Concerned about developing Lymphedema

Plum

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.

MinusTwo

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.

ruthbru

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.

Plum

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

Best regards,

Plum

ShetlandPony

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.

Plum

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

ShetlandPony

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. 😉

Cakencobbler1

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.

Trishyla

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

Cakencobbler1

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.

Trishyla

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

Trish

petite1

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.

MinusTwo

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.

petite1

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.

MinusTwo

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/

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.

petite1

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

MinusTwo

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.

petite1

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.

MinusTwo

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

petite1

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.

petite1

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

edj3

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.

petite1

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

MinusTwo

I posted this on other LE threads, but wanted to share this info here also since one major hospital is saying we are no longer at risk with blood draws. Pooh Pooh.

Here's the latest seminar posted on line from Dr. Stanley Rockson at Stanford. It's an hour & 30 minutes - but I thought really worth it - even the questions at the end.

https://stanfordhealthcare.org/medical-clinics/center-lymphatic-venous-disorders.html/presentation-mode/stanford-health-care-now/health-library-videos/rockson-lymphedema-treatments

And here's a short summary. Long, but shorter than watching the seminar/lecture if you decide it doesn't apply to you.

5/30/18 talk at Stanford - Center for lymphatic & venous disorders
Diagnosis, treatment & research
Dr. Stanley Rockson is a guru -Only half doz other docs in the US. You may have seen him on NPR

Still true - 1/2 the docs in North America have between 15-30 minutes of their entire medical training.
Fascinating new research since the last seminar online in 2012. But scary what as he tells what most docs will say if you go to them with problems.
Most important to PRESERVE working lymph movement which will PREVENT progression
ANY injury to the skin - cut, burn, insect bite, rose thorn, small scratch. ANYTHING that traumatizes the skin and needs a wound healing response can bring on LE. Including pressure changes in an airline. And he talks about locations over 5000 ft.

10 million people in the US have LE. 90 million world wide
With breast cancer - chances 15-20% of developing LE
90% of the problems develop in the first year but risk never goes away.
So after 2 years, you probably have 2% for the rest of your life. How much you want to work on preservation & prevention depends on how much a gambler you are???
If you get past that 1st year, statistics show you may not be prone to be pushed over the edge to progression.
But if you're in the 1% - do you want to take that chance???

With only 1-4 nodes (like SNB) you have only 1/4 of the risk - but you can get LE with only ONE node out
You have to determine what you are willing to risk.
Yes are finite risks with surgery on parts at risk - even if LE is dormant or sub-clinical. Weigh the benefits. Even carpal tunnel surgery

New bio-impedance surveillance - if treat REALLY early, can reverse the problem
Coming - Biobridge implant at time of breast surgery

AND FINALLY... here's the link to the lymphatic network. Select 'resource downloads' on the right for TONS of facts.

https://lymphaticnetwork.org/

gb2115

MinusTwo, thank you for posting that. I believe it's important to stay vigilant. Everyone is different. I had 3 nodes removed (1 was positive), and I have to be super careful. I did have radiation to the nodes which probably raised my risk. I had a couple of skin biopsies via the dermatologist on that side (breast and upper back), and both times it caused truncal edema, and with the one on my upper back, my wrist swelled up for awhile, over the next day. So far if I leave that side alone, it seems to be ok. But the key is, leaving it alone! I would be angry if some nurse somewhere tried to convince me a BP cuff or IV or whatever is safe, based on statistics. No thanks! So far though, everyone has been reasonable. Even at my colonoscopy they respected my desire to avoid using the cancer side and figured out where to place everything. I hope future procedures go as smoothly.

Spoonie77

Yep, glad you posted that MinusTwo. I developed LE of the Breast (later the Nipple too, who knew they could be separate!!!?!!) during RADs after my LMPX & SLNB. They "only" removed 3 nodes (all clear) BUT still developed the LE. It's a literal pain! My PT says that at this point, as it's been more than 18 months since RADs triggered the LE, this is likely my "friend" for the next 40-50 years of my life. Uggggh. So yeah, don't let ANYONE tell you that just because you don't have 20-40 lymph nodes taken out you won't have to deal with LE. No one warned me that RADs could trigger it. They were all surprised, while I was like, "oh yay I'm a unicorn all over again bc I tend to get all the weird things.". So be aware and DEFINITELY if you have LE, no matter if it's managed or low impact, do not let anyone take BP or IVs in that affected body side. It can make it worse! Thanks again MinusTwo for sharing the info. It's so important!

petite1

Spoonie77, Thank you for your post. I think I have LE of the surgical breast. It keeps growing and is at least a cup or two sizes bigger. When I had my surgical follow up appointment (March 23) the SO said the swelling would go down. It has increased. My surgery was August 23, 2019.

MsPrecious

Hi petite1,

I'm sorry to hear about the swelling. What you described is probably breast lymphedema. I had surgery August 5 2019 and had lymphedema around 1st week of January 2020. It caught me unawares as I wasn't informed to take any caution. Thank God I was sensitive enough to seek help immediately even though I was turned down many times that it was residual swelling from the surgery. No one even told me to wear compression bra and I had to wear the ACE wrap from the surgery for about 3 weeks until the drains were removed.

Please ask the SO or MO to refer you to a lymphedema therapist as soon as possible. If the breast gets too congested, it has the potential to backflow into the upper chest, armpit, shoulder, arm, forearm and fingers. From my experience, if you don't tell them that you feel tightness in your arms and fingers coupled with pain, they may not refer you. Please act fast. While you are waiting for the referral, go to prosthetics unit or mastectomy fitter in the hospital to measure you for compression bra, sleeves, and gloves or gauntlets. Be wearing those until help comes to prevent progression. I wish you all the best. Please stay safe.

Rah2464

Minus thanks for posting the link what an interesting presentation. How wonderful it would be if every program was as proactive as Stanford in performing the bioimpedence (sp?) test PRIOR to lymph node removal to set a baseline performance, then monitoring every quarter for the first year to watch for those early changes to get ahead of the lymphedema. Wow just wow.

petite1

MsPrecious, I have MO appointment 4/16. No pain, tightness or swelling in my arm. I will let you know what happens. Thank you.