post-op mastectomy care

[Heart Sutra]

Thank you for being here.

Sue is scheduled for a modified simple mastectomy with sentinel node biopsie/dissection on December 5th. Obviously we don't know what they'll find in the nodes yet, so we don't know how extensive that removal will be. She also scheduled reconstructive surgery to begin at that time involving an expander for eventual implants.

I've asked the surgeon, and I've read as much as I've found, about post op care and what to expect. Naturally, I have heard everything from "very little discomfort" to "very severe pain".
I understand that everyone has their own experience and that personal experience can't be predicted, but we don't know anyone who has gone through this surgery, and I feel unprepared.

I wonder if anyone could tell us what helped, what felt best, after their surgery? What can I do as a caretaker to make things better? Is there one part of your experience that you felt you weren't prepared for? Anything to watch for? A lot of questions, right? I feel like I'm intruding on personal space.
Anything that you found to be helpful that you would share with me would be so appreciated.
Thanks to all of you for what we've learned so far.
---Kevin and Sue---

[Barbara H.]

Hi,
I had this surgery over 8 years ago. I virtually had no pain, and needed no meds other than over the counter remedies. I did not have the surgery for reconstruction and have heard that it can be painful. However, I was very nauseated the first night. They could barely get me to my room eight hours later. Of course, that is a problem that I have with anasthesia. That night my husband brought me flowers. That was a big deal from him, because at that time he did not buy them very often.
Best wishes and good luck,
Barbara Holz

[Jackie]

Kevin & Sue,

I too had a mastectomy and sentinel node done with reconstruction. My reconstruction was with an expander and implant later. I also had an implant put in on the other side for semetry. I was in the hospital one night. I had pain initially, but it didn't last. I went home with one drain (some have more drains). I took prescription pain meds for a day or two. I had more pain after the first fill of my expander. Make sure your plastic surgeon goes slowly with the fills. I teach school and I went back to work 5 days after surgery (drain was out by then). It was a low key day of playing in the park---I sat a whole lot and went home early. The implants require a lot less time of recovery. Hope everything goes well for Sue. You are in my prayers.

[Margerie]

I had MRM and axillary dissection a little over a year ago now. I did not have expanders at the time- I hear they aren't the most comfortable things in the world. Pain-wise I was ok, but watch out for burning arm the first few weeks. I got along with Tylenol and the occasional Darvocet.

Advice? Get as much organized as you can beforehand- meals, rides, household chores. Your wife will need help cleaning her drains and bathing/washing her hair for the first week or two. Button up pjs and slip on shoes. I loved my softee camisole (google it, it is a post-breast surgery cami) - or some other easy-on and off cami. To shower I had a big piece of ribbon I wore around my neck and pinned my drains onto. Make sure everything she may need is within reach. Somehow I overlooked all my vitamins were on the top shelf. I was advised not to raise my arm up over my head for a few weeks.

Anyway, looking back I would have had the surgeon write out the scripts for the pain meds and antibiotics before the surgery- so that was one less thing my poor hubby had to go get after. You sound like a loving man which will help with the emotional healing, which may be the difficult part. You feel real glamorous with one or two breasts missing, drains and having to shower with a collar on- ha! Maybe some good books/movies you can enjoy together.

I wish you both the best and a smooth recovery for your wife,

Margerie

[KellyA]

Hi Kevin and Sue,

I did have the same surgery myself in May of this year. I had a double mast. followed by immediate reconstruction with implants. We did not know if they would be able to get the implants in or have to do the expanders. They did get the implants in so that was one less thing to do later.

The surgery itself was not bad. I was actually very surprised that it went as well as it did. I had very loose dressings on just to catch any drainage and those came off within 24 hours. The mast. site did not look bad at all, even just a few hours after surgery. I had four drainage tubes (2 on each side) and those were nasty. They have to be "stripped" every few hours at first and then less frequently until they are removed. I couldn't really do it myself (at least at first). My husband was just wonderful and did it all- dressings and draining the tubes. It really is kind of nasty though, so be prepared. The drains had to be emptied and measured for output. I had mine in for about 8 days.

As far as pain goes, it wasn't too bad. Everything felt very very tight almost like someone was sitting on my chest. My implants went in under the muscle. I did get a bad baackache for about a week afterwards, but that was probably due to the fact that I couldn't really sit up or stand up straight at first. I was a little hunched for a few days. I think that I only used the prescription pain meds for about 2 days. Then tylenol did the trick. Back rubs really helped the backaches. I was able to attend my son's 8th grade graduation in 3 days and at the pool in a swimsuit with my kids in 10 days. I found lots of "peasant" style shirts with drop waists to concel the drainage tubes. Maternity shirts would work too. I am pretty small and thin so the tubes really stuck out of my regular clothes. Also, you might want to use button down shirts or some that you can step into as you won't be able to lift your arms up over your head for a few weeks. One more thing- my ribs were very sore for a week or so because they pulled the skin up from around them to make the implants fit. (cont.'d)

[KellyA]

Just a side note- I don't know if you are going to need rads or not- I do- I start this week. I was told that there was a 50/50 chance of the area on that side encapsulating and needing to be fixed after rads. I didn't really have any other options because I didn't have enough tissue to do flaps. My doc said that we could at least get them in and get the skin stretched and that IF I had problems that he could fix it after rads. I'll let you know how it turns out.

I hope that you have lots of luck with surgery and pray that you have the best possible outcome.

Love, Kelly

[chrisy]

Hi Kevin and Sue,
I had that surgery 4 1/2 years ago. It was the first surgery I'd ever had, so I really had no idea what to expect!

If Sue has not had any surgery before, one thing you will want to know is to expect nausea and grogginess upon "waking up". I felt crummy and when they asked me if I wanted my husband to come in I said no. I didn't realize that they would never ask me again! So the next surgery, I made a point to tell them that when I say "no" I mean "yes" to that question! And the sooner you can even consider keeping food down, have some because it will make you feel much better.

I did not have much pain from the surgery, although there was considerable pressure - it felt sort of like a pontiac sitting on my chest! But not really much pain at all. I don't think I even used the "Patient controlled analgesia" which was funny - they kept coming in and tapping the machine because they thought it was broken.

I also went home with a drain (or maybe 2) that stayed in for over a week. That was a little gross, but not painful. One thing I found very helpful was to get a cloth or elastic belt and safety pin the drains to this, so that I wouldn't accidentally yank them out (because THAT hurt!)

For some reason I had to sleep almost sitting up for about a week. I felt pretty good and was able to be up and around, but it does take a while to get back to full strength.

When I had the implant placed and reduction for symmetry, that surgery was very easy, I bounced back very quickly and was back to whatever constitutes normal within a couple of days.

Good luck to you, and I'll be hoping you get "good" news and nice clean margins with the surgery.

Hang in there
Chris

[sherri]

Hi Kevin and Sue,

In December 2004 just before Xmas I did find out about my IBC (the mose aggressive type of BC). I had chemo dose dense first and then in April had Mastectomy. I did not do reconstruction because my cancer was very aggressive and they were not sure if I can survive. Just 10 days after 6 cycles of dose dense chemo, I had the surgery, it was a piece of cake. The nurse came to help me to go to washroom, but I didn't need her help. What I recommend to do all the exercise they give you after the surgery. I didn't do it and end up having frozen shoulder. Good luck to you. My husband also as usual has been an angel for me all the way.
Big hug to you,