Truncal or breast Lymphedema

Janis, Trental and vitamin E are used to treat radiation fibrosis. 

Unfortunately, breast and truncal LE are very common, and prolonged redness of the breast after cellulitis is very common as well--it's hard to sort out when it's an infection and when it's inflammation.

Here is information on truncal LE--there's a link to a medical article on the page--it has good photos, and you may want to share it with your physicians/nurses:

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

Here's how to find a qualified LE therapist:

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

You'll find a lot of women on these boards with breast/truncal LE--sometimes it only affects the trunk, and sometimes the upper arm will get involved.

Kira 

Janis, if the skin issue is inflammation rather than continuing cellulitis, it will not resolve with antibiotics or Trental/E. So you might want to keep in the back of your mind that LE therapy will relieve the inflammation by moving the stagnant lymph fluid out of the breast, and that in turn will relieve the skin redness. It's a tough call and many doctors are not familiar with this kind of inflammatory response, but it's actually fairly common. Just something to keep in mind. It's important to clear an infection before starting therapy, but it can be hard to discriminate between infection and lingering inflammation, especially if you're not familiar with it happening.

Keep us posted, and be well!
Binney

Hello Janis,

Just noticed your post.  I have breast lymphadema as well.  Finsihed radiation at the end of May and started getting redness, heat and swelling in October.  Doc put me on Trental and Vitamin E which I took for awhile (until it started bothering my dysfunctional gall bladder).  I also wnet to an LE therapist and started exercise and self-massage.  It is pretty much cleared up except for some flare ups (I had one around Christmas).  What I think really helped me was a Belisse compressure bra.  When I feel it coming back, I wear it for a while.  I have a tendency to swell in my armpit above my SNB and I think this is what causes my breast to then swell.  Started having problems iwht my shoulder and neck lately and had my PT work on it with a massage therapist.  Interesting that my shoulder swelled up! She said it is probably my lymph node deficiency.  Now I am wondering if it is affecting the muscles in my shoulder.  I know how frustrating it is to have disc problems AND lymphadema.  I have herniated discs in my neck and low back that have been ongoing through treatment and am still going to PT twice a week one year after surgery.  Hopefully I will get better eventually, but I do see the light, a faint one, but a light in the distance

Thanks for the helpful advice Binney.

Kadia, it sure would be helpful to get an evaluation from an experienced and well-trained lymphedema therapist. The symptoms you mention are certainly possible with lymphedema. It's difficult to judge actual swelling in our breasts and chests after surgery -- the "geography" is so new. But an experienced lymphedema therapist will be able to tell you more with just an examination. Here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

If it's lymphedema you definitely want help with it promptly, as treating it early means better control and easier management on-going. It also lowers infection risk, which is super important when you're in the middle of recon.

Please let us know what you discover. Gentle hugs,
Binney

Janis, My PS was in complete denial on my developing LE, which appeared after bmx/recon. My care was handled principally by the PS, and well, he simply did not want to believe that what I was experiencing was anything but extra-lingering post-surgical swelling.  Different issues than you have, and different type of doc, but my solution might be worth considering.

I wrote him a one-page letter and faxed it to his office, explaining that while I respected his professional judgment, I was left with a constant daily worry that IF it was LE, I might be missing out on the opportunity to get early treatment that could ultimately limit the severity of the condition. I explained that in my way of thinking, there could be no downside risk to getting an LE evaluation from a qualified therapist, and the therapist's evaluation could only help in understanding my issues and care plan going forward, whether she found I had LE or agreed with my PS that I did not. I told him in this letter that I wanted to ask his help in treating my 'whole' self, including my spirit, which was becoming a bit battered over the discomfort of the continued swelling, knowing that there is a way --MLD-- to help it, but not having that tool to help take care of myself. 

This letter was totally polite, deferring and respectful, and I used a written letter to make sure that a) my message went to him in my words, not through a passed-along chat with his nurse and b) he could think about my whole message before having to respond to any of it, which was the problem when I was trying to have this conversation with him in his exam room--he kept stopping me with 'yes, but.'   I faxed the letter just for speed of delivery.

