Meeting with Dr. Becker next Friday

Anonymous

Trisha- I hope you keep us posted on your progress. I am very interested in this procedure, too. Wishing you the best of luck with everything.

HappyTrisha

Kate, thanks!  I feel it's the right decision for me.  I had asked the doctor's office if they could email one of their patients whom I had met when I went to NY- she had extreme LE in both legs  and was having the surgery the Tuesday of that week - to see if she would be willing to correspond with me via email.  They called me today and gave me her phone number.  She said I could call her and she'd be happy to talk to me!  I will definitely let you know how things are with her, if she gives me permission to discuss her case, which I can't imagine why she wouldn't because I would never use her name or any other personally identifying details!  I'm so excited to talk to her.

Will keep you posted!  Going to NYC the end up August for my MRIs.

toomuch

Trisha - I've been lurking but wanted to pop in and wish you luck! I hope that the procedure is a huge success!

Nordy

Happy Trisha - well, now that you have made your decision, you go for it. I will keep my fingers and toes crossed for you and will send every bit of positive vibe I can across the states. We will be eagerly awaiting your results. Huge hugs!

natalie2610

Hi TopBilling - since I'm considering this procedure myself I would love to hear all about it first hand - pls keep us informed.....

trisha - the same....i will b meeting Dr Becker in November  ,she will be visiting in Tel Aviv Medical Center- Israel....till then i would  L O V E  to hear from people that have allready done Lnt...natalie

natalie2610

Hi TopBilling - since I'm considering this procedure myself I would love to hear all about it first hand - pls keep us informed.....

trisha - the same....i will b meeting Dr Becker in November  ,she will be visiting in Tel Aviv Medical Center- Israel....till then i would  L O V E  to hear from people that have allready done Lnt...natalie

kharimata

Hai,

when you check Dr. Becker + lymphedema on youtube, you can see that recently they uploaded a lot off short video's with interview with Dr. Becker about LNT. It sounds interesting....

Greetings! 

cookiegal

Happy Trisha...good luck doesn't even say it all. I hope you get the best freakin' results in history!

PinkHeart

Happy Trishia ~

All the best to you!  Please keep us informed.  I am more than likely having LN transfer in December at Stage 2 surgery so I'm very interested.

HappyTrisha

Gosh thanks all!!!  I am getting excited about it.  I've had babysitting duties for the past several days so haven't had a chance to check in.  I also haven't had a chance to call the person in Ohio, but I will as soon as my brother, s-i-l, and kids depart.

And if you lived through my saga about going to NYC and never got to have the MRI, wait until you hear the punchline!  My best friend said it's important to read signs.  Well this sign tells me it's safe to proceed.

Will write more as soon as the kids are down for bed.

XOX

Trisha

HappyTrisha

Okay, so I have a little break and here's the latest.  The Reader's Digest version about my MRI is that they were running late and I wasn't going to chance missing the last train, so I left NYC without having it.  My best friend said she took that as a sign that I probably should rethink the surgery (everything happens for a reason.)  I admit I look for signs also, and that coupled with someone here reporting that a friend of hers had gotten LE elsewhere after having surgery with my doctor, Julie Vasile, did make me more than a bit leary.  (My doc had told me that none of her patients had developed "referrant LE".)

(Information that becomes important to the entire chain of events: On the day that I visited with Drs. Vasile and Becker, Dr. Becker told Dr. Vasile to add a third area to the MRI - pelvis.  Because I have had so many gynecological surgeries, they wanted to be able to see the configuration of lymph nodes in my groin area.)

 ******************

When I called to make the appointment for next week's MRI, I asked how long it should take.  They told me two hours.  I asked how many areas they had scheduled and they said two.  I told them it should have been three and that I would call my doctor's office to see what the third one was (I had forgotten it was pelvis; my doctor's office informed me of that when I called them.)  I called back Weil Cornell Imaging and they said it would add another 45 minutes to the MRI.  Then they told me to be sure to fast (food and liquids) 4-6 hours before the MRI for the pelvis imaging.  Well, the day I went to Weil Cornell, I had the remainder of a chocolate chip cookie in my hand; because it was a very warm day in the City, I bought a soda to drink while I was waiting for my appointment.  THERE IS NO WAY I COULD HAVE HAD THE MRI EVEN IF THEY HAD BEEN RUNNING ON TIME BECAUSE I HAD NOT FASTED!  Dr. Becker added the pelvis imaging the day of the MRI, so nobody could have told me to fast!  So it all worked out the way it was supposed to.

