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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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Aug 4, 2017 07:48PM Binney4 wrote:

Oh, bummer, Bdagal! I'm so sorry you had to even think about your arm and chest at the concert, much less feel it that way and be drawn out of the concert experience.

Sometimes after surgery and rads the nerves object for awhile and need time and gentle encouragement to settle down again. Then again, chest lymphedema itself can be really painful (usually arm lymphedema, while it can be uncomfortable, is more achy/heavy than outright painful). The only way to ease the pain of chest lymphedema is to reduce the swelling. If your lymphedema therapist is someone you can talk to and trust, do check in with her about the pain and see what she recommends.

Has your therapist suggested any compression for your breast/chest? There are some gentle options that might give you the support you need without Irritating your skin, while they control the swelling as well. That was helpful for me while I struggled with reducing the swelling and getting it (and the pain) under control. There are lots of compression ideas to consider at the bottom of this page:

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

Hope this is soon resolved, and please do keep us posted. Gentle hugs,
Binney


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Aug 6, 2017 07:29AM Bdagal wrote:

Thank you for that link, Binney4!! It's much appreciated! My therapist hasn't recommended any chest compression garments, just an arm sleeve.....I will def ask her about these.

Doesn't help that it's summer and I live in Bermuda......it's very hot right now!

Have a great day

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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Aug 6, 2017 08:23AM TampaBayBucsGirl wrote:

Hi Bdagal,

I can tell you from experience that the article that Binney4 posted is very helpful and accurate when it comes to breast lymphedema. I just finished my therapy about a week ago, but I feel that I may need more of the massage therapy (especially around the scar tissue and nipple). My surgeon is onboard in getting me authorized for more drainage sessions. I can tell you that I still have similar symptoms. My arm is heavy when I wake up in the morning, and my fingers swell a little. It swells enough that I can't wear my wedding band at certain times of the week. The good news is that the pain will go away as they keep massaging the areas that are clogged. Yes, it's painful in the beginning. I was sore the first 2 weeks, but it gets better.

As Binney4 mentioned, you'll definitely need a compression bra to reduce the swelling. The therapist also prescribed a Flexitouch pump system to help in maintaining that flow after therapy. You may want to ask your therapist about it (for the long term). I've just started using it. It has only been 3 days so I don't have a lot of feedback yet. I can say that the breast and arm feels better after using it. This particular system routes the fluid to the nodes in your groin. It appears to be doing just that, but it doesn't smooth out the scar tissue in the breast. I'm going to take my surgeon's advise and schedule more treatments with the LE therapist. This way they can also see if the pump system is actually working (or not).

I'm curious though regarding the arm sleeve. Did they take measurements prior to your surgery and compare them to your current measurement? Just wondering because there would be swelling in your arm as well. Wow, I can only imagine how hot it would be to wear and arm sleeve in Bermuda. You all have the same type of humidity as we do in Florida. I stopped wearing my wig because of that.

I have no swelling in my arm. My swelling is mainly under the arm where the nodes were removed, and the whole breast. They didn't think I needed the sleeve or gauntlet. I'm taking Herceptin and Tamoxifen which I believe also causes some edema. So, it may be a combination of things for me. I also have joint pain in both arms and hands (when waking up in the morning).

Hope you're feeling better after the break from therapy. I know it's painful in the beginning, but it will get better. I promise you.

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 12/2/2016 Herceptin (trastuzumab) Chemotherapy 12/2/2016 Taxol (paclitaxel) Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/1/2017 Whole-breast: Breast
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Aug 7, 2017 12:07PM Bdagal wrote:

Hi TampaBayBucsGirl....we never took measurements pre-surgery as that was back in January. We've done measurements just comparing my right arm to my left at about 8 different spots, and it was about 1 1/2 cm bigger on the right at each spot, and 3cm bigger at the upper part of my arm. It's not a dramatic difference - nobody else would really recognize it, other than my arm not hanging quite naturally at my side. I didn't have any nodes removed, but they were definitely in the radiation zone (I've got a line across my armpit where quite clearly no hair is growing underneath anymore! So I only have to shave the top half of that armpit, lol!). I'm def going to look into the compression bra as right now that really is quite annoying, this fullness around my right ribs and back/shoulder blade area.

Good luck with your Flexi Touch pump. Hope you get relief from that!

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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Aug 7, 2017 07:14PM TampaBayBucsGirl wrote:

Yes, that sounds very ouchy. I'm so sorry to hear that. Especially the fact that it's in the trunk and shoulder area. It sounds like you may need both the sleeve and compression bra. I'm sure the swelling will go down as you continue therapy.

I had to laugh about the armpit. I know that line very well. Good luck to you too!

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 12/2/2016 Herceptin (trastuzumab) Chemotherapy 12/2/2016 Taxol (paclitaxel) Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/1/2017 Whole-breast: Breast
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Aug 12, 2017 07:46PM Tess111 wrote:

I want to cry or scream! Is this as good as I can expect?

Since October 2016 I have had a persistent pink rash, and eventually peau d'orange skin. I was sent to a lymphedema therapist – the only one in our town. I had seen my original surgeon – just a general surgeon who had performed my lumpectomy and the sentinel node biopsy, because of the rash, and my persistence with my RO that I was concerned I had IBC. General surgeon said it was not IBC, he had seen it before and it would eventually clear up – Not!

So eventually, with more persistence, I was given a 10-day course of antibiotics, which got rid of a purplish triangular bump that appeared on my skin, but didn't have much of an impact on the reddish rash. I would eventually see a CNP at a breast surgeon's office that is about an hour away. Thanks to her efforts, I have had two diagnostic mammograms, an ultrasound and a punch biopsy. All of which showed thickening but no cancer.

My RO thought maybe it might be lymphedema and he arranged for me to go see the local lymphedema specialist. She did not seem to be familiar with breast lymphedema or if she was she wasn't sure that's what I had. I saw her for 5 sessions over a six-week period. Here is what took place.

  • She gave me a paper on lymphedema. It pertained more or less to arm lymphedema, but there was some good information.
  • She showed me how to do manual lymph drainage in the second session and each time we met after that she would have me show her how I was doing it. (Which was good because repetition and doing it myself are my best ways of learning something new.)
  • She gave me a paper showing me the bra she wanted me to get from a specific company. I ordered that bra, but when it came in it was not the same as pictured. She spent a lot of one session calling them and waiting for a reply, which she did not get. I went home and called them up and was told that they had changed the style two years previously, and no longer had that style. After some serious research, I went to StepUp-SpeakOut website and found something similar to what the therapist had suggested. I wore it the next time so she could approve it.
  • She cut out two "chip pads" from material she had and gave them to me to wear.
  • She said she gave me some exercises, but it wasn't in the material she gave me.


She told me that I didn't need to come back. My breast tissue had gotten softer and she thought the breast wasn't as red. She said the redness might never go away and if I needed anything to give her a call.

Well, it's been over two months since our last session, and there is no improvement. It is still swollen, still red, and still has peau d'orange.

I am doing the MLD that I was taught and wearing a compression bra, plus a compression shirt at night. I do an arm stretch that I found online. I also have a sleeve and gauntlet that my MO had prescribed for me when I asked her if it was okay to ride my stationery bike. I don't even know for sure if I have lymphedema. No one has said, you have breast lymphedema.

My RO said that I am stable and he is 90 percent sure that it isn't cancer – what? This was after the last mammo and ultrasound. The CNP says I am stable and because of my dense breasts, she is recommending an MRI alternating with a mammogram going forward. No one seems concerned about the redness and the orange peel skin. My breast is still swollen and the swelling is painful at times. My husband, who helps me with the nighttime MLD says it isn't getting any worse. So, is that it? Is that the best I can expect? I just want to cry!

Dx 7/5/2016, IDC, Left, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/20/2016 Lumpectomy: Left Chemotherapy 9/10/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/12/2016 Herceptin (trastuzumab) Targeted Therapy 9/12/2016 Perjeta (pertuzumab) Radiation Therapy 12/12/2016 Whole-breast: Breast Hormonal Therapy Femara (letrozole)
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Aug 12, 2017 11:40PM Binney4 wrote:

Tess, I hear you, and I'm so sorry for your frustration. Have you checked for qualified lymphedema therapists in any surrounding towns or cities? You clearly need a therapist with more experience treating truncal lymphedema. Here's how to find one in your vicinity:

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

Lymphedema is an inflammatory condition, so continued redness, skin changes and thickening are not unheard of, especially in the breast/chest area, and breast/chest lymphedema is notoriously painful at times. These changes in color and texture can take a long time to diminish, but if you're not seeing any change, it may be because the fluid has not been sufficiently reduced in the area. Brava for you for finding your own chest compression, following all the procedures you've been taught, and continuing to advocate for yourself! But it's time you had someone on your team with the skill and experience to help you tackle this, so I sure hope you can find someone not too far away. It's great that your therapist taught you to do self-MLD, but a course of lymphedema therapy actually involves the THERAPIST doing MLD on you at least three times a week (five days a week is better) for four or more weeks. The MLD we can do ourselves is good for maintenance, but trained therapists use several different hand positions and techniques that are more complex than what we can do ourselves. (Her MLD should include your back as well, which is especially difficult for us to do ourselves.).

Tess, you deserve better--keep on fighting! And please do keep us posted.

Gentle hugs,
Binney


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Aug 13, 2017 03:28AM Outfield wrote:

Bdagal, don't cancel a therapy appointment because the last session made you sore! The therapist needs to know that and incorporate your response into your treatment plan. When people don't go to their follow-ups because they felt worse after treatment, they lose that opportunity to adjust the plan and go forward.

And just to clarify, this was lymphedema massage, right? Massage for lymphedema is incredibly light, just moving the skin a little bit pulling with a force nearly parallel to the skin surface it in circles without a lot of downward pressure.

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Aug 13, 2017 07:36AM - edited Aug 13, 2017 07:38AM by marijen


Although the lymphatic system is often overlooked, it is essential part of the body. It is made of tissues and organs that work in synergy to flush out toxic matter, waste, and other unwanted materials from the system.

Given that the lymph fluid contains white blood cells which have critical role in fighting off infections, keeping a healthy lymphatic system is of utmost importance.

Common Symptoms Of A Congested Lymphatic System



  1. Breast swelling or soreness with each cycle
  2. Dry skin
  3. Mild rash or acne
  4. Hypersensitivity
  5. Rings get tight on fingers
  6. Soreness and/or stiffness in the morning
  7. Feeling tired
  8. Bloating / Holding on to water
  9. Itchy skin
  10. Weight gain and extra belly fat
  11. Swollen glands
  12. Low immunity
  13. Brain fog
  14. Mild headaches
  15. Elevated histamine and irritation due to common environmental allergens
  16. Occasional constipation, diarrhea, and/or mucus in the stool

Three Major Causes Of Lymphatic Congestion

Even though lymphatic congestion is triggered by a wide range of factors, everything can be narrowed down to three major causes.

  • Stress
  • Iodine deficiency
  • Digestive imbalances
  • Constricting clothes

3-Day Lymphatic Detox To Improve Lymph Health

If you experience at least three of the symptoms outlined above, you`ll need to do a lymphatic detox to improve your lymph health. The good news is that you need only three days to drain your lymphatic fluids!

Read through the following guidelines and prepare yourself, particularly for the rebounding exercise which is a great way to drain your stagnant fluids. Drink herbal tea during the detox period, take a detox bath, dry skin brush, drink plenty of water, and do some brisk walking. You`ll feel the difference in a matter of days!

1. Drink Plenty of Fluid

Since the lymph is made of nearly 95 percent water, water is critical for its health. Therefore, make sure you stay hydrated by drinking half your weight in ounces of water daily in order to avoid improper lymph flow.

In addition to water, you can have freshly-squeezed juices, broths, and herbal teas, all of which help the lymphatic system move while mineralizing the body and the lymph. It is worth mentioning that green vegetable juices are one of those good-for-you beverages which do deep cleanse of all detox organs, including the lymphatic system.

2. Herbs

There are many lymph-supporting herbs which have been shown to improve lymphatic health, whether in facilitating the elimination of toxic matter or improving lymphatic drainage. Some of those herbs include:

– Red root ( It helps reduce cysts, reduce swollen nodes, send nutrition to the tissues, and alleviate the stagnation of fluids)

– Red clover ( It improves circulation, which in turn reduces inflammation and promotes detoxification of the body)

– Manjistha ( This Ayurvedi herb is used to alleviate the stagnation of fluids by promoting lymph flow)

– Echinacea ( It boosts immunity by detoxifying the lymph fluid and it invades tumor cells and increases the production of T-lymphocyte, cells needed for clearing up extra-cellular fluids)

– Cleavers ( It helps dissolve cysts, reduces the swelling of lymph nodes, and helps dissolve kidney stones)

To sum up, drinking these herbal teas helps detoxify the lymph and boost its function.

