Recovery time from double mastectomy

Hi bumblebee,

I think part of the answer depends on if you will have any reconstruction and what type? I had a double mastectomy with aesthetic flat closure so no reconstruction and spent two nights in hospital with drains following the surgery. I live alone and far away from family, so my mum came to stay with me for 4 weeks to help out with carrying my shopping, doing housework, etc which was a big help. I felt very well in myself to do day to day activities like cooking and walking, but I had to avoid any strenuous or repetitive tasks like carrying shopping, vacuuming, lifting heavy things (like children!) for 4-6 weeks. At 6 weeks I was ready to start back at the gym, all-be-it gently at first.

My sister also had a double mastectomy but opted for immediate reconstruction with implants. She spent one night in hospital and was discharged with four drains which she kept for a week (depends on the output level as to how long they are kept in for). The drains are not so bad, but are a bit of a pain as they are always in the way and they make it harder to get on with your daily routine and things like showering. Her recovery time was more around 8 weeks until she felt more like herself and she started to lift things. 

For both of us, we had minimal pain. My sister had a little bit in the first week as her body adjusted, but it quickly disappeared. We both slept upright for the first week or two, and it was trickier for my sister to position her drains when she went to bed (she slept separately to her husband and put the drains behind the pillows). It was nice to have lots of pillows in bed, and my sister used a pregnancy pillow that she found very useful at night and in the day for extra support.

If you have small children, I think it would be good to have someone on hand to help out around the house and lifting them for at least 6 weeks. It may seem hard and I know it's not ideal, but it's important you take the time to recover and heal well. Hopefully then you will avoid any problems in the future and you will soon be back to your normal self.

If you have any other questions, don't hesitate to ask! Otherwise, wishing you the best of luck with everything!

Hello Rose222, I also am looking at getting the double mastectomy with reconstruction as I am Brca 1 positive, can you tell me the type of pain medication you were put on. It’s amazing you had minimal pain. I had my tubes removed a few months ago with key hole surgery and definitely experienced pain!

Hi NatureLover,

For me and my no reconstruction, I took ibuprofen and paracetamol in the hospital (I didn't feel I needed it, but they wanted me to 'prevent' the pain) and was prescribed the same for at home. I stopped taking them as soon as I got home to see if any pain materialised, and low and behold nothing came so I never took any more! I was also prescribed acupan which is stronger, but I never needed it. I was quite surprised to be honest at how little pain there was!!

For my sister who had implant reconstruction, she had morphine when she was in the hospital and then ibuprofen and paracetamol at home. She needed the morphine at first and the pain killers during the first week, then the pain subsided and she sporadically took paracetamol after that. 

I also have a BRCA1 mutation and am 37 so have not yet come to have my tubes/ovaries removed, but it will be on the table in a few years. Did you have only your tubes removed? For your ovaries, will they be left in forever or will you have them out in a few years? Aside from the pain, are there any side effects after the surgery?

Thanks :)

Hello Rose222 Thank you so much for your response I really appreciate the time and advice at this stage :) very kind of you X

Hey Rose222, that is amazing how little pain you had. Ahh yes the Brca 1 club, we seem to be on a similar path just doing surgery the other way around  I’m 42 and decided to go on the protector trial (if you want me to send you a link to the details let me know). Within the trial I chose to just have my tubes out first, I want to try and get close to 50 before I get my ovaries removed. After the pathologist checked my bits removed from surgery I was so relieved to hear they found no signs of anything. 

Your sisters experience sounds like mine with my pain, I needed morphine after surgery, was sent home with ibuprofen and paracetamol. After 4 days I developed a mild infection and needed antibiotics and codeine as my pain got worse. I found myself not wanting to take them then being uncomfortable and wishing I had taken some sooner!

My surgery was key hole so I’ve small incisions, personally I think it’ll be a walk in the park for you given how your mastectomy went. If you’re getting your ovaries removed at the same time recovery will take longer. I would make sure all the hormones you’ll need replacing will be planned and prescribed by your healthcare team. The only side effects for me were from the drugs they gave me during surgery so constipation for a few days after and some tension from the stress.

 I’m here if you’d like to know anything else.

Marie

Thanks for posting this question bumblebee, I hope you’re able to get the support you’ll need to go through this and be there for your children for a long time to come.

Marie

Thanks Marie, that's all good to know! The Protector study has been mentioned to my sister (as she is a few years older than me) so I know about it. I live in France, so I haven't heard of a similar study here yet, but I will definitely ask my oncologist/surgeon if tube removal could be an option as it sounds like an easier transition since I'm a bit hesitant to take any hormones after having breast cancer so I really like the idea of keeping my natural hormones! 

If you don't mind me asking, what will drive the decision as to when you have your ovaries removed? Is it linked to when you go through the menopause?

Thanks :)

Oh lovely you live in France. My decision for when to remove my ovaries is certainly linked to menopause. I want to see how my body reacts to this surgery, some medical advice mentioned I might go into early menopause anyway. If so I’ll have the surgery sooner, all in all I would prefer to let my ovaries do their job as long as possible. My consultant is sceptical about the benefits but then he is a man and thinks menopause is just hot flushes!

Hi Bumblebee, I hope you dont mind me jumping on your answer. My best friend is facing a double mastectomy due to the BRCA2 positive gene too, she will also face a hysterectomy, with everything removed, soon too.

I want to get together a care package for her, can I ask what you wish you had etc. She has a full body pillow. I was thinking creams etc. I am getting her a bed tray, for her ipad, magazines, books etc also her food, I presume she will be in bed for  alittle while. The tray can also be used downstairs on the sofa I guess too.

Her last (we hope) chemo is this Friday, then it will be a scan, appt with the surgeon and then the surgery, we are presuming before christmas. This year I think we will have christmas a little later in the year.

Reading your recovery time etc I feel slightly more positive about my best friends, we were thinking at least 3 months, hopefully things will go right fo rher and she will bounce back. 

Oh I believe they will do the reconstruction further down the line, but we dont know yet until she sees the surgeon. 

I am really pleased you had minimal pain, I am hoping my bestie gets through this with minimal pain too, her journey so far has been horrendous and we have really struggled with it ourselves let alone how she has felt. But the end is near, and we cant wait. After the chemo and surgery she has an intense 3 weeks of radiotherapy. But we are nearly there <3 

Take care and thank you for reading x

Hi Jue, 

Sorry to hear your friend has been having such a rough time of late. It is great that she has such great supporting friends around her to help, it really does make a difference and hopefully things will soon start to get easier for her. For me, there were no items that I really 'needed' aside from some little heart pillows which I was given at the hospital for comfort (although a full body pillow sounds better!). 

What helped the most was people being there to physically help with things around the house when I needed and also just to chat normally without always feeling sorry for me. Practical things like cleaning, laundry, carrying my shopping, freshly prepared meals and juices and being available to go out for walