Join Us

We are 217,484 members in 84 forums discussing 160,588 topics.

Help with Abbreviations

Topic: I need help

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Aug 18, 2006 11:57AM

cewoliver wrote:

I had level 1 & level 2 node dissection along with bilateral mastectomies .I have had a total of 5 surgeries(biopsy,lumpectomy & node dissection,mastectomy,drains replaced,exchange )on my right side . I live in a rural area with little speciality services. I am having some problems with my arm. Pain at times asleep all the time .Ant crawling feeling and tightness at times. Slight swelling at times. I did get the doc to write an order for the sleeve .I use it to walk and do house work. But I am afraid that if it starts swelling big time I will not have anywhere to go for help.
Just a little added note. I was suppose to return to work the 1st of the month. Well it seems now there is no position for me. I think it strange that it was all ok until I gave them the 20 lbs. weight limit for my right side from the Doc. There was no question before. I am a secretary with only occ. time that I would need to lift that much you would think since the office is full of people that I could be accommodated. Oh well God has bigger and better things for me.
Elaine IDC ER+ PR + HR - Neg nodes
Log in to post a reply

Page 1 of 1 (8 results)

Posts 1 - 8 (8 total)

Log in to post a reply

Aug 18, 2006 12:44PM jz20022001 wrote:

I'm sorry to hear that your company won't accommodate you. I had a similar experience when I worked for a large pharmaceutical company. I returned from my maternity leave and was told that my position had been filled and they didn't have anything to offer me. Yeah, right! It was an insult to my intelligence, but I was out of luck. (My son is now 22).

When my daughter was born (now 13) a different company told me that I'd have to take a 25% paycut or leave. I said, "I have an infant in daycare, I can't afford that kind of a paycut." I found a new job that paid $10,000 more than the old one and I called my friends at the old place so the jerks would hear about my good fortune.

I should have known they'd give me a hard time when I had to drive myself to the hospital and they were giving me a hard time when I said I'd need six weeks off to recover. Still it was very irritating to lose two jobs right after having a baby both times.

There are plenty of companies who don't follow the law.

Log in to post a reply

Aug 18, 2006 01:45PM Binney4 wrote:

Hello, cewoliver,

I'm so sorry about the stupid lymphedema, and the job nonsense on top of it. Here are a couple of suggestions for getting help with the lymphedema (LE).

First, you can order the Revised 2nd Edition of a book called "Lymphedema: A Breast Cancer Patient's Guide to Prevention and Healing," by Jeannie Burt and Gwen White. It has lots of self-help information that should put you on the right track.

Secondly, it would be a huge help if you could see a qualified LE therapist for a consultation. Since it would mean excessive travel, you might arrange for a single extended session (or two) in which she would teach you self massage and wrapping, skin care, exercises, etc., and give you the tools you need to care for yourself. If so, do take someone along to learn with you, as you'll need help to remember it all. Also, if you've already read the book and are familiar with the material, it'll make the learning process easier.

Here's a site where you can find links to qualified LE therapists in Virginia and neighboring states. Hopefully one won't be too far from you.

I don't know who fitted you for the sleeve, but the fit needs to be perfect and the sleeve needs to be replaced every 6 months. A glove is recommended to wear with the sleeve, as otherwise the fluid may be trapped in you hand, causing it to swell as well.

LE is complicated (not to mention disheartening), so please do feel welcome to come here and ask questions or share your concerns. We really do need each other!

Keep us posted,
Log in to post a reply

Aug 19, 2006 03:50AM AmyE wrote:

Hi cewoliver,

I also live in a remote area, on an island in fact. We have a physiotherapy department at our hospital, but none of the physios know much about LE. I taught one of them how to measure me and she has invited me to show the group how to massage and bandage. At least they are exposed to something new. My hope is that the next physio the hospital hires will have this training.

