I had Lymph node transplant surgery last weekend
Comments
-
mira- You're more than welcome to PM me. I'm sure your dr didn't seem concerned because the number is different in everyone. FYI the scoop out of your underarm will slowly fill in. Mine doesn't look much different than the other underarm now. You'd know if you had a level 3 because she would have continued after removing the underarm chunk and headed up under your clavicle (unless she didn't tell you?). Lymphedema is a real pain in the rear, so fingers crossed you won't have it!
-
Go Christine.
Even if some of us are skeptics we really really really hope your surgery is a success.
Any sign of a cure is a big reason to hope.
We are ROOTING for your arm to stay the hell shrunken!
-
Cookie, well said!!!
-
Mira--I don't think that lymphedema symptoms would appear within 10 days of the surgery. I know it would seem that it might be immediate, but it's slower and more subtle. Hopefully, you'll never see the signs!
I'd love to know more about the percentage of lymph nodes being more important than the actual number and if there are any thresholds for the percentages as far as prognosis.
-
hey all-- wanted to let you know that almost 8 weeks out of surgery my arm continues to improve-- down about 2 centimeters over all. in about a week I will move from bandage to sleeve.
-
Christine,
That is wonderful news. I hope the reduction in swelling continues. And thank you too for the updates.
Amy
-
Christine --wonderful. Thanks for keeping us updated. Marvelous!
-
Go Christine we are all rooting for you!!!!
-
Hooray! So glad to hear it!
-
I am new here, but a frequent Facebook user; I keep wanting to hit the Like button with each person's post on this thread, especially yours, Christine. Thank you so much. I am new to lymphodema, as my previous cancers resulted in lumpectomies, not the L side mod mastectomy I had in April. But like everything else we encounter here, it could be worse! Helps to share here.
-
hey all-- I saw my surgeon yesterday. My arm hasn't gotten smaller since last report but it hasn't gotten bigger either. I am transitioning to compression garments (rather then bandages) -- my surgeon thinks based on experience that it will take about a year for the new lymph nodes to fully kick in. Over the year I will be gradually reducing my use of compression. She says a 30 to 40% reduction is typical (fine with me!!) but sometimes people get more. If I could "graduate" to compression only at night for example I would be dancing a jig!
-
correction-- I had my arm measured again this AM by my PT and it is down ANOTHER centimeter-- so 3 in all!
-
YAY, Christine. Did you leave a message for your doc?
-
On my dream list...this surgery. Don't think I will find someone locally to do it, so just a wish. Thank you for your updates and so happy about your progress Christine.
Amy
-
Christine --- I am so happy to hear this for you! Hooray!
-
Christine, Great news! I will be having a LNT on the 25th of this month so I have been following your posts! Thank you so much for the updates and I wish you only the best!!! Please keep us all posted!
-
Christine -- did you happen to say who did your surgery? I would love to know --- you can PM me if you would like.
-
I had VLNT in March and my insurance paid for it. Nothing great to report yet but hoping it will kick-in down the line. I had the courage to take action due to a situation that was making my hate my life, known as Secondary Lymphedema.
-
Maria, sorry you haven't seen great results just yet but hoping one morning you wake up and find a huge improvement. Please keep us posted.
Amy
-
My Dr said it could take as long as a year before I see results-- the nodes need time to "take' and grow. Her other patients have seen the results she told me I could conservatively expect-- a 30 to 40% reduction. SO FAR-- my arm has reduced about 3 cm on average and the few flares I've had have reduced very quickly. My insurance also paid.
-
i am so thankful yo guys are willing to post. i have tried everything for over a year now. finally getting custom gloves sleeves after three different therapists and demanding that the four previous gloves and one sleeve that never fitted properly werent working. however i think i have permanent damage now. My hand and arm never reduce in size and i have lost dexteriry and range of motion in my hand beause my hand and fingers are swollen so bad. the lymphedema experts and certified fitters not so great. This has also had a huge negative time consuming impact on the quality of my life. As i sit here typing with one nondomnent hand beause i have wraps on beause my jovi pack is in getting altered for the third time because they ant seem to get it right. How is one suppose to work; its a full time job trying to manage it. i do everything i am supposed to do and nothing works. sorry for the rant.
