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Topic: LVA surgery - bypass surgery - Have you done it?

Forum: Lymphedema —

Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Feb 14, 2014 08:48PM

mjsgumbas wrote:

I recently traveled to the University of Iowa to meet with Dr. Wei Chen a supermirosurgeon/plastic surgeon.  I was referred to him by my PS.  I had the Indocyanine Green Lymphography done and was amazed at what was seen both in my healthy arm and diseased arm.  I was diagnosed under the Campisi Staging at Stage 2 as my LE is, right now, centralized in my upper arm.  Although most of my swelling is in my hand, the Stardust and Splash patterns are confined to the area of my tricept.

Dr. Chen believes I would be an excellent candidate for LVA, as my symptoms have only been around about 6 months.  He believes better results come with early intervention.  I wear compression sleeves (often) and a glove almost all of my waking moments.  I do massage also.  It hasn't progressed, but it isn't relieved with any of the treatments.

In our lengthy 2 days clinic with Dr. Chen he explained in detail how the surgery is performed, showed us actual video and covered his results since he began performing this procedure.  His statistics have been: no patients symptoms worsened, 90% saw some form of relief and 10% of the 90% were cured.  There will still be therapy and garments for some time post-op, but the intent is to ease the necessity of these daily.

An 8 hr surgery - although minimally invasive - seems overwhelming.  But if they don't try - they won't know!  The surgery only effects the skin and fat layer - never reaches muscle, so the recovery/pain is nominal.

These surgeries have been performed in Asian countries for decades!!!!!!!!  With favorable results! 

I've tried to seach thru these threads to find someone who has had the procedure done and what the results were.  So, please let me know if you had success!!!!


 

Dx 4/1/2013, IDC, Right, 2cm, Stage IIB, Grade 2, 1/24 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Hormonal Therapy 5/29/2013 Surgery 11/7/2013 Reconstruction (right) Surgery 1/31/2014 Prophylactic ovary removal Hormonal Therapy 2/27/2015 Arimidex (anastrozole)
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Nov 25, 2020 12:14PM MandaLynn wrote:

Hi Linda,

How did your ICG go? Our you back home now? Did BCBS end up covering it?

I am scheduled for my ICG on Dec 21st and for either the LVA or Lymph vessel surgery on Dec 30th.

Also, general question... can anyone recommend a full arm elevation wedge for after the surgery?

Thanks,

Amanda

(ps I don't check this thread often enough, I will try to do better)

Amanda Dx 10/20/2008, ILC, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2-
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Nov 29, 2020 05:32PM Linda2119 wrote:

Hi, Amanda,

The ICG went well - stung a bit, but nothing to worry about. The results were shocking. My lymphedema has progressed far more than I expected. I have solid predominant lymphedema, so I am not a candidate for LVA or lymph vessel transfer. He is recommending the flying squirrel liposuction, with possible lymph vessel transfer in the future. The advantage is that you get immediate results, the disadvantage is the painful recovery and one arm being smaller than the other.

It's a lot to think about.

Good luck with yours. Will you stay in Cleveland that whole time?

Linda

Dx 10/5/2017, DCIS/IDC, Left, 2cm, Stage IIIC, Grade 2, 15/24 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 10/19/2017 Arimidex (anastrozole), Faslodex (fulvestrant) Surgery 3/20/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary; Reconstruction (left) Chemotherapy 4/18/2018 AC + T (Taxol) Surgery 9/9/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy 10/25/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 12/6/2018 Arimidex (anastrozole) Targeted Therapy 12/20/2018 Verzenio
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Dec 7, 2020 05:12PM MandaLynn wrote:

Oh, that 's surprising! I'm glad it went well, though (not much pain, no complications). I haven't read much about the flying squirrel, so I'm not sure what you mean by (one arm smaller than the other). But, I guess the trade off is worth it to not have swelling.

I just got notified that it's not possible for me to do the lymph vessel transfer as it's an in patient surgery and those have been cancelled because of covid. I still think I'm going to travel for my ICG and if it looks like he'd recommend the LVA, then I'd do it.

