Mastectomy recovery questions

Going through breast cancer treatment Surgery
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Hello,
I have just finished 6 rounds of chemo and am due to have a single mastectomy (no reconstruction) on 16th April. I have been so consumed with getting through chemo (I found it pretty tough) that I hadn’t really processed surgery! I’m seeing surgeon on Tuesday so will be able to ask more Q’s then but there were a couple of things I’d love to hear peoples experiences of; (if it’s relevant I am triple positive, also am having quite a few lymph nodes removed as previous biopsies had shown cancer was there (think she said 5 or 6?) and am 43, slim, previously very fit and active and healthy)

  1. what is recovery like? How long were you immobile for? When could you use your arm for things like walking dogs etc when could you drive again? How did you feel after surgery (tired? In pain?) and for how long?

  2. what things helped you recover quicker? Diet? Exercises?

  3. when do you think is reasonable to return to work after surgery? For context I am a secondary school teacher but need to return for financial reasons asap having already been off work for 5 months so was hoping to go back to work on a phased return about 5 weeks after surgery - I will have to go off again for radiotherapy but if I can earn in between it will help!

  4. how did you manage the drains? I am scheduled for day surgery so home with a drain but not really sure what this involves etc

And lastly I really want to get a tattoo on the mastectomy site (obvs once it’s healed etc I know it can be a couple of years) and would love some inspiration if anyone is willing to share theirs or their ideas. I also want a tattoo on my wrist as a ‘memento’. Small, simple but a symbol of what I am going through/went through - again would love to see any ideas/ inspiration. For context I have no tattoos at all at the moment!

Thanking you in advance xx

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Hi @worried1 - I know exactly what you mean about being immersed in current treatment , you just want to focus on taking each day at a time so it’s hard to look ahead to future treatments until the time comes
I recently finished chemo but had surgery first and am continuing with herceptin infusions as I’m her2 pos …

I had a single left sided mastectomy without reconstruction in September as a day case .
My experience was that I was only in mild discomfort when I came round as I’d been given a nerve block in theatre which lasted until well into next day . My surgeon opted not to fit me with drains so unfortunately I can’t advise on that aspect .
I’d recommend getting a seatbelt protector for journeys in the car after surgery as the seatbelt can rub, or alternatively get a little mini cushion to pop underneath it , I also found a little cushion to put under my arm pit on mastectomy side really helped take the pressure off as I’d had my sentinel nodes removed .
A v shaped cushion will help with supportive sleeping as you’ll need to sleep sitting up
For a few weeks … and get a good front opening post surgery bra . Cancer research do them as do m and s and lots of other sites . Nicola Jane is a good site too …

For the first two weeks I felt exhausted , but after a couple of days started going for short walks … I started doing my arm exercises the day after surgery (you should be given a leaflet with these on ) … however apart from pottering around at first in the first couple of weeks and doing your exercises , don’t push yourself . A short walk each day will blow the cobwebs away but remember you will have had major surgery … drink lots of water to flush the anaesthetic out and rest , I took lots of naps in the first couple of weeks …
I found it difficult to use my arm much for a couple of weeks and you are advised not to lift anything heavy or lift it above your head for 6-8 weeks
I was advised not to drive before 6-8 weeks and actually started driving again 6 weeks after my surgery .
Going back to work is personal really , if you feel well enough 5 weeks after surgery there’s no reason why not , I went back to work 4 weeks after surgery with my husband driving as we run our own business and I couldn’t afford not to work anymore … it was only short term until
I stated chemo …

I’d also love to have the site tattooed! I’ve seen done beautiful mastectomy tattoos online so you may find lots of inspiration if you google x
Best of luck with your surgery xx

:star: Arty1 :star:

