See a therapist if I don't have Lymphedema?!

Anonymous · August 2018

I visited an oncology radiologist for the first time yesterday and we briefly discussed Lymphedema. Today I get a call from a therapist who wants to see me, educate me, take measurements and fit me for a bandage should I need it.

I don't know much about Lymphedema except that I don't have it. The doctor said I could get it any time in my life because I've had nodes removed. But do I really need to go to this educational and fitting session at this time? I've been going to so many cancer doctor appointments and for hospital tests that I can cry.

hugz4u · August 2018

viewfinder. Hooray for patient education. Slowly the doctors are getting it and not turning us loose after cancer treatment! It is absolutely necessary to go to this appointment. You can get le right after cancer treatment( if you had lymph nodes or rads )or 50 years from now.

Cool thing is if your educated in lymphedema and your therapist measures your arm as a baseline you can watch for signs of lymphedema when it presents itself. And even cooler is if you find it at low stage it's REVERSIBLE! What I would do if I had this chance on education is jump at it. Knowledge is power when it comes to lymphedema so you are very clever by inquiring by posting.

Your right, cancer treatment is sucky and we all want to move forward from it but lymphedema is NO PICNIC many saying they would take BC treatment all over rather than have lymphedema. So please....I beg you not to miss patient education appointment.

Just today we were posting about costs for lymphedema. NO PICNIC there either! So let’s try and prevent it. Thx for inquiring and your welcome to ask any questions. We are here to help!

Veeder14 · August 2018

I went to OT lymphedema specialist and didn't have it but she did do measurements and now there's a baseline measurements of my arm and leg. Plus I was measured for compression garments to use when flying and received those. She also gave me some techniques for a home program.

I am returning to the OT to check my arm measurements since my accident (fractured shoulder) and to see if I have breast Lymphedema not arm because it has never gone back to it's original size after surgery and radiation. Hopefully, I don't have it but it's worth checking.

Yes, I know what you mean about going to tons of appointments but I wouldn't skip your referral on this one.

Anonymous · August 2018

hugz4u, thank you SO MUCH for this much needed perspective. I called since my post and they said I didn't have to come in right away. I will go but hopefully can find a week without other doctor appointments. They said it's in the same office building as my radiology oncologist so maybe I can schedule something back to back.

I'm a little edgy right now. Yesterday was my first appointment with this oncologist. I was three hours in the office, mostly in the waiting room. The staff of my medical oncologist forgot to send my paperwork and it took some time for it to be transmitted. Oh, and, my sister was diagnosed with breast cancer about two weeks ago, just four months after my diagnosis. I suppose it's okay to have a pity party.

hugz4u · August 2018

viewfinder, lots on your plate. One day at a time. If it helps I was diagnosed stage three in 2004. Still here. Not sure about tomorrow but yup I’m kicking with an attitude.

Anonymous · August 2018

Thank you also for the encouragement, Veeder14. So much of this is new to me that I didn't understand the importance of the appointment and I certainly didn't understand that Lymphedema is a possibility throughout the rest of my life.

I am so sorry to hear about your accident and pray all goes well.

gb2115 · August 2018

Definitely not an emergency for you to get into see a therapist (since you don't have lymphedema), but definitely consider going at some point. The baseline measurements are good to get, and they'll discuss prevention with you. Mine fitted me for a sleeve to have just in case I get on an airplane (which I generally try to avoid, I hate flying). It was a big help, because a year plus a few months after lumpectomy I started developing truncal lymphedema on the side of my breast after an unfortunate dermatological biopsy (that ended up being nothing thank goodness). The derm went pretty deep and my body couldn't handle the healing process. I have to make bra modifications to keep the fluid from building up. To make a long story short, because I already had a lymphedema therapist who I was familiar and comfortable with, it was an easy (panicked) phone call to her to discuss. She helped me over the phone and we figured out a solution which has thankfully been working since January. I'm grateful to have someone to reach out to in a pinch.

Anonymous · August 2018

Thank you gb211, and others, for sharing your stories. Very helpful. I guess I was taken off guard because the doctors office never told me that they were setting up an appointment. But I will make an appointment within a few weeks.

ML1209 · September 2018

Viewfinder - I know it is all so overwhelming, but it is really important that they get baseline measurements prior to surgery and radiation. That way they know where you started and will know if there is an increase in measurements. It is true .... LE can occur years down the road. Yes, it stinks! I saw my LET once a week during radiation and now see her every 3 months. My fluid levels have measured high two times - so I wear the compression sleeve for 4 weeks and go back to remeasure. If it is caught in an early stage - you can reverse it. Count yourself fortunate that you have a doctor who realizes how important this is and is on top of it - many drs do not o this. Hugs and prayers - it is so much!!

BrooksideVT · September 2018

The lymphedema therapists at my hospital are on a mission to have every breast surgery patient referred to them. I did not have lymphedema, but I had cording and FEAR. Not only was I amazingly grateful for my two or three appointments with my therapist, but I also loved the exercise class they offered for breast cancer surgical er, graduates. I learned what I could and could not safely do, met other ladies going through the same emotional and physical trauma as I was, and, today, five years later, am still grateful and still measure my upper arms on a regular basis.

No, there's no need to shove yet another appointment into your life just this minute, but do remember that this one will make you feel more comfortable and confident.

Anonymous · September 2018

Does anyone wear a lymphedema medical alert?

gb2115 · September 2018

Yes, I do. So that if anything happens to me they hopefully won't use a BP cuff or a needle on my at-risk arm. I got one through Medic Alert and it's been great!

Staceybee · September 2018

It's great to read that some medical centers are being proactive about sending patients to LE therapists as a preventive measure. At the cancer center where I am being treated they only have a once a month seminar where they hand out a copy of a Powerpoint presentation. I really had to push to see a LE therapist in order to get measured for a compression sleeve for flying.

ksusan · September 2018

I couldn't get anyone to do a baseline measurement, which would provide some data. My surgeon said, "You won't get lymphedema." I haven't but many do.

I go once monthly (at this point--more earlier) for manual lymphatic drainage, and I do it myself at home as well. I have a massage therapist who consulted with the LANA therapist to be sure she understood what she could and shouldn't do as she works on my scar release. I wear sleeves on planes, at altitude, if I have swelling for a different reason, and if I'm doing heavy arm activity such as yard work or aerobics in a hot room (both of which I work up to rather than jumping into repetitive strain).

See a therapist if I don't have Lymphedema?!

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