3. Exercise

Rebounding is the best type of exercise for detoxifying the lymphatic system. It involves jumping on a trampoline and it works by opening up the lymphatic valves and improving circulation. It is recommended to do this for 15-20 minutes on a daily basis.

4. Near Infrared Sauna

This therapy penetrates into the skin, promoting sweating and elimination of toxic matter. The release of toxins and the heat work in synergy to improve the lymphatic flow.

5. Brisk Walking

Brisk walking is simple, yet effective way to get the body moving and stimulate lymph flow. Aim at getting about 45-60 minutes a day, while breathing as deeply as possible.

6. Legs Up The Wall

Lying with your legs up the wall enhances the lymphatic flow by stimulating the activation of the lymphatic valves for eliminating toxins. Plus, it helps sleep better at night, too.

7. Lymphatic Drainage Massage

8. Standing Desk

Sitting down is bad for the lymphatic flow, while standing desk promotes lymphatic drainage and ensures you get more natural movements throughout the day.

9. Hydrotherapy Shower

Hydrotherapy shower involves use of hot and cold water alternatively. At the end of the shower, switch the water from hot to cold very quickly. Repeat a few times!

10. Deep Breathing

Being quite simple, deep breathing is something anyone can do. But, it`s an effective way of stimulating lymph flow, since the lungs are the ones that pump your lymphatic fluid.

– Stretch the arms to both sides and then move the arms up while breathing through the nose. Then, use your hands to make circles and breathe deeply from the lung, not the stomach. Hold the breath for a few seconds.

– Move the arms down while exhaling through the mouth and making circles with the hands

– You are likely to feel a bit dizzy after doing this for a few times, which indicates that your body is eliminating toxic matter. Stop at this point!

While doing this, think: 'wash the cells, feed the cells, purify the cells' to help pump out the toxins.'

11. Dry Skin Brushing

Dry skin brushing provides a wide range of health benefits, from improving lymphatic flow and optimizing detoxification to boosting organ functions and boosting energy levels.

Here's How To Dry Brush

  • Get a natural bristle brush with a long handle
  • Stand in the shower room/ bathtub
  • Start dry brushing, starting from the feet and moving toward the heart by using long motions. Ultimately, move on to the hands, again brushing towards the heart.
  • Brush several times in each area
  • Pay attention to the more sensitive areas, like the breasts
  • Take a shower, when done. Alternate between the hottest and the coldest temperature to stimulate blood circulation
  • Pat dry the body and then apply coconut oil onto the skin for hydration
  • For optimal results, dry brush every day before taking a shower
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Aug 13, 2017 07:39AM marijen wrote:

There are lots of lymphatic massage videos at you-tube

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Aug 13, 2017 07:42AM - edited Aug 13, 2017 07:58AM by marijen

I'm pretty sure I copied this from another forum? Or maybe from Step-up

Lymphedema debris
We placed the most emphasis on lymphedema
in the arm because that's the most common site
of lymphedema. It's the most challenging area for
the body to drain lymph from, since it's quite far
from the trunk and the lymph node beds. We're
learning more and more that lymphedema ofthe
breast is not at all uncommon. Lymphedema of
the area under the armpit, the axilla, is a common
The lymphatics in the armpit are
compromised through surgery and radiation, which
makes it challenging [...] for the lymphatic system
to remove fluid and solid waste from the arm. We
don't have a good explanation for why it takes a
year, two years, three years. Most women will
develop some suggestion
. They'll have an episode
of swelling within three years of their primary
breast cancer treatment, so the vast majority of
women who will ultimately develop lymphedema
are aware ofthat within three years.
Why there's such a delay, we really truly don't
understand. The current explanatory model goes
as follows.
It sends in inflammatory cells, what we call
neutrophils, but they're white blood cells that
penetrate the tissue. They're trying to solve the
problem, but, unfortunately, they cause more
problem because they perpetuate the inflammation
and the scarification, the scarring process, which
can cause further compromise because this fibrosis,
this scarring, can encompass the lymph vessels that
are still in the arm, that are still working, and
thereby worsen the lymphedema.
We get into a vicious cycle of more debris
accumulation, more inflammation, more scarring,
more compromise of the lymphatic system.