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Hi @worried1 :wave: I haven’t had a mastectomy so can’t comment on that but I have had a lumpectomy with node clearance & therapeutic mammoplasty 5 days ago & I have a drain. There’s no pain because I am managing it with paracetamol, ibuprofen & the odd codine. But it does all feel very swollen and at times uncomfortable. Mostly the uncomfortableness & strange sensations are in the armpit area from the node clearance. I’ve got numbness in my armpit & upper arm & everything feels a bit tight & weak. I’ve been doing the exercises though and that helps. It’s all manageable but it’s quite clear it’s going to take a while. Like @arty1 mentioned I am also very tired and was advised the same sort of things about not lifting or doing much for 4-6, no driving for at least 2. Now I was quite worried about the drain but it’s very hassle free. It’s on a long tube coming out of me and I can’t feel it. It’s held in with a stitch & has a dressing over it. The bottle is in a fabric bag with a long handle so I can carry it around easily. I just rest it on the floor when I’m sitting down or in bed. Every morning I text in the amount in the bottle into the hospital and today I went and had the bottle changed at the hospital as it was getting full.

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Hi - I’m 5 1/2 weeks post surgery - mastectomy and full node clearance. I found the breast area ok - sore obviously but ok with paracetamol and ibuprofen. In the second week the pain in my underside top arm was horrid - nerve damage evidently- as mentioned a heart shaped cushion under the arm helped - felt like a burn - strange sensation- this has settled down.
I drove after two weeks - not far but felt confident- sure this is very personal - and was walking up to 30-60 mins - now doing 5-10 miles a day as training for the Moon walk! Seemed a good idea at the time but with chemo starting in the next fortnight??!! I did it in 2005 - obvs will be a challenge but if I can’t finish my daughters who are also doing it can carry the flag!
Going to watch the Breast cancer now talk on exercise on Tuesday.
Good luck with it all - we will get through this.
Any tips on the chemo? Having very mixed responses re cold cap. Seeing oncologist on Thursday with a list of questions!!!
Be strong :muscle:

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Hi! I had an unilateral mastectomy performed with reconstruction (implants) on Monday. So hopefully my answers might help but I understand that with no reconstruction, it is less painful:

  1. My left arm 6 days in, is doing ok, I have managed now to make my own ponytail and to be more or less independant around the house. I have always been able to use my right arm normally (mastectomy was performed on the left breast). I felt tired and I am still tired when I go on longer walks like a did today, but it gets better as the days pass. I am been in pain but very manageable.
  2. I have been eating really healthy; I try to go on walks, pushing a little more everyday but listening to my body. Reading a lot, writting as well. Keeping by all means possible active but also having rest time.
  3. Cant really say yet… I can do home office, so I have been trying to answer emails and got some work things done, but all in the computer.
  4. Managing the drains has not been hard. I bought a t-shirt with inside pockets that has been really usefull. The drains just need to be emptied 3 times a day and it is not complicated. I am sure you will manage just fine. My husband uses gloves and has alcohol wipes to clean the opening of the drain, but that is all.

I hope that the above is usefull.

YOU GOT THIS!

I will update on how I am doing post mastectomy further down the line…

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Thank you so much for that info - I hadn’t even thought about bras, cushions or sleeping so that is really useful - I’ll get on Amazon asap!
Did you find it very painful after the surgery?
Luckily I can walk to work if needed so drivings not essential from that side of things.
How long did they keep you at the hospital? I think I’m morning surgery as have to be there by 7.30am but wondering roughly what time I’ll be allowed home (our hospital is an hour away from home so my husband will either have to find something to do in the town for hours or go home and come back for me!)

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That’s really useful - thank you!
Our hospital is quite a way away (an hours drive each way) so think they mentioned at pre-op a nurse might come out to me to empty the drain. How long do you need the drain in for?

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I can’t comment on the cold cap as didn’t bother with it - my hair is (was!) so fine I just didn’t think it would work for me and wanted to limit the time I was actually on the ward! A couple of people I know have had the cold cap and although their hair thinned they did keep most of it!
I did get my eyebrows tattooed (I think it’s called powder tattoo or something) before hand so would recommend that as with no hair my eyes became the focus of my face and I wanted eyebrows still! Interestingly despite losing all my body hair (bonus of no shaving!!) I kept my eyelashes right up until last session when bottom lashes in one eye came out but not the other!
I found chemo tough - the first few cycles were awful for me (felt like my whole body was shutting down and I actually thought this is what it feels like to die) but they changed my doses and eventually the drugs themselves and do last 2 were much more manageable. But I think it’s different for everyone - some people I know felt a bit rough/tired but were mostly ‘ok’ on it.