-
did you have to wrap constantly 24/7 afterwards and if so for how long? i cant tolerate the wraps
-
Hi runnergirl2, Boy, I can feel your frustrations!! I had LNT surgery 1 week ago. Obviously, it's much too early to say if this will work for me or not but I wanted to tell you what my Doc follows for post-op wrappings. I must be wrapped 23/7 for the next 3 months and have LE massage 5 days a week for those 3 months!!! The surgery wasn't a big deal like my DIEP-very little discomfort and the drains(2) were pulled at 1 week. The biggest challenge for me is getting this wrapping on correctly! Yes it gets in the way and drives me a little crazy at times but if it helps, I'm willing to give it a shot! I know this isn't what you wanted to hear but it is what it is. I wish you the best!! katiejane
-
Oh my, I did not know that transplant of nodes was even available? Does anyone know how long after having the cancer can a person have that surgery?
-
Bumping for KWKWKW68 -- can anyone answer her question about if there is a timeframe that is ideal for this type of surgery?
Thanks!
-
I think probably like any surgery -- there is a time period for healing. I know after rads they like somewhere between 3-6 months or longer. I am having this surgery this week. I am petrified, but my arm has progressed SO much despite the fact that I am a lymphedema trained therapist and have been wrapping nightly since it all started as well as going through several bouts of CDT and pretty much 23 hours a day 365 days a year compression. A reaction to MRI contrast finally tipped my arm over the edge where I can no longer get my hand to reduce. SO... after 4 years of fighting insurance, I finally got it approved and narrowed down to two docs. In-network and $$ tipped my choice in docs, but I think they are equally talented and am happy to be either of their patients. KWKWKW68 --- Check with your oncologist and surgeon and see how long they would want you to heal before another procedure. BUT in the meantime --- you should start researching docs. There really are only about a dozen here in the US that are doing this surgery consistently, and you are going to want someone with experience. I am not always on here --- but these ladies are really great resources. Good luck to you.
-
Nordy! That's huge! I know you have wrestled with the surgery option for a long time, and you are so well qualified to weigh risks and benefits...even so, what a hard thought process, and you must feel relieved you reached a decision, despite being petrified. Hugs and more hugs to you during the week to come, and I know everyone in this forum will be looking forward to hearing from you when you are up to dropping in with an update, whether sooner or later.
-
Thank you, Carol. Yes, it has been a hard decision and not one that I have taken lightly. But I had the fortunate (or maybe it was unfortunate?!) opportunity to see first hand what my arm looks like with the SPY technology and there is not even a single working lymph vessel anymore... just a bunch of dermal back flow. To just look at my arm --- about stage 2 lymphedema... on Spy --- where they have 4 stages -- I am at a stage 4. And all these years I had a couple of docs telling me my arm wasn't bad enough to warrant surgery. Puhhhhhleasssse. All I would have had to do was leave my sleeve off for 24-48 hours to let it fill. But I wasn't about to do that, and I was nervous for surgery anyway. Plus with compression, it had stayed fairly stable... or so I thought. Well, it just goes to show that our traditional means of staging lymphedema is lacking. There IS a place for lymphoscintigraphy and SPY studies in the world of lymphedema. Circumferential measurements and skin integrity alone just do not cut it. Of course I will keep you all posted when I am out and coherent.
-
well, I am ibn the other side of muy VLNT on Thursday. Nodes transferred from left groin to right forearm . Forearm is very, very sore.My roommate is obnoxious and snores, but otherwise I am doing okay. Please know that I did not make this, decision lightly and that I probably would have kept holding off if my arm had just remained stable.i will keep you posted on my progress as I can.
-
Nordy, I'm in your pocket for sure that you have a good outcome from your surgery. I know how long it has taken for you to get there. You are correct, the scans really tell the story. Without the scan I would never have known that a new lymphatic pathway had formed deep in my upper arm all the way to the lymph nodes in my neck. I am doing OK my arm seems to be improving slowly but surely. Course it's coming into summer here which is a bit concerning for me. Have a funny story to tell about my custom made sleeve and glove. I trail all the way to the hospital 80 miles round trip. PT opened the package with the glove and the index finger was about 2 inches longer than the other fingers. I said who is that supposed to fit ET? Mind you I did feel a bit like an alien as the week before I fainted and fell of the vibration platform, fell flat on my face had the biggest most purple black eye and broke 3 front teeth, luckily teeth were fixed or I wouldn't even have ventured out haha. Still waiting on glove even though I have no lymphoedema in my hand . Go figure. Anyway good luck and please let us know how you are. HUGS (((())))
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team