Lymphedema sucks - I'm going for the bypass

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rfbk21
rfbk21 Member Posts: 2
edited July 2016 in Lymphedema

My history with breast cancer, hormone receptor positive, goes back to 1997.  I had a lumpectomy on the right breast and radiation with 7 nodes removed.  I never had any trouble with swelling and other than using my left arm for blood tests and injections, I didn't even give lymphedema a thought.   Last August, 2015 I found out I had cancer again.  This time triple negative, same breast.  (don't tell the doctors but I still have a suspicion that the triple negative was a result of the radiation back in '97).  I had a mastectomy, 14 nodes removed, then 15 weeks of chemo.  I completed my chemo March 4 and one week later I noticed the swelling in my hand and I knew what it was.  THE DREADED LYMPHEDEMA!  &%$#

Even before I saw the lymphedema specialist at my local hospital, I was googling lymphedema and alternative treatments.  I asked him about lymph node transplant and he really dismissed it and we didn't discuss it further.  His answer didn't sit well with me so I did more research and found out about bypass.   It seems to work best on arms and for people who have not had symptoms for a long time.  All of my research led me to Dr. David Chang at the University of Chicago.  I live in the Metro Detroit area so it is only a five hour drive for me. I met with him four days ago and I am now scheduled for bypass surgery May 16.  Unless something changes during my pre op meeting, it's a go!  Dr. Change spent time with me and went over the two options.   I was considering DIEP reconstruction with lymph node transfer as well as the bypass surgery.  I decided on the bypass surgery because it has less down time.  I will schedule the reconstruction surgery next year.  Dr. Chang and his staff were very caring and I have no qualms about him doing to surgery.

I know not everyone thinks surgery is a good idea.  They might be afraid of complications or long term results.   As you all know, having lymphedema is a very depressing situation and I want to avail myself of every possible option to help me deal with it.  I know I will not be cured but if I can find some relief from daily bandaging and compression, I will be satisfied.  People might think I am rushing into surgery but I know me and me and bandaging do not work well together!

I will keep you updated on my progress and maybe my experience will give hope to others.  So I keep my fingers crossed and I will say a prayer for myself and Dr. Chang for a good surgery.



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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited April 2016

    I'm sure you have read the posts by those few that have had the surgery. I hope it goes perfectly for you, and please do keep us updated, this new info is very encouraging.



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  • wherria
    wherria Member Posts: 205
    edited April 2016

    rfbk,

    What did you mean when you wrote, "It seems to work best on arms and for people who have not had symptoms for a long time"?

    I had my first BMX in 2010, then the second last March. I've had lymphedema since the first BMX. I went to therapy for a long time, then only when I felt it was flaring up. I did the bandaging, compression sleeves, flexitouch pump, but about a year and a half ago, I started getting lazy. I also had gained a lot of weight from aromatase inhibitors, and now my last sleeve is too small, and I have not bothered to get a new one or to go back to my LE therapist. I guess you could say I gave up. This makes no kind of sense, but one time my LE therapist told me that my condition would improve if I lost weight, and I am very ashamed of my body, so now I say to myself, after I lose some weight, I'll go back to my therapist. Dumb, I know. It's very depressing.

    I have never considered lymph node transplant or bypass. Nor have I ever spoken to any doctors/therapists about them. Now, after reading your post, I'm wondering if surgery would be an option for me.

    Good luck with your surgery. I will look forward to hearing how it went.

    Whitney

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  • Gram55
    Gram55 Member Posts: 1
    edited April 2016

    Hello Whitney!

    I too have developed lymphedema..intense therapy for 8 weeks, bandaging, wrapping, now gloves and sleeves...it is so frustrating..I had a really good report from my scan last week but dealing now with this is getting hard! The home messages are hard as well...but each day I try to give it my best shot...I have never heard of this bypass surgery and quite frankly I'm tired of surgeries but would love to know how it goes if you decide on that....thank you for your time! God bless ...😄

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited April 2016

    Glad you posted rfbk21. Please do check in & let us follow along with your pre op tests, surgery & recovery.

    Many of us are very interested!