My big top tip is suck ice cubes or a ice lolly during the infusion - this really helped me with the taste loss I had in first cycles - the theory is it works a bit like the cold cap by freezing your taste buds thru get less affected.

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Thank you so much for replying! Does the drain sort of hang out? How big is it? Can you see it through clothes etc? How long is it in for?

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@worried1 I wasn’t in pain at all as the nerve block is been given was very effective , it was actually under my arm where my sentinel nodes had been removed which hurt but not in an unbearable way , just discomfort., also it was also strangely numb there and this still persists but is improving .

I went down to theatre about 9 am and was discharged from the day surgery unit at 5 pm , I had to walk from day surgery which is on the 3 rd floor , all the way through the hospital and across the car park ! I was quite impressed with myself :see_no_evil:

It’s all down to how well you are after your surgery as to what time you can go home . I felt ok , just tired , emotional and a bit battered especially as I hadn’t slept the night before . There is nothing like going home to your own bed x

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Ah yes it’s perhaps different in different areas (I only live 20 minutes from hospital) and reading the other comments it seems there’s different types of drains too. I also went in at 7.30am on the day of the surgery but was last on the list and went to surgery at around 2pm. I ended up be kept in overnight because I took a while to wake up from the anaesthetic and it also made me vomit. I was happy to stay in though as I felt so rough it was reassuring to know that the nurses were looking after me rather than my mum. I’d never had an operation before so had no idea what to expect. Was discharged the next morning though so that was good :blush:

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Yes, the drain hangs out from my clothes. I just hold it with by hands or if my pants have pockets I would put it inside the pocket or in the t-shirt.
I also did some amazon purchases like:

  • Dry shampoo. Very helpful as you wont be able to shower will you hace your drain.
  • Drain t-shirt: Amazon.com
  • A good book. I ready a lot during pre-op
  • candy. I had read that after the mastectomy and having gone throught general anesthesia (with intubation) your throat is sore.
  • Mastectomy pillow. I have not used it a lot, but it was very useful for the drive back home after being in the hospital.

I was scheduled to be in the hospital at 7:30 but they first did the gama test to localize the sentinel node and started my surgery at 10:30 and was done in 2 hours (with reconstruction).

Something that I wish I had given some thought prior to surgery is bras. I was not allowed to wear one, which was fine for the left breast (the one that had the mastectomy+reconstruction) but the right breast did not have any support. I opted to buy some nippies for such breast until I could wear a bra again. There are also some unilateral bras in AnaOno that you can check out.

Hope that it is usefull!

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I am 4 weeks post mastectomy without reconstruction and full node clearance. I was quite tired for the first couple of weeks. Pain wasn’t too bad at all, more painful from the node clearance which my surgeon had warned me about. Limited movement in my arm on mastectomy side to start with but gradually improving with the exercises. My pain was worst under arm and down inside of my upper arm. That was like nerve pain and feels better today. I did have some cording but that seems to be gradually improving now too. I drove after 2 weeks and am back handling and mucking out my horses now although not been back on board yet. I did over do the exercises in my pursuit to get my arm fully functional again and made myself feel sore so backed off and everything settled back down. I can’t advise on the drains as my surgeon didn’t use any. I stayed in overnight as my surgery was later in the day. I felt quite wired straight afterwards and couldn’t sleep overnight but crashed when I got home and slept for hours!!! Front fastening tops were a must for me to start with as couldn’t get my arms up for overhead stuff and easy to put on shoes. Best of luck with it. I found myself suddenly terrified with the prospect too having been so focused on getting through chemo and had lots of tears on the morning before I went to hospital but once you’re there it’s so busy with people in and out prepping you that it’s all done and over before you know it.

