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Topic: How Was Your Lymphedema Diagnosed?

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

Posted on: Jul 13, 2017 03:23PM

JuniperCat wrote:

I am wondering if you can share what methods, tests, tools, etc. were used in diagnosing your lymphedema. My BS says that a portion of my breast that was radiated has lymphedema (the skin is red, leathery, swollen with peau'orange type markings). What is more bothersome to me, however, is an area on the inner elbow that swells to the size of a large egg during the day and recedes during the night. My BS said it is not lymphedema and doesn't know what it is. My PCP, however, says that it is lymphedema. Anyway, sorry if this is long and rambling, but I would be very grateful if you were to share how your lymphedema was diagnosed. Thank you!



Dx 2015 stage 1A IDC 1.5cm ER+ PR- HER2-
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Jul 13, 2017 03:37PM MinusTwo wrote:

You need a referral to a certified, trained Lymphadema therapist. Most docs are not well versed about LE and tend to pooh-pooh our worries. Hooray for your PCP for considering it. Sounds like this is doubly important since you have some truncal/breast LE. The LE/PT will measure you and get started if treatment is required. Below is a link that was created with a number of our BCO members. Hopefully should give you some good information.

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

Juniper - when you get time, do go to My Profile and enter your diagnosis & treatment plans. It makes it easier to answer questions if we know that treatment you've had.


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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Jul 13, 2017 03:45PM JuniperCat wrote:

Thank you, MinusTwo, for responding. Also, I just made my treatment settings public. Why on earth are doctors not properly educated about lymphedema? And why don't they want to admit that certain treatments may have induced it?


Dx 2015 stage 1A IDC 1.5cm ER+ PR- HER2-
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Jul 14, 2017 06:56AM dtad wrote:

Hi everyone...IMO the medical profession in general are NOT properly educated on lymphedema. You have to be your own advocate when getting BP checks and blood draws. I also think the BS are reluctant to admit the surgery they do can cause it. Just not right!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 14, 2017 07:22AM JuniperCat wrote:

dtad, I agree with you. I'm also wondering if perhaps radiation can cause it? I only had two lymph nodes removed; and I noticed the swelling in my arm about five weeks after I'd finished with radiation.


Dx 2015 stage 1A IDC 1.5cm ER+ PR- HER2-
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Jul 14, 2017 08:31AM gb2115 wrote:

Radiation can definitely cause it. Not all docs blow off lymphedema concerns...my BS is the one who originally sent me to a lymphedema prevention and monitoring program right after surgery without my even asking about it. Guess it depends on the doctor!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen.
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Jul 14, 2017 10:53AM Spookiesmom wrote:

I woke up from BMX, 11 nodes out surgery with my entire arm and hand swollen. Yes, that quick.

Dx IDC, Stage IIIA, Grade 3
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Jul 14, 2017 11:05AM - edited Jul 14, 2017 11:06AM by MinusTwo

Yes radiation triggered most of my LE. The RO doc recognized it right away & sent me for treatment.

Edited to say, I did have ALND (auxilliary lymph node dissection) before rads so I'm sure that was a contributory issue.

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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Jul 15, 2017 06:05PM LymphActivist wrote:

Get a referral to a trained and certified lymphedema therapist for a diagnosis and treatment plan. It sounds like you may have localized lymphedema at the inner elbow, a common site. It also sounds to me that the breast radiation has caused breast lymphedema or delayed breast cellulitis. Both can be helped with manual lymph drainage to reduce swelling, and compression to maintain the reduction.

See the discussion on breast lymphedema on my web site at www.lymphactivist.org RESEARCH --> BREAST LYMPHEDEMA --> For Therapists.

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Jul 15, 2017 08:36PM JuniperCat wrote:

Thank you, LymphActivist!!!


Dx 2015 stage 1A IDC 1.5cm ER+ PR- HER2-
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Jul 15, 2017 10:06PM - edited Jul 15, 2017 10:10PM by ChiSandy

Even before surgery, my BS' NP measured me for a sleeve & gauntlet because I was planning to travel to Europe once rads were over. Mine was diagnosed after seeking a consult for cording in my right inner forearm 2 weeks after finishing rads. By the time of my appt., the cord had popped, but I mentioned to the LE specialist (Dr. Joseph L. Feldman, a founder of LANA) that I had some finger swelling during my flight home. Probably due to a combination of the salty airline food and the gauntlet being too short (didn't cover my knuckles), but he diagnosed me with Stage 0 LE despite the difference in measurements being due to my R arm being the dominant one, only so that Medicare would pay for my PT sessions. I still follow all precautions—compression during resistance & weight training (the latter of which I worked up to very gradually), for flights >4 hrs, repetitive arm motion against resistance, and trips to high altitudes. Staying out of saunas & steam rooms, keeping my R arm out of the hot tub.