Anyway, it worked!  After he read my lettter, and I assume had some time to think about it, he actually called me and apologized for dismissing my concerns.  He wrote the prescription for LE evaluation and treatment and then I was on my way.  It took me several tries to find qualified LE help, but that's another chapter in this sad novel about how challenging it is to get LE help, and in which we are all protagonists!

MDs in LE-denial is a worthy goal for LE advocacy efforts to work on.  When your issues settle down, I have a website whose goal is to collect stories focused on just these kinds of issues. WE know these problems happen every day; just spend three hours in the LE forum here and there are plenty of them. The website's goal is to put stories in one place, organized by topic, to give anyone who is doing LE advocacy work a good resource to cite our real-life examples of what's not working.  IF you have time and inclination, I hope you'll consider writing a paragraph or two and posting it at www.lymphedemaspeaks.com.  There's a story topic called Take Me Seriously for just the kinds of mortifying frustration you are now going through.

It's just not OK to force you to stay in limbo like this. Binney's suggestion to get another of your care team to give you the referral is spot on as an alternate to pushing the issue with your RO .  When I ultimately transferred my LE 'care' to my primary care doc from my PS, I found her to be totally clueless about LE, which is no surprise. The good news is that she acknowledged that she had no LE expertise and essentially that put her in the position of 'whatever works for you, Carol, let's do it.'  And she has been perfect as the avenue through which my LE therapist procures ongoing prescriptions needed to ensure insurance coverage, etc.  She has been totally accomodating on giving me a prescription for keflex, which I now carry with me through all my work travels. It's a heckuva world when the best strategy is to go for the least informed physician, because the ones who THINK they know LE are so very wrong!

Best, best wishes for getting the action you need, pronto.

Carol

Well, we are not alone.  This study is very interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3119382/pdf/bmj.d3442.pdf

Participants 237 women with symptoms and signs indicative of lymphoedema from an initial 1930 eligible women. Main outcome measure Unmet needs in the previous month across psychological, health system and information, physical and daily living, patient care and support, sexuality needs, body image, and financial domains. Results The 10 items most commonly identified as a "moderate to high current need" included having their doctor and allied health workers being fully informed about lymphoedema, acknowledge the seriousness of the condition, and be willing to treat it. Women also wanted access to up to date treatments, both mainstream and alternative, and financial assistance for their garments. The three factors that explained most of the variance were: information and support (11 items), which accounted for 49% of the variance; body image and self esteem (seven items; 7% variance); and health system (seven items; 5% variance). Examination of these three factors showed that while the levels of need were generally low, they were common. Conclusion To address the needs of women with lymphoedema and perhaps to prevent progression of lymphoedema, it is important that practitioners do not dismiss mild symptoms and that women are referred to an appropriate specialist.

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I'm happy someone did this study but...we could have told them this!

Carol

....because the medical community would have to change its behavior, whereas the weightlifting study simply gave us an opportunity to change OUR behavior.  We are motivated to help ourselves...are 'they' so very motivated to help us, especially when it would require a commitment to re-education?  Maybe the press somehow senses that asking providers to change their attitude toward LE is a hopeless cause  (I'm being very cynical here, I know) (and there are indeed some very wonderful physicians who care very  much; too bad they are in the minority).

Janis,

I am really sorry that your RO does not understand the importance of having your swelling evaluated as soon as possible by a well-qualified lymphedema therapist.  If you do have LE then the sooner you get proper treatment and learn how to manage it and keep it under control, the easier it will be to keep on top of the situation.  Please let us know how you are doing.

Deb

Janis, awhile back, Binney posted a youTube video on how to clear the neck--it can't hurt, and could help the swelling.

http://www.youtube.com/watch?v=Q9FP6AHj9Eo&feature=related

 And, although the self-care videos at the Northwest LE center are directed at arms/legs, she does address the neck and trunk

http://www.nwlymphedemacenter.org/

Janis, the costs associated with LE are prohibitive. You do what you can do.

Kira

Janis, brava for you! Really, a huge pat on the back for taking this on--you've been in a really difficult position and it's so hard to take action in the face of all you've been facing.

Huge hugs,
Binney