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Hello @worried1

A mastectomy is frightening. I know, I had one in January 2021.

I found it the easiest part of my treatment - I knew I was having chemo and rads after the op. I was in and out the same day.

It didn’t really hurt - just sore. Nothing paracetamol for a few days couldn’t fix. The drain was a bit of a faff. My hospital gave me a little bag to carry it around. I went out 3 days after my op and used a thin tracksuit top with a deep internal pocket (how it was made to reinforce the proper pockets) to slip the drain in. No one knew - we bumped into some pals whom didn’t know my situation. They didn’t blink an eyelid - I looked no different to them.

I made a shower cape out of a massive Iceland (the frozen food shop) carrier bag so I could shower and even hairwash - a strip wash is not enough for me. I just made sure the shower head was quite low so water wasn’t on the bag’s opening over my shoulders too much.

My drain did play up - it didn’t drain at first. A quick call to my BCN and it was sorted with a few words of advice.

Make sure that post op, the nurses show you how to drain it and let you practice in front of them a few times. If you can, get them to video you doing. I struggled the 1st time at home, just from post op brain, so it’d be nice to have something to refer back to.

It only smarted when I had it taken out on day 7 post-op.

I found a V shaped pillow gave great support at night for back sleeping. Again the hospital gave me stuff - a soft heart shape pillow to help support between your arm and op site.

And they gave me a softie bra and (a bit hopeless at 1st until my proper one) prosthetic.

Front opening gym bras with pockets worked for me. I bought some non-wired ones but have never liked non-wired bras as they give me an awful shape (even when I had 2). My NHS Trust put a pocket in my pre-BC underwired bras (I was back using them within 3 months) and I can request they add to new bras at any time. A wonderful lady on this forum shared that she simply wears full cup bras and, as if by magic, I don’t even need a pocket I can wear ordinary, bog standard bras that keep my prosthetic safe. That has been a game changer.

I didn’t/haven’t had a recon. I wasn’t overly bothered about looking at my chest post-op. The brusing was pretty! It healed quickly - lots of water based moisturiser as soon as advised. I think that when the stitches came out.

I get really lumpy scarring. Not this one - OK it’s visible (only just) and nice and neat.

Do the exercises you are given religiously. Nice little walks when you can. Don’t push yourself too much - listen to your body. You will still be recovering from chemo and that takes time.

I had my mastectomy before my other treatment and was off work for 2 weeks. I worked reduced hours as I felt able during chemo and all through rads. I can’t remember how long I didn’t drive for post op. I was definitely driving 3 weeks later, though it probably was around the 2 mark.

As for tattoos - go for it! Just check it’ll be OK and not risk lympheodema on the op site or side. I say this from experience. In the last 6 months I’ve had 3 fine line script tattoos on the opposite side to my mastectomy as I developed lympheodema about 3 years ago. Fine lines are much easier to heal than full patterns/colours - absolutely no scabbing, itching, nothing in my case.

Just really think about what you want. I’d wanted one for years but could never quite decide what or where. It took by DH’s death and a dream to get my 1st one - nothing I’d ever have imagined, nor it’s placement!

An ex-boss, who had a lumpectomy, had a delicate breast cancer ribbon thing on her inner wrist on her lumpectomy side.

Great long answer - been writing it in the evening sun. Might be a few typos as it’s a bit bright!

All the very best.

AnGELa
x

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Thank you everyone for your thoughtful replies. I appreciate it so much. I’m ordering a mastectomy pillow as we speak!
I have quite (very!) small boobs hence one of the reasons I chose against reconstruction - that and I’d just had enough after the chemo and wanted the quickest and easiest surgery esp as I know I have more treatment to come. So with my little boobs or soon to be boob I’m not too worried about wearing a bra initially as I often don’t but with summer coming and as I have lived out of my chemo outfit of joggers and hoodie for past 5 months, I may need to think about this! Is the front fastening thing because it’s easier to do yourself? Or is there another reason? Did you need the pocket bras straight away for the prothesis? Why is the first one only temporary? Should I be concerned I haven’t been measured for this yet and surgery is next week? Originally I was meant to have surgery before chemo (until they found out I was HER2 positive and it changed) and I had appointments for fittings, etc all booked in, which obviously got cancelled as things changed and now it’s just chemo to surgery (26 days between them) and I feel like I don’t know anything about the surgery or prosthetics!
The drain part is also scaring me a bit - I’m worried I won’t be able to do it myself!

