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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: recovering from bilateral mastectomy

Topic: recovering from bilateral mastectomy

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 5, 2008 08:38PM

gandl wrote:

Hi, I'm new here. I was diagnosed with ILC multicentric,on 1-28-08 and had bilateral mastectomy with immediate reconstruction with expanders on 2-13-08.  I think they took the drains out too early and I have seromas on both sides. Anyone know how long this might last?  Also I am having a lot of muscle spasms and pins- and- needles sensations on my upper pectoral muscles. Everything still hurts to touch.  How long does all this usually last? I have started taking naprosyn instead of oxycontin because I needed my brain back.  I'm still having more pain than I would like.  I feel like I should be able to ignore it better, but I'm not. Anyone else's experience with something like this would be helpful.  Thanks, gandl

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Mar 5, 2008 10:40PM otter wrote:


I saw your post so I thought I'd respond.  I am in a different situation, since I had IDC (not ILC), I had only a left-side mastectomy, and I didn't have recon.  Is that TOO different?

Anyway, my mast/SNB was Feb. 5 (just about 4 wks ago).  I had one drain at my mast site and another in my armpit at the SNB site.  The mast drain was pulled after 7 days and the armpit drain after 10 days, when they were producing less than 30 ml 2 days in a row.  Even after they were pulled, I continued to produce fluid, which accumulated in a couple of places and had to be aspirated by my surgeon.

Did you talk to your surgeon about the seromas?  If they're very small, he/she might want to leave them alone to resorb by themselves.  My surgeon thought mine would go away on its own, but she decided to drain it so it would quit hurting.  Infection is a possibility once a needle is stuck in there, but if the surgeon does a surgical scrub at the site, the risk is small.

As for the muscle spasms and pins-and-needles "shocks", I know exactly what you mean.  The muscle(s) over my chest would get very tight, often just after I had done some stretching exercises.  It even hurts when I shiver, because my chest muscles tense up under the skin.  I'll bet yours hurt even worse because they're stretched over your expanders.  Do they give you any muscle relaxants when you have implants/expanders?  Seems like that would be a good idea.

My skin over my chest, mast site, and armpit is completely numb, but the muscle underneath it is not.  The muscle can "feel" almost any pressure at all--even just the pressure from clothing or buttons, and it hurts!

The good news is that this eventually goes away.  It just takes awhile.  Mine gets better every day, as long as I keep doing my exercises and stay active.

I wish you the best, and I hope you recover quickly.  I'm sorry you are so uncomfortable.  It will get better, though!  Someone will write soon who has more relevant experience.


Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Mar 6, 2008 01:52AM Gitane wrote:

I had multicentric ILC, bilat. and expanders, too. I had the stretching sensation, the shocks, the swelling due to fluid accumulation. I don't remember having spasms. However, my surgery was 2 years ago, so I think time distorts some of the memories. The stretching feeling and mild shocks continued throughout the expanding process, but diminished considerably after the first month if I remember correctly. The fluid went away by itself and was not painful. Someone who had the surgery more recently will probably be able to help you more.

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Mar 6, 2008 07:48PM gandl wrote:

Gitane, thanks for your comment.  The breast surgeon got 165 ml of fluid out of the left seroma today and 50ml out of the right.  The sloshy lake under my left armpit is now gone, hurray!  She will see me again in a week to take out any more that forms.

Otter, thanks for your comment too.  The doctor prescribed 2mg of valium for the muscle spasms today, but I haven't noticed any help from it so far.  I think that having all that fluid drained has got to help with the pain though.

Again, thanks for the communication.   gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, ILC, <1cm, Stage IA, 0/6 nodes, ER+/PR+, HER2-
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Mar 6, 2008 07:52PM gandl wrote:

Otter, I meant to ask you about what exercises you are doing.  I haven't been doing any, but think I probably should start something.  Right now I consider driving quite a bit of exercise.  Thanks, gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, ILC, <1cm, Stage IA, 0/6 nodes, ER+/PR+, HER2-
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Mar 7, 2008 11:38PM wixy24 wrote:

Gandl, my ps suggested using a vibrator at the old drain sites while watching a sitcom...the motion he said would assist in relieving the scar tissue that will form (or has) at the site. It worked wonders for me! I did have to use lortab 750mg every 4 hours during my expansion process but once the implants were placed the pain was IMMEDIATELY resolved! I did use one of those seat massagers with the heat, too, during the expander period...it helped so much! I understand the ps likes us to be very careful with actual massages so they aren't too deep into the tissues so ask yours if they have a preference or guidelines...the seat massager and my recliner were my best friends! Good luck, honey!

Dx 04-06-07 (my birthday) oncotype 10, DCIS,ILC Dx 4/6/2007, ILC, 1cm, Stage I, Grade 1, 0/17 nodes, ER+/PR+, HER2+
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Mar 11, 2008 09:49PM LauraGTO wrote:

gandl - How are you doing? Has the pain lessened? Hope so...I had lots of post-Mast/node dissection pain, but I was told by EVERY  Dr. that it is rare. Mine lasted for many months. Did you have lymph nodes removed?

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 11, 2008 11:29PM otter wrote:


Sorry, I just saw your question.  I've been doing the "Reach to Recovery" exercises I was given by one of my surgeon's nurses.  You can find them, and others line them, on-line.  Here are some websites with examples:



  (click on the link at the bottom of the page to get the pdf version) 


I am very fearful that I did not start exercising early or actively enough.  Now I'm 5 weeks post-surgery, and my shoulder and armpit are very tight.  It has become difficult to stretch my arm fully without extreme tightness at my incision and armpit, and some mild pain.

I just read on a Johns Hopkins medical blog that if you don't start stretching early enough or achieve full range-of-motion within a week or so after surgery, you can get "frozen shoulder" and/or cording, which requires intensive physical therapy.  Well, I have cording under my arm!  My surgeon told me not to do exercises until my drains were out, and the nurse said it would take 2 to 3 months to regain full range-of-motion.

Obviously somebody was reading a different instruction manual.  I sure hope your recovery is going better than mine.


Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-