What is this?

CarolnLA

I am an 8 year BC survivor.  I had a mastectomy, 6 months of chemo, 6 weeks rads and 2 years later a tram flap reconstruction.  Up to a few months ago all was well then my arm began to ache at times.  This was followed by noticing that arm or breast seemed larger, but really couldn't see any swelling, just felt this, then came the pins and needles feeling in arm particularly at the end of the day.  Also felt it in breast and sometimes down my side.  What is really weird is that where I had the tram flap incision across stomach, this area will feel like it is tightening up once in awhile and on up toward the breast where I know they tunnel up to make new breast, there is a tightening at times.  Has anyone else experienced this?  My mind immediately jumps to..is the cancer  back.. but wondering if it would exhibit all these symptoms.  Any ideas?  Have a call in to dr.

Binney4

Carol, were you able to see the PT last week as you mentioned in your earlier post? Is s/he specially trained in treating lymphedema? What did they say? I hope they weren't dismissive, but that does happen sometimes.

It's always a good idea to check in with your onc when anything new comes up, but be prepared with the names of well-trained lymphedema therapists in your area to see, and ask for a referral for evaluation. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Let us know what you discover! Hoping for clear answers and a quick fix!
Binney

carol57

Carol, I'm an LE newbie, and I had a different kind of reconstruction, so I'll comment but hope that someone with lots more LE experience comes along soon to add some real knowledge to the mix here.

But I can tell you that my LE, which is pretty mild, most often manifests as an ache-y feeling in my upper arm, followed by a tingly feeling --not quite the pins and needles we associate with a limb falling asleep. I generally feel but do not look swollen, in both my upper arm and down the side of my trunk, just below the armpit. 

When I was first discovering my LE and before I started treating it with manual lymph drainage and compression, I would indeed see swelling in both arm and trunk, but these almost always resolved either overnight or over the course of a day. Now that I'm taking care with MLD and compression, it no longer gets to the swelling point (at least not very often at all).

I am fortunate that my LE is pretty mild and I caught it very early, so management has been not too bad. Lots of women here have much more to deal with than I do. Who gets it, and how bad it manifests, seems to be so random at times.  I do know that we are at lifetime LE risk after surgery and rads, and especially if lymph nodes were removed.

Some of what you are reporting sounds familiar to me, so --although nobody in these parts ever wishes LE on anybody--here's hoping that what you're experiencing is something other than a cancer return.  As to the tightening at your flap incision, no clue on that one. If you have truncal / breast LE, I suppose that fluid back-up could cause the area to feel some new pressure.

More perspectives will be dropping in to help you soon, I feel sure.

Carol

carol57

Well, Binney and I must have been typing at the same time, because she's a go-to-expert in these matters! Carol, I hope you can get to the bottom of this soon.

CarolnLA

Thank you both for your post.  I go tomorrow for pt.  I was referred so will find out if they are trained in lymphedema.  I finally heard back from my dr.  She is ordering an MRI and will call me tomorrow with details.   Part of me is glad to finally have something ordered that may spread light on what is going on and the other part of me is scared worrying that this could be a recurrence.  One minute I think it is lymphedema and the next I am not sure at all and worry that it is the cancer coming back.  One thing for sure I can't go on like this indefinately.  I asked my dr. what she thought it could be and she said it could be a number of things, that is why the MRI needs to be done.  I am my own worse emeny because I tried to read into every word doctors say. There is this feeling of wanting to just put my head in the sand and ignore it all. 

Binney4

Carol, you really described this whole thing perfectly! The wanting to find out and wanting not to, the fear and hope, being both brave and overwhelmed, taking the steps you need to but wanting to pull back and run. Even the intensity of reading meaning into the words -- and even the tone -- that the doctor uses. Waking up in the middle of the night discouraged and scared, and the next day feeling foolish for wasting so much energy worrying. We're all with you on this -- it goes with the bc territory.

Looking forward with you to quick answers, and only good ones.

Hugs, prayers,
Binney

CarolnLA

Thank you Binney, will keep you posted.  Only those who have been there understand the feeling.

thefuzzylemon

Hello

I had nodes removed and part of a nerve in the auxillary...massive radiation as well.  My entire left arm "falls asleep" many, many times a day and I have LE and went through 3 therapists.  Here's my thoughts:

1.  Radiation can cause capillary damage and reduce circulation to the affected side.  This can happen any time post radiation (yup...years and years down the road).

