Trunk LE- Suggestions? What works for you?

Deja, truncal LE sucks, is painful, and it definitely can effect size of top or dress. Ugh. To answer your question about wearing compression tanks 24/7, that is exactly what I had to do for four months straight in summer of 2009. Sometimes even had to wear a channeled insert to provide further compression on one side. Yes, they are hot as hell in summer, but they do the trick. I wore the Maidenform regular Control It, but there is also a firm control. I haven't seem the regular for a while, but they still make the firm control. I had implants at that time, and the compression on them was often painful. I tried to find tanks with some space for boobs, but none of them fit me right. I felt like Goldilocks (still do, actually) because if it fit one spot, then it pressed on another, which aggravated that area. Very frustrating, especially since I had gone to the effort to have recon and the only tanks that fit me flattened and squashed my foobs. I remember your symmastia, as we had surgeries around the same time, but you had your implants removed and then had autologous tissue/flap surgery to create breasts, right?




Now about the kettle bells. Even though they might not effect the pain in your arm, your chest is still working very hard when you lift weights. My LE therapist, and even the Univ Penn PAL weightlifting study trainer who worked with me said no weight lifting until LE was stable for a certain amount of time - this is all individual and truncal is harder to measure than arm, but pain and swelling are symptoms of truncal LE that is not stable. I'm sure you're trying to reclaim your life and the time you lost - I so relate to that because of the time I lost, too - but the key for reclaiming control will have to come with: first, LE stability, and, second, when you start to lift weights it will have to be very slow in progression. LE is a condition of inflammation, and if you increase your lifting in small increments it will help prevent inflammation. So, this is not a time to be gungho and try and stay on track. Not what you want to hear, but if you can have just some more patience, you should eventually gain back that control. Everyone is different in how quickly they can progress, and some will always have difficulty. You need to lay off and give your body a chance to adjust. Finding the right compression garments that feel comfortable and don't cut and aggravate an area is your priority. You may need some inserts to help with that comfort factor. Summer is departing, the heat will be less of a factor, which should work to your benefit, and clothing can be layered to help with any inserts if necessary.




Come join us on the exercise thread. Carol57 has been involved with the PAL protocol and will have insight on the weights. In the meantime, I have found that aerobic exercise - again, at a slow progression - has done wonders for my swelling. You are exercising the lymphatic system's thoracic duct with the deep breathing that comes along with aerobic exercise. However, even walking for a good distance does a great job as well. It has taken so long for me to see any progress with my physical conditioning, as the truncal LE was first an issue, then the implants and surgery to remove last year, and then arm LE in Feb of this year. All is finally settling down and stable, and I have been at the pace of a tortoise but slowly progressing. I used to be incredibly fit, and I was depressed about that loss for the past few years. It was never meant to be this way! Alas, it has been this way and all I can do is respect my body and go with it. Still haven't done the weight training yet, but soon. Focusing on aerobic conditioning has kept me feeling like I am going somewhere with all this, and it has actually been very helpful.

Deja- Hi, I haven't seen if you have posted on the exercise kick butt thread but I sure hope you have joined us there.

Reading your post I see you are worried about only exercising a limited amount of time and feel inadequate to post your exercises. I am here to tell you I have very limited exercise in my schedule right now as I am slowly working back into a exercise schedule. I have to break my excercise up into 10 min segments due to pain issues.   It doesn't matter how much you do as we are all at different levels. We just are hear to encourage one another. We have no competition on the thread and you will benefit greatly doing what you can.

Since I had to slow down on my walks (use to walk 3-4 times a week for 45-1 hr) I find that my trunkal has kicked up a notch. If I walk and pump my arms like a race walker my trunkal is minimal. Since I have had to slow up my exercise I now wear a swell spot that covers my breast and around my underarm. This I wear at night with a cami and it greatly improves my situation.

I also take deep belly breaths when I remember and especially when I walk. I raise my arms straight in the air above my head and pump my fists for about 25 pumps especially when I walk. All this seams to control my trunk.

Once I can get back to walking I am hoping I won't need the Swellspot.  It was about 50 dollars. If you find it presses too much on your breast causing pain then try the Swellspot that just fits under your arm pit. This is helpful also for your trunk. They both fit into a cami that should be snug.

So we want you to post on the kick butt thread even if you only can do deep breathing. Anything that improves your life is postable! COME ON. JOIN US! We are a nutty fun bunch that will lift your spirits.

June and Connie, I am wondering if there are some LE support groups in your areas.  Connie, check out www.lighthouselymphedema.org, which is centered in Atlanta, but I believe the wonderul Joan White, director, is well networked and might be aware of a support group in or near Savannah, or other resources. Lighthouse Lymphedema is a very good and strong organization that I feel certain can help plug you into any Georgia resources for help with garments.

June, one of our LE forum members, BeckySharp, started a lymphedema support group in the Knoxville area, which seems a bit far from Signal Mountain.  But you might PM her and ask if she knows of any support group resources out your way.  I know that Becky has met some amazing people who are very well regarded in LE circles, so networking may help you find some identify a very good LE therapist who can evaluate your symptoms.

