM Cakencobbler1 wrote:

I was recently diagnosed with papillary carcinoma of the right breast. I had a lumpectomy and got a 0-1A stage. There are micro cells left on 1 margin so will have to have another surgery to clean that up, then radiation and hormone therapy. I am very over weight and am extremely worried about lymphadema. I read that life expectancy with lymphadema is months to 2 years. My doctor told me about the chance of getting lymphadema but didn’t say anything about it being life threatening. I’m 70 and I’m really worried.

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Jan 3, 2020 01:00PM Trishyla wrote:

Oh, cakencobbler, you have gotten some very, very wrong information. Lymphedema itself is NOT life threatening. It is a condition, not a terminal disease. It can be annoying and painful and unsightly. It can also lead to a serious condition called cellulitis, but that's pretty rare.

Lymphoma, on the other hand, is a form of cancer, and can be terminal. Is it possible you've mixed up the two words?

In short, lymphedema is something to be concerned about, but not terrified of. If you do develop it, there are ways to manage it and plenty of forums here on BCO with great advice.

Best wishes to you.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Jan 3, 2020 02:16PM Cakencobbler1 wrote:

OMG, Trish you are so right. I mis-spelled lymphedema and lymphoma came up! Thank you so much for pointing that out. I feel SO much better. 😊 embarrassed though.

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Jan 3, 2020 04:33PM Trishyla wrote:

Don't be embarrassed. It's an easy mistake to make. Glad I could be of help.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Jan 4, 2020 07:36AM petite1 wrote:

Hi. I had 7 lymph nodes removed during my lumpectomy. I recently went to the Dermatologist for my annual skin check and she wanted to freeze a spot on the arm with that had the lymph nodes removed. I refused. She ordered Efudex, a topical chemotherapy. I am afraid to use it. Is there any information on what to do in a situation like this? I am concerned about developing lymphedema as a result.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Jan 4, 2020 02:35PM MinusTwo wrote:

petite - I've BMX had ALND.

For the last 15 years I have full body scans at the derm doc every 6 months. I've had 5 basal cell cancers removed with MOHS. I have 6-10 pre-cancerous lesions frozen every six months. And a biopsy on the average of every 18-24 months. Luckily I haven't had to have a biopsy on my arm or side yet, but I know they can do a biopsy by scraping rather than cutting. I have had spots frozen on my back & arm & chest on my compromised side with no problems. BUT we're all different.

I likely wouldn't hesitate to destroy the spot with freezing, but if you're more comfortable - go with the Efudex.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 5, 2020 04:33PM petite1 wrote:

Minus Two, Thank you so much. I feel better. I think I will call her and have them frozen, as I can't exactly tell what spots to treat. I am freckled.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Jan 5, 2020 07:20PM MinusTwo wrote:

Petite - do you have an LE PT you can check with? Posting a link below in case you haven't seen it. Great information created with input from BCO people.

https://www.stepup-speakout.org/

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 6, 2020 02:37AM - edited Jan 6, 2020 02:39AM by blah333

I only had two nodes removed and feel like they underplayed the risk of lymphedema. All they told me was to avoid repetitive movements. I have periodic swelling and not much access to physical therapy. My swelling started from carrying some groceries down the street. I was using my non effected side and had something light in my missing-node-side arm. Another time I lifted a laundry hamper "wrong." I've since realized not to let weight hang off that arm when carrying anything. Nobody ever gave me that tip. I will say if you have a light bout of swelling, don't panic. It does take quite awhile to progress to the point of being elphantitis and permanent. But it is uncomfortable and discouraging. I am also very active. I hate feeling like one quadrant of my body is now weak/can't be used much. If you get lyphmedema and it's sporatic/recurrent, you will start to learn what movements trigger it, and you can avoid them ie carrying things a certain way.

I am also fairly lean. My two bouts of swelling caused different ribs to be pushed out of place! Doctors have been SO SHITTY about it - saying things like "maybe it's always been that way" and "well you're really lean so maybe you just feel the swelling more" and "didn't you lose weight recently? that's probably why it's more prominent." (UH, no, losing 10lbs doesn't make ONE rib jut out at random. There is nowhere to even lose weight on my mastectomied chest but...ok) But I am a low income person, and younger, and am told I look strong and healthy, so they just dismiss me. Hopefully you will receive better treatment if you have an issue. Sorry to rant about myself but this has been endlessly frustrating and even this week I still deal with doctors making dumb remarks. Lymphedema is frustrating... but manageable, like managing being in a slightly impaired state. You should still be able to do a wide array of activities that you love.

One good form of being active for the lymph system is swimming. I have been meaning to take that up but am not sure of the best nearby pool/haven't even got a swimming suit since surgery still.

Just be vigilant, but not paranoid.


Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 11/30/2017 Mastectomy: Left, Right
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Jan 6, 2020 09:16AM petite1 wrote:

blah333, Thanks. I don't think the doctors pay much attention to the potential for lymphedema. The nurses have been much more helpful. I have an OT I have been consulting. Making calls this morning. Swimming would be good. 38 degrees this morning, even in Florida. I think I will wait on that. LOL

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Jan 6, 2020 08:05PM MinusTwo wrote:

blah - be sure to watch that arm. If you get a bug bite or get pricked by a thorn - be sure to clean immediately and use antibiotic ointment. One of the hardest things for me was to change the side where I carry my purse.

Also - it is irreversible. If you have a light bout - you need to immediately take action. I've learned how to do LE massage I have truncal & breast LE. I take great pains so hopefully it will not progress to my arms.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 9, 2020 09:19AM petite1 wrote:

Good morning, ladies. I did talk to the ARNP regarding the precancerous skin issues. She said go back to the Dermatologist and explain my concerns and then discuss the risk. Since the skin issue at this point on the top, it would be better to treat it now, before it becomes a greater issue. I see the Derm on Weds. and MO on Thurs. I think the risk is worth it. Thanks for all the information. I will let you know what happens.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Jan 9, 2020 10:12AM MinusTwo wrote:

Petite - glad you posted an update. Do let us know what your derm says.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 15, 2020 07:45AM petite1 wrote:

MinusTwo, I am heading to the derm. I take risks everyday. I cook and could get burned or cut. I pet my cat and could get scratched. I sew and could stick myself with a needle. I forget and carry my purse on the wrong side. I go to the store and could carry a heavy bag. It is just another risk. So I put on the big girl pants and off I go.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Jan 16, 2020 08:04AM petite1 wrote:

Well, I have started the cream. So far so good.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Jan 16, 2020 08:24AM edj3 wrote:

I'll also offer my situation--biggest difference is the number of nodes removed so take my experience with a big grain of salt.

BUT! My dermatologist removed a very rare tumor from the back of my left arm (cancer side). All was well, then that path report indicated the margins weren't clean so I had to have it re-excised in mid-November last year. That one went a lot deeper and is longer as well. So far, it's good. I had a bit of swelling a couple of weeks later, and the PA suggested wrapping it w/ an ace bandage, so I did.

So hopefully you have a similarly good outcome.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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12 hours ago petite1 wrote:

Day 6 of the treatment. My right cheek is very red and burns. No other lesions have appeared.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)

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