I wasn't expecting this ...

carol57

tomboy, the tubes are permanent. Here are details, from the speaker's abstract.

METHODS: Study included 15 patients with lymphedema of upper limbs stage II and III, six after mastectomy with lymphadenectomy, nine after lumpectomy and sentinel node removal, all had radiotherapy. Lymphoscintigraphy showed lack of flow of tracer from fingerweb to axilla. Bandaging, sleeves and pneumatic compression did not decrease limb size. Three medical grade hydrophobic silicone perforated tubings o.d.3.2, i.d. 1.8 mm were implanted subcutaneously from hand dorsum to scapular region. Elastic sleeves grade II and two weeks of intermittent pneumatic compression were then applied. RESULTS: . After 14-21 days mean decrease in circumference in mid-forearm and arm was 12-30% stabilizing thereafter for 9-12 months with no more fluid in and around drains on ultrasound. Redundant lax skin folds developed in forearm and posterior arm. Shoulder swelling appeared after limb movements to disappear during night rest. On control lymphoscintigraphy tracer was seen in and around tubings. CONCLUSIONS: Silicone tubing implants in postmastectomy lymphedema is a low-invasive effective method for decompression of swollen tissues especially in early stages with more fluid than fibrosis.

I believe that Dr. Olsweski (not sure I spelled it right) is the only one to use this approach, and I don't recall any questions after his presentation, so I wonder how much interest the other surgeons have in pursuing this. The tubings would be considered an implant in the US, and that would require a lengthy device approval process, I think. Another thought is that 9-12 months is not long follow-up, which may be part of the reason Dr. O titled his presentation 'a novel approach.' Dr. O. seems to be quite forthcoming with information, so I imagine there will be continued follow up and reporting.

crystalphm

Marijen, My doctor made the same claim, and a few years later I learned he *claimed* his words to be truth because he never *believed* his patients got Lymphedema.

I had to go to a different doctor to be diagnosed and begin therapy, my doctor looked at my swollen arm and refused to believe it was LE.

Know your risks ahead of time. Lots of good advice here.

glennie19

My surgeon said I didn't have LE either. He "only took 6 nodes". My MO diagnosed me. There is no way to completely prevent it, but you can minimize your risks.

Tomboy

My stupid bitch ass surgeon blamed ME for lymphedema. I had been trying to tell her for weeks, that my arm felt heavy, and also that I couldn't see the bones or 'architecture' of my arm as well as my other arm. I am really good at details, and it was obvious to me. By the time she 'allowed' me to se the LE'ist, weeks later, there was NO WAY my arm was going to ever be as small as it was supposed to be. She wrote down in my note that I was non compliant, and yeah, she never touched me. Once surgery was over. Actually, I had developed a large seroma in my axilla, and a huge huge huge hematoma in my breast. It got drained once, by one of he co-horts, after she said she wanted to take me back to operating room for a 'washout', whatever THAT was, (she didn't bother explaining,) I did not want to go back into the operating room... 3 years later, there is still kind of a bruise there. Sorry for the harsh name calling of her, but the things that happened between her and I have colored all subsequent encounters with all docs at my place of treatment. Because I have been labeled 'difficult' and 'noncompliant'. I did EVERYTHING they asked me to do, altho I was nervous as a colt. Some surgeons actually do take the time to not hurt the other teensy things in your axilla that are so important. I bought a breast surgery text book about a year ago, and I believe if they just slow down a little, it is possible to do LESS harm. I wish you the very best. If you do get LE, and I hope you don't, it seems a horrorshow at the beginning, but you acclimate and learn how to deal with it. I do hope it is a matter of pride with your surgeon to be as careful as possible with you, and that no harm is done with your lymphatics. Oh yeah. Is there a way you can refuse lymph node removal, especially if you will be getting radiation or chemo? Look up Z11 trial.

Carol, thank you for that info! I am keeping my eyes on that man! It sounds like a french drain for the arm, a way of getting water to go where you want it to go, all underground. It's like a perforated tube they use at the outside foundation of walls and houses. Hmmm, that makes sense, and I want one NOW!!

