August 2013 Surgeries

Checking in. Today was a much better day! I feel like I took a 180- degree turn overnight. It seems a lot of my crappy feeling was coming from the narcotic. Even taking only a half pill effected me. I'm apparently very sensitive to it. I switched to 600 mg ibuprofen every six hours, which works great and I have a clear head. Glad to see everyone seems to be doing fairly well. I came looking for drain info too. Only one bothers me some. I can actually feel it under my skin, which is kind of weird, but just more an annoying discomfort at times than pain. Wondering if they are painfull to take out though. Anyone know?

Jenn H

when I had my first sx I found the worst part to be the drains -very annoying!  There will be discomfort when they're removed but it doesn't last very long.  

Thus far this time they're not bothering me-hopefully  they won't be in very long.

It seems that when the drain is in for a while it gets sore at the drain site. I think the body starts healing around the drain and any movement becomes uncomfortable. When the drain is removed there is immediate relief.

I am hoping to have my drains removed on wed appt. Both are down to about 10cc for 24 hrs. Lots of energy but have to stay fairly calm until next wed. Hubby is not going to let me do much.

Hope everyone has a great holiday weekend.

The first week with them is hard to predict. I don't know if I will have any fills my TE's are just until final path is in and if radiation is not needed then on to diep reconstruction shortly. I did have skin sparing bil mx. They are tight but still lots of swelling.

I had my surgery Thursday, the 29th. Came home yesterday. Doing well. Visiting nurse was impressed, all looked good.

I only took Morphine once that night in hospital and half a Vicoden last evening. I think the most irritating area is where the drain tube is inserted.

I was fairly busy today, doing little stuff around the house, my sister came over so she took the dogs out, helped me make lunch and washed my hair!

I see my surgeon on Wed, hopefully the drain can come out.

Jo6202

No, not the sister-in-law.

Sending good vibes your way as you wait for results - waiting can be difficult!

I finished chemo on July 5, had left mastectomy and ALND July 30, exchange next week, expect to start proton radiation early Oct.   I am stage 3C with aggressive cancer so they're hurrying things along.   Mastectomy was traumatic but TE has given me a sense of normality when I look at myself.  The drains were also the most difficult/sorest part for me.

Have had weekly fills (hot, sore, "bowling ball boob") and started PT which is helping me get some range of motion back on left side.  Used pain meds at first, now off them - until next Weds.    I am apprehensive about exchange surgery, but on the plus side I hope I am getting it "over with."  I am an anxious person so going through 4 months of neoadjuvent chemo and knowing the mastectomy was coming after, may have been harder for me personally than having it happen quickly.  

I also have an autoimmune disease and needed to decide about silicone vs. saline.  My plastic surgeon uses silicone almost always.  I did some research and I decided I am OK with it, but if any of you have feedback, let me know.  All of us can support each other!  Best wishes to all of you!   AND ... one day at a time ....  Each day is a challenge but day by day, I am getting thru each phase.   And although I am polite, I don't allow myself to feel pressured by non cancer patients who apparently know how I should feel while going thru this (buck up!  positive attitude!)  I do feel better than I did 6 months ago while dealing with the initial shock, but never in a million years would tell someone what their feelings should be.   Sending best wishes to all of you

Pam 358,



Ok, we will be sister warriors then. Thanks for the good vibes. My sister-in-law was just diagnosed also and her name is Pam too.

It has been an extremely challenging and trying weekend.  Friday afternoon my pain level shot up to between 9 & 10 very unexpectedly.  I ended up calling my PS in tears and asking him had something gone wrong.  He said no, that it's probably the long-term pain killer that I got during surgery wearing off.  Whoa!  And this was with sticking to 2 Percocet every 4 hours and the muscle relaxer!  He suggested I use frozen peas on the areas that hurt but I was in so much pain I forgot to until the next morning. 

Pair this with not having gone to the bathroom since my surgery on Monday, 8/26 and it's not a pretty picture.  The pain was better yesterday morning and I was advised to do gentle movement so that my muscles don't spasm up so I went for a walk.  The PS' coordinator advised me to take a bottle of calcium citrate for the constipation when I called on Friday so I did.  When after 6 hours it didn't work, I called to ask what the next step is.  She said it works for everyone, sometimes it just takes a little longer.  So I said, in case I'm the fluke case, what do I do if it doesn't work, she said take another bottle in the morning.  Turns out I was the fluke case so I drank another bottle yesterday morning.  By late afternoon, I still hadn't gone but had endured bloating, cramping and huge belly for 2 days.  My sweetheart suggested I call my friend who's an acupuncturist because I mentioned that she said she's helped people with that.  I took his advice, called her, and 20 minutes later, we were at her clinic.  ( remember this was Saturday at 5:30 pm).  She treated me and had me drink a tea made from burdock root.  Within about 2 hours, I finally went - but it took lots more cramps and lots more false attempts.  (I felt pregnant going through false labor pains).  During the acupuncture treatment, I got a new extremely intense pain (seeming to be about where my right drain is) - it was so bad I needed my sweetheart and her to lift my back up off the table.  That pain continued til I went to sleep last night.  