With respect to the person who told me about her friend having LE problems after surgery with Drs. Vasile and Becker, all I can say is that I made every attempt in the world to have the friend get in touch with me and it never happened.  Third-hand information coming from a BCO poster with whom I have had no prior contact (no offense to the poster), and then absolutely no follow-up from the friend in question, has forced me to have to basically disregard the comment.  

And even if the person were to contact me at this point, I would consider it too much too little too late.  I will check it through with the doctor's office and if the doctor tells me it hasn't happened, I will believe it.  And if the doctor tells me it has happened, I will ask her what she thinks caused it, etc.  If the situation is not at all similar to mine, I certainly won't sweat it.

So as far as I'm concerned, all systems are go.  I feel entirely confident that I'm making the right decision.  ONWARD AND UPWARD!!!!  I will continue to keep you posted.  And thanks for all the positive feedback and good wishes.  You all are the best!

   

Katiejane

  Trisha,  It is your choice to disregard what ever you choose-the beauty of freedom.  If this friend of mine did not want to talk with you that was her choice.  Some people don't want to share their personal info with strangers so don't take this personally.  You need to do for yourself what is right for you no matter what she decided to do and I'm glad you are going ahead.  What I shared with you about her transfer results is fact- I have seen the results and I doubt you will hear this from your Docs.. Good luck to you!    katiejane

kharimata

Maybe this is relevant (allthough it is a very small research case...)

http://www.ncbi.nlm.nih.gov/pubmed/22878480 

Greetings! 

HappyTrisha

Katiejane, I PMd you and never heard back, other than for you to tell me your friend was out of town.  I had no idea she didn't want to correspond, and I certainly would have respected that of course.  In any event, I am in touch with my doctor and trust she will tell me the truth.

Thanks for the good wishes!  I will keep everyone posted.

HappyTrisha

Katiejane, in addition, the condition you describe your friend as having isn't at all the same as mine.  But I will be sure that they take the nodes from the opposite side, if there was any thought of all at taking them from the same side.

I think someone else may have mentioned this in an earlier post, but Dr. Becker is on Youtube discussing the procedure.  There are various clips, each discussing some aspect.  I have to be honest with you, I had a real hard time with the accent so couldn't understand much of what she was saying.  But the most impressive part to me is reading the accompanying blurb with each clip, stating that she has performed more than 4000 of these lymph node transfers!!!  That is simply amazing when you think about it.

kharimata

@ Happy Trisha ... if you go to youtube, and then click on the comment link from the video (talkabouthealth), you can get on this websites the same videos, but with subtitles and with comments, questions and answers from Dr. Becker. Maybe that can help...

HappyTrisha

For the sake of fairness, I want to report that I spoke to Dr. Vasile today and she told me that none of her patients or Dr. Beckers have developed arm LE. 

She did say that although it is rare, there have been patients who have developed chest LE when they've used the opposite axila as the donor site.  But she said that she has had no patient, nor has Dr. Becker, who has developed any arm LE. 

The only pause that would give me would be if they told me that the site they needed to use was my left axila.  Even though it's considered a rarity, I don't know that I would take the chance of it happening.  In fact, I'm pretty certain that I wouldn't.  But I won't know anything more until after I've had my MRI.  So I will definitely do that on Wednesday.  And then I will see from there. 

HappyTrisha

kharimata - thanks for the info!

HappyTrisha

Well I did it!  I took the train to the City and had my MRI.  I am very proud of myself because it was almost three hours long and I am clasically claustrophobic - and this isn't open MRI.  But between getting only three hours sleep before I had to take the train and taking 1 mg. of ativan and hour before the MRI, I was plenty tried/relaxed.  Also I found that putting a mask over my eyes before they even goo now It me anywhere near the MRI absoutely did the trick.  I never once looked around inside there.

