lymphedema after snb

I would love to participate and read everyone's post, but in the meantime, can we PM you our stories, Carol? Once you have gathered your posts, you could post it as a Resource. Actually, any info that's gathered can be considered a resource or bibliography, no? Given that our stories often highlight the lack of info and treatment, the material could be considered in reverse, as in, "Questions and Info about LE that every woman with BC should know". Call it something here and title it whatever you want for your personal use in advocacy. Goodness knows we all have shared our personal stories with LE, and there's no crime against that, is there?



I remember when one of our LE gals was going to have recon at NOLA, she gathered info from us to give the doctors there. I actually used it when I consulted with PS's about my deconstruction surgery.



It's not a survey any more than those lists we have made about preparing for surgery, things you will need when you have a mastectomy, implants, or DIEP and other tissue/flap surgeries.




Actually, the more I think about this, the madder I get. There are countless threads where people request very specific info, such as the brand of bras they wear with implants, doctors that perform specific surgeries and procedures, or who is happy with their implants. Those sure sound like "surveys" to me. I consider this a bias against the LE community, just another example of the limited support we receive.

Tina, think about the "survey" about mammogram screening--they asked for your actual name, diagnosis--all sorts of personal stuff.

And the oncotype dx survey.

Lots and lots of this on other threads.

Also grumpy about this

Kira

I have been traveling and working these past two days, so a bit out of touch. I teach seminars and even though my heart has been in this discussion thread, well..probably not a good idea to be working the Internet instead of teaching my classes!

Anyway, regarding the tell-your-story thread, I do really understand the moderators' concern. If there are surveys or research, and especially if the stated intent is to gather ammunition for some kind of advocacy or lobbying, it's really not fair to open the door to anyone stating or even implying that BC.org has sponsored the effort. To keep BC.org a place of free expression, I think they do need to make sure no unauthorized ulterior motives surface--no matter how well intentioned.

Starting a website is a good idea.  Happens that my son is a web designer, and he has a very big heart, so I will be discussing this with him this weekend.  When it's ready, I hope we can post links to the site from here, and I'll take time very soon to reach out to the moderators to verify that.  The intent really will be simply to collect LE stories all in one place, similar to the stories we find here scattered through all the threads. 

So, more soon!  I have learned so much from everyone's stories--the true meaning of 'lessons learned'--ranging from the earliest realization that what I was feeling has a name, to the stress buster of discovering that I have plenty of company in being angry about information being withheld or downplayed.  Gotta put the stories all in one place!

Carol

Hi Dawne-Hope,

Step Up-Speak Out is such a wonderful place, full of polished but so very approachable information. I can't speak for those folks, but I wonder if it would be better to house the stories elsewhere, because the stories might risk becoming a bit of a free for all, whereas SU-SO is so very professional in both content and organization.  But of course, I would ask our SU-SO friends to place a prominent notice that LE stories are available on the story site, and can be contributed there, as well.

 And...to that end (this was really too easy!) I just purchased two websites:  lymphedemaspeaks.com and lymphedemaspeaks.org.  I will set it up as .org and make sure there's a redirect if someone goes to .com. It will take me a week or so to get a simple site up, and then I'll post a link to it--inviting stories.

So, stay tuned!

Carol 57

Trinity,

Yes, cellulitis is more likely to happen in tissue with LE; sorry it sounds like I wasn't clear enough. But cellulitis can happen independently in non-LE skin if infectious conditions are just right (or wrong). 

Why are we asked to tell our stories to Stoneyfield Yogurt, and this is an issue?

Hmmm. Stoneyfield has more $$$ than we do?

If you can remember a particular phrase you used, you may be able to recover your post using search engines.  Use the advanced search forms from the major search engines, include your phrase, and other details that might be helpful.  

Even though the thread has been taken down, if it was indexed before it was removed, you may be able to access a "cached" version from a search engine.

Just a thought.

LisaAlissa 

LisaAlissa, good thought!  I gave it a try. I know some of the phrases for certain, and I did get search hits for the topic I had posted. But clicking through got me   'page not available' screen every time, and the various search engines don't have that page in cache.  I'll be able to recreate it --just need another cup of coffee to help me think!

NatsFan,  I will send a pm to the mods to ask.  Funny though, I pm'd to ask for clarification that once the story website is ready, it would be a-ok for me to drop links to that site here.  But no answer to my pm on that.

Maybe I should have made the domain name 'PO'd Women Speak' !

Carol

Fascinating.  In any case, a few hours ago, I did receive a pm from one of the moderators saying it's fine to insert links to the stories website. That mod even suggested creating a topic that invites women to tell their LE stories at the outside website. So that's one step in the right direction. --Carol

I think the objection was because I stated clearly that the stories would be used to support LE patient education advocacy, i.e. for a purpose not initiated by them. 