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Aug 13, 2017 07:53AM - edited Aug 13, 2017 07:56AM by marijen

Tess, from my experience you need the right therapist. The one you have is not doing enough. I've had 17 PT appts in the last year. She spends 30min each time just doing the massage. And until your problem is resolved two times a week is not too much. I stopped for a whike then had a flare up in June. Two things, hot weather and heavy lifting as in grocery bags can worsen it for me. I know your frustration, I am too. I feel they screwed me up by giving radiation before my surgery incision was completely healed. I had antibiotics, prednisone, and an IBC biopsy. Nothing worked until the right therapist. Try No-Ad suncreen from Walmart for the redness or 50 spf. When I Do the MLD I don't get much relief too. I had the peau d'orange I think it's from the fluid. One therapist said it was swollen pores. Makes sense. Therapist also said you have to stay on top of it as the fluid is damaging tissue and gets harder to correct over time. Compression around the clock as much as you can is important. I use a tank at night, Bali, not expensive

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Aug 13, 2017 02:09PM TampaBayBucsGirl wrote:

Someone mentioned that this massage is supposed to be light & gentle. Yes, there were parts of my therapy that were just about getting the fluid to move to another area in the body. That part was light. It's the deep tissue massage that they do to loosen up the scar tissue that can be painful. The scar tissue can cause a blockage as well. I should have clarified that in the beginning.  I kind of mix the two up because it's all in the same session.

My therapist also gave me some great advice regarding the scar tissue. She said to run a bar of soap (back and forth) along the scar to smooth it out while taking a shower. I've been doing that. It seems to soften it up some.

Marijen - Thanks for all the wonderful tips! The detoxification part sounds very interesting.

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 12/2/2016 Herceptin (trastuzumab) Chemotherapy 12/2/2016 Taxol (paclitaxel) Hormonal Therapy 2/27/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 3/1/2017 Whole-breast: Breast
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Aug 13, 2017 02:13PM Tess111 wrote:

Thank you, Binney! Thank you, marijen! I appreciate your advice and help. (I appreciate, especially, your validation that this is a real issue that needs to be addressed.) There are two LANA certified therapists within a 1 and a half hour drive. (I really do live in the sticks!) Both are part of the same hospital network as my original therapist, so I don't know if this will be a problem.

Tomorrow, I have to be at my cancer center for my Herceptin infusion, so hopefully I can get some direction then. The nurses there were instrumental in getting me to the breast surgeon's office and the antibiotics to try to clear up the issue. My only frame of reference at the time for orange peel skin and red rash was IBC. I had no idea that there was such a thing as breast lymphedema or that the symptoms could be similar to IBC. It wasn't until after I was cleared of IBC that lymphedema was mentioned, and it was an afterthought on the part of my RO.

Hugs to you both for your generosity and caring.

T

Dx 7/5/2016, IDC, Left, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/20/2016 Lumpectomy: Left Chemotherapy 9/10/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/12/2016 Herceptin (trastuzumab) Targeted Therapy 9/12/2016 Perjeta (pertuzumab) Radiation Therapy 12/12/2016 Whole-breast: Breast Hormonal Therapy Femara (letrozole)
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Aug 14, 2017 12:36AM - edited Aug 14, 2017 12:39AM by marijen

sorry - duplicate see below.

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Aug 14, 2017 12:39AM - edited Aug 17, 2017 02:22PM by marijen

My two therapists - they work together - do more than light massage and I think that is the reason they have been more effective. The good news is everytime I leave there I am better than when I walked in and it took 4 months to fall back a little to a flare up which was not as bad as the big red peau d'orange engorgement (I call it an explosion) that happened six weeks after radiation was over. My RO was so clueless I never want to see her again. As well as the BS. He told me to stay in bed for two weeks and elevate my breast with a beanbag so that the lymph would flow out. Wicked. I made sure that comment was documented by sending emails about his instructions. It's terrible in my mind that they work within their little circle of knowledge, whatever literature they receive from within their organization, and don't venture out to get new information - even as they are writing for medical journals. Lymphedema goes with surgery, ALND, and radiation - so WHY don't they know the rest of the story? Finally it was my MOthat came up with the solution to go to another medical center where these two ladies with 18 years experience each could be found. I had a boss that told once told me to educate myself on our product, they are doctors and they should educate themselves. There's no excuse. Well maybe I should move this to the rant page.

Bawling

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Aug 17, 2017 01:55PM Bdagal wrote:

Hi ladies - I haven't logged on in a while...came back to quite a few missed messages here!

Tess - I'm so sorry to hear you've been dealing with all of this!! I've been very fortunate to have no external skin issues, and a lumpectomy scar that is almost invisible. I hope that you are able to find some form of relief.

