SEPTEMBER 2009 RADS

This happened a few days before Xmas, and I wanted to mention it because a couple others are getting PT for chest/arm tightness.  After I had two sessions of massage on my lumpectomy scar tissue, I did not feel much difference.  My tightness is not just from the surgery, it actually feels like the whole radiation rectangle is tight when I stretch my arm.  I asked about getting therapeutic ultrasound over that whole area cause I heard it breaks up scar tissue.  Well, I was told that it was contra-indicated for cancer patients.  Something about the ultrasound heating up the cells in the area, stimulating blood flow and growth.  

I just know you all are now thinking the same thing I was:  After surgery and rads, isn't all my cancer supposed to be GONE!  Will one of you tell me why I went thru' rads, if it couldn't wipe out every cancer cell in that area.  Well, long story short, I just dropped it, but I thought some of the women on BC.org had the therapy.  Maybe it's a controversial thing?????

Kawee - Why not start with the rad onc since this seems radiation related ? You can always ask your medon or bs if you dont get suiitable answers.

After reading about the ladies having PT for lympedema and having the fringe benefit of their scars shrinking, I tried some self massage (two finger tips rubbing in a circular motion) and at this point can get the knot to almot disappear after about 10 minutes so evidently this is some sort of fluid buildup. I do notice that if I do nothing for several days, it builds up again and gets a little sensitive. So, maybe you can also try a little self massage and see if it helps.

Hi all hope everyone did have a good Christmas--I agree alot of eating and rushing around ( and i dont even celebrate Christmas) still crazy time of year--Betsy I am worried abut your breast-- swollen is one thing but hot and red is different especially with a lump in your arm pit-- i dont mean to butt in but maybe seeing your breast surgeon would be a good idea--seems like you have been dealing with with this for a while-- hope i didnt butt in but i think that is what i would do-

I am having a lot of reflux and sour throat and cough didnt sleep last night taking zantac but didnt help --between the fosomaz and arimidex i dontknow but this really sucks --gotta go to work I am now very late --oh well-- Laura

Dear Betsy..get thee to the bs now...I hate that 4 letter word.. l u m p..,..I want you to come on here and tell us it is some freaking side effect that only ducks get.,,please!   Don't make me come out there!

Sounds like some of us aren't feeling the best....maybe it is the holidays...maybe we need to realize that we still aren't "back"  I found that out this past weekend...going crazy with the holidays...pulled a muscle cleaning and climbing around cleaning...plus cooking and doing laundry for my kids...I just need to to lay back and realize that I can't be perfect with this stuff.not right now..and my kids don't care...it's me...wanting everything perfect for them

Maybe I shouldn't do this here but who reads this thread but you guys..so..if you go on facebook and go to Joyce Williams,Akron, Ohio b-day 9=27 you can see pictures of me and my family..you can do it without signing up for facebook...ccbaby and I are friends on there...it is really easy,...try it..I'm too stupid to put them on here..

I've been seeing a lymphedema expert for the past 3 weeks to learn the manual self drainage technique and also some stretches for the tightness in the radiated side. I had bi-lat mast in April so some of the stretches are the same for getting range of motion back. It is amazing just how much tighter the radiated side has become across my chest, in the pecs and armpit and also some fluid buildup down my arm and along my side in the lats area. Sometimes I can even see it up around my collar bones. Now that I've learned the steps for moving lymph fluid around to other areas that can take it, on those days that I do too much or push the workout in yoga to a stronger level, I can recognize where the fluid is building up and move it out to a functioning lymph area in another quadrant of my body.

Since we are all vulnerable to lymphedema issues for the rest of our lives, I highly recommend finding someone in your area that has the knowledge and training that can teach you the method so you can stay on top of this and be proactive about keeping the ability to use that arm to it's full potential.

 Betsy, this infection thing must be really scary. I hope you get some decent answers soon and relief from this pain.

Titan, like you I have days where I do too much because I actually do feel good. Then I get smacked down and wonder what happened. My ONC is always reminding me that I'm only 4mos. out from chemo and 2mos. out from rads. I am beginning to think I have to plan on a new "normal" and get rid of the old notion of what being "back" really is. The only thing that continues to cause serious pain for me is the neuropathy in my feet. I still feel like I'm walking on golf balls. The ONC said they don't make judgments about that until you're 9mos to a year out....hmmmmmm......would really like to be able to walk.

