Could rash and swelling be LE?

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1toughmomma
1toughmomma Member Posts: 87
edited June 2014 in Lymphedema

Hi! I have been posting like crazy about this rash that developed on my mastectomy side about 4 weeks ago. First there was a red rash then the entire breast turned a salmon pink. I would say there is moderate orange peel texture, too. My PS had no idea what it was-we initially tough a delayed allergy to something from surgery. My oncologist (who didn't see it) referred me to a dermatologist.I ruled all out lotions, creams, detergents, etc.  I was given triamcinolone cream by the dermatologist who had no idea what it would be. I also had a rash down the arm of the affected side that itched lilke on one's business. The cream It really helped...the overall salmon color went away and left just a darker skin tone and the red rash healed, too. About 2 days after I stopped the cream it looked like the rash was coming back. It is back quite a bit-no overall color, though. I noticed the orange peel look kicked up. A couple other "symptoms" that I was blowing off: Where the tail of the breast tissue would be is  a little puffier than the non-affected side. I also feel some pressure on my collar bone--kind of like when your seat belt is too tight.

It would ,make no sense for this to be a cancer recurrence because I had DCIS, but I tell you that little voice in the back of mind has been worried. Red rash that came back after treatment around the mastectomy scar + "peau d'orange" ...scarey stuff.

I kept researching what ELSE it could be when I stumbled upon an article that I do not have access to read the whole thing about post-surgical truncal lymphedema masquerading as Inflammatory breast Cancer. I thought...THAT"S it!!!!! I bet that's it!!!! I am just not sure about the arm rash part...I have that again as well, but not nearly as bad.I see my oncologist on  Thursday and it just so happens that I am in the LiveStrong program with a certified lymphedema specialist :) I "hear" you guys are super knowledgable...what do you think?

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2014

    kimberly, I don't have any experience with what you describe, but please hang in there because we really do have a lot of knowledgeable people who will see your post soon.  What a puzzle you've go there.  

    I do know that there are many symptoms that come with truncal and breast LE, and nothing would surprise me.

    Here's a link to Joe Zuther's Lymphedema Blog, where he discusses truncal LE.  He does mention color changes and peau d'orange ('orange peel phenomenon'), so you may be onto something here!

    http://www.lymphedemablog.com/2011/10/05/lymphedem...

    Also, have you looked at the stepup-speakout site?  Here's a link to their page about truncal LE:

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

    Please do ask that LE specialist about your symptoms.  To be sure that he or she has the right credentials, here's another link on stepup-speakout that explains what to look for:

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

    I hope you get some good answers soon!

    Hugs--

    Carol

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  • Aimee68
    Aimee68 Member Posts: 7
    edited April 2014

    I had a 3 cm axillary lymph node removed last fall because it showed up on a mammogram. The biopsy said it was benign reactive. About 4-6 weeks later I developed slight swelling and orange peel like/enlarged pores on under side of breast and around areola.  It is very itchy at times, and I have pain in armpit and breast. These symptoms have occurred intermittently over the past few months. I have had three breast surgeons tell me that it is breast lymphedema. I am not so sure.

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2014

    aimee, If the node that was removed happened to be one that drains the breast, truncal or breast LE is possible. Have you seen a qualified LE therapist for an evaluation?  If not, check out the link in the previous post, to the stepup page on finding one.  If indeed it's LE, you can learn manual lymph drainage to help alleviate your symptoms. Have you tried a compression shirt or shapewear to see if compression makes a difference?  If lymph is pooling and causing your symptoms, that might help. 

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  • Aimee68
    Aimee68 Member Posts: 7
    edited April 2014

    It was really close to the breast, kind of in the breast tissue itself.

    I have seen a therapist for manual drainage, but haven't been keeping up with the exercises very well.I guess I still have a hard time believing that it is not something more serious.

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  • 1toughmomma
    1toughmomma Member Posts: 87
    edited April 2014

    I think I understand where you are coming from Aimee. EVERYTHING you read says these symptoms need be evaluated and not brushed off. You read the horror stories of misdiagnosis and it is scary. Something that is low-tech like this manual therapy can seem not legitimate. I am a RN and am always skeptical about things be they drugs, surgery, or manual manipulative medicine. I have read up on this diagnosis and therapy and it does seem like it could potentially be what I have. I was a little taken aback by watching one of the linked videos watching this women teach these skills and she was mentioning facial draining to improve the look of aging--that was a turn off to me and made the video feel less credible. I do happen to know a PT who is certified Lymphedema Therapist so I will follow up with one for my docs this week and see if I can see her and get her professional opinion. Honestly, this may not be causing my rash, but I bet I do have some lympedema going on...