Your situation makes me realize that until I get the ICG, I really don't know anything about my situation.

How bad is your swelling?

Amanda Dx 10/20/2008, ILC, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2-
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Dec 14, 2020 08:02PM Linda2119 wrote:

My swelling isn't bad - it is just firm to the touch, not as much pitting as I used to get. The flying squirrel is basically liposuction with a skin tuck.

Good luck to you - keep me posted.

Dx 10/5/2017, DCIS/IDC, Left, 2cm, Stage IIIC, Grade 2, 15/24 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 10/19/2017 Arimidex (anastrozole), Faslodex (fulvestrant) Surgery 3/20/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary; Reconstruction (left) Chemotherapy 4/18/2018 AC + T (Taxol) Surgery 9/9/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy 10/25/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 12/6/2018 Arimidex (anastrozole) Targeted Therapy 12/20/2018 Verzenio
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Dec 28, 2020 10:26PM MandaLynn wrote:

hi Linda,

I just replied in your other thread. He says I’m stage III. but I could do the LVA but flying squirrel better.

Going to decide tomorrow.

Amanda

Amanda Dx 10/20/2008, ILC, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2-
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Feb 17, 2021 08:06PM - edited Feb 17, 2021 08:21PM by mammalou

Can anyone tell me when they do a bypass vs. alymph node transplant. I've just finished diagnostic testing and am going for a consult in March. I'm just wondering what determines which surgery they reccommend

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Feb 24, 2021 01:25PM MandaLynn wrote:

Hi Mammalou,

I'm not the most informed patient on this thread believe me, but I think that they only do LVA if you are an early stage (less than Stage 2). Also, I think that there's a trend away from doing lymph node transfer. I am seeing Dr Chen out of Cleveland. I am stage 3 (which I didn't realize). He is going to do a liposuction procedure (surgery) next week to reduce the arm volume and fibrotic tissue. He believes (without any promises) that that will allow my arm to go back to a stage 1 and then I will have the LVA. But, my arm hasn't followed any standard expectation so I'm trying to remain flexible. My goal is to not have to wear my arm sleeve all day. But, I think I'm starting to realize that even with all these surgeries, I am always going to have to take care of my arm in some fashion..... sigh. I have a pneumatic pump and lately I've been very bad at it.

Amanda

Amanda Dx 10/20/2008, ILC, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2-
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Feb 26, 2021 07:19PM BlueGirlRedState wrote:

MandaLynn - do you know what the procedure is called that you described using lyposuction to get rid of fluid and fibrotic tissue? I have active cancer and would probably told that it would come right back......... But the loss in range of motion is very depressing. I doubt if I could find the procedure here

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Mar 3, 2021 03:27PM - edited Mar 3, 2021 03:28PM by amanda6

im curious about these procedures. I have left arm lymphedema, I think a stage 2. For the past 5 months I've been struggling with nerve pain, excruciating at times, in that arm - armpit to wrist, occasionally hand involvement. My wrist is so swollen - not lymphadema I believe, that I can't wear my compression sleeve. I've been trying to hold it steady using a flexitouch & night sleeve, but it's kind of a losing battle. Everyone I've seen - several doctors, le therapist, physical therapist says when the swelling goes down the pain will dissipate - but I just can't get it down. I wonder if this is an option for me...and does anyone know of a place that does it in coastal New England ??

Dx 2/2010, Left, 2cm, Stage IIIA, 4/10 nodes, ER+, HER2- Radiation Therapy 8/29/2010 Breast, Lymph nodes Hormonal Therapy Femara (letrozole) Surgery Lumpectomy; Lymph node removal Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 25, 2021 11:56PM MandaLynn wrote:

Hi BlueGirlRed,

I am not on breastcancer.org very regularly and have been busy with my surgery on March 25th. My lipo surgery was called the flying squirrel technique. It's liposuction with a skin excision. There's another thread here (Liposuction - flying squirrel) where I talk about my experience.

I believe the liposuction procedure has been around for years (the part that was new was the skin excision so your arms don't end up look like empty sacks like a "flying Squirrel").