So far no huge issues with Tamoxifen. A little weight gain and some sleeplessness but nothing to make me think I'm going crazy......of course I was already a little crazy to begin with so this may balance that out!

My husband and I are going to have a ritualistic burning for New Years Eve since we both battled cancer this year and are ready to close the book on 2009. I've gathered up all evidence of unused medicines, pamphlets, pink ribbon teddy-bears etc. and anything that talks about breast or prostate cancer. I think we're going to attach stuff to bottle-rockets and jettison them out of our lives.

 May you all find peace in this new year, be well, OXO, Mary

Mary, love your idea of ridding yourselves of cancer stuff..I think I will do that next year.

Back when I was doing rads, I noticed my arm looked 'fatter' than normal. It also felt heavy and achy. So, I asked the radiologist about it and he set me an appt with a lymphedema therapist. I went in for my consult and was diagnosed with stage 1 lymphedema. She said that she has seen more people come in during and after radiation than any other reason.  I had 4 sessions and was taught manual massage that my husband does for me every day. Yes, EVERY DAY for the rest of my life. She also gave me a list of exercises that I have to do too. I was fitted a compression sleeve and gauntlet. I have religiously have done my massages every day and have not had any problems since. If you catch it very early like I did, it easily controlled. If you wait too long, it is harder to get the build-up fluid drained through.  Good luck.

At first I went for tightness and they had me stretch and they stretched and that's when I developed the fluid.  One time I stretched my knee and it hurt alot and got fluid in it.  Sometimes I think the fluid is from all the stretching exercises they have had me do.  Not til later did they tell me only do it until it barely hurt.  Before that, I was really stretching, and it hurt alot.  I told them, but they didn't say I shouldn't.  Then they started the manual drainage and showed me how and I do it, but it hasn't done any good.  I don't know how you tell the difference between fluid from injury or lymphatic fluid.  I did tell the Dr. all this though. 

Betsy, I am so sorry.  I too, have a bad cold, and on top of everything else, it's double misery.  Glad your going to the bs. 

I wanted to ask you ladies also, is the fluid painful.  Mine really is, side of breast and underarm.  Very painful.

kawee, breast/chest lymphedema is often very painful, and the pain does not respond well to pain relievers. It also may seem to move around a bit from one spot to another, making it difficult to pin down exactly what hurts (and making you feel like you're crazy!) Good therapy will relieve both the swelling and the pain.

Hope you soon have relief!
Binney

Oh, Titan, I am sorry you feel the way you do.  Stress just does us in.  The stress of a pulled muscle (wondering if it's something else), going to the Dr., Christmas, company,  giving a party(who has that energy!!).

We aren't doing anything for New year's this year.  First year in a long time.  I'm totally stressed about this fluid and soreness under my arm.  I don't know, sometimes I feel like I can't get back to being as carefree as I used to be.  Maybe yoga or something, who knows.

Thanks for your help...sorry to say that we are all the same boat....but it is nice that we are all in this together...Betsy...how did your appt. go?  Hopefully you will be fixed up SOON and feeling better!  Even though you may be sad that your Ducks lose...but that is not the most important thing!

I feel a little better today...nothng that a couple of glasses of wine won't cure!  I was freaking out about bone mets..even though it isn't my hip bone that is painful...from research I understand that bone mets hurt all the time..I have no problems sleeping or sitting..just things like sweeping or hanging curtains bothers it...I really hate freaking out about every little twinge....that sucks!

Happy New Year everyone!  We are going out early 5:30!  Then probably home by the time my kids even go out!  Funny stuff..guess this is what it is like to be old!

So hey Lollys...it's amazing how many Ohio people are spread around everywhere...I think Betsy's LDH was from Ohio also..just 25 mins. from where I live.  My DH works for OSU...my parents who are 75 and 77 are the biggest Buckeye fans around...In fact, we got them OSU rocking chairs for Christmas... We like OSU lots too...kinda hoped our kids would go there but they both chose elsewhere....oh well..you have to let them make their own path. 

Hanging curtains is definitely detrimental to our health...I won't be hanging any more for awhile..