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

[tousled1]

Kevin & Sue,

I had a bilateral mastectomy in June of this year -- no reconstruction done since we already knew I had extensive lymph node involvement and would need radiation. As for post-op, I had very little pain. I did have tubes in which had a ball on the end to collect fluid drainage. These balls had to be emptied and Ihad to keep track of the amount of fluid from each drain. These drains stayed in about a week. I can't advise you as to what to expect with immediate reconstruction. I can however tell you how important it is to get the arm moving, don't life anyting heavy and avoid a lot of stretching. I stayed in the hospital overnight and was driving in a week. Good luck to you.

[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

[Bev]

Only did a lumpy. My surgeon gave me a small pillow to tuck under my arm which I used for a long time. Only had to do prescription meds the day of surgery, but we're all different. Lounged around for a few more days not feeling all that hot.

Thank you. It helps us to help others. Really. I feel like I have some sort of post traumatic whatever that writing helps to resolve BB.

[Heart Sutra]

Thank You all so much. It is so much stronger to hear personal experience than it is to read the dry, antiseptic advice from books on the subject. Though there are some good books too!

Your words and encouragement are so needed, and so appreciated. Your insight is invaluable.

If there are others who could show us the way you've done it, please do.

Thank you for being here. It makes our being so much better.

[lindyjo]

Hi Kevin & Sue,

I had a modified radical mastectomy in March. I had 13 lymph nodes removed with 7 positive. I chose not to do any reconstruction because I knew I would need chemo & radiation. Much to my surprise, the surgery was actually fairly easy. I was talking & joking with my family in the recovery room and had a roomful of company a few hours after surgery. I think I had a total of 4 pain pills after the surgery. 5 days after my surgery I went for a walk and went out for breakfast! I was told I'd be off work 4-6 weeks. I am a dental assistant. I went back 2 weeks to the day! I had pretty much full range of motion in my arm within a week. It is important to do gentle exercise a.s.a.p They should give you a booklet with some exercises in it. As soon as Sue has her first post op check and they say it's okay she should start doing the exercises. Very gently tho! It might be different when starting reconstruction right away so be sure to ask. I think the worst part for me was the drains and not being able to shave that armpit or put on deodorant! The drains are kinda gross, having to measure & record the fluid output, but you get used to it. I found it easier to sleep by myself for a week or 2 to avoid the worry of being bumped. Having some easy meals planned or made up and frozen would be a good idea. It sounds like you are a great caring guy and just that will be a great help in itself. Many prayers for a smooth surgery!! Lindyjo

[Sheila]

Sue

I had mastectomy surgery at 1pm and was having a cup of coffee the next morning at my own kitchen table...I didn't have pain, more of a burning sensation or numbness...my back and arm hurt worse than my chest....the drainage tubes are a nuisance, but my mom who also had a mastectomy, made me a soft little bag that went under my clothes and the strap went around my neck and the other arm...kind of a messenger bag for the drains...it was so handy, not pinning to my pants that had to be undone for every bathroom break! I didn't have reconstruction for a year and a half, but when I did, it was outpatient surgery. I felt tired for a couple days, but nothing realy bad...I recovered on chocolate chip cookies and soap operas...which I usually never watch...you will do fine....and you will be in my prayers for a quick recovery!

[Audrey]

Hi Kevin and Sue,
Five years ago, I had a simple mastectomy with reconstruction and a breast reduction on the other side at the same time. This was my first surgery and I was surprised at how out of it and awful I felt after waking up. Once the effects of the anesthesia wore off, I felt much better. I didn't want to use the mastectomy arm, though, but the nurses made me start using it as soon as possible. I think after about 3 days I was feeling pretty good. The worst part was the drains, since I had them on both sides and my husband was so grossed out by emptying them and not particularly supportive. Regarding the expanders and filling with saline, I've heard people say this was uncomfortable, but I did not have a problem, just take it slow and don't have too much filled up at once. Best of luck to both of you. Kevin, if I may be so bold, be sure to tell Sue that you still think she's beautiful and the mastectomy doesn't matter or change the way you feel about her. I never heard these words from my husband and that was really the most painful part of the whole thing.

[Heart Sutra]

All of this is so helpful. You all added so much insight into this for Sue and I, we feel very lucky to have you all.

There are so many good points...

Audrey, there is no such thing as being too bold, we are asking for help, and you certainly gave it. SO I'll be bold (or stupid and big-mouthed...whichever lol)

Sue is beautiful, and I never considered her right breast to be the main attraction. I can only try to understand the emotions involved for a woman, and I don't pretend to have any insight at all into it. For me, and probably for many, many men... what matters is the person, the soul-mate.... not a breast (or breasts). Also for me, I was really surprised to hear her ask me if I would still be attracted to her after her mastectomy. I honestly never thought of it in that way until she asked. I always thought of my partner, my baby, and how helpless I felt to not be able to wave a magic wand and have all of this go away... Wouldn't life be easy then?
Your advice is not too bold, and it is not out of line, and is very helpful. I hope I don't sound overly emotional in my response. I write it because it is the truth. I am sorry you weren't told, that shouldn't prevent you from knowing it to be true.

[chrisy]

What a great "name" and speaks volumes.

Kevin, your response brought me to tears. Although some partners do not respond well to the stress of this diagnosis, and it can put a strain on even a good relationship, many (most?) feel as you do - you love the person, not the body part. It feels inconceivable that you would even think otherwise.

I, like Sue, am blessed with a loving husband whose love and support I never doubted. Despite this, I NEEDED, and still need to hear that he still finds me beautiful and still loves me.

This diagnosis, with all the associated physical and emotional changes calls everything into question - it shakes the very foundation of all that we believe to be true. We all - patients and caregivers - suffer most to see our loved ones hurting.

In the midst of all this, we seek reassurance that something is still right with the world. Having my loved one tell me AGAIN that he loves me helps put my world back in order.

Thank you for sharing.

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,