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 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jul 20, 2017 11:53PM ajefferies wrote:

I was concerned about lymphedema at my mastectomy consultation. They recommended that I talk with a physical therapist after the mastectomy. I ended up having cording, which needed to be treated as well as gaining movement back in my shoulder and they monitored me for lymphedema. I had swelling between the removed breast area and shoulder blade, so under my armpit a few inches. Then I had some swelling in my upper arm. They take measurements with a tape measure and I think if it increases like 2 cm, it's considered lymphedema. They gave me a sleeve, but said maybe I didn't have it because it wasn't at 2 cm. I wore the sleeve when it bothered me only. Swelling increased over the next several months as I completed radiation. 7 months from the mastectomy I went back to the PT to get another sleeve and there was more swelling. I ended up needing compression, which is a bandage many layers thick including foam from fingers to shoulder. I wore it 24/7 for about 6 weeks. Also used a pump at therapy and now have an at home pump, which is wonderful. My arm feels so much better after I use it. Now after switching insurance, having trouble finding a good place to fit me for a sleeve. The Blue Cross Blue Shield website is not helpful for researching lymphedema treatment at all. The places they recommend that I go don't have the Mediven brand that I know fits.

Dx 9/3/2015, LCIS/ILC, Left, 6cm+, Stage IIIA, Grade 1, 1/20 nodes, ER+/PR+, HER2- Chemotherapy 10/13/2015 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Jul 21, 2017 07:01PM TampaBayBucsGirl wrote:

Hi JuniperCat,

I have lymphedema of the breast (the whole breast). I don't have the inner elbow swelling, but I had some swelling under my arm (and some cording). It all happened during radiation therapy (for me). I noticed the peau'orange type markings, and so did the radiation techs. My RO diagnosed it and gave me a referral to the outpatient rehab center of the hospital. I wasn't able to do it right away. He advised to wait until after radiation therapy. I was in the last part of the treatment when they were doing the radiation boost that targets the tumor bed. He didn't want anyone massaging it at that point. I also had a very nasty burn near the sentinal node biopsy incision. So, I also had to wait for that to heal.

I'm currently in the last week of lymphedema therapy. There is one thing you may need to know. Make sure to check your insurance plan. My plan only allows me to go to a licensed lymphedema therapist. I'm fortunate that they have 2 at the hospital. I was scheduled with an assistant who did a really good job (but they couldn't schedule me with her again because of my insurance). Sometimes the lymphedema therapy assistants are just as good.

Anyway, the massages have really helped a lot. They've been taping my breast as well. It's all kind of interesting how they can reduce the swelling and smooth it out that way. They also gave me a prescription for a FlexiTouch System and some compression bras. The representative gave me an at home demonstration of the system. It's supposedly uses the same massage technique as a therapist. I'll have to use it an hour a day for the first 6 weeks. I'm hoping I get good results from this system. I'll update anyone who is interested.

Dx 9/29/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/25/2016 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 12/1/2016 Herceptin (trastuzumab) Chemotherapy 12/1/2016 Taxol (paclitaxel) Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/28/2017 Whole-breast: Breast
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Jul 21, 2017 09:48PM JuniperCat wrote:

Thank you, TampaBay, for your response. It sounds like you have a great RO! I'm guessing that many don't want to admit that lymphedema has been brought on by radiation. Did the treatments help with the peau'orange markings? -junipercat


Dx 2015 stage 1A IDC 1.5cm ER+ PR- HER2-
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Jul 21, 2017 10:10PM Outfield wrote:

Hi Junipercat. There is no widely-used easy diagnostic test for lymphedema. Probably the most common thing done is measurements, but those can be very misleading, and they aren't replicable (meaning one examiner is not likely to get exactly the same measurements as another, even if they were to come one right after the other into the room). Misleading because it can be normal for the dominant arm to be bigger. There are more sophisticated tests, but they're not widely in use.

There are physical exam findings that I bet are better than the measurements, but I don't know if anyone has ever studied them. Simple things like how visible are your veins, or if you pinch up the skin - especially somewhere easy like the back of the hand - how thin is that pinch.

So, unless someone has one of the pieces of sophisticated equipment, which is not likely, a diagnosis is probably going to be made by combining things like exam and measurements.

