Unusual Seroma issue

ilytib

Hello
all. I am new to the forum, so please be patient as I learn my way
around! I’ve had some issues navigating.

If
I am posting on the wrong forum, please forgive, I apologize. Then perhaps
someone could direct me where I should be?

I need help, advice, information.... the whole caboodle!
I am looking for information about re-routing the lymphatic fluids after
mastectomy. My double mastectomy was in April 2014, with complete Axillary
Lymphectomy on the left. I do not have lymphedema in my arm, I have a
different issue, that I cannot find ANY information on.

I
have had ongoing seroma in my left chest wall, My lymphatic fluids are dumping
into the chest cavity where my breast USED to be. It builds up and is quite
painful. I have had to have it expelled at the doctor’s office repeatedly. I
went about two months without issues, but now it’s started again. I’ve had to
be “emptied” twice already this week, and will have to go again on Monday, as I
feel it filling up.

They
are finally sending me to a Lymphedema therapist next week. But from what
I've read this technique is only effective 50% of the time.

I cannot heal as long as the fluids continue to dump.
There has to be some information somewhere out there. I am lost and
confused and desperately seeking information. I have had no luck with web
searches or talking at “group”. I am scared.

I’ve
beat the cancer, I’ve adjusted to the mastectomies, but I have to get back to
living. I can’t work until I do not have open wounds. The Doc has used a
syringe a couple of times, but he has also had to make incisions, 6 times so
far.

Thank you in advance for your attention to this or any
information you might be able to share.

ilytib

kmpod

Hi ilytib,

Having a seroma persist as long as you have is a major drag. In my case, after each mastectomy it was three months until I didn't have to be drained by syringe on a regular basis - even on my prophy side where no nodes were removed..

Have they discussed the possibility of reinserting a drain? Had my seromas not quietened down on their own that would have been the next approach.

The incisions sound particularly nasty. Could a syringe not access the fluid?

Best of luck with getting this solved expeditiously. Unfortunately you must be getting to know your surgeon quite well.

Binney4

ilytib, welcome! I'm sorry to hear about your discouraging problem, but glad you found us. I hope you'll soon have the answers and relief you need and can take back control of your life!

Has your surgeon brought up the idea of replacing the drains? That might be the next logical step. I can't tell from your post if the issue is the seroma itself or if you're dealing with a non-healing wound. A wound-vac might be helpful for resolving a wound that is slow to heal.

A seroma is pooled fluid, which (as in your experience) can be drained. Lymphedema on the other hand is fluid that is dispersed throughout the cells, so it can't be drained, though it can be moved toward functioning lymph nodes by a gentle massage-like technique called Manual Lymphatic Drainage (MLD) that is managed by a well-trained lymphedema therapist. 

Seromas "act up" with exercise, so might you have done something recently to set it off again--a new exercise program, heavy housework or gardening? You might want to lie low over the weekend in order to reduce further fluid build-up.

Seromas are not rare, and for some of us they can drag on for way too long, but I'm betting there will be light soon at the end of this tunnel. Hang in there!
Gentle hugs,
Binney

glennie19

Hi ilytib! 

 Glad you made it over here with our "swell sisters"!  They have a lot of experience and helpful advice. Great ideas above about possibly replacing the drain (no fun, but better than multiple incisions) and a wound vac if needed for healing.  I really hope you find some resolution for this problem.  When you go back to the doctor on Monday for draining, ask about chest compression. When I had seroma, after he drained it with a needle, he then wrapped my chest to put on compression to help keep it from coming back. Ask if a breast binder would be helpful.  Here's a link to the one that I use. (I had seroma drained 3 times,, then ok,, then I developed truncal lymphedema 6 months later)  http://www.eabmedical.com/index.php?cPath=1

best of luck,, and keep us posted.

glennie

ilytib

kmpod

Binney4

glennie19

Thank you all so much for responding! I have felt so alone with this, I appreciate you and your input very much.

To answer some of the questions or statements: Yes I have constant compression, have had it since April.(And here I thought I'd not need a bra after all this!). They have mentioned the drainage tubes, but said it was a poor alternative, as it would not encourage my lymphatic system to re-route, which is their ultimate goal. The Doc has used a syringe to expel the fluid a few times, but the "pocket" as he calls it, is deep, so most times they have needed to cut in order to get all or as much of it as possible. 

My chest is starting to look a  little like a tic-tac-toe board.  Forgive the humor if it offends you, its just my way of attempting to deal with all this. I want to find a way to help my own situation. I just have no idea what to do, to teach my own body to re-route this. I'm not opposed to standing on my head everyday if it would work!

Thank you all again. I'm so grateful to have found this forum, I wish I had known about it when I found out about my cancer.

Bless you all for your kindness.

ilytib

GemStateGirl

ilytib--it's been 3 years since I had this problem but after about 9 weeks of my seroma not resolving after my mastectomy, I had a simple outpatient procedure at the hospital where my breast surgeon "roughed up" (my description) the inside of my chest tissues where the seroma was.  My understanding is this is something they do frequently when a seroma doesn't resolve to help the chest tissues adhere to each other and "close up" the seroma pocket.   It worked like a charm for me.  I had a drain for maybe a week after the procedure and that was it.  It totally solved the problem.  Has your surgeon ever mentioned more surgery to fix the problem?

I'm really sorry you're going through this.  Having to deal with an ongoing seroma was the worst part of my treatment.  I hope you find a solution soon.

Binney4

ilytib, reading both here and on another forum where you posted, I see you're getting plenty of ideas about what could be happening and what might be done about it. Best thing is that you're not feeling alone anymore!

A few random thoughts you can add to your considerations:

The lymph system has a short "window" of healing and regrowth after surgery--a couple of weeks. Beyond that it isn't likely to repair itself enough to reroute lymph fluid without additional help. The fluid in a seroma, on the other hand, may eventually be re-absorbed by your body, or the "pocket" it fills may need surgical help adhering as GemStateGirl described above. 

Every time an incision is made, it results in scar tissue formation, which can further block lymph flow, rather than promoting it, so you're right to feel that further incisions for the purpose of draining the pooled fluid may not be something you want.

Since some posters elsewhere have suggested that what you're dealing with is truncal lymphedema, here's information about that:
http://www.stepup-speakout.org/breast_chest_trunck...

While you may well also be dealing with truncal lymphedema as well, a seroma is NOT lymphedema. Seromas pool fluid and can be drained; in lymphedema the fluid is dispersed throughout the tissue and cannot be drained (though it can be moved out of the area temporarily with proper, non-invasive lymphedema therapy). 

Again, I just want to encourage you that one way or another you can and will get this under control. Hang tough!

Gentle hugs,
Binney

bunnysnap

Hi - I tried posting this last night but it's not here so apologies if it appears twice in a couple of days...

Hey lady - hope you are well and hope this is helpful.

I had a
DMX 01/10/13 and immediate reconstruction. I had what can only be
described as a 'watery balloon' of a seroma immediately afterwards and
this continued for months.

And months.

I have posted on
this site a lot about it so please do 'find' me and my posts. It filled
my life (and sports bra!) It was wobbly, noticeable and made me
miserable. I poked it, wobbled it, examined it from all angles and cried
over it on a daily basis.

My consultant drained me on a
weekly basis - anything between 90 and 250mls and the nurses would look
at me, with one eyebrow raised, shaking their heads and muttering that
this draining process, whereas I was totally compliant, if not actively
encouraging, was only delaying the inevitable; the inevitable being that
my body needed to learn to absorb the seroma on its own.

They
were right. Your body WILL learn to absorb the seroma fluid. But I had
to go along with / hate / ignore my body collecting the fluid before it
started happening. I stopped being drained in January 2014 and it was
June 2014 before I looked in the mirror one day (which we all either
stop doing for weeks at a time or do it every other hour yes?) and
thought, 'oh'. The fluid had gone. I had poked at it, wobbled myself in
the shower etc but not really looked. And it had gone.

It
is not encouraging, I know, to read posts and think 'But I want it gone NOW! How much
longer does this 'journey' (thanks X-Factor for that expression!) go on
for??' But try and be patient (so hard), it gets better.

Seroma
is a pointless, upsetting, unreasonable side affect of a life-changing
experience. It's very annoying and shouldn't happen when we are already struggling with everything else.

But..At the risk of being an irritatingly positive person (!), remember this..

Be proud of your Tic-Tac-Toe appearance.Your irritating and frustrating fluid is a symbol of you winning, not losing.

Stay in touch - there will be a day when you smile because it's gone and post a mesage like this to someone else. Honestly :-)

I will have my fingers crossed for some positive developments for you. Stay strong Seroma Sister.

Love,

Another Seroma Sister xx

tangandchris

I had a seroma on my left side(proph side) that gave me hell. It was painful, the pressure would build up and caused me intense pain. The other issue is that seromas can be a breeding ground for infection. I had mine drained several times and finally I had to have a surgery to remove scar tissue that was trapping the fluid. I would have a needed inserted into my chest to drain the fluid and the doctor told me it was almost as if I had honeycomb like tissue in there.

After the surgery it improved, although I did have a drain in for sometime even after that.

Good luck, I know how difficult it can be!