Amanda

Amanda Dx 10/20/2008, ILC, 3cm, Stage IIIA, Grade 2, 4/17 nodes, ER+/PR+, HER2-
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May 27, 2021 05:51PM BlueGirlRedState wrote:

amanda - I hope you are able to get the swelling down. I also experienced severe pain at night in the affected forearm even though my entire arm was swollen, and even the hand swelled up once. Ice seem to help, but not always. Never took up the offer for Rx pain killers, because the pain attacks did not happen on a regular basis and only seemed to happen at night. Swelling is way down now and I have not experienced that pain for 2 months. The lymphedema was from a new tumor (nodes had been removed on the other side). Radiation seems to have helped with the swelling, but I doubt if it killed the tumor. Hopefully it is more than a temporary reprieve. Hoping to get range-of-motion back. Hurts to exercise the the arm because of the radiation burns, especially in the axilla.

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May 27, 2021 06:01PM amanda6 wrote:

Im so glad I happened to see this bluegirl, I don't often look at the lymphedema forum anymore. They think the swelling & pain in my arm is caused by tumors in the area & are setting me up for radiation. I really hope it works out ! It is heartening to hear that it helped with your swelling. So sorry about the radiation burns though. Have you been seeing a lymphadema therapist? Wishing you well :)!

Dx 2/2010, Left, 2cm, Stage IIIA, 4/10 nodes, ER+, HER2- Radiation Therapy 8/29/2010 Breast, Lymph nodes Hormonal Therapy Femara (letrozole) Surgery Lumpectomy; Lymph node removal Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 14, 2021 10:49AM KaraInLA wrote:

I just won the appeal with my insurance company to have the LVA surgery and am working to get it scheduled. I am trying to get information on the recovery process. Can anybody share what it was like? How quickly you returned to work? How did showering/cooking/driving/knitting go? Were you wrapped 24/7 for 4 weeks? any and all information would be appreciated. Word is that my surgeon is a great surgeon, but is not a great communicator, so I'm taking everything he says with a grain of salt.

Dx 3/2007, IDC, Left, Stage IIB, 0/3 nodes, ER+, HER2- Dx 6/2020, IDC, Left, 2cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/21/2020 Mastectomy: Left; Reconstruction (left): Stacked/hybrid GAP flap Hormonal Therapy
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Jul 14, 2021 11:21AM melalymphatl wrote:

Congratulations! My LVA was on my leg so a little different. My surgery was at the Cleveland Clinic on a Tue just over a year ago. It was wrapped when I left the hospital and I had to remove and rewrap the outer layer twice a day but not touch the 2 inner layers. I was able to walk on it immediately but was only allowed to be on it a max of 10 min per hour and had to keep it elevated the rest of the time for the 4 weeks. I was not able to shower until I returned to the clinic on Fri and Dr Chen removed the wrapping. The results were amazing in just 3 days. After he removed the wrapping I had to wrap it with the outer wrap every morning and every evening for the full 4 weeks. I also used gauze and bacitracin on the incisions until they stopped weeping under the wrap. I shower in the evening. So I would take it off and shower and then rewrap to go to bed. I did not drive until 3 weeks when I had to see the lymphedema therapist. That's when Dr Chen wanted me to see her to be measured and set up a schedule to start after having the stitches removed at 4 weeks. I worked from home (hotel) the day after surgery. Since I had to keep my leg elevated I couldn't really do that at the office, so I worked from home the entire 4 weeks until I had the stitches removed. Since I could only be on it 10 min an hour, I cooked in stages throughout the day in order to have dinner ready when my husband got home. I had very little pain. Dr Chen sent me home from the hospital with a bottle of Tylenol and Advil and instructions to alternate every 3 hours and it kept the discomfort under control. I hope I covered everything. If not, please ask. Again, congratulations! I'm very glad it's approved. Let us know when you are scheduled.

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Jul 14, 2021 11:36AM KaraInLA wrote:

Thank you so much for all in information! I guess I should have said that I'm having the surgery on my left arm...luckily I'm right handed. I have been able to control much of the swelling, but have had cellulitis 3 times since January, and ended up in the hospital one of those times.

