Cellulitis epidemic got me too

Ok my story kinda long but I  am amazed after reading this thread to figure out what I think I have.

Had Phase II of my reconstruction on 7/26 of this year.  Felt fantastic that night and there after.  Did not rest at all after my 3 hour surgery.  Worked in the Texas heat and moved 2 kids into college. Threw a huge dinner party for my 80 year old mom.  Took my dad to be diagnosed with Alzheimers.  Woke up and found a small red spot on left breast three weeks later.  Ignored it and kept going.  Felt tired but who wouldn't.  Day three- more red spots on both breasts.  Day five I felt like ripping both breasts off they hurt so bad.  And DIEP breasts are not suppose to feel much of anything.  Called my PS and he told me to come in right away.  Both breasts flaming red.  No fever but I am feeling awful.  PS prescribes major antiboitics and rest.  I see him every few days for next week.  Redness goes down after a couple of days.  After being off antiboitics for two days ( initial dose was for two weeks) two large red spots appear on breast.  We watch and it goes away.  I feel much better.  He called what I had cellulitis.  I had 16 nodes removed in February along with both breasts.  Do I have breast lymphedema?  Picture posted is exactly what I looked like minus the arm and back area. I go back to him tomorrow for a follow up and would love to find out.  He is beyond perplexed at my condition. 

http://www.nejm.org/doi/full/10.1056/NEJMicm065836

Mine is a very very light pink patch-- perhaps with a welt or stretch mark in there. One has to look to notice it , but it is there.

Doesnt look a THING like this.

purple32. Hope is our light ... in the night.
Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-Surgery 05/01/2012 Lumpectomy (Left)

Posting earlier in the thread

I do not think I absolutely had breast lymphedema but having battled with cellulitis and the PS having no clue how I got it makes me think that breast lymphedema is something we need to consider.  I have been told repeatedly by all my doctors that having 16 nodes removed is no big deal.  When I have complained about pains and now dealing with a case of celluitis that almost put me in the hospital, I think it is something I should at least consider a possibility.

Having 16 nodes removed is a very big deal when considering LE risk.  Sheesh. What will they tell us next?

Also, cellulitis is a lymphedema double-whammy-- 1) LE makes us more susceptible to it, and 2)  Cellulitis can be a trigger to induce LE in a body part that has conditions ripe for LE, i.e. lymphatic blockage or damage.

So, if  you have LE, be vigilant about watching for and responding to cuts, sunburn or any other cellulitis risk, as well as any symptom of actual cellulitis.

If you've had cellulitis without diagnosed LE, be very watchful, and truly consider getting an LE evaluation by a qualified LE therapist. We can have up to 30% added fluid without any visible swelling--you might have LE without realizing it.  Treating it before you get visible swelling is the best time to start.

"I have been told repeatedly by all my doctors that having 16 nodes removed is no big deal. "


What ????!

This is getting RIDICULOUS!  I had 2 nodes out and NO rads.  WTH is going on ?  I really think these DRS  need to be held accountable.  IF they do know- and surely they must- where the heck are  the lawsuits from ppl  who have done things that have INCR+ their risk because their stupid DR has not informed them with a lousy handout sheet after surgery ?

I have  a friend who had surgery just before m.  I told her about my breast LE and she said "  Luckily, I have escaped that ."  WHAT????!  I was telling her so she could be careful.  ( She exercises for an hr a day , might overheat etc ...)  She said she did not get it  (LE) figuring she CANNOT get it now.  This risk goes on .  You are not ' safe" after  a  few mos .  No, nobody wants to scare soemone , but should we not be warned? This lady would think nothing of raking her yard for 2 hrs.  The DRS do act as though you should have no repetetive arm movements for the first week or two.

Try again!

She said she only had 2 nodes out. So did I . As far as I am concerned, she is at (even) ever greater risk due to radiation fibrosis.

What is going on with these DRS?  I really dont understand.

Purple, it's amazing, isn't it? But there really is an explanation. A few years ago Dr. Stanley Rockson at Stanford did a survey of U.S. medical schools and found that in all their medical education, doctors received an average of only 15 minutes of training in the lymph system. In other words, the time you've spent reading posts here is considerably more time than your doctor has spent reading about LE.

And there's even a reason for THAT. The lymph system has been largely ignored throughout the ages because, while it's all over our bodies, it's nearly invisible to the naked eye. Or even to most modern imaging techniques. And once modern science did "discover" it, they still had a very hard time figuring out what part it plays in our health. All of which is still a VERY long way from trying to figure out how to fix it when it's broken. In case you're interested in a bit more background, here's a page of articles about the history of lymphedema:
http://www.stepup-speakout.org/History_of_Lymphedema.htm

Which brings us up to the present. Even though there's a growing awareness in research and medicine about the significance of the lymph system, nobody is sure which specialty it should fit into. Surgery? Oncology? Radiology? Cardiology? Wound care? Everybody thinks it must be somebody else's problem, so no specialty claims it. There are a VERY few doctors who call themselves "lymphologists" because of their special interest in and experience with lymphedema and other problems of the lymph system. But there's no certification to make them official lymphologists, no training designated for them, not even any courses they can take (besides LE therapist training). In fact, the licensing tests that all doctors have to take at intervals do not have any questions on them about the lymph system, which gives our med schools no incentive to teach about it.

