Lymph node transfer

lbrewer

no they dr Klein in Tampa is a different dr. He has since moved on to orlando. He practices with dr lee

ahdjdbcjdjdbkf

Yes. Dr. Richard Klein is my VLNT surgeon at Orlando Health Cancer Center.

ahdjdbcjdjdbkf

I'm now 15 days out from surgery still waiting to get confirmation on what my insurance is paying although my doctor said all was pre-approved. In my experience I never believe it unit I see what my insurance actually paid. My donor site leg is kind of "angry" the past couple of days. It is true that this is very major surgery for some of us if combined with reconstruction or reconstruction revision in my case, I'm doing my best to stay very positive about how this is all going to turn out. I hang on the words of PinkHeart and Maxine58 sharing their quality of life improvements; and pray my life is going to improve from here. I am not thrilled with the results of my reconstruction revision right now but I know it's too soon to judge until it "drops" down. I'm also living with another fear right now - which is low blood counts and concern over what is causing that. I see my Hematology Oncologist in May.

carol57

Maria, that's a brave, positive report, tempered with some understandable concern. Fingers crossed that you're just transitioning to the results you hoped for, both aesthetic and with the LE. And I sure hope the low blood counts are transitory and mean absolutely nothing. You're very kind to share your experience so candidly. That's a gift to everyone here. Thank you, and be well.

PinkHeart

Mariasnow,

Glad to hear your positive news! I hear you on the insurance -- I keep checking online and so relieved when changes from pending to paid! I have low counts, too, and never did chemo. Doc said okay though it still bugs me. Hope your donor sight gets happy again soon. My incision donor site is very faint from LNT 2.5 years ago. I have not worn a two piece swimsuit in 25 years and went for it and just bought one. My groin incision is hidden within bikini bottom. And my SGAP incisions too. The LNT incision in my armpit is visible but not ugly purple.

ahdjdbcjdjdbkf

I'm overjoyed to report my insurance came through and I saw the status switch to paid on Friday. Woohoo. My share is around 10% - which I can manage.

It's day to day right now seeing how things progress in the next couple of months. I am not happy with my reconstruction flap - that I got after my radiated skin broke down in 2013. One reconstructed nipple is totally misplaced right now. It made me feel WTF can't this stuff just come out good for me for once. But then I remember my NED status - for which I am extremely grateful.

ahdjdbcjdjdbkf

Updating to share I had surgery with Dr. k 3.5 weeks ago and I'm coming along well. Health insurance covered 90% 👍

Sassy01

Mariasnow, I am curious... How bad was your lymphedema prior to surgery? How many nodes taken? I had 11 in my left and have struggled for the last year. I've vowed to give myself another year to turn it around, but it's definitely hard..

ahdjdbcjdjdbkf

Hi Sassy, My first LD measurement in 2013 was 6% swollen. In the weeks prior to surgery I had two assessments which came in 18% and 20% swollen - so fairly advanced pretty quickly. I maintain a normal healthy weight, eat right per guidelines, kept my alcohol intake very slight, exercise, was careful to wear the right undergarments and clothing and do all I could. I exercised and did strength training as recommended. I was as determined as any human could be not to have it worsen as I am extremely vain! Unfortunately, it took off anyway.

hugz4u

Mariasnow, I really appreciate you giving your experiences. We don't do any type of lymph node surgery in Canada so I really can't consult anyone there. I was curious to know the full cost without insurance. If you would want to share this info it would be very interesting to us.

ahdjdbcjdjdbkf

I really think the costs vary widely from area to area. My procedure was also combined with a right LD recon revision so the costs would be up some. The non-group health price for my procedure with scans, surgery, hospital stay, and follow-up was around $100k. My insurance will end up paying around $20k at the group health rate. My co-pay is $1500. I'm sure someone without insurance coverage could negotiate the group health rate for herself by paying upfront or securing with a credit card. There is also all the wrapping and PT appointments before and after that add up too as well as wrapping supplies. One good thing about the UF Orlando Cancer Center is they offer a place to stay the nights before and after the hospital at about one third of a hotel cost and that includes meals and some patient assistance. I didn't use it but it is available and looks very nice.

ahdjdbcjdjdbkf

I had my first post-surgery measurements done today at the 4-week point. I'm WAY down from 18% and a 350 ml difference to 10% with 200 ml difference. Before I was always going up and not down!

pkeiles

Hi Mariansnow, any update or more measurements since your last posting? I find it so intriguing how everyone is so different in this healing process!!!

foreverhopeful

I posted this on Nordy's thread, but applies to this question as well!

Hi Nordy,

Other times when I have shared about my experience with VLNT, the discussion turns to all of the things that can go wrong. I hope I can just share my experience without being reminded of the risk I took:) I also know that with lymphedema there will always be a risk and I would rather not be reminded of it. I also know I prayed and prayed for God's wisdom about my decision, and He gave me peace in it. I do want to share my experience though, because I remember looking and looking for stories. I hope I can provide information for Nordy and others who are interested in the procedure.

I had my VLNT in February of 2012 at NOLA while having my reconstruction. I didn't know whether I would go through with it or not when I arrived, but had a lot of questions for the doctors. I knew that if I didn't do it then I might not elect to go through with another surgery. I also didn't know until I arrived that NOLA had changed from taking nodes from the DIEP procedure to taking them from the neck. I was not expecting a neck scar, but in the end I decided it was a fair trade for lymphedema. With God's strength I handled a stage IV diagnosis as best as I could, but developing lymphedema on my last day of radiation was about all I could handle. I know if you are reading this you understand the devastation as well, and my heart goes out to anyone who has a lymphedema diagnosis. My case was not severe, severe, (I'd say medium) and was oddly enough primarily in my hand. Dr. Trahan felt that the neck as the donor site did not carry a very large risk (and yes as I have been reminded there is a risk:)). I trusted him. Immediately, I noticed a difference after the surgery. My arm and hand were softer and the pain was gone. To this day I am doing well. I still wear my ring on my right hand, but I am free of my glove and sleeve during the day. I wear a Solaris at night and my garments when I fly. Although I just recently forgot it when I flew and was fine. I have had a few flare ups, but two to three massages have brought it back to my new normal. Also interesting to mention, is the therapist who gave me daily massages after my surgery saw many amazing results as well. Of course, I don't know how it is tracked down the road. Take myself for instance, I have never checked back in to document that all is well. I wish that someone (and maybe they are) would do a study to track that kind of data. That would make these kinds of decisions easier. Please let me know if you have any questions.

God bless you all!!!

Helensamia123

foreverhope... Thanks for sharing with us your experince.. I had a LNT two years ago to my leg and so far happy with resukts ... Not a cure but so much better... The leg is soft... No infections... And any swelling goes down overnight... Everyone has to make their own decision to have this surgery but i have never regreted going ahead with it... Thank you for helping other

Sassy01

Question to you ladies... Does the heat of the summer aggravate your lymph edema? It has been in the 100's here already for the last week. I noticed my arm blew up last weekend and has not subsided yet. I have had the swelling in check for about a month or so, but this flare up has me back to protecting my arm and tucking it against my chest. Also getting a sore feeling in the chest. Thinking it's time for a massage...

Nordy

Forever! Thank you, thank you for sharing your story!

carol57

Sassy, yes to your question about heat aggravating LE. I think that's a common experience. My LE is quite mild and I am not in compression all the time, but heat does a number on me and I need compression when it's causing a flare. One suggestion is to lightly mist your compression sleeve/gauntlet/glove with water, so evaporative cooling takes place. Not a soak--nobody recommends wearing a wet garment--but damp, just enough to cool things down.