In the meantime, have you both spent time at www.stepup-speakout.org? It's a treasure trove of patient-centered support, with tons of very practical information about garments, LE treatments, and especially how to find a qualified therapist.

Connie, no one here is going to take offense at anyone's frustrations with LE.  Feeling frustrated and left to your own devices to figure out what to do is all of our shared experience.  I'm sure others will be by here before long to give some suggestions along the lines you are asking.

Hang in there.  This is not easy, but it's not impossible, either.

Carol

Will review and see if I can describe.

Connie, I hear you. Please know this is definitely the place to vent and share the tears. We all get it. This is a grief process, and grieving is hard work. There is nothing selfish about being unhappy. We're here for you.

Not sure why the reaction to MLD is so much increased pain, but ask about it and expect an explanation you can understand. None of this is easy, but the treatment should not be painful.

The emotional aspects of this are no small matter. Here's an article about that that has been helpful to a lot of women:
http://www.stepup-speakout.org/patoconnorcopng.htm 

It gets better, honest,
Binney

Grannydukes, the whole idea is to find what works best for both LE control and comfort--both are important. It sounds like you've found that happy place, and it's absolutely wonderful to hear that. This calls for some serious chocolate!

And on the other hand, it pays to keep our eyes open, because you never know when something new will surface that is even better.

Be well!
Binney

Knowing it gets manageable, and that lm not faux-sad/mad/grieving helps a lot. I'll share this with family and maybe it will help them too.

A BIG disappointment in regards to the medical teams, esp the rads staff. They need a personal experience before treating any more souls passing thru their depts. They dare to call your swelling ---fat? I have plenty of fat, but OMG, thats incredibly ignorant in this day.

Its possible that trying to do MLD by myself that l was too aggressive, but also that the backing up of fluids has been going on for years and will take a while to get going again. I can half understand the pain after massage.



So, this is a rest-of-my-life condition? And l'll be wearing these garments everyday til l die? And at night? Oh geeze.

And the pain mostly is in my shoulder, weakness in arm, visibly swollen breast. I see therapist again today. She checks everything, measures & answers questions. Med staff that arent docs or PAs seem to have a lot more compassion.

Im sleeping long again. Depression? Very,very sad, it shows on my face. I dont want to get up, or go or do anything. I know its bad when l start thinkin of visiting my grandmothers grave, to tell her how unhappy i am and cry.

Poor, poor pitiful me. Lord have mercy.

C

Connie, LE is a rest-of-your-life condition, but we're all different, and not all of us have to use compression all day every day, or at night. It really varies. It's hard enough to get used to the idea of "chronic," but you don't have to deal yet with a verdict of 24/7 compression.

Sadness, yes, for sure. Does your cancer center have any counselors that know how to deal with chronic conditions?

You can do this! Tell us how we can help,
Binney

Oh Connie, your posts put me in mind of where I was a year ago, and I want to tell you that it does get better. When I finished therapy and found out I needed to wear day and night garments forever, I was an emotional wreck for weeks or months--reminder crying all the way home and then running into my condo neighbor when I got home still crying.  But it does get better.  I can even say "I love my Tribby!" (night garment) Never would have imagined that.  Of course, I don't love it so much at bedtime in hot weather--I'm not one to run the A/C much or very low.

The SUSO web site and this board were the lifeline that got me through that rough time.  Hang in there--it does get better.  There is a definite adjustment period to the "New Normal," and there are always highs and lows, but we can meet the challenges of living with LE~!

June--I have not forgotten about the Siskin info.  My friend says she has their last flyer and is going to email me the info.  I will post here in case there are others in your area.  Becky

RE:  " I started reading, read,read more... putting the pieces together, by myself and these boards. ..."

Wow!
Why does this sound so damn familiar?!  Maybe we should get the DR FEE$!

I go to a Harvard trained dr.  and when she looked at this 3 weeks post op she just shrugged.  The RO said it was nothing much ( didnt have rads) and the MO " Couldnt see it"

Its been driving me nuts for 5 mos so I finally called today because I am going for  a DX mamo next month and  want to know if this will make it worse if it is breast LE.  I can picture dents!!!!

ONLY got to speak to the NP  ( not thrilled with that ) but she said it most definitely sounds like breast edema OR breast LE.  Hmmm... is there a difference ? Surgery was 5 mos ago. I had no post op instructions.  I put an icepk in my bra once , dozed off and woke with these pink marks.  They have never gone away.  Did I CAUSE this then ?

I have NOT been wearing a bra.  She told me to start with a good sports bra and also put  a maxi pad in it to add compression.  Should I wear one at night or NO ?????

Does this sound right ?  PLS let me know,

This sucks.  I am feeling like I was at an incredibly early stage with a great prognosis and now I feel like I am at higher risk for IBC  or recurrence . Is this true ?

I only had 2 nodes/ SNB and all looked good as far as results go.

WHY didnt the BS say it looked like LE 3 weeks post op???!!!
Maybe it was soemthing she though still might resolve ?
I dunno'.

PLS reply...or PM.

Thx for your support.