How do I care for my relative who is having a mastectomy today?

[Scrivener7]

One of my loved ones is having a mastectomy today. She will be coming home tomorrow and I will be caring for her and her family for the next few days.

I have no idea what to expect, and looking around the web gives no clarity.

For anyone who has had one, what is the day after the mastectomy and the following few days like?
What did you most want to do?
What was the most difficult thing to do?
What helped you the most or gave you the most relief or comfort?

Any suggestions would be very, very welcome.

[cilla4progress]

1. KnR

[vlyons]

2. Ther day after is rather depressing

Tell her how much you love her, and you're so happy to have her in your life. Tell her that whatever her follow-up med stuff is, be it radiation or chemo, that you have her back. You'll go with her to her Dr appointments if she wants you to.

Cleanliness and wound care is important. That means changing any wound dressing, as needed. Washing the wound site, and applying whatever topical cream the Dr has prescribed.

If she wants to wear a prosthetic, tell her to wait until the wound has had some time to heal. Her Dr's office probably has a list of where she can go to get fitted for one.

Some loose fitting tops will be more comfortable.

[Scrivener7]

3. I can't thank you enough.

The doctor is likely to tell her how to keep it clean, right? Is the cleaning painful? Anything I should avoid while doing it?

How difficult is movement likely to be? Will she likely need help to get in and out of bed? How bad is the pain of the acute phase and how long does that last? I know she'll have drugs, but there is no info out there on what the post-op pain is like.

She's going to be reconstructed after a few weeks, so prosthetics probably won't be an issue.

She'll have drains. Is there any trick to handling those?

Vylons, really, thank you.

[vlyons]

4. The Dr's nurse will tell her how to dress it and keep it clean

The nurse will probably give her a take-home something to read, and you should read it too.

Movement will probably be sore. Stretching and reaching with the affected arm may be difficult. So retrieving stuff that is high up, you can help her with that. Just tell her not to be shy about asking for help -- especially personal stuff like wiping after the toilet use. Does she have a shower chair? Getting in and out of the tub is probably too much.

Would she like to go to the hair salon for a shampoo and style?

She will tell you what her pain and soreness is. Getting sleep is important. So no caffeine after lunch time.

I didn't have drains, so can't advise on that. Her take home reading will probably describe how to handle that.

[Scrivener7]

5. Thank you again. Shower chair! Of course! Great idea.

And I never would have thought of the salon but what a nice thought.

Of course you are right about literature. It didn't occur to me.

Seriously, this is so helpful.

[TNNurse]

6. I was allowed to remove my dressing and take a shower the day I came home.

She will probably have a drain that goes to a bulb like container for emptying. My husband got in the shower with me at first because I was weak and could not hold the drain and wash myself. There will probably been some sticky stuff from the antiseptic they used on her skin. We got a chair for the shower (which we both used when we had our knees replaced). I made a lanyard type thing with a long shoestring and and safety pin to secure the drain container so I could take a shower by myself. The lanyard around my neck gave me both arms to use and using the arm on that side is good from the beginning. Google "arm exercises after mastectomy", there are videos. Also you can Google "post mastectomy care". She may come home with printed instructions as well.

The wound itself is not terrible painful since they do not cut much muscle. They do cut nerves so there will be areas of numbness. Assure her those will most come back, but it takes a long time. My drain was huge inside and it was painful so I avoided touching that skin as much as possible.

I did not want to look at my incision, but it was the right thing to do from the beginning.

Tell her, a 10 year survivor (diagnosed 3/19/12) is thinking about her. She is lucky you are so concerned and want advice. Make sure she drinks fluids and let her eat any damn thing she wants.

[Scrivener7]

7. I will definitely tell her you are ten years out and wishing her well. That is so kind of you.

Looking at it right from the beginning I imagine is difficult but I can see why it would be the right thing to do. I'll look at the drain and see if your description of the lanyard thing makes sense to me. I may PM you after if I need some more info. I just noticed there is a bench in her shower, so that's good news.

I definitely will look for the arm exercise videos.

SO glad to hear that the wound is not too painful. I haven't found anywhere where someone came right out and said, "It's OK" so I was wondering if that meant it was really horrible. Also good to hear the feeling will come back.

Thank you for the great advice. I really appreciate this. Between you and vylons, I'm beginning to feel less lost at the prospect of her coming home tomorrow.

Where would we be without DU, right?

[TNNurse]

8. Please message me any time with questions.

There may be a local support group as well. It is a very hard time.

[Scrivener7]

9. Thank you.

[PlanetBev]

10. I underwent a mastectomy on March 10th

I still have the drain in and am still on antibiotics. The reason is I have a defibrillator on the same side (right side) as the mastectomy and the doctor was worried about infection around the defibrillator. They’re going to start reconstruction in about a month with an expander and “gummy bear” implant. It took me five days to take a shower because I didn’t want to see what was under the bandages. They did a skin-sparing procedure, so I realized what it looks like now is only temporary. I got these clear, see through, waterproof surgical bandages to keep the drain in place when I shower. Got them from Amazon and they work great! Make sure your relative eats fiber, fruits and veggies and takes stool softeners because those pain killers can cause some big time constipation.

I had Ductal Carcinoma In Situ and after two lumpectomies, they just couldn’t get clean margins. Kind of weird because it was Stage 0. It just involved more ducts then they originally thought. I had some bad days when I heard they had to do a mastectomy, but the good news is that the final pathology showed that it was non-invasive and had no lymph node involvement.

I’m 71 and feel a lot worse for younger women with invasive disease. I’m also grateful that they have made so many strides in catching cancer earlier stage and they do amazing reconstruction work now. The outpouring of love from friends and family has been amazing. My warmest wishes to your relative and to you for taking care of her.

[Scrivener7]

11. I have a mean tibouleh recipe that ought to take care of the constipation.

I'll get the ingredients this morning. The clear bandages for showering are a great idea.

She's coming home today. They were able to do it without a spacer. They just put in a temporary implant, which I imagine will make it more comfortable till the permanent reconstruction.

You are still in the middle of this!! It must have been difficult to be ready for a lumpectomy and be told you needed a mastectomy instead. I thank you so much for these great tips, and I wish you so well on your own recovery. Be well, and stay well, and thank you.

[PlanetBev]

12. Thank you!

Actually, I went through two lumpectomies and they couldn’t get clean margins. Waiting for the pathologies was unbelievably stressful.

DCIS is a strange cancer. I was a Stage 0 and needed a mastectomy because they couldn’t catch up to the bad cells. A friend of mine who had Stage 1 had a lumpectomy and they got clean margins at the first try. Yet, they found a small spot of cancer in her sentinel node and she had to have 10 more nodes removed and radiation. I’m so grateful my cancer stayed in the ducts and not beyond.

I’ll look forward to that tibouleh recipe!

[Scrivener7]

13. Here you go!

https://www.yummly.com/recipe/Tabbouleh-981678

I triple the wheat so it's more of a wheat dish than a parsley dish. And I love lemon so I use the zest of the whole lemon and add lemon juice to taste. Usually two lemons' worth. I add a diced cucumber, too.

Enjoy. And again, I can't thank you enough.

[PlanetBev]

14. Oh yum 😋!

Thank you so much. I love Middle Eastern food and eating right is so much better than those over the counter laxatives they push in every other TV commercial.

Hugs to all the folks who are experiencing health issues and to all the great care-givers out there.

[Scrivener7]

15. Keep me posted on your own recovery. Best to you.

[PlanetBev]

16. Thank you, I will

I should be getting the drain out this Thursday. I hate this thing. Then, I can move forward to reconstruction!

[Scrivener7]

17. Tell me everything about the reconstruction when you have it. My sis is having the

one where they take the tissue from her abdomen. I imagine that is going to be a more involved recovery.

She seems to be doing very well. They tell her they will not have the results on the removed tissue for a week (!) so we won't know till then about chemo and radiation. She is nervous about those results, understandably.

I am thinking about you, and so glad there is someone just a bit ahead of us that we can talk to.

[PlanetBev]

18. I'll definitely keep you in the loop

Looks like I’ll be getting the drain out in a few days. I hate being tethered to this thing. Usually they take them out when the fluid is down to 20 cc’s, but in my case it has to be down to 10 cc’s because the doctor’s concern about infection around the defibrillator.

The reason I’m having the implant instead of the abdomen flap surgery is because the flap surgery can take up to eight hours and the implant about 1 to 2 hours. There’s no way they’re going to put a 71 year old women with a defibrillator under for 8 hours.

I am thinking about your relative and I know how stressed out she must feel right now. Waiting for the pathology is the worst part. Every time the phone rang, I would jump 10 feet. I will continue sending my best wishes to her.
♥️ 🤗

[Scrivener7]

19. Hey, Bev! How are you doing? My sister's drain came out today.

How about you? Are you finally drain free?

The followup appointment was very positive but we're still waiting to hear if she'll need chemo.

But it seems like the worst is behind her until the reconstruction surgery.

[PlanetBev]

20. Hey Scrivener 👋

Thanks for asking. I still have the drain in. It’s down to 15 cc’s, so I’m thinking Tuesday or Wednesday it comes out. It’s been three weeks, but I heard that’s not unusual for a drain to stay in that long. Once they start on reconstruction, I have to assume the drain will go right back in.

Hope she can move forward without chemo. 🤞🏻

[RobinA]

21. I Had Drains

for that long. I thought it would never stop. The drains were the worst part of the surgery. The incisions were no problem. I had tape on mine and it was allowed to fall off when ready. With the tape there was no real wound care, as the wounds are not exposed.

[Scrivener7]

22. Bev! How are you doing?

[Unwind Your Mind]

23. Marking to read again later

My younger sister has an appointment today and we should find out when her double mastectomy will be scheduled. Mama and I will be taking care of her along with an assortment of other helpers.

Thank you to everyone who shared here

[Scrivener7]

24. All these suggestions couldn't have been more helpful. I wish

huge luck to you and your sister.

My sister is doing fine all these months later. They got it all. She was planning an extensive tummy tuck plus reconstruction plus I don't know what, but I don't think she realized how painful the recovery would have been from that. She seems content for the moment with the implant.

It was so comforting knowing there was a knowledgeable community here to turn to. What a godsend!

You take care of yourself, too. Care giving takes more out of you than you ever think it is doing at the time.

[Unwind Your Mind]

25. Thank you

I’m feeling rough today, it’s so hard to see her going through this

[Scrivener7]

26. Hang in there. Did they schedule the mastectomy?

[Unwind Your Mind]

27. I'm waiting to hear right now

The appointment started an hour ago

I told her about this thread and your sister, it helps 🥰

[Scrivener7]

28. So glad! The women who responded made an enormous difference in my

sister's experience and in mine.