Big hug to you, Marijen...

glennie19

Tomboy, terrible the way you were treated.

marijen

WOW. Tomboy thank you. Don't blame you for calling surgeon names, she deserves it. I have been reading all day on Axillary surgery and prevention of LE. I have many links saved up. i sent my surgeon a message about seven hours ago. It's 7pm now and I'm beginning to wonder if he's going to get back to me because I put him on the spot. Or he may call so no record. Or he may be fine with my questions and all is well. Surgery in two weeks. I'm really sorry for what everyone's been through here. It is a horror show. I've seen the pictures. Yes they put notes in their files. Did you ever try to make a change? I have read today that radiation is availabe for the armpit. They didn't offer that or alternative therapies like it says in the consent form I signed. I asked about pain and that has been skipped over. Of course everyone is different. If they just offer Tylenol i'll freak. I have spent my whole life trying to get help from doctors without much help. I feel like a lamb to the slaughter

Tomboy

I have a good primary doctor, no, I mean a GREAT primary care doctor. He is Armenian, and all the gals in his office are too, so, I get to learn a few words here and there. Important if you live near Glendale, California! Sometimes they call it little Armenia. A fun loving and smart tribe, family is very important to them. He is a doc who is impressed when I ask questions, it IS more like a partnership. I have thought about changing cancer treatment place, but I have to write a big thing explaining what and why I want some of my medical records changed, so that the next place I go, doesn't judge me harshly because of some things that happened between my current place, and me. A note at the top of my file! Then I will feel free to move. I feel like if I go somewhere else first, there will be no impetus for them to change things. There was some truly awful stuff that happened to me there. I actually felt like except for that stuff, It was all very interesting to me. But that surgeon wrecked me.

hugz4u

Don't forget you can fire your Doctors in a nice way. I said to my oncologist that I didn't "feel comfortable " with one of my surgeons. (She was so high and mighty with her opinions running over my feelings and concerns)
The oncologist frowned upon me wanting to switch and gave me some "work political " jargon saying that the idea wasn't looked upon very well by the medical profession but I insisted that I was uncomfortable and so he got me another excellent caring surgeon. I felt vindicated and I am sure the lousy good for nothing surgeon felt shot down. Her bed side manners were ever so rude.

marijen

hugz4u - good to know. Tomboy - surgeon might be very happy to change your file if it means you get cancer treatment elsewhere. I don't like my oncologist so sometime down the road I'm going to change to one at the radiologist office. Will claim too far to drive

marijen

The study, the AMAROS trial, was presented at the 2013 European Cancer Congress on Oct. 4, 2013. Read the abstract of "Axillary lymph node dissection versus axillary radiotherapy; A detailed analysis of morbidity. Results from the EORTC 10981-22023 AMAROS trial."

Was anyone offered radiation instead of surgery for positive axillary nodes?

AmyQ

Marijen,

I was offered radiation for positive axillary nodes but declined it. I had a trusted friend and colleague of my husband state he saw only a 1% possible benefit from radiation. Therefore I chose not to radiate.

Amy

kareenie

Very interesting discussion, ladies. BTW I know sarcasm does not come across in text, but to clarify my comment, I too doubt he would put it in writing. Drs can't guarantee anything. But if he is using a new published surgical technique that reduces your LE risk, that could be a good thing. Better for surgeons to recognize and try to minimize LE than just deny that axillary surgery causes LE.

kareenie

Marijen, so is your doctor doing the technique described in the Feldman LYMPHA study? Are you part of the study? Are you having lymphoscintigraphy and L-Dex done before your surgery? Sorry for all the questions but now I'm curious.

marijen

kareenie I am trying to get an answer. Nurse just sent a reply but it's incomplete so I sent it back with specifics. Will post here if I get a better answer

hugz4u

For all the studies I have been in they always get a consent form signed by you before they even begin the study.

marijen

• Kareenie, no I am not in a study and surgeon is off this week.