    Wherria- the bypass procedure is said to have a better outcome if the patient has not had lymphedema for a long time...I do not know what they consider as long or short though

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  • wherria
    wherria Member Posts: 205
    edited April 2016

    Thanks, Dejaboo. I'll look into that. Do you know if it matters how aggressive the LE is?


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  • rfbk21
    rfbk21 Member Posts: 2
    edited April 2016

    Original poster here - I wanted to get back to let everyone know that I had to postpone my surgery due to family matters. I still want the surgery but it might have to wait a few months. I did go back to the lymphedema Doctor I originally saw and he said my case was mild and he actually said I didn't have to wear a sleeve during the day and only bandage every other night. That was a big difference from what the therapists were telling me. They had me bandaging every night, sleeves and gloves every day. They scared the you know what out of me. Maybe their doom and gloom had me over the edge. You get such conflicting information, its hard to know what to believe. I'm thinking lymphedema is more of a trial and error thing. I don't know how I will react in the heat this summer. I really don't have any pain except for a mild sensation on the back of my hand that feels like a sunburn when my hand swells. But again, how much swelling is a lot of swelling? I have no basis for comparison. I will post when I have the surgery and let you know the outcome.

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  • jbokland
    jbokland Member Posts: 890
    edited May 2016

    Hi all

    There are only a handful of doc's offering this surgery. Fortunately, one of them is here in Orlando. I've been evaluated twice and I am scheduled. I wanted to wait until after summer to have it done.

    I had the lymphagram MRI of my arms last week (2 hours in the MRI!). That compares the fluid buildup in the affected arm vs non effected. I am waiting to find out my results.

    The rate of improvement/success is better on someone who has a milder form for a shorter time than someone who has a more advanced case for longer.

    I have had constant LD since my mastectomy 12/13. I only had 6 lymphnodes removed! I wear a sleeve daily and work with an OT to wrap my arm when it flaires. Driving 10 hours recently aggravated the crap out of it! I also had a rotator cuff repair on the same arm last year, so lots going on there!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited May 2016

    jbokland: I had no idea that there was such a thing as lymphagram MRI,, fascinating. When will you get your results? I only had 6 nodes removed too, and surgeon told me that there was no way I'd get LE with only 6 nodes removed. I'd like to wrap my sleeve around his neck!

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited May 2016

    rfbk21- sorry you had to postpone surgery.

    jbokland- I would love to follow along with you on your bypass

    Let us know what the test results reveal. Who is the Dr in FL?

    I wonder if the lymphagram MRI is the same as the SPY test - it kind of sounds the same.

    I had 1 node removed & I even argued with my BS that I was at risk for LE he said- NO, I still argued & took precautions on my own to make sure I did not get LE. But I got Truncal LE right away- after surgery. Arm LE 4 years latter.

    I did write this BS about 2 years ago - unfortunately he had retired & I could not locate him to resend my letter...I wanted to let him know I had LE & that he should not be telling any patient they are not at risk.

    Driving long distances- even 2-3 hrs bothers my arm...I have told friends & family that & they think I am making that up- It really bothers me that they do- why would I make it up. Grrrr

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  • glennie19
    glennie19 Member Posts: 6,398
    edited May 2016

    jbokland: I told my LE therapist today that you were having the surgery in the future. She wondered if your surgeon is connected with Shands & the University of FL, cuz they do them there, but there is someone connected with them who is doing them in Orlando.

    And I got an L-Dex test today. Shands is doing them on BC patients pre surgery now, so there is a baseline for later. I didn't have that option, but we have a "baseline" today, and we can see if it changes.

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  • jbokland
    jbokland Member Posts: 890
    edited May 2016

    Here, check out this video:

    https://lymphnodetransplant.wordpress.com/tag/orlando-health/

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  • glennie19
    glennie19 Member Posts: 6,398
    edited May 2016

    https://lymphnodetransplant.wordpress.com/tag/orlando-health/

    making it linkable...

    Edited to say: OK, my LE therapist mentioned Dr Klein,, so that's who you will be seeing?

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  • jbokland
    jbokland Member Posts: 890
    edited May 2016

    yes, he isprimary in the video.