Binney and all you other can-do-WILL-do women,

I'll be putting some welcome material, including brief factual info about LE on the site's home page, so that anyone finding it who knows little of LE will find a bit of background and a good list of resource links to learn what they need to.  I'd prefer to get that part right the first time. If anyone can help out with some accuracy review, can you pm me? I'm not ready with it yet, but it would be good to know who might be willing to take a look and offer comments, for when I am ready. 

Carol

Kira, thank you so much for all this help to get the site launched with proper information. I will get in touch with JoAnn Rovig to ask about capturing her 'what is lymphedema', with attribution of course, and I will also check on LiveStrong to see if there are any protocol requests for placing a link to that piece. 

Don't back off on my account, although at just under 3,000 posts, your typin' fingers must be getting weary!  

Carol

I haven't gone through all the posts, but the early ones did catch me attn. I had SNB /bmx wed - 2 nodes removed. No sooner had they gotten me to my room than the aide whips a bp cuff on my right arm (the snb side). I tried to protest but she said if there was a problem they'd have put a pink bracelet on... well, a few minutes later they were back with a pink bracelet and a sign above my bed.

My BS and the nurses have said not to worry, but I'm numb right just past my underarm on that arm. I had been enouraged to move - in fact, I have almost full movement in my arm and used it extensively to get myself up and about and squirming in bed. I hope this doesn't cause problems. I had even seen Trinity's post before surgery and went into this 'aware,' but it doesn't mean much of everyone else thinks it's not a problem.

Rachelvk:

A couple of things--I was looking through articles yesterday and found a recent one out of Australia where the conclusion was:

http://www.bmj.com/content/342/bmj.d3442.full

Women perceive that lymphoedema is not considered as a serious illness by their doctor and other health workers, a finding previously noted in smaller studies.13 19 27 34 While women might have continual review for cancer recurrence by their breast surgeon three to five years after diagnosis, they might not return to them for issues related to lymphoedema. Women will also be under the care of their family doctor, and it is from this doctor they might seek advice regarding their lymphoedema. Because most women will have minimal overt signs of swelling at this stage, the symptoms they experience, including shoulder stiffness and ache, might be dismissed. Yet it is currently believed, although not proved, that intervention at the earliest opportunity is the most effective. To address the needs of women with lymphoedema and perhaps prevent progression, it is important that mild symptoms are not dismissed and that women are referred to the appropriate specialist.

Reguarding using your arms:  a couple of very good LE therapists have recommended no stretch through the axilla (arm pit)  for 10-14 days to let the lymphatics heal: this may be "medical" but it talks about it:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm--

-Consider limiting stretch on the axillary area for 10-14 days post-operatively, as lymphatics have limited time to regenerate: NLN Conference Lecture, 2010, Jodi Winicour PT

From Foldi Textbook of Lymphology: Lymphatic regeneration occurs as the stumps of the afferent or efferent collectors of a removed node connect as the result of proliferation of the endothelium at the terminal portion of the damaged vessel. Regeneration of superficial vessels in dogs takes 4 days, and deep vessels in 8 days.

Have your patients limit their arm movement to shoulder height for the first 10-14 days post-op-to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration.

Systematic review of early vs. delayed exercise has shown delayed exercise decreases seroma formation: http://www.ncbi.nlm.nih.gov/pubmed/15830140

A study in 2008, published in Physiotherapy, showed higher risk of development of lymphedema in women who had axillary node dissection and performed early vs. delayed exercise: http://www.lymphoedemaleeds.co.uk/Pages/Research.aspx

And finally, from the ACS (American Cancer Society)

http://www.cancer.org/Cancer/BreastCancer/MoreInformation/exercises-after-breast-surgery

The week after surgery: make it 2 weeks to be safe

These tips and exercises listed below should be done for the first 3 to 7 days after surgery. Do not do them until you get the OK from your doctor.

Use your affected arm (on the side where your surgery was) as you normally would when you comb your hair, bathe, get dressed, and eat.

Lie down and raise your affected arm above the level of your heart for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery.

Exercise your affected arm while it is raised above the level of your heart by opening and closing your hand 15 to 25 times. Next, bend and straighten your elbow. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of your arm.

Practice deep breathing exercises (using your diaphragm) at least 6 times a day. Lie down on your back and take a slow, deep breath. Breathe in as much air as you can while trying to expand your chest and abdomen (push your belly button away from your spine). Relax and breathe out. Repeat this 4 or 5 times. This exercise will help maintain normal movement of your chest, making it easier for your lungs to work. Do deep breathing exercises often.

Do not sleep on your affected arm or lie on that side.

Way too much information, sorry--but good for you to protest the nurse, you clearly can't think for herself--she should have grabbed a pink bracelet.

The short message is: baby yourself, no need to get full range of motion in your arms for a couple of weeks, you do need to move around, but walking is fine. You have to use your arms, just don't stretch overhead for a couple of weeks. My LE therapist just hated "reach for recovery"--as did the physician who trained her.

Kira

(who clearly can't stay away....)