2.  My LE usually appears as a "weird" feeling under my arm by the mx on the side...kinda like I keep rubbing on it...I found out that this is swelling and needs to be monitored and controlled - just like when the arm/hand swell up.  I didn't know that one...

3.  LE Therapists should always do/say a few things (there may be more):  Fit you for a sleeve and glove - instruct you to wear sleeve and glove together ALWAYS (do not wear one without the other)....Proper massage techniques that go from your belly-->side-->chest-->neck-->inner elbow-->wrist-->and reversed - as well as the proper breathing techniques.  They should explaint he importance and SHOW YOU how this is done (stimulating the lymphadic system and retraining it to help with the reduced capability from syurgery).  They should not put your affected hand in hot wax - this heat is high and will trigger LE. 

4.  Range of Motion techniques should be demonstrated to help you be flexible and encourage healing (radiation takes up to a year to heal from - depending on the amout of damage, of course).  There are really great ones that I learned from a free seminar I went to that was held by ACS.  PM me if you would like details.

5.  If you have a pain...don't wait 6-12 weeks to have it re examined.  That's just insanity...and yup...I waited 12 weeks.

 So...that's from my experience with LE therapists.  I hope this helps.

CarolnLA

Thank you fuzzylemon,

   I am learning so much here.  I think you can get complacent years out  although I never thought I would while I was in the midst of treatment and there isn't a day that goes by that I don't think about it, I  spoke at BC events and cheered on other survivors and I went back to my life and just put those scary thoughts of it coming back or anything else to do with it out of my mind.  Then something  happens that brings it front and forward and your looking at tests and worrying.  I read here how even years later damage from rads, chemo, surgeries can  surface causing all sorts of problems and this may sound weird but I almost would welcome that as opposed to hearing the cancer is back.  Cancer has given me a feeling of being in the luckless group.  You hear most lumps are benign, but of course mine wasn't.  I was in the luckless group.  And I think why should this be any different.  I know I should think that I am 8 years a survivor and that is lucky and most of the time I can think that way, but forgive me if tonight, fear and worry throw me back into feeling without luck.  One thing that never changes is your feeling of vulnerability

thefuzzylemon

Oh Carolin - I would give anything to feel even a little complacent!  I'm so proud of you for being able to go forward, help others and experience LIFE!  It is there everyday for me too....just about anything triggers it!  And, I would take my left arm clean off if it meant I would't get C____ again. 

You don't have to ask for forgiveness - you're in the land of BC Sisterhood Darling!  I would never negatively judge you or your feelings for being an 8 year survivor!!!!  And, by the way - CONGRATS!!! 

If you are interested ... I have a thread called Fuzzy's Romp Room ... it's a "free place" where you can say what ever you like - I get to let the "moan" out and get cranky about stuff.  It's really kinda nice and helps me let out some creativity.  Come on by! 

I'm super glad you liked the info.  Seriously, there are therapists out there that really don't give a shit.  I had two for sure.

XOXOXOXOX

CarolnLA

Thank you fuzzylemon for your kind words.   I will check out your thread.  Feeling fragile and worried today  Feel like I am afraid to move forward but don't want to stay in this place of worry either.  Had hope I would never have to experience those feelings again, and I get you, I too would give my left arm if I had a guarantee that I wouldn't have to deal with it all ever again.

CarolnLA

 Binney4, I went for PT on Tuesday and I did tell her about lymphedema and at least she knew what I was talking about.  She basically did more of a evaluation of neck and shoulder and some exercises to do.  In the meantime I have been talking to my obgyn and she wants an MRI to see what is going on. This is scheduled for 2/23.  One minute, after reading discription here, I am sure that lymphedema is what it is, then I read something else and am sure that the cancer is back.  I have poked and prodded myself so much that everything feels ominous and cause for worry.  I just don't know what to think.   Trying to take deep breaths and tell myself not to get ahead of myself. 

Binney4

Carol, I know the 23rd must seem like centuries from now. Deep breaths are good, and so is anything distracting and upbeat: a brisk hike, a funny movie, an absorbing romance novel. Hoping the MRI will give you some relief, but if it leaves the docs baffled do look for a specially-trained lymphedema therapist -- the regular PT training doesn't equip them to evaluate or treat lymphedema.

Hugs, prayers,
Binney

CarolnLA

Thanks Binney4, I have a 3 day weekend coming up and I just want to take off and get away and go do some fun things if that is even possible. I am at work, I work in a school, and I feel like I am going to jump out of my skin any moment.   I find myself coming here and reading, reading, reading trying to find something that sounds like what I have.  As I said, I feel a tightening feeling around the upper arm and there are times that it feels like pins and needles not only there but under arm, feels like a ball there, behind shoulder, down, arm, down side and in breast area.  I have scar tissue on left side under arm from mastectomy and tram flap reconstruction and it feels either swollen or like something has grown there and seems to worsen during the day, better in the morning actually feel pretty good in the morning. I don't see swelling, and the fact that it's been 8 years since dx makes me skeptical that it is lymphedema. it sounds like so many here come down with after their surgeries.  Then again I do wonder if the abcess tooth and subsequent root canal (actually, I thought I had mouth cancer cause my gum had swollen up and they couldn't find anything on xray initially, then lump poped and fluid popped out, oh gee, you have an  abcess)I had done in Nov/Dec. and anything to do with all of this.  Didn't mean to go on and on, my mind is all over the place. Sorry, anyway this place is a great help. Just have to stay in the moment till the 23rd.

Binney4

Carol, lymphedema can happen at any time after treatment. We have women here who developed it 15 or even 25 years later (wow! 25-year survivor!) Lymphedema is no treat, but it's better than what you're fearing. If it's any help, everything you've described sounds like lymphedema -- better in the morning, worse as the day goes on; feeling of tightness with or without visible swelling. Even the trauma of the abcess that could certainly disrupt the orderly flow of lymph fluid as your already-compromised lymph system went into crisis mode to fight that infection.

Also, I have to tell you that for most of us, our doctors were very slow to recognize our lymphedema or take it seriously. Many doctors have no idea it can affect our breasts, chests, axillas and backs, and even if they're aware of it they can't "feel" it under our skin like an experienced lymphedema therapist can. Unfortunately it's not a subject that's taught much in medical schools or as follow-up professional-credit coursework.

So while I sure get why your mind is all over the place (been there, done that!!), I'd just encourage you to dwell on lesser evils than a cancer return. In the meantime, here's information about breast/side/back/chest lymphedema, which is actually called truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

You're sure not alone; we're here for you. DO have a great weekend -- and maybe stay off the google symptom searches, if you can? They always end up looking grim, no matter what.

It'll be good -- hang in there!
Binney

CarolnLA

Well, after waiting almost a week I got my MRI results in the mail yesterday.  The day started off terrible, we had to take our 10 year old Husky to the Vet for what we thought was problems with the hips, turned out she was bleeding internally and we had to put her down, first big shock.  Then within the hour of hearing that, got news that a good friend died, second shock.  I turned to my co worker and said, they come in 3's, watch, I will get my MRI results today.  Sure enough, my husband calls me and tells me that there is a letter from the breast center that came in the mail.  I went home early and well, you all know how it is, you don't want to know and yet you have to know.  Shaking I opened it up, "MRI appears normal", I think I just about collapsed from relief.  This was for the cancer breast, left side that I had been feeling some strange feelings and pushed to get it checked out.  It did go on to say that there was a small something on the right breast that appeared benign and they suggested a recheck in 6 months to see if there are any changes  That's fine with me,  I just had a mammogram on that breast and it came back fine so not going to stress over it.  My symptoms have decrease not sure if that is due to less stress or what but am going to follow through with seeing a lymphedema therapist just to see what they say.  Just wanted to thank all here who listened and offered suggestions and support. I am 8 years out and pray that it continues.

carol57

Carol, What a relief on your MRI, and what a reassuring ending to a day the likes of which we hope you will never have again. I've had to say goodbye to beloved dogs several times in my 40 years of dog friendships, and it's always heartbreaking. Losing a good friend is heart shattering...I'm glad your own news was gentler, and good today.

Carol 

CarolnLA

Thanks Carol for the kind words.  I am feeling relief for the good news for me but feel the loss of my sweet dog and the deep sadness at losing her so quickly.  We have a little dog also and she is looking around for her buddy. I can tell she is sad too. It's never easy.

Carol

     

kira66715

Carol, I'm so sorry about your husky. Our dogs are such members of the family.

I'm glad the MRI was all good, but I'm sure you're still reeling from the loss.

Kira