Every time I have intense pain, I worry that something is wrong...I go through the what if's...what if my drain site is infected...what if the implant moved, etc., etc.

I have not changed my surgical bra or showered and I must so today is the "big reveal" though frankly I'm afraid to look.  I'm afraid to shower.  Can you really take off the bra and the gauze and let water run on it?  My sweetheart has offered to help and to even wash my hair but I'm still hesitant.

Thanks for letting me share.  I figure only women who have been or are going through this can really understand.

Any insight or tips to help get through this time is of course, greatly appreciated.  Thanks so much to my Traveling Pink Sisterhood smock with pockets for drains.  That's mostly what I've worn for the past week.  I wish I had two to switch off from.  

For those of you awaiting surgery, every woman goes through something different, so please don't let my experience make you anxious.  

Blessings to all for a peace-filled day, 

Jacquie

Jacquie,

Your pain and issues with removing and seeing all the surgical sites, showering, etc are not necessarily what I see here often but I can tell you I relate to your experience!  And feel better myself seeing someone else having the same experience I've had (I thought I was being a baby - but I'm really not; everything just hurt so bad and I still have not looked at my incisions on my chest and I'm almost 4 weeks post surgery).

Yes, it is OK to remove your surgical garments, dressings, etc and let water run over all the areas.  Here is what might help in "washing" the surgical sites (I give this advise because there was just no way I could see touching the areas with a soapy washcloth due to pain):  I took a new spray bottle, I squeezed in some liquid Aveeno daily wash "soap", then added some warm water.  I made sure the spray was on a mist setting - I think a stream would hurt - then when showering I simply sprayed all the areas where there were incisions to make sure they got cleansed.  I had a home health nurse visit me 2 days after leaving the hospital and we had to ask her about showering instructions because the nurses never told me anything.  She said it is important to NOT use fragranced soap (I was lucky because I already had Aveeno daily body wash and she said that was perfect).  I had to have my husband assist with the shower, I could not move my arms enough to wash my back and there was no way I could raise them to wash my hair.  Let your sweetheart help - any offer of help you get you should take; don't hesitate for a minute.  You've been thru a major surgery and it's very hard on the body.  Some of us have more problems with it than others so be assured you are not alone.  How are you set to hold your drains while you shower?  Do you have a belt or a lanyard?  You need something and there are lots of good suggestions like making a belt of saran wrap and slipping your drains on that and then tying the saran wrap.  Personally, I used a soft string around my neck, slipped the drains on those and tied it closed - but very uncomfortable.  Each has their own preference so look at the postings to find what might suit you best.  Oh, and rinsing the areas where you have incisions - don't let the shower water hit them directly!  Stand with your back to the spray and let it hit your neck area.  Stand there for a minute or 2 and as the water runs down your front you'll rinse off just fine without having the shower stream hit your incisions directly.

It sounds like you had immediate reconstruction since you made calls to PS - what did you have?  And the tube thing - they hurt!  I still have 2 and the discomfort gets worse the longer they are in.  Since I have an inbred fear of looking at any incision on anybody (hence the reason I've not looked at incisions on my chest) - I just get sick to my stomach when I see stitches-always have and likely always will - anyway....I had to finally look at the area where the tubes were sewn into my sides because they were hurting SO much.  I found that they had long tails off the knot which was catching on all my clothing and constantly being pulled, and friction was making them so insanely irritated.  So have you looked at that?  Or had your sweetheart look?  Might be the same issue and I can tell you when I cut those long tails off, all the catching on clothing stopped and felt so much better.

Please know you are not alone (I was beginning to feel I was until I read your post!).  It gets better with time, it's just hard to keep that in mind in the beginning when everything hurts so bad.  And you will feel better once you shower - have a chair or something in the bathroom or in a room nearby and let your chest/armpits/sides air dry (don't bother patting them dry if you hurt).  It only takes about 10 minutes and then you don't have to touch.

I can tell you all my pain was explained right away when the doctors and residents came to check on me the first morning after surgery as being caused by the reconstruction.  After being in so much really bad pain for 5 days I was extremely upset and started worrying I made the wrong decision regarding immediate reconstruction (nobody told me the pain that would be involved and all the pain meds they gave me just didn't seem to bring the pain below an 8 - that wears on a person!).  But it gets better - keep that foremost in your mind.

I'll watch you progress.  We're all in this together and I've found BCO discussion boards such a wealth of information and the support and caring and encouragement are unbelievable!

Wishing you well!!

Hello ladies! I do want you to know, I am reading all your posts but since I've been just accessing the site through my phone while recovering it makes it difficult to respond to everything I'd like to.



I'm 5 days postop bilateral mastectomy w/immediate reconstruction w/implants. Lili, you sound like you're having quite a bit more pain than I am with a similar surgery although I had them go down in size on me, so not sure if that's the difference. They took about 800 cc of tissue and put in implants that are 480 cc.



I'm actually feeling really good today. I had the longest stretch of sleep last night that I've had so far, which was nice. I'm scheduled to see my PS today. Yes, on Sunday. He's going to be out of town for a few days, and wanted to see me before he left. Sounds like I may have 2 of my drains pulled, which I'm excited and nervous about. I'm worried about pain.



I'm sorry to read about those of you having so much pain still and other issues. I hope you're able to figure things out so you can get some comfort soon.

Glad to see everyone is recovering so well. JenH8...getting to see the doc on Sunday is awesome...especially on a long weekend!



I go on Wednesday to PS. My drains are averaging 20cc on left and 30 cc on right per 24 hours. I am hoping they decrease a little so I can get them out at this appointment.



2 questions...

1. I am still seeping around the top of the drains where they exit my body. How long did that last for all of you?

2. When did your PS start your fills? Do they usually start at this first post op appointment, or do they wait until the drains are out and the sites healed?

I was told by PS not to shower til after last drain is out. Been sponging and using baby wipes, husb been doing my hair in the kitchen sink. I dont feel like I got great instructions after leaving the hospital.I asked alot of questions but only cause Id been on these boards and seen things and read up- so I knew what to ask. I think the hospital and the surgeons should do better explaining how you are going to feel and why, and what might happen (zaps, etc), so we are more prepared.

I also have been reading about arm excercises, and some places seem to say to start soon, other places say wait til drains are all out. I want to start to keep ROM, but am nervous because I have one drain left.

I had read online and in Dr Love's Breast book that all PS are different.  Some say showering is perfectly fine day after surgery and others say not till drains are out (boy, I'd be pretty darn ripe by now if I had to wait for that).  I was directed that showering was fine as soon as I went home and I had 4 drains at that time.  In fact, my husband was specifically told that the incision sites where tubes were HAD to be cleaned so they wouldn't get infected.  I showered on my 3rd day post surgery after getting specific directions from Home Health.  I would ask your PS if you could shower.....he/she might say you can go ahead.  I didn't sponge bathe, I used the body wipes I had purchased before surgery but nothing can take the place of a real shower!  I don't want you to do anything your PS said you shouldn't.  If you want to follow his instructions, can you think of perhaps taping plastic wrap around that incision to keep it dry in the shower?  Just a thought.

Nobody said anything to me about arm movement.  I moved it as much as I could when I could.  Took several days before I could even hold a mug of coffee but I never intentionally tried to keep my arm(s) still.  I worried about lymphedema and then developed fluid buildup beneath the left node incision.  I was told to use my arm as much as possible - it would help get that fluid moving and there was no reason NOT to move the arm.  I've read a lot online about people saying "keep as still as possible so your fluid output decreases so the tubes can be removed" - I didn't like the sounds of that.  Do that, get the tubes removed, start using your arms a lot, and then fluid output could increase and before you know it, an infection could be right around the corner - NOT GOOD.  But I can't say I read anywhere online or in Dr Love's book that you should not use your arm - in fact, her book talked about the issue of getting Frozen Shoulder if you do that and then you have a whole nother problem on your hands that can take a long time to resolve. 

Can anyone think of some way we, as BC patients, might get something together to get our voices heard on doctors and nurses informing us better?  I'm actually disgusted with the lack of info I got and downright mad about getting poo-poo'd on some of the questions I did ask.  Like I was asking something that I shouldn't worry about yet my questions came from reading Dr Love's book before surgery and doing research online.  Know the response I got from every doctor???  "You shouln't go online to research or read about these things, all it does is worry people and you have to understand that the people who post comments online are usually just the ones who had bad experiences".  I'm not kidding!  I told them all that it's my right to KNOW what is happening, what to expect, and to ask questions if I have them - but they just blow over the issues.  I had/have a great team, don't get me wrong, but the medical profession needs to get it thru their heads that we live in an age where we can be more informed than ever before and "informed consent" means something!!!!  Any suggestions?