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All TopicsForum: Lymphedema → Topic: Revision gone bad

Topic: Revision gone bad

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jul 9, 2017 09:09PM

ALJohnson wrote:

I was diagnosed with breast cancer in 2011. I had a double mastectomy with tissue expanders placed and 12 lymph nodes removed from the right side. After chemo my blood count had a difficult time coming up, which delayed my exchange. When I finally had my exchange surgery, the doctor put the wrong size in. I was extremely "lopsided". He would not fix the mistake. Another doctor added saline to my right implant about 6 months later, and this new doctor also stitched me up quite a bit in order to keep my implant from "falling into my armpit". This ended up causing my some mild lymphedema of my right trunk and breast area. I also had lots of pain on my right side, and cosmetically still was not "right", both breasts had extreme rippling. I waited 5 years, and finally decided to see a third surgeon who came highly recommended. He said it would be a complete re-do. So on May 10, 2017, I had my saline implants removed from under my muscle, my muscles re sewn to my chest wall, and tissue expanders placed above the muscle on both sides. The doctor said there was a lot of scar tissue he had to go through on the right side. After a week my drain tubes were removed. After 4 weeks I went back to work. That weekend I also tried a beginner scuba dive training. I ended up with lymphedema of my right breast. The nurse was removing about 200 cc of fluid every other day, and then it found its own way out, through a hole in my incision. The fluid was not infected, but the hole continued to grow. The next step was to remove the expander, clean the area, and replace the expander with a drain tube on that side. I asked if we could just go ahead and do the exchange for permanent implants to hopefully keep me from a third surgery later, which he agreed. The last surgery was June 26th, two weeks ago. My incision started to leak last Friday.

I'm not sure what to do, and I don't believe this doctor understands lymphedema at all. I have an appointment with a lymphedema specialist Tuesday, but now wondering if I need to talk to someone in wound care. I've seen different posts on tunnel wounds, and I'm wondering if that's what is developing? Am I jumping the gun to think I need to just have the implant removed? Or do I give it time to possibly heal, WILL it heal? I just don't know what to do

Dx 4/14/2011, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 5/3/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/20/2011
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Jul 9, 2017 11:27PM ChiSandy wrote:

At the very least, I would definitely stay away from environments that cause rapid changes in barometric pressure. So no scuba diving. As to your implants, I have no idea. See the LE specialist.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Jul 10, 2017 02:42AM Momine wrote:

That doesn't sound like lymphedema. Did you have radiation on that side?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jul 10, 2017 08:39AM ALJohnson wrote:

as far as diving, thae first training was in a 6 ft pool, and I think it was the weight on my back that sent me into LE.

Trust me it was LE, very hard to get diagnosed with LE of the trunk area. I would develop it in the past 5 years every time I did a weight class, etc., but it was never this severe. Worked with a LE specialist who taught me a little about massage, and she ordered a sleeve for me, but I've never had an issue in my arm. This was definitely LE, Andy the fluid was nonstop. Because I had in TE, aspiration of the fluid was not so tough, we just couldn't get ahead of it and it toolbox the path of least resistance, my incision. I think me being in her pool 4 1/2 week she out of surgery for 3 hours two days in row was in hindsight a bad idea, as the stitches probably hadn't had sufficient time to heal? The fluid was also sent to pathology and negative for infection. Since this second surgery, the LE hasn't reoccurred yet, but im only two weeks out. However, this new incision is now open in the aame spot as befo

Dx 4/14/2011, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 5/3/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/20/2011
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Jul 10, 2017 10:41AM Kicks wrote:

That sounds more like a seroma than lymphedema. Draining 200 cc from the area and then breaking through the incision to drain itself does not sound at all like any experience I've heard of before with LE - seromas yes.

"The nurse was removing about 200 cc of fluid every other day". That sounds like a 'pocket' of fluid (seroma) was there. LE does not form 'pockets' that can be drained (aspirated) but is generalized in the areas effected.

It would be helpful to those who reply if you would fill in your Profile.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/24/2009 AC Surgery 10/20/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/10/2009 Taxol (paclitaxel) Radiation Therapy 2/3/2010 Breast, Lymph nodes
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Jul 10, 2017 11:41AM Binney4 wrote:

Hi, AL, and welcome to bc.org,

I'm so sorry for all the grief you've gone through with this, and I hope it's soon cleared up with some real healing.

While I hear you on the idea that you already have truncal lymphedema, what you're describing now is not that. In lymphedema the fluid is not trapped in a "pool" that can be drained. Instead it infiltrates the tissues, where it's SUPPOSED to be picked up by the lymph system and hustled back into the circulatory system after filtering out any cell "garbage."