I am just back to work on site after working telehealth since the beginning of the pandemic, I am so frustrated that I may have to go back to telehealth. Husband is pushing me to arrange to work from home, but I'm trying to see a way to get to my office...although I'm also hesitant about any infections and I work is a rough area in a rough situation and many of my clients are not vaccinated

Dx 3/2007, IDC, Left, Stage IIB, 0/3 nodes, ER+, HER2- Dx 6/2020, IDC, Left, 2cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/21/2020 Mastectomy: Left; Reconstruction (left): Stacked/hybrid GAP flap Hormonal Therapy
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Jul 14, 2021 11:52AM melalymphatl wrote:

Cellulitis is no joke. I had 6 in the first year after my melanoma surgery and was very lucky to find an awesome caring infectious disease doctor who has had me on a daily antibiotic ever since to prevent them. I just stopped taking it 6 weeks ago. So I'm still crossing my fingers that they don't return. But that was one of the main reasons I had the surgery was to hopefully put an end to them. And COVID is nothing to mess with either. I had my surgery and recovery and therapy when there was no vaccine. But if you have the option to work from home, I would definitely take that option. My husband and I own our business so I'm always pushed to be here but I knew as soon as I had the surgery that trying to be at the office every day wasn't really a good idea. I made the decision that was best for me and my health. And I have to say the recovery went very well for me. I wish I had taken the time when I had the cancer surgery. You have the rest of your life to work. You only have this small window for these little vessels to heal.

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Jul 14, 2021 06:36PM KaraInLA wrote:

I agree about the cellulitis. My ID doctor has discussed daily antibiotics, but I don’t do so well on them, so QOL is compromised…my hope is that the surgery will reduce or eliminate the infections…and that’s what won my appeal.


I’m considering all options for work, including just retiring, but I do love what I do…although I also have many interests that I am anxious to expand in retirement…

I’m glad your recovery was relatively easy. It’s so good to hear about the positives! And, again, thank you for sharing.



Dx 3/2007, IDC, Left, Stage IIB, 0/3 nodes, ER+, HER2- Dx 6/2020, IDC, Left, 2cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/21/2020 Mastectomy: Left; Reconstruction (left): Stacked/hybrid GAP flap Hormonal Therapy
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Aug 14, 2021 11:49AM Dtodd wrote:

How are you doing by now? Considering this surgery in Cleveland with Dr Chen. Has it been overall successful

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Aug 16, 2021 10:35AM melalymphatl wrote:

KaralnLA - Have you had your surgery yet?

Dtodd - Dr Chen did my surgery 14 months ago and I would call it a huge success. I am considering doing it a second time. I have some swelling around my ankle that is almost unnoticable with compression stocking daily. But he had said I should be able to go without at least 5 days a week. If I skip one day my ankle is noticably swollen. But that being said it is still hands down 400% better than prior to the surgery. Now I'm just hoping for perfect and he offered to do it a second time when I saw him in April for a follow up. At the time I thought no since I was just so happy at so much improvement. But if I could actually be cured, that would be truly awesome.


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Aug 25, 2021 11:25PM LW422 wrote:

I'll just add my story to this thread. I had the lymphovenous bypass in conjunction with a single mastectomy on Monday. The plastic surgeon was able to find and attach FOUR good channels and I'm so psyched about it. I am hopeful that this preventative step will help prevent me from ever developing lymphedema. I understand that this has become a standard at MD Anderson within the past 6 months, so there is no real historical data at this point. I also signed up to participate in a study so they will be following my progress.

Good luck to all who have access to this surgery!

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 26, 2021 05:07AM Rah2464 wrote:

Wow that is wonderful to hear! I had four nodes removed and yup, lymphedema. Although mild at this point so there is that.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/19/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 28, 2021 07:32PM KaraInLA wrote:

melalymphatl, I just had my surgery a week ago…2 ties, so far they say I'm healing well. It's been relatively easy, except I find the whole thing so ANNOYING…especially since they say no knitting…I put a bunch of my favorite meals in the freezer before surgery and Husband is do everything, but having things done for me is not my strength…but I'm starting to see the end of the tunnel. I did the surgery because of recurrent infections, so I won't know for a bit if this was the solution.


just general info…I had surgery on a Wednesday and took the rest of that week off. I've been working from home since. I was hoping to go to my office on Monday, but I work in a relatively high risk job, with some (small) physical risk. It just doesn't seem like a good idea to go back if I don't feel I can defend myself if the need arises…Husband is pushing me to retire and the cancer recurrence and Covid may finally get me there, but I'm not sure.

Each step comes with its own questions and challenges…


if anyone is in California and wants info on challenging an insurance denial, feel free to contact me. I had great legal help and my appeal was quick and easy (for me, at least). I'll share what I can (Husband did it all, with a little help from another lawyer in his office who went through denials when his wife had cancer)

Dx 3/2007, IDC, Left, Stage IIB, 0/3 nodes, ER+, HER2- Dx 6/2020, IDC, Left, 2cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/21/2020 Mastectomy: Left; Reconstruction (left): Stacked/hybrid GAP flap Hormonal Therapy
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Aug 28, 2021 08:31PM LW422 wrote:

Kara--are you having to elevate your arm? Ugh this is making me crazy.

Dx 1/20/2021, IDC/IBC, Right, Stage IIIB, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/7/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 10/4/2021
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Aug 30, 2021 10:23AM melalymphatl wrote:

KaralnLA - I'm glad the recovery is going well. I know it's tough letting people do things for you. I had the same issue. My husband spent a lot of the 30 days telling me to sit down. And I spent a lot of the 30 days telling him I was allowed to be on my leg 10 min per hour. But I assure you that you need to allow it to heal and not overdo. No matter how hard it is. I pray the infections don't return. I was on a daily antibiotic for 2 years prior to the surgery and 1 year after. So I have now been off for 3 mon and so far so good. But someone I met on here had the lymph vessel transplant by Dr Chen and she still had an infection about 4 mon after.

Let us know how you are doing when the stitches are removed and you can return to normal activity.

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Sep 15, 2021 11:52AM - edited Sep 24, 2021 11:02AM by pennsygal

This Post was deleted by pennsygal.
Dx 12/22/2014, IDC, Right, 1cm, Stage IIIA, Grade 3, 2/21 nodes, ER+/PR+, HER2- Chemotherapy 2/8/2015 AC Chemotherapy 5/13/2015 Abraxane (albumin-bound or nab-paclitaxel) Surgery 9/28/2015 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy 11/16/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/29/2016 Femara (letrozole)
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Nov 21, 2021 04:31PM LindaKR wrote:

I recently saw Dr. Allison Nauta at OHSU in Portland Oregon. Had the reverse mapping done. She is recommending LVA and liposuction. I've had one bout of cellulitis, in the hospital a week, and LE for 11 years. The LE was manageable with some size difference, but not easily noticeable. Since cellulitis I've developed fibrosis, it is pitting still, and I can't reduce the size more than it is now. I'm currently using the flexitouch plus, daytime and nighttime compression. I'd love to hear your stories about this surgery, if anyone has had Dr. Nauta...etc... Dr. Naura was very knowledgeable, I felt very comfortable with her. She said it will definitely reduce my risk of cellulitis and 30-40% chance of QOL improvements. Someone said their PCP said no, all of my docs, and LE PT, feel that it would definitely be worth my having it. I wondered why someone's PCP would say no.


Modified Radical MX w/axillary dissection; 6xTCH, Hercpetin for a year, Rads, trying 3rd AI Aromasin. No Reconstruction. Lymphedema. Dx 3/19/2010, IDC, 4cm, Stage IIIA, Grade 2, 5/18 nodes, ER+/PR+, HER2+ Surgery 4/2/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Targeted Therapy 5/15/2010 Herceptin (trastuzumab) Chemotherapy 5/15/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 9/15/2010 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Radiation Therapy 9/25/2010 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)

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