When I was getting my radiation, I had to spend 7 weeks in Miami. There was so much going on in that city in terms of health and cancer support services compared to where I live that it was very interesting for me. One day there was a women's health conference at the hospital where I was being treated. I had the opportunity to talk to a PT who said I should definitely get a consultation for LE. I alrteady knew a little about LE but I didn't take it seriously, especially because none of my doctors did either. None of my island doctors ever mentioned it and my Miami doctor had already dismissed it as a possibility.

Speaking to this PT gave me the courage to go back to my Miami doctor and push him for a referral. To my surprise, once I was assertive about my needs he responded in a very helpful way. He ended up referring me to a qualified PT who does only LE work. In six one hour sessions (spread over six days) she treated me to get the swelling down and trained me how to massage and bandage myself. What really helped is that my husband came up for a visit and observed the process and took notes.

Two months later I had to go to Miami again for a follow-up appointment with the radiation oncology department and I arranged to see the LE PT. I found I needed a refresher course on the massage and this was very helpful. Again, my husband was there which really helps reinforce all of this new learning.

Binney gives good advice. I don't know if it's possible to really get this whole thing down without someone who's qualified doing it to and with you. Right now, I'm doing well on my own managing the symptoms and treating myself with my husband's help. Reading the postings on this discussion board is also a great support.

Good luck!

Log in to post a reply

Aug 22, 2006 05:10PM NPat wrote:

I am so glad you found us. Binney has given you some good pointers. Do find a certified therapist. They can give you the evaluation and treatment you need.

I went through difficulties in the workplace also. This is very common. There is legislation that is in place to protect you when you go through trials with cancer. I believe that if there are 15 employees, the Americans with Disabilities Act is in play
and the Family Medical Leave Act is helpful in situations where there are 50 employees -

The American Cancer Society does have a helpful booklet that reviews what your rights are in your particular situation

You WILL get through this. Keep posting.

Log in to post a reply

Aug 23, 2006 01:27PM cewoliver wrote:

Thank You all so much .I have been busy the last few days getting my nipples .I am so happy with them. Anyway I have called about getting into to see a lymphederm spec. Have not heard back yet .I am going to read all the stuff NPAT sent me. Thank You for caring enough to take time to do that. God does have angels here on earth. .I am still waiting to hear about my job but I have to send 1200 for insurance on friday and they will not tell me one way or the other . If I send the money and go back to work I bet it will be hard to get it back and that is a big chunk of change .lolo

Elaine IDC ER+ PR + HR - Neg nodes
Log in to post a reply

Aug 31, 2006 04:45PM cewoliver wrote:

I got a call back from lymph. therapist who is only an hour away . I go on 9-11 (sad day) . I also got a call back from my work. It seems that they abolished my position. They hired a new person that day and transfered another one who is now doing my job. I have been soo blessed though .I am going to be fine . God has not ever let me down and He won't now. I thank you all for caring and for the advice .God bless you all .We will come through stonger, braver and smarter .I now pay more attention to the important things and don't sweat the small stuff. Unless I am having a tamoxifen induced hot flash. lolo

Elaine IDC ER+ PR + HR - Neg nodes
Log in to post a reply

Sep 1, 2006 03:27PM NPat wrote:

You have a good attitude. I was replaced also and I am in heathcare. My personal physician hired me and I didn't have to look for a job. I dreaded the job hunt and God spared me. Those individuals without compassion will bear the responsibility for their actions. I told my onc this week that I always pray that God grant him wisdom. He told me that he prays first for compassion for his patients and then wisdom. That really impressed me. I need to pray more for myself that compassion is evident in my caregiving... I feel BC and LE have helped in that regard already.

It will work out. Please keep us informed.

Log in to post a reply

Sep 2, 2006 08:15AM Binney4 wrote:

cewoliver, your adventurous spirit is a delight. Yes, you'll come through "stronger, braver, and smarter" -- and with a better job, too!

So glad to hear you'll be starting therapy soon. (Sorry about the hour's drive.) Keep us posted on your progress.


Page 1 of 1 (8 results)