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  • Lbower
    Lbower Member Posts: 2
    edited May 2016

    hi,i had diep with lymphnode tranfer / trasplant last year . My surgery was done at md anderson cancer ctr in houston tx. I have had nothing but problems since and my lymphedema in my arm and breast is no better than before . Also now i lymhedema in my abdemon due to the surgery. Ive had cellulitas 2 times and after my revision surgery i got ecoli was in the hospital a week. I know your surgeon has practiced at md anderson and is one of the top drs. That perform this surgery. Nobody told me i could get lymphedema in my abdomen after diep, wish i would have known. If you want to talk to someone whos gone through both surgeries please email me lbower64@hotmail.com. Good luc

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  • lou23
    lou23 Member Posts: 182
    edited June 2016

    Any up dates. I find this interesting as I have only just been diagnosed.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2016

    please give us an update. I have LE and use all the tools to keep swelling low but I would love to go without the horrible compression sleeve and glove.

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  • HALYARDS
    HALYARDS Member Posts: 1
    edited June 2016

    I too started swelling when completing my radiation last Feb 2015. Went through therapy, wrapping, etc. Now I have the pump, still wear compression sleeve but arm still hurts and doesn't go down. Let me know how your bypass is working. Thank you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2016

    Dear HALYARDS, Welcome to the community. We are sorry for your struggles with lymphedema but glad that you reached out here. We hope that you will find support and the information that you need to make the decisions that are right for you and that will ease the discomfort that accompanies lymphedema. Keep us posted. The Mods

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  • jbokland
    jbokland Member Posts: 890
    edited June 2016

    I am scheduled for August 24th. I still have question for my doc and want to speak to they patients that are greater than 1 year out.

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  • kriserts
    kriserts Member Posts: 224
    edited June 2016

    I watched the video that's linked here. It's about lymphnode transplant, not the bypass this group seems to be talking about. I'm very surprised that Dr. Klein said that it can "almost cure" lymphedema. That's a really strong statement that in my experience doctors won't make, and seems really irresponsible. The video seems more a promotional video for the center.

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  • AussieElaine
    AussieElaine Member Posts: 64
    edited July 2016

    HI all, I haven't posted in a while, a lot of family stuff going on. I just wanted you all to know that I had the bypass surgery in June last year and the results have been amazing even though I have stage three LE. I really hated myself and all I had to do to try and keep it under control so opted for the surgery. My L-dex reading before surgery was 30 and is now 4.7 so an amazing result. I no longer have to wear my sleeve every day but it is recommended to wear it for a year post surgery. I can now wear jewellery on the affected side and only wear my sleeve when I feel a bit of an ache which is maybe one day a week. Don't know how I'll go in the summer though. Swimming is great excercise and really helped my LE. Feel free to PM me if you need any other info and good luck.

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  • Frill
    Frill Member Posts: 311
    edited July 2016

    I'm hoping to get the thumbs up on this surgery, but my MO said (I'm at MD Anderson), that the doctors are very picky about who they will even consider doing the surgery on. Essentially don't get your hopes up, you're stuck with it, suck it up, cupcake. I won't get the referral until the last chemo in a couple of weeks. However if there's a risk of it affecting other areas.....just ugh. It sounds though that reconstruction would be a factor in that, too. Could I/we get a pass on these life altering decisions for awhile? The stress is really getting to me


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  • SusanRachel
    SusanRachel Member Posts: 68
    edited July 2016

    Tomorrow I'm having the MRI as the initial evaluation for surgery. I can't stand LE. It has robbed me of my life and joy. I am one of the people who has to wear the sleeve and glove 24/7/365.

    For a discussion of the surgical options,

    I wanted to go to Dr Chang but my insurance wouldn't let me, so I am going to a surgeon who is closer to me. My goal for the surgery is to be able to go 4-5 hours without the sleeve and glove so that I can run errands in 101* summer heat without wearing a jacket.

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  • Valz
    Valz Member Posts: 37
    edited July 2016

    I am so sorry to hear of the difficulties you are all going through. I just was diagnosed with lymphodema in my breast. I have metastatic cancer. I did some cursory research and was surprised to see it could affect your trunk. I have had a huge swollen belly for quite awhile now and am wondering if this is lymphedema.

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