Outfield - yes, it was a lymphedema massage, super light....my therapist is actually away right now so I'll be going back to her next week. I do try to massage my arm myself, and I have a soft skin brush that I use as well.

Marijen - thank you so much for all of that info! I have almost all of the symptoms on that list (except for 2, 11 and 12). It's just such an annoying feeling - I wish I could just rip my arm off sometimes. I can't even think of how to describe it, to make others get a sense of how it feels. It's almost like how you feel just before you get pins and needles, but without ever getting the pins and needles, and it just doesn't go away. I'm forever stretching my fingers out / shaking my wrist / rolling my shoulder / raising my arm / adjusting my bra. I def need to drink more water, that's one area I know I must improve. As well as exercise. I was very active and then all of this just threw me for a loop...was afraid to do anything that would make it worse. Went back to spin class today...it's a class that incorporates hand weights..I wasn't able to do very much with the weights. Hopefully I'll feel ok later! It felt good to be back in class though! :-)

Enjoy the rest of your day, ladies!

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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Aug 17, 2017 02:29PM marijen wrote:

I know what you mean Bdagal, somedays I get really frustrated! And mine isn't that bad, you can't telll by looking at me. But the numbness, the itching you can't scratch, the pins and needles, and pain. Plenty of pain and shoulder stiffness. It seems it's going to need attention until I die. It feels like all my time is taken up with doctor visits, shopping for healthy eating, walking, exercises, stretching, and now they've added swimming. Then there's the jovipak, compression bra, comprssion tanks, and today I have my first sleeve arriving. But always it could be worse. I've been dreaming about a week at a beach spa. the biggest deal is the weekly LE massage. It makes the most difference.. I'm glad it's covered by Medicare

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Aug 17, 2017 09:16PM - edited Aug 17, 2017 09:17PM by hugz4u

girls watch your weights if you haven't exercised in a while. Start out with one pound weights unless you already lift heavier and are in shape. Build up slow to avoid le flare. Sounds silly but you will avoid problems down the road.

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Aug 22, 2017 08:24PM Tess111 wrote:

Hi! I just wanted to let you know that I just had a consultation with the lymphedema therapist today. Boy did that hour go fast! She measured my arms to make sure that there were no issues in my left arm. (All measurements were in the normal range, but as she said, now we have a baseline.) She took notes on my back, under my arm, and of course, my breast. I have to wait until authorization is given by my insurance company, but she has made me an appointment for next week. (I had called the insurance company, so I am pretty sure the authorization will be given.)

She confirmed that I did indeed have breast lymphedema, and she definitely said that we could make things better. I am stage 2. Sad She is working up a plan for treatment and we will begin next week. She made me a chip bag (I had brought the chip pads with me, and she thought they were fine, but did not cover enough area on my breast.) Apparently, sometimes you have to try a few different things, before you find the right combination for the individual.

The relief I feel after this consultation is immeasurable. Thank you, so much for encouraging me not to give up. It is a long drive, but to get some relief it will be worth it.


Dx 7/5/2016, IDC, Left, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ (IHC) Surgery 7/20/2016 Lumpectomy: Left Chemotherapy 9/10/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 9/12/2016 Herceptin (trastuzumab) Targeted Therapy 9/12/2016 Perjeta (pertuzumab) Radiation Therapy 12/12/2016 Whole-breast: Breast Hormonal Therapy Femara (letrozole)
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Aug 23, 2017 03:33PM runor wrote:

How could I not have found this thread before?

I am pretty sure I am having lymphedema and have been since very early on in my radiation treatment. Only it's not just my arm.

The last few days I feel .. thick? pressure? fuzzy?... in armpit, past armpit to shoulder blade and the ribs in the area of the shoulder blade. I also have swelling in my neck, under chin, up the left side of my face. Like if I had a bad tooth infection and throat glands / nodes were inflamed. Only there is no bad tooth.

I can see arm swelling, very slight. I bought a compression sleeve, the kind I could get without a prescription. The saleslady said she didn't know if this had enough compression to do any good. Good lord, if this is not useful I cannot imagine the misery of wearing anything tighter because at the end of the day I take this sleeve off a hurl it. It gets really miserable feeling!