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Don´t worry too much about the drain, if my husband manage… hahah I am sure you will be more than fine. :wink:

I had a visit today with the plastic surgen and the left the drain… So hopefully one more week to go with this.

Besos!

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Hi @worried1

They give you a really soft prosthetic at first. Literally got a few out of a cupboard when they knew what size I needed. It’s soft for a purpose - you’ve just had an op on your chest and you don’t want anything heavy in the area for a bit. At the same time they handed me a lightweight front opening, pocketed bra, little heart pillow (for between your arm and ex-boob side at night) and drain bag.

When you’re healed (couple of monthsish?) speak to your BC nurse about a fitting for a proper one. Ask her when you speak - different trusts seem to have different timescales/processes. I was a DD so needed the weight and shape that a proper prosthetic gives me - the important bit here - in my preferred bra style.

I tell you, that appointment is an eye opener - the couple of nurses I’ve seen for them have eyeed me up and down and pretty much got the match spot on from a roomful in all shapes and sizes, materials and brands straight away. Then it’s been down to me as to which ones I’ve actually come home with - I’m on my 2nd. You are entitled to a new one every 2 (I think) years.

Perhaps being smaller a lightweight softie will be enough for you and become a spare or for gym use - still get a proper prosthetic though.

Front opening bras are easier post op at 1st as you dont have to reach behind to do them up nor swivel them around.

AnGELa x

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I’m also a dd so need a prosthetic , my hospital didn’t offer me a fitting until 16 weeks post surgery , in the meantime I bought a boost prosthetic which fits nicely in a bra without a pocket and is lightweight and breathable .
The nurse who gave me my prosthetic, like you
@Gelbel Just looked at me and handed me the correct size … I was impressed ! I love my nhs one as it looks like my real boob and you would never know id had a mastectomy

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HI @worried1
Like you I am small breasted (36b) Not much to add here as all the advice is spot on. I had a single mastectomy this time last year. Operation v straightforward and like the others no pain just a bit high from the morphine :wink: initially and then uncomfortable for a couple of weeks. Was seeing friends after a few days at home and they all said you look so well. NHS underarm heart shaped pillow was a godsend. I didn’t wear any bra after op as didnt need to and was more comfortable without. Drain was straightforward, seems scary but really its just being aware that its attached to you. I wore dressing gown and put it in front pocket. DIdn’t need to empty mine but diff hospitals do diff things. A year on I have. a very light scar, still debating re a tattoo. Thought might be good idea as I have no feeling on that side. On holidays last year I just went without a prosthesis in my swimming costume - I don’t feel embarassed and nobody said anything. NHS fitting 2 months after op (as area has to heal) was excellent, they are eperienced and she got my prostheisis shape right first time! My advice is wear stripes or tight fitting top to the appointment as they really display symmetry. I dont wear the prostheis that much tho as too heavy, found a soft one my mum had in her drawer when she passed away last year and I wear that, makes me feel close to her xx. Youve got this

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Hi @worried1 I had 3 drains in as I had a reconstruction… the drains kind of get in the way but they will give you a bag to carry to it in. I used to be really squeamish but I got over that going through this!! There will be a plaster covering the site where it goes in (the tube is held in with a stitch or two) and you just need to empty it and measure how much comes out at home until you get down to a small amount and then it comes out.
The cushions mentioned by others for under the arm and scar protection when driving are a must I still use mine 5 months after surgery!

Take it easy and rest through the first couple of weeks, doing your physio drinking plenty of water and you will be fine… you’ve got this, don’t be worried …each step we take is another towards beating this! I waited a while for holding my dogs on a lead but they are good off lead so it wasn’t too bad :heart: