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Topic: Lymphedema guidance

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

Posted on: Aug 4, 2017 07:04PM

Bdagal wrote:

hi ladies - I finished radiation in May. (No chemo). About a month ago, I noticed that my right arm was heavy and sore, fingers swollen, electric shocks in the forearm, bra super tight on right side. Ive been to the lymphedema specialist twice now but had to cancel my last appt as the massage, as light as it was across the chest, feels like it has irritated my chest tissue and it's so uncomfortable! Then to make matters worse, I was at a concert 2 nights ago, and they had those giant balls that look like big balloons, and I hit it with my right arm expecting it to be light, but it was actually pretty heavy and i felt it immediately across my chest (ow!!!). Is there anything I can do to ease this feeling in my chest? I'm thinking that my chest was not sufficiently healed yet, before having that massage. Sigh

Dx 1/4/2017, DCIS, Right, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 1/25/2017 Lumpectomy: Right Radiation Therapy 4/12/2017
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Oct 10, 2017 09:35PM Jackiebro wrote:

runor...I only had 3 nodes out. I don’t measure ENOUGH to be called LE. So they say I’m mild. And I must be really sensitive.

Um, I read and read. I have classic symptoms. Pressure, fullness, major hypersensitivity after surgery, feels like a blood pressure cuff on high on my upper arm. Can’t stand long sleeves because my arm feels tight. Prefers muscle tanks so nothing touches it to remind me that it feels fat & full. When I brush the skin in that area, I feel the fluid and I see the swelling.

I wish they would stop measuring & trust that my symptoms are real. But it doesn’t change anything... mld OT is so important. I hope you have a good Lana certified therapist.

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Oct 11, 2017 02:00PM Binney4 wrote:

Runor, our lymphedema that results from cancer treatment is called "Secondary Lymphedema," because it's secondary to surgical and radiation trauma. Lymphedema that results from an in-born defect of the lymph system is called "Primary Lymphedema". People can be born with primary lymphedema present (usually affected lower limbs), or it can develop around the time of puberty. Many of us with LE secondary to breast cancer treatment have had a hard time getting our doctors to acknowledge the condition and/or to refer us to proper treatment, but some with primary lymphedema wait literally years for their condition to be diagnosed, meanwhile being accused of overeating or oversensitivity to "a little swelling."

We breast cancer-related lymphers are not even the only cancer patients who develop LE. Node sampling for melanoma, gynecologic and prostate cancers, and head and neck cancer can also result in LE. These are far less likely to be acknowledged than BC-related LE, and in some cases can be much harder to treat effectively.

It's also possible to develop secondary LE from any trauma. For instance, football players who sustain repeated trauma to their chests, or people with smack into the steering wheel in an auto accident. After the earthquake in Haiti there was a glut of new LE problems because of crush injuries from collapsing buildings. For all these people, finding diagnosis and treatment can be a frustrating life-long journey.

There is a third cause of LE, found in tropical countries where a mosquito-borne parasite infests the lymphatics, blocking lymph flow. This condition is usually referred to as elephantitis, and it can result in truly grotesque disfigurement.

For those (even doctors) who trivialize LE as "just a little swelling," the facts are that LE is an inflammatory condition that creates changes in the underlying tissues, resulting eventually in an accumulation of fibrotic tissue below the skin that cannot be reduced, which is one reason why prompt treatment is critical. Left untreated, LE can cause skin texture changes and leakage of caustic lymph fluid through the pores, resulting in skin deterioration and weeping wounds. And every kind of LE also compromises the immune response in the affected areas, making infections more of a problem.

All that just to say, the actual nature of LE is too little understood even in the medical community, leaving us to be our own best advocates, and making forums like this one absolutely essential to getting the best care to the biggest share of lymphers. I'm thankful for all the sharing that goes on here and grateful to bc.org for making it available.

Onward, all!
Binney

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Oct 11, 2017 02:44PM runor wrote:

Wow, Binney, I did NOT know all that. I see I have more learning to do. I have to deal with this a bit more seriously than I have been I realize. Thank you.

Jackiebro, like you, for having very few visible changes ( they are slight) the physical sensations are very upsetting, uncomfortable moving into painful. Used to be I felt that way in the evening but woke up fine the next day. Now I wake up feeling that way. Things are getting worse.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast
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Oct 12, 2017 01:07AM - edited Oct 12, 2017 01:10AM by hugz4u

Runor so glad I was surfing the other night on bco and bumped into you.

This is a great place to learn how to control lymphedema. Also some girls here wrote a fantastic website called stepup-speaking.org where you can also learn everything about this condition. That website will help you find a therapist in your area that has decent qualifications. They will help you gain control and have a better life. Yeah moving forward.

If your proactive it will be so much easier taming the le beast. Education is key here and that means POWER!

Yes some doc will poo poo the thought that you have le. Mine laughed in my face and said I wouldn't. I had no swelling or even pain for that matter. Just tingles. Feeling full and heavy when doing big chores. Got rid of that dang doc eventually. I'm wishing him to be wrapped in le bandages and stuck up on the Seattle space needle just because....he needs to suffer a bit like us.

No more chopping wood and other heavy chores till you get this figured out. Please don't volunteer to move someone and all there boxes right now. Anything your not use to csn cause more swell.

Yes we do have pretty normal lives here but managing le can be time consuming but worth it in the end.

We have some that fly fish. Horse ride, bike, ski hike etc. It can be done we just have to dress our cuts and bug bites with antibiotic and watch for infection. Just watch to not tire your arm and take frequent breaks. Just put in five hours gardening but I did build up to that. I usually start out with about a hour till I'm use to the work and repetition of it.

And once your ready do join our le kick butt thread for exercise because that's so helpful for le. No competition just encourage each other and checking in o report our exercise. It's a fun thread!

So go ahead and post questions and we'll try our best to help.

Meanwhile pop on a super tight Cami to help your breast/ trunk swelling. Drink lots of water. Rest arm above heart. Stick arm straight up in air and pump fist 25 time thru out day to help drain fluid.

Take care.






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Oct 12, 2017 01:46AM runor wrote:

Thanks Hugz4u for encouraging me to pop over here. I will check out that site you posted. I see I am on the learning curve of how to manage this - like telling dear Hub that I CANNOT be whacking big pieces of wood with that 5 pound maul anymore. He is on wood splitting duty now.

Is that a dahlia beside your name? I have become a dahlia fiend in the last few years... every year I buy a few more gorgeous tubers. I LOVE dahlias!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast
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Oct 12, 2017 02:35AM - edited Oct 12, 2017 02:43AM by hugz4u

runor love love love dahlias. And their le friendly. No thorns and easy to manage. I leave mine in ground unless I split them. Me lazy gardener! lost 15 to extreme cold winter Then this year was cold spring out west. I'm trying to cut back on purchasing because I'm getting to be an old dog and their is too much gardening at my place. I have about 30. Here is my newest. Named Bodacious. Awesome color on both sides of petal. It's a big one.

Yes your done wood chopping. I think you had some other heavy chores listed on the other thread. Be nice to le arm and it will treat you right.

In aug I blistered, gouged and crushed my finger connecting two pipes together just because I didn't want to bother DH to do it. Well I suffered big time. Even though I dressed it and watched it like a hawk I ended up being allergic to polysporin and it swelled huge. I'm still wearing a bandaid when I'm out and about cause it's healed but tender. We gotta take care of ourselves but still need to live. It's a balancing act. Agh bedtime

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Oct 12, 2017 09:52AM runor wrote:

I have lifted my tubers, have to or they are guaranteed to freeze in the ground. I can see where this dahlia hobby does get out of control though! I was smart and put on my sleeve to be out working in the garden with a fork and spade.

It bothers me to give up splitting wood and raking and hoeing and chicken house cleaning and humping the wheelbarrow into the bush to dump it. It makes me feel useless and like an invalid and I do NOT like that one bit! It's almost not fair to dump all that on Hub. He is gone 12 hours a day as it is and I can't ask him to do even more. It was always me holding down the fort, taking care of business here because he is not here to do much of it. This sucks.

PS, that site has tons of information and I can see it is going to take some time to get through it all. Good reads.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast
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Oct 13, 2017 01:54AM hugz4u wrote:

runor. You sound like me. I hate giving up independence but eventually I realized that I could make my le worse if I didn't give up a few heavy duty things otherwise DH would really have more work in the end if my arm became totally useless. I try to stick to lighter duties but yah it's a internal fight.

Yes dahlia hobby is so catchy.

Good for you for looking after your arm!

Planted another tree today. Contorta dwarf larch in a huge pot. It's a beauty! I had to go up and down 13 stairs 6 times lugging dirt up. I rember days when I had a good arm and could do it in two flights. See with le we can still do things but it might take longer cause we got to work smarter to beat the le beast.

Then I took it easy.

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Oct 13, 2017 02:32AM PauletteK wrote:

Hugz this is beautiful!!! I wish I can work on my garden, still need to finish my chemo.

PK Dx 4/1/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Surgery 6/15/2017 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 7/20/2017 AC + T (Taxol)
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Oct 13, 2017 08:51AM Jackiebro wrote:

runor... I am learning so much!!!! I had a great appt with my therapist! So I keep getting told that my feeling of fullness, tightness, aching, throbbing down the arm, arm fatigue... is not lymphadema because my measures are not significant enough... well, I am starting to believe them!


I believe I have mild lymphadema and the symptoms are actually caused by nerve entrapment. For the first time since February, my pain level is coming down!!

The area where my lymph node incision is in the armpit is called the nuerovascular sleeve. It carries arteries, nerves and tissues that affect arm & hand. Once my therapist did Active Release Technique ( google it ) I. Began to feel numbness go away! My pain level went down! I have had two sessions with him and he worked on the subscapularis and the neural vascular sleeve.


I wonder if others are dealing with entrapped nerves but think it is LE? I believe I still hv mild LE... but nerves were my biggest pain!


Jacki

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Oct 13, 2017 08:53AM Jackiebro wrote:

one more thing... he worked on this area and said the nerves are entrapped because of adhesions forming in the area!! Ah ha

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Oct 13, 2017 05:29PM runor wrote:

Jackie, interesting! I hope you ARE getting to the bottom of this and resolving some of the issues. Any improvement is reason for the happy dance! I will keep this in mind because I too only have slight swelling in the arm, although I can tell by how my wedding ring fits and how much my compression sleeve aggravates me! There is some swelling, and I want to keep it that way, it could be much worse!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast
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Oct 14, 2017 03:09AM PauletteK wrote:

Have anyone get the lymphedema pump? On my last Pat appointment I have tired out the pump, it worked great. It can do more fluids moving then manually. I had 3 Pat appointment my arm measurements became smaller.

I’m trying to learn how to massage my incisions and I’m still trying to be better. So glad my insurance just approved more PT sessions for me. I’m hoping to get myself better before radiation.

PK Dx 4/1/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Surgery 6/15/2017 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 7/20/2017 AC + T (Taxol)
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Oct 15, 2017 10:45AM - edited Oct 15, 2017 06:59PM by hugz4u

I haven't done pump but I see you have good results. I do know we should not rely solely on the pump though. We are todo all the other care also. MLD. Garments, Exercise .wrapping if you need it etc

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