I have this same reaction to my bra, which is entirely new. The swelling makes my bra an instrument of torture. I have vicious indent prints in my body end of day. Like my flesh is oozing out around this bra. When I take my bra off, God! I can't wait to get it off. This alone tells me there are changes as this has never been an issue for me.

It pisses me off that when I brought up, repeatedly, to the RO that I was having a weird, tight skin feel, like the skin on my arm was too small, they basically shrugged me off. Their nuke machine was baking my poor little lymphs and yet it's like no one gave a crap about the life long effects I would have to deal with. A lymphedema counselling session should be part of the whole breast cancer horror story.

I keep hoping, insanely, that this will just 'go away'. It's not looking that way at all. I have learned a lot here.

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 7/4/2017 Whole-breast: Breast
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Aug 23, 2017 04:11PM marijen wrote:

If your neck is swollen you should ask for a thyroid ultra sound or thyroid panel. Six months after radiation I got a pet scan and a CT to make sure no hot spots. Then they found thyroid nodules

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Aug 25, 2017 01:51PM Jackiebro wrote:

Question: I wear my sleeve when I exercise and when my arm feels fuller. I like to take breaks from wearing the sleeve. Do u wear your sleeves all the time?

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Aug 26, 2017 01:49AM - edited Aug 26, 2017 01:55AM by hugz4u

Were all different. I can get away with wearing more or less ten or so hours a day. That may change down the road to more. your therapist should advise you.

Yes definately wear for exercise. Most people are recommended to wear all day but give themselves a break in the evening especially if their not doing manual labour and their le is not to bad.

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Aug 26, 2017 11:18AM Jackiebro wrote:

sounds like I am doing the right thing... thank goodness for this topic thread!! Thank u💕


U just want ppl to empathize & understand what they cannot see...

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Oct 10, 2017 05:01PM runor wrote:

Well, despite my 'hoping' this was just temporary, it's not looking that way. And what started back in July as just issues with my arm has now become issues in other places too.

I feel...don't have words. Just going to drink coffee and stare out the window and think this is shitty.

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 7/4/2017 Whole-breast: Breast
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Oct 10, 2017 05:14PM Jackiebro wrote:

don’t give up bad gal... it is shitty. It sucks. Being in constant uncomfortableness is exhausting. I want to cry some days. My arm aches & throbs & now it has involved my nerves.

I have been to two OT’s since Feb... going every week, I exercise, and now I am receiving ART for the nerve Entrapment. I thought my lymphadema was a nuisance and now the nerve trumps it. :(

I still have upper armpit and upper arm fullness. I guess all I can say is movement really helps me. A 3 mi jog/ walk with arm swinging gives me some relief.


The compression sleeve helps when it aches...


We need to keep on going forward...supporting and comforting. No one outside of BC understands this like we do.

Jackie bro

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Oct 10, 2017 07:46PM runor wrote:

Thank you Jackiebro. I felt the virtual loving punch to the shoulder - the good shoulder! - and I appreciate it. Yup. All we can do is all we can do. I massage and am learning what makes it worse and better, this will take some time. It's still pretty new. Ugh.

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 7/4/2017 Whole-breast: Breast
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Oct 10, 2017 08:28PM Jackiebro wrote:

i meant to say “ runor “ ... it is a big UGH! .... no doubt about it. When we get on the other side of the tunnel... we think we will get stronger & get back to our normal. And then this LE rears it’s ugly head. And I don’t know about you... but I have at least three ppl in my circle who had surgery and no arm issues... I was wondering if I was losing my mind????thank god for these boards!!! comraderie and strength and a place to just VEN

Dx 1/2017, DCIS/Paget's, Right, 1cm, Stage 0, Grade 2, ER+/PR-, HER2-
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Oct 10, 2017 09:28PM runor wrote:

Jackiebro, I was watching some youtube videos of people who suffer from lymphedema and have never had breast surgery, or any other surgery for that matter. It can be a problem all on its own. One young girl with a huge swollen leg said she was born with no lymph nodes. I do not know if this is possible or not. But I do know that all the surgeon took was one, lousy node out of my armpit, ONE and I get this. Which makes me wonder if one wasn't the sum total of my lymph nodes and now, tada!, I'm all swelled up? The surgeon did say she looked and dug around until digging around was no longer a good idea.

It is obnoxious and more of a problem than it appears from the outside. As in, "Oh, so you're a little puffy, no big deal". Yeah, right. I feel bad for everyone who battles this affliction.

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 7/4/2017 Whole-breast: Breast

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