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2014

    KimberlyAnn, lymphedema is an inflammatory condition, and that inflammation can present (especially in the breast area) as redness that is unaffected by antibiotics (since it's not, after all, cellulitis). This condition baffles surgeons and oncs on a regular basis, but when the cause is lymphedema, then it responds to both a topical anti-inflammatory and to Manual Lymph Drainage (MLD). The topical meds would be a temporary "fix" that would not remove the causative agent, which is stagnant lymph fluid. The MLD would remove the cause (although temporarily--you'd have to keep up with the self-mld and probably some compression as well). The peau d'orange is also possible with lymphedema. Again, that should respond to MLD, especially at such an early stage. Truncal lymphedema can affect the entire affected upper quadrant, so certainly it could be the cause of the areas of fullness and pressure you mention. 

    On the other hand, besides the IBC you're concerned about, cellulitis is something to consider. It can "percolate," sometimes for a couple of weeks, before it suddenly becomes a raging and obvious infection. So if you experience rapid new swelling, redness or pain, get to your doctor or the ER at once.

    How frustrating! Please keep us posted--we'll be thinking of you for sure!
    Gentle hugs,
    Binney

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  • 1toughmomma
    1toughmomma Member Posts: 87
    edited April 2014

    Thanks Binney! This would seem to be the most rational explanation for what is going on...I would prefer to not be allergic to my breast implant and certainly do not want IBC :) 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2014

    By the way, Kimberly, there are dozens of videos online demonstrating MLD, sort of--and almost none of them are anything you'd want to learn from. Way too many are made by maverick therapists who prove yet again that a little knowledge is a dangerous thing. It's definitely a hands-on learning experience, and the technique, when properly done, is valid for encouraging the flow of lymph by stimulating the lymphangions to pump and move the fluid along. It is effective because the lymph vessels lie so close to the skin surface--but it's also critical to use a very gentle pressure for the same reason. Lymph movement is slow and rhythmic, so it's also crucial to match the speed of the system in the movements--hard to do, actually, because we're always in such a hurry. The lymph system is a beautiful thing, however invisible it remains. As you learn more about it I'm betting you'll find it fascinating (and you'll no doubt wonder how come the medical world has been oblivious to it for so long!) 

    Looking forward with you to getting solid answers and a real "fix"!
    Binney

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  • Kicks
    Kicks Member Posts: 4,131
    edited April 2014

    Does  ot sound like IBC to me - something you need to find out about but not IBC.  If a rash in the breast area meant IBC - it would be the most common cancer of all forms - not the least likely (1% -5%) of all DXd BCs.  It is not related to other types of BC though it is possible for more than one type to be present, the path. from your MX would have shown if others were present at that time.  There are so many possibilities for a rash.  Be care with letting "Dr Quack Google" DXing you.  There is a lot of great info that can be found BUT there is a lot that is 'bogus' (to put it mildly).  IBC is aggrssive and fast - it does not 'come and go'.

    You've gotten a lot of good info on LE , but thought I'd talk about your fear of IBC from one who is IBC (with LE) - Aug will be 5 yrs since DX and still (as far as I know today) NED.

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  • 1toughmomma
    1toughmomma Member Posts: 87
    edited April 2014

    Kicks-Congrats on the NED, that is awesome:)

    Let me clarify that I think saying that I have a "fear" of IBC is a little strong. In my original post I only said the voice in the back of my mind was worried about malignancy and I meant that. It's hard to come across correctly in writing only. Based on my history malignancy would be a medical stumper. You just wouldn't see this. People with my diagnosis are handed the same breast cancer books people with all severities of breast cancer and everything says a rash at a mastectomy site needs to be evaluated and gives rationale from Cellulitis to skin mets. While 99.9% of me totally "gets" that this is not a malignant process, that 0.1% that looks down and sees a recurrent red, rash and swelling with orange peel appearance all around my scar wishes that this rash would go away and not resemble what the books tell you to get evaluated. That's all. I think any rational person would have that thought tucked away in the back of her mind.   If I have a fear it is that I am allergic to my implant. That would be devastating to me to undo what has been done. I have weird allergies so the thought has crossed my mind and my dermatologist's. So if it's not cellulitis, and not an allergic reaction (and obviously not malignancy) then what the heck is it? I am going to ask at my appt on Thursday about lymphedema. Its as legitimate a thought as any. No one can tell me what is causing it and I would just like it resolved.

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  • 1toughmomma
    1toughmomma Member Posts: 87
    edited April 2014

    The oncologist looked at it for a long time. He compared it to the other side and decided I should try an antibiotic because of the erythema...maybe it's a mild cellulitis. Call back  if it's not better. No cream. No lymphedema referral. Here's hopin'

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  • Kicks
    Kicks Member Posts: 4,131
    edited April 2014

    Did he give a reason why  no referral to a CLET?  

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  • 1toughmomma
    1toughmomma Member Posts: 87
    edited April 2014

    We actually didn't talk much about it. I had a very hard time getting a word in. He would ask me a question and cut me off. I don't care for him very much. I see my PS who is very easy to talk to in a couple weeks.I'll see what everything looks like then. I am hoping this does the trick. 

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  • 1toughmomma
    1toughmomma Member Posts: 87
    edited April 2014

    Rash 99% gone. No discussion of LE as things "look better." Thanks for the advice support :) Now onto the next problem...ugh...still smilin' tho!

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