 So now I wait for the results.

Will keep you all posted!  Tomorrow I'm going to call the women in Ohio who had LE in both of her legs.  She gave them permission to give me her phone number.  I will definitely report back to you, as long as it's okay with her.  Again, I won't give up her name so I don't think it should be a problem.

natalie2610

Happy Trisha....gled to read ur thoughts...tell me , this women ur goin to talk to in Ohio, who had LE in both her legs , today she doesnt have??? keep us posted...im dying to know how her LNT went and which Dr. preformed it....

HappyTrisha

nati - I haven't gotten to call her yet.  I will definitely do it by the end of the day.  I've just had a lot going on where I haven't been able to free the time.  I don't know anything about her LE status.  I'd be totally stunned if it was gone at this point.  Her LE was shocking to look at.  And both legs were the same.  I remember her mom saying they had no idea what caused it.

Will ask her all of those questions.  I'm also interested to hear about the nuts and bolts part of the process too - how long did the surgery take, was the recovery uncomfortable, etc. 

natalie2610

Cool Trisha....i wish i was in the room to hear ur conversation...i hope it will all be good news and will make u more relaxed and at ease about it .

keep us posted...best of luck

Anonymous

Trisha- Hope you were able to connect with that patient and are feeling good about the procedure.  

HappyTrisha

I left a message and am waiting for her to call me back.  Since she gave permission as well as her number, I know she's willing to talk.  I'm thinking she might have gone on vacation, what with Labor Day and the end of the summer and all!

I think I'll wait a few more days and if I haven't heard anything, I'll give her a call again.

HappyTrisha

Well a mystery has been solved!  The reason I never heard from the woman in question is that she's back in NY having surgery!  Since she had LE in both legs, I'm assuming they decided to do one side at a time.  In any event, I found that out when I emailed my doctor's office to make sure I had the phone number right.  What they told me is that the woman is currently in NY having more surgery but they gave me the email address of another one of their patients.  They said I might have met her when I went for my consult in NY, but I'm not sure I remember who she is.  They apparently got her approval for me to email her, so I will definitely have some information to report on the transfer surgery!

Anonymous

Trisha- That would definitely make sense that they would do each side in different surgeries.  I have bilateral LE in arms so guess I'd be looking at the same thing if that is the case.  Thanks for sharing all your information with us.  You are our trailblazer!

PinkHeart

I will be having lymph node transfer surgery December 14, and will be happy to share my experience at that time if you are interested.  I have right arm and chest wall/truncal lymphedema.  It is not severe, but persistent, and is a result of axillary lymph node dissection.  Feel free to PM me if you would like.

Anonymous

PinkHeart- It would be great to hear about your experiences as well.  Do you mind if I ask who is doing your surgery and where?  I have mostly left arm and truncal LE but a little in the right as well.  It's good to hear that some doctors are willing to do the LNT on less severe patients.  I don't have a lot of swelling but do have lots of pain.  My LE PT told me that those with less swelling actually have more pain.  Wishing you the best of luck with everything.

PinkHeart

As I wrote in previous post . . . on December 14, I will be having lymph node transfer along with Stage 2 of SGAP surgery with Dr. Kline (& Dr. Craigie and an oncologic surgeon assisting).  Surgery will be in Charleston, SC at East Cooper Hospital.

Here is a link (dated 18 months ago) with a nice explanation and discussion regarding lymph node transfer in their "Ask the Doctor" column on their website. 

There is mention about Dr. Becker in the main answer and in the comments as well.

http://breastreconstructionnetwork.com/what-are-my-options-if-i-develop-lymphedema/

HappyTrisha

Hi gang!  Well I finally got an email off to the patient of Dr. Vasile, and I understand that the other patient who just had surgery is back home, so I will attempt to give her a call tomorrow.  Hopefully I will have information for you in short order.

I'm getting really excited about having this done.  I definitely intend to wait until after the holidays and then I will see when Dr. Becker will be returning after that.

Kate and Natalie, I really hope you get to have this surgery done if that is what you want to do.  And that goes for everyone else here thinking about doing it.

I will feed back to you all as soon as possible.