Also, if you look at a map of the lymphatic system, there is a convergence of them in the area of the inner elbow. It's kind of like the axilla in being a "hub" of lymph travel. My own lymphedema is thickest on the inside of my forearm, worse toward the elbow, which my lymphedema therapist said is a common place.

There's' a great web site, http://www.stepup-speakout.org , which was created by some women who were very active on this board at one time. They may still be - I haven't been on much myself the past few years to know. What I can say, as both a medical professional and a patient with lymphedema, is that the information on that site is going to be more than anybody gets in med school and more accurate than a lot of patient information you'll encounter from very mainstream sources. There's been precious little lymphedema research, but the past 10-15 years have seen a major change in how it's thought about. It takes a while for patient info (and a lot of doctors) to catch up.




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Jul 21, 2017 10:42PM - edited Jul 21, 2017 10:43PM by JuniperCat

Dear Outfield,Thank you very much for your response and your recommendation to check out StepUp/SpeakOut. Others have recommended that website as well. I never thought that I would even remotely have this issue since I had had only two lymph nodes removed. I did have cording after surgery but that went away after a few weeks. My MO, whom I saw recently for my annual appointment, told me that lymphedema only affects the extremities and he examined my hand, which looks completely normal.He doesn't know what to make of the swollen inner elbow. I left thinking that perhaps this elbow thing is something else. But my BS said that I have lymphedema on my breast from radiation. I'm wondering: do they not educate health professionals about lymphedema? Why are the doctors so afraid to admit that this issue exists? It's all pretty vexing. Again, thank you for your reply. I've not heard of anyone else having this problem with the inner elbow before. I'm curious, is your lymphedema in your dominant arm? Again, many thanks!-junipercat


Dx 2015 stage 1A IDC 1.5cm ER+ PR- HER2-
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Jul 22, 2017 07:53AM TampaBayBucsGirl wrote:

Yes, JuniperCat. The therapy has helped a lot with the peau'orange markings. It also helps with the little lumps on the nipple (if you have any). I have to say that there will be some discomfort as they start massaging the areas for manual drainage. Especially when they work through the area of the scar and the nipple. I'm not sure if your breast tissue hardened up like mine did, but I can tell it is much softer now. There's still some swelling. I still get indentations from my bra, but it takes time to route the fluid to a different area of the body. I've only been in therapy for 3 weeks.

Also, my RO saw it as lymphedema because of the symptoms. He didn't say it was caused by radiation therapy. I think they all kind of skate around that question. I only had 2 nodes removed and they were both clear.

Outfield is correct about the measurements too. They'll measure your arm, but the breast is very difficult to measure. I do remember getting a more sophisticated test before my lumpectomy surgery (for the arm and leg). They've been comparing the results to that. My arm measurements have been the same. I don't think anyone gets a breast measurement until you need a compression bra. By then, it's too late.

Dx 9/29/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 10/25/2016 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 12/1/2016 Herceptin (trastuzumab) Chemotherapy 12/1/2016 Taxol (paclitaxel) Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/28/2017 Whole-breast: Breast
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Aug 16, 2017 08:44AM WeeNelson wrote:

Hi all. I'm a newbie on this forum. After a right-arm mastectomy and ALND last October, followed by chemo and radiation, I was dianosed with LE just last month.

I think what triggered the LE was an injury I incurred while doing overly vigorous aquafit. I'd been informed about the risk before surgery, so was on the lookout for swelling, and when I saw it I went straight to the doctor and bought the compression sleeve. Being informed didn't help much in dealing with the diagnosis, though - it was as much of a shock as being told I had cancer. More so, since I'm evidently stuck with this for the rest of my life.

I'm doing physio with the pump, and self-massage, and wearing the sleeve to get the swelling down, and it seems to be working, but occasionally I do something that increases the swelling and that's upsetting. Yesterday I made a slow-cooker stew, cutting up vegetables and washing out the heavy pot; and today the sleeve is noticeably tighter. I'm not quite used to that yet.

Ironic that I didn't feel like seeking out the online community during treatment - it's in coping with the post-treatment after-effects that I need the most support. Thanks for being here.


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Aug 16, 2017 11:57AM Moderators wrote:

Dear WeeNelson,

Welcome to the BCO community. We are sorry that your newly diagnosed lymphedema brought you here but glad that you reached out to our community.We hope that you will receive the support and information that you need here from our members. While you are waiting to connect with others check out this information page on Lymphedema on our main site. Let us know how we can help you here. Don't hesitate to reach out to us. The Mods

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