MIDDLE-AGED WOMEN 40-60ish

Janis, So glad you are finally going for the LE evaluation.  It is best the let the experts decide if you need therapy or not.  What do ROs know anyway???  Keep us posted.

Welcome Essa - You have found a great group of ladies.  Sorry we have to meet this way - so much good information and support here. 

Happy that you have a better rapport with your new BS Dianarose. Sorry your still confused with the new info.



In defense of my RO -she is very proactive with regards to LE. I didn't have any nodes removed but she is radiating them on my right side. Because of that she did some general baseline measurements and sent me to a LE therapist before I started rads to get some basic LE info, get a more precise baseline measurement and get fitted for a sleeve. I wore it for a week before rads started (supposed to be two but started faster than that) all through treatment and am supposed to continue for three weeks after. Then I'm supposed to see the LE therapist again for follow up.



Reading what everyone else goes through on here really makes me appreciate my team.

Essa welcome to the group

Reese so glad your RO is proactive.  I never even heard of LE until on got on this site.  Good thing I have had no problems.  Even though I realize I could later on.  At least I am aware of it now.

Janis so glad you feel better and are going for the Eval

Dianarose-confused????????????? I just hate that feeling

Reesie, it sounds like you have a great team.

SO glad you are getting assessed finally Janis!!!

30% of breast cancer patients who had surgery involving lymph nodes get LE. It can present up to 20 years later. Remember, lymph nodes are taken out with breast tissue during a lumpectomy and/or mastecomy. That breaks the lymph chain. This is serious shit people!!!! An RO is NOT the member of our team that should be deciding what we do!! My surgeon doesn't "believe" in LE. Yet I got truncal LE. That's another point. My arm measurements haven't changed, yet I have LE in my torso. So there! Another thing to worry about! I should wear a torso compression but I get SO hot now I cannot imagine having something holding in my chest!!!

I imagine "vasculitis" was part of his long word, too....

Of course Meece!!! My PT only saw me three times and then told me I was on my own. She taught me to do the treatment myself, but if I didn't even need the treatment, then she would have assessed me and told me I was okay. They are far too booked to waste their time with someone who doesn't need them. They work with measurements so if nothing changes, they haven't done their work!! Are you thinking of getting assessed?

Thanks Barbe, I was working from the Greek. Never know if English uses the Greek or the Latin for a given medical term. Inflamed veins really suck, btw. Mine flared up again today and I wonder if they will ever get themselves healed again. The docs are supremely uninterested in this, to them, minor problem.

Janis Im glad to see you are listening to the LE therapist.  I was lucky and my BS (just like yours) believes it to be something we need to be on the look out for.  All the stuff I have read about it says (just as barb put it) can come many years later.  Your RO sounds like my PS in the fact that they think that if it hasnt happened by now, that it wasnt gonna happen.  That I wasnt crazy about so if it did rear its ugly head, I would seek a different option as well.  Good Luck!

Sharon...thanks.  The redness is not bad, and I was already treated with antibiotics for what my RO originally thought was cellulitis.  Actually again his Nurse Practicioner diagnosed that.  She rechecked a week later, no difference, hence the new meds for the vascular problem.  My sister is an RN in another state.  She has said that redness is one of the symptoms of LE.  I am sure the therapist I see Friday will know for sure.  She is a licensed LE therapist so that is good.

Welcome to all the newbies! I've been awol....the anastrozole is killing me. About week 6 the side effects really starting kicking in and by last Saturday (week 7) I was absolutely miserable. I had at least 25 hot flashes that day and ached all over (every joint and the muscles in my legs and arms). My right hand was so weak and sore that I couldn't open the cap on the orange juice or turn on the faucet. I kept moving since that's what everyone says you should do but I was absolutely exhausted by the end of the day and my husband had to help me up from the couch in the evening and I had to take the stairs one at a time. I'm just wondering how bad it could get.

I've given myself a few days break from it and I'm feeling much better today. I keep wondering if I actually need to do this to myself. I looked at the cancermath site (which I know is out of date) but it says that if I had the ooph (which I did in December), with my pathology, there would be no benefit to taking the tamoxifen so I'm wondering if it's the same with the anastrozole. Guess I need to have another talk with my MO....

Yes, the LE PT experts are the ones that recommend the garments. My LE doesn't get red, but I get the mound of built up fluid and it hurts! Feels like I'm lying on a tennis ball. Then I know I have to do my GENTLE patting motions to get the fluid moving on. My DH does my back area, but I do the neck, chest and arms.

It wasn't recommended that I get a torso compression garment but she offered the sleeve one. I said wouldn't I need the hand covering too (gauntlet?) and she said yep. I said too much drama for what is right now only on my back. I'm lucky!! I felt if I compressed my arms prophylactically (sp?) that it might force more fluid into my torso. So I haven't used a gauntlet and have no intention of doing so. My arms do get heavy at times, and I find that I have to use 2 arms (one holding the other) to do things (think moving hangers on a rack), but it doesn't happen all the time.

OK, I am not a doc, but from the drugs he is giving you it seems that he thinks you have fibrotic lesions and/or that your veins are not working properly. Getting collapsed, fibrotic veins is common in connection with cancer treatment and contributes to LE problems. I would think, but ask, that the only thing that would counter-indicate LE therapy is if you have an actual blood clot somewhere, but it doesn't sound like it.

My RO told me I had truncal LE from the rads but that there was no treatment.  My Med Onc took one look, put me on gabapentin for the pain and sent me to the LE therapists who started massage, put me in a compression bra and measured me for a sleeve to wear when doeing heavy stuff so it wouldn't develop into arm LE.  So my experience is that ROs are idiots and totally ignorant about truncal LE.  The vascular problems that radiation causes cannot be cured or even well treated most of the time, so IMNSHO RO's delay sending women out for proper therapy for truncal LE to hide thier ignorance and so we won't find out that it's a known side effect of rads that they choose not to tell us about ahead of time.  But then, that's just my opinion and I'm well known for being totally against rads after my experience.