So what we end up with is doctors who very often know less than we do about lymphedema, and sometimes don't even know where to refer a patient for help with it. It is not because they do not care, or because they want to keep us all ignorant. It's because they don't know, and whatever specialty they practice does not include it.

I've often thought a couple of good law suits would put it on their radar, but that is very unlikely to happen. At present there is no way at all to prove that something a doctor did or didn't do actually caused this condition, much less that there was something he should or should not have done. There is no standard protocol that protects lymph nodes in surgery, rads, or post-treatment care, so way a patient can make a case that her doctor goofed up.

BUT! There is an organization that's working on exactly that. It's called the American Lymphedema Framework Project (ALFP), and it's made up of some very good researchers and doctors. They are inviting doctors in ALL specialties (because the lymph system affects them all) to participate in this project to establish guidelines for preventing, diagnosing, and treating LE, and hopefully to create a medical specialty in lymphology. They're still a few years away from finishing this enormous national project (there's one going on in Canada too), but there's hope. Here's their website:
http://www.alfp.org/

I sure hope some of that helps make sense of our dilemma. It doesn't fix it, that's for sure. But it does give you some ideas for ways we patients can begin to make our voices heard and change the quality of care we receive. Together we can make a difference!

Onward!
Binney

Exactly, Purple. I didn't say it was a good reason, but we need to know what it is we're up against. The med schools. The licensing tests. The way specialties have developed to eliminate everything that doesn't fit into their own little cubby-hole. The way law suits have become a major motivating factor for change, so that no law suit=no change. An entire body system that has no history of belonging in the medical sciences. A research culture that doesn't award funding to brilliant people pursuing "obscure" projects. A medical appointment scheduling system that makes dealing with any "add-on" side effects unsupportable. And an insurance system with its eyes squeezed shut to our fat limbs. Plus a public that's weary of anything pinkly related to breast cancer, especially something ugly and chronic.

Eight years into this I still get angry, or I wouldn't be here posting. Lots of ways to plug our anger into all the dysfunction surrounding lymphedema and start shoving back. No quick solutions--but some days it actually does feel like well-deserved revenge.
Binney

Knowing more about LE than our doctors and nurses is certainly frustrating, in no small part because people respond in different ways when they realize they don't have knowledge expected of them.  Not just in medicine, either.  Some people admit they need to learn and jump at the chance to do so. Some people declare the topic unimportant or irrelevant and decline to consider it. Some people make sure they learn just enough to talk 'about' it without really understanding or having the ability to apply what they read, which may arguably be more dangerous than the first two, if the profession is medicine. Confrontations along the lines of 'you should have known' risk evoking the second or third response, when we really want the first one. So we need to find ways to invite learning without appearing to confront and challenge. No small task!

There are LE resources 'out there' designed for the medical community.

On Step-Up, Speak-Out there's a great page that has extensive information about LE, for healtchcare providers, including physicians: http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm . On another Step-Up page, you can download a pdf to print and bring to your doctors and nurses: http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

And, there's a free self-guided learning course about LE for nurses, which would also be appropriate for other healthcare providers. You can read about it and ask for a pdf of it here: http://lymphedemaspeaks.com/lymphedema-education-action-project-leap/

Are we up for the challenge of asking our doctors and nurses to learn about LE and how they can help us, and of course help those who follow us in surgery or other treatments that bring LE risk?  If you give any of the resources I just listed to anyone on your medical /surgical team, it would be very interested to exchange experiences on how the information is received. 

Of course, it's not our job to educate about LE.  But apparently it's not anyone's job to educate about LE, and we have the most at stake when our doctors don't know enough about our condition.  So tag...we're it.

RE:  "So tag...we're it."

No problem, carol57.  I'll never shut my mouth to any of the " BC team" that I see....for as long as I have LE!  :>)

I can tell you that I have  tried to inform DRS of certain things in the past , and it has never been well received, so if it is,  I will be sure to let you know!

Put your thick skin on!

Thanks for your comments, Musical!

Well received.

Hi Purple,

The two main antibiotics I keep on hand are Cephalexin (Keflex) and Clindamycin.  

I'm not sure what is standard in terms of who writes the script.  Before I was faced with recurrent cellulitis earlier this year, I had no idea that I should even have a script on hand.  Now my Infectious Disease Specialist keeps me pretty well stocked with antibiotics.  But the last time I saw my regular doctor and told her we were going away for a few days, she offered me a script and said 'better safe than sorry'.  She used to be VERY stingy with antibiotics, but now she knows how quickly the cellulitis can take me down.  So I think any doctor you feel comfortable with asking can write it for you.  Of course it's probably easier to ask someone who is familiar with LE and cellulitis because they will likely have a much better understanding of why it's important to have the antibiotic in your medicine cabinet/travel bag, etc. and won't give you a hard time.  

And I think I remember the ladies here giving the great advice that you should make sure you actually fill the prescription & take it with you on vacation, etc. just in case. 

I hope your visit with the LE therapist goes well...  

Thanks Mom2twins

My BFF were twins btw! Grew up with them ... one has since passed  :>(But that is a different story -

may I ask, besides the EARLY ONSET symptoms, warmth red or rash, tired etc .. what is the cellulitis like ? Is it flu like is it ???????????