That is not to say lymph fluid cannot "leak" out because of lymphedema. If the lymphedema is poorly controlled stagnant lymph fluid can find it's way out through the pores of the skin. It's messy, sticky and caustic, but even then it can't be withdrawn with a syringe, because it's distributed throughout the cells of the tissue.

Seeing as how you've been dealing with this problem for way too long already, you might ask your surgeon not only to address this problem but to refer you to a wound specialist as well.

A lymphedema therapist will probably not be willing to do much about the underlying lymphedema until this leakage and wound-healing issue is addressed and healed. But after that, you'll need a therapist with enough truncal lymphedema experience to both reduce the swelling and recommend appropriate compression (compression bra, cami, etc) to keep it in control. S/he should also teach you self-Manual Lymph Drainage and check your technique at intervals to assure you've not only mastered it but continue to use effective technique. And s/he should also be knowledgeable about how/when to safely resume previous activities and begin new ones. Lymphedema needs to be managed for life, but the post-surgery issues you're dealing with need to be resolved as quickly as possible.

http://www.stepup-speakout.org/breast_chest_trunck...

Please do keep us posted and let us know what you discover. Gentle hugs,

Binney

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Jul 10, 2017 07:18PM ALJohnson wrote:

Sorry Kicks, I was a member in 2011, been a while since Ive been on here, and couldn't log into my old account. Created this new one last night and just now updated my profile. Your answers are EXACTLY why I came back. BCO was my saving grace going through treatment, it's amazing what we learn from each other and then go back and educate our doctors with! Not to mention the friendships I've made from this site.

After reading your answers, I feel so much better. Sounds like it is/was a Seroma. My trunk is swollen somewhat, will talk to the LE specialist tomorrow and see what she says about that. There's been no drainage from the site since yesterday, and that was minimal. We have a vacation planned leaving Saturday for a week. I knew two weeks ago I wouldn't be getting in the water, no problem, I'd rather look at the beach or the walls of a hotel room than this house one more day (been two months since first revision). The site is not infected, so I'm hoping now to get answers tomorrow on where we go from here. My fears are I could get on the plane and develop LE, (I have a sleeve I've never used, taking it to my appointment tomorrow), Or that I develop an infection while gone. Hopefully the doctor will refer me to a wound specialist and I can treat it on vacation exactly how I would here. I have hibaclense left from surgery, will wash with that tonight. Before this post I was convinced it was LE, and was worried about it blowing up again on the plane (my breast) and was scared to go at all. I was 4 1/2 weeks out of my last surgery when this all happened.

Binney, I will check that link now. Thank you so much!


Dx 4/14/2011, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 5/3/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/20/2011
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Jul 10, 2017 07:19PM ALJohnson wrote:

Momine, I never had radiation.

Dx 4/14/2011, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 5/3/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/20/2011
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Jul 12, 2017 11:46AM ALJohnson wrote:

Well, all is good! Turns out it was not LE of the breast, thank goodness. The LE specialist and the doctor both think for some reason my body was rejecting the TE on the right side, and my body was creating lymphatic fluid to get rid of it, which it couldn't until I had surgery. He said the hole in my wound was not a seroma, just a weak spot in the incision where the fluid found a way out. So this last surgery he did remove the TE on both sides, and replaced with permanent implants, and restitched me. He had cut away the area where the skin was damaged, and he said that was very small. As far as the little bit of leaking from this new incision Friday night and this past weekend, it was very little, like dime size, but because of what I just went through I guess I freaked out a little and was expecting the worst. This past Monday was just two weeks since my last surgery. Everything looks good according to both doctors, it's all healing, just slowly. There has been nothing leaking from my incision since Sunday, and that was teeny. I'm keeping it covered while I shower, and wash it quickly with hibaclense at the end of my shower. Then I put a pice of gauze over the area lightly with a little paper tape so it can still breathe, but just in case it leaks a little. The doctor doesn't think it will, but like I said, the first go around has me probably over cautious. So, I'm just to continue taking it easy, going on vacation Saturday (YAY!). I was fitted for a new sleeve to wear on the plane as a precaution, and really liked the LE specialist. I'm seeing her a week after my vacation for a new early detection test for LE. It will show if in fact that's what's going on in my trunk area or not. Also wearing a compression tank. I will see the surgeon again right after vacation, and hopefully get the ok to go back to work. As for being in the water, I won't be doing anything like that anytime soon, I want to make sure this is COMPLETELY healed before I do that.

Allison T
Dx 4/14/2011, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 1, 2/12 nodes, ER+/PR+, HER2- Surgery 5/3/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/20/2011

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