New member here

[Atex]

Hello everyone, I am new here. I found this forum while surfing the net, and have been busy reading your messages, which I find very informative.

Two years ago I found out I had breast cancer. Had the surgeries, chemo and radiation treatments. I was so glad when all that was over...as I was eager to start my life again, but now suddenly my arm started to swell and it looks like it might be Lymphedema.

My problem is with the doctors that I have seen so far...they don't seem to know anything about this condition, and I feel helpless.

Tomorrow I am going to see my oncologist, hoping to see if I get a diagnosis once and for all. So far all they have told me is to keep my arm up, or rest it, but I know that I should be doing more than that.

I was wondering if someone in here would give me some advise on what questions I should be asking my doctor when i go see him.

My oncologist is two and half hours away and I don't get to see him very often, so I want to make the most of it.

By the way, my name is Anna and I live in Texas. So far I like what I have read, and you seem to be a bunch of great people

Have a good day!

Anna:)

[Cassie]

Hi, Anna, and welcome!

Sorry you're having trouble getting this taken care of. Many of us have had the same experience. Hopefully your onc will diagnose it at once and refer you to a qualified lymphedema (LE) therapist. I had trouble getting any of my doctors to act on mine, their reasons ranging from, "You can't have LE because you're too thin," to "Let's just wait and see." If that's your case too you may have to simply insist on an evaluation by a therapist. Don't be put off, because LE has stages, and just as in bc it's better to begin therapy in the earliest stage possible. Be sure to check out the training and experience of the therapist when you call to set up an appointment. All LE training is NOT created equal! (See the article on this site called "LANA is Important" for information on how to judge a therapist's credentials. The web site www.mylymphedema.com has a way to search for a qualified therapist.)

Even at two years out those oncology follow-ups can be stressful, yes? Wishing you a GOOD experience tomorrow, and please do let us know what you find out.
Cassie

[Atex]

Hello Cassie, and thank you for answering my message.

The doctor's visit today well well. He had bad and good news for me. The bad news is that I DO have Lymphedema...the good news is that is at an early stage. He has put in for a referral with my insurance for me to see a Lymphedema specialist. I think there's is a clinic and rehab close to my home.

The other bad news is that because of the Lymphedema, he does not reccomend breast reconstruction, as that would put me more at risk.....that to me was devastating news...I was ready, emotionally and physically to take that next step and feel more normal...

So tonight, even though I feel blessed that I am alive, I am also very sad and I think I am going to have a pity party all to myself...tomorrow is another day....but tonight I am going to have a good cry....

It has been two looong years, and I think I have earned my party.....

Once again, thanks!!

[Ann]

If breast reconstruction is very important to you, don't give up hope. After you have the lymphedema under control, you might consider it again; however, you do need to be an informed and cautious consumer when making this decision.
A good step toward being informed is to read the article "Lymphedema and Breast Reconstruction" by Christine Thomas. There is a link to this story on the home page.
Best wishes,
Ann

[Cassie]

Yes, Ann, thank you! I'd read Atex's post this morning and didn't have time to reply, so have been waiting all day to get the time to tell her about Christine Thomas's article. So glad you had the time to beat me to it!:

www.lymphnotes.com/article.php/id/265/

Having said that, Anna, I just wanted to add that YES! you have every right to a pity-party -- wish I could have been there to give you a big old hug and cry along with you. OF COURSE we feel blessed to be alive -- but we also feel grief and frustration at the on-and-on-and-on of brest cancer and LE.

Still, after the tears it's fun to be able to hope again, and Christine's article does make hope feasible. It's another factor to be weighed in the reconstruction decision, but at least it's not the complete ban some might suppose. Print it off and run it past your oncologist next time you're there so he can have that hope to share with the next woman in line!

And by the way, the National Lymphedema Network ( www.lymphnet.org ) also has an article reprint available called, "Risk of Surgical Procedures in Limbs with Edema (Lymphedema)". It's more technical than you and I need, but it might be a help to your surgeon along with Christine's article.

For now though, I'm trusting your referral will be quick and the therapist skilled and knowledgable. Keep in touch, okay?
Cassie

[Atex]

Ann, Cassie, thank you for the info. and links...

As for me, I am done with the pity party, and I am now ready to fight......again...and as long as another person doesn't tell me "You're strong, you'll make it"... I'll be okay. I 've heard that too many times already.

Having read all these messages, and knowing that there are others out there with the same problem helps a lot...I wish there weren't so many, but it helps to know that I haven't been singled out....

You ladies have a good night and thank you...

Anna

[Cassie]

Amen to the idiocy of the "you're-so-strong" comment. My own personal least favorite thing to hear is, "You're so brave." Makes no sense at all. Somebody should do a study to see if "brave" and "strong" people are more likely to develop lymphedema, as opposed to the chicken-hearted and the weak. The way people talk, you'd think it was one of the risk factors!

Onward anyhow!
Cassie