Surgical treatment for lymphedema
I have had Stage 1 lymphedema in my upper arm and trunk since my double mastectomy and ALND in November 2016, but it's never progressed until now. Out of the blue a few weeks ago, my lower arm became swollen and my hand to a lesser degree. I'm now at Stage 2 and freaking out!
I have a fantastic PT who is going to work with me to treat this flare up. But in the meantime, I saw a surgeon at USC (Dr. Ketan Patel) who specializes in surgical treatments for lymphedema. I wasn't expecting to follow through with surgery, but I wanted to know my options.
But after meeting with him, I'm seriously considering it. What I'm probably looking at is a lymphovenous bypass. It's for earlier stage cases where the lymphatic vessels are still there and partially functioning but blocked (he described it as the 101 with traffic). What they'd do is go in at around 4 different places in the arm and connect lymph vessels to a nearby vein. Basically, they're rerouting the lymph flow in my arm from backed up lymphatic system into the cardiovascular system (which is where lymph fluid drains eventually anyway). It's considered "super microsurgery," because lymphatic vessels are 10 times smaller than veins.
It's a much less invasive procedure than a lymph node transfer, which is what they do for later-stage cases. But still, there are risks and it's not a cure—although it can make a huge difference in functioning and quality of life.
Am I nuts? Has anyone had this surgery for lymphedema? Either lymphovenous bypass or lymph node transfer? Was it successful? Are you glad you did it?
I would appreciate any and all input!
Comments
-
Wow! I'm exactly where you are, Mellee. I have stage one truncal lymphedema that has spread to my lower legs. I love to walk, but the more I walk, the worse it gets. As with my truncal lymphedema, I had to self diagnose. Most MOs are familiar with lymphedema in the arms, but nowhere else.
I met with Dr. Patel about a month ago. He and I talked about the lymphovenous bypass as well. But again, since it's in my trunk and legs, not my arms, he wanted me to have a venogram to rule out venous insufficiency before proceeding.
I'm having the venogram tomorrow morning at USC with Dr. McGee. He's a vascular surgeon who also works with the lymph system. He's pretty sure it's lymphedema, but wants to be certain before sending me back to Dr. Patel for potential surgery.
PM me if you want to talk more. I can let you know what the venogram is like in case you need one as well.
Trish
-
Good luck with the venogram!
I'm going to contact Dr. Patel's office tomorrow to ask if he can put me in touch with any former patients who have had the procedure. I'll let you know if that happens. Also, I forgot to ask for before-and-after pictures so I'll be following up about that, too. I really want to know more about what it's been like for women who had the surgery.
I'll send you my contact details so we can talk further. It would be nice to have someone to talk to about this who is going through the same thing!
-
I have been worked up for this surgery as well at Moffitt Cancer Center in Tampa, but don't want to do it until I can't control my bi-lat lymphedema with garments and a pump. Here is a thread with lots of info and BCO members who have had the surgery:
https://community.breastcancer.org/forum/64/topics/818062?page=1
-
Thanks SpecialK! That thread looks super helpful.
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