lymphedema

I admit, I did not get in on the beginning of this discussion.  I am only replying to the edema.  From the little I know about it, I would think it comes and goes so I would hope you won't always have this with you.  Perhaps the doctor only wanted you to be aware of it and take what steps you can to address the swelling - the support hose or bands at that time.  Sounds as though you are very observant and doing a good job!  My best to you.

jo29553, I just received a similar shocking diagnosis, though for a different reason. I do wonder, however, if it really is for a different reason after reading your post: I had the same surgery and am unsure how much was removed (lymph nodes also or just ovaries). Just know that you are not alone, nor the only one afraid of this bizarre diagnosis. The whole "rest of your life" maintenance requirements are hard for me to grasp, too, and I'm over twice your age. One piece of advice: be lucky you were diagnosed early because my doctors didn't figure it out until I pushed articles into their hands. I am covered head to toe in edema--40 pounds gained in about 4 weeks about a year and a half ago. My therapists who are treating me for it say it will be difficult to get rid of because it has been with me for so long. Perhaps after awhile your body will heal and you will never develop lymphedema because of wearing those socks? I hope so much that it is true for you. Best wishes, and know that you don't cry alone in frustration.

It sounds like you've been there a lot, and I'm sorry that your doctors didn't prepare you as well as they could have. It sounds like you're on top of things and being really proactive at addressing any side effects from the surgery.

Keep a journal of any symptoms you have. Write down any questions or concerns that come then definitely follow up with your doctor and surgeon. Wanted to pass along some samples of questions to ask which might help that conversation along.

For lymphedema, some basic questions to ask your doctor include:

What's the likeliest cause of this swelling?

Could there be another cause?

What tests do I need? Do these tests require special preparation?

Is the swelling temporary or long lasting?

What's the treatment for lymphedema?

Are there alternatives to the approach you're suggesting?

Are there things I should avoid with the arm that has had lymph

nodes removed (i.e., blood pressure, blood draws, shots)?

Are there medications to ease the swelling?

I have other health conditions. How can I best manage them together?

Do I need to restrict my diet or activities?

Is there anything else I can I do to avoid lymphedema?

If I get a cut, burn or insect bite on the affected arm, what should I do?

What is a compression sleeve? Should I wear one? Do I have to wear it at all times, even at night? What about on an airplane?

Do you have brochures or other printed material that I can take? What websites do you recommend?

A post recovery appointment is standard practice and you deserve to be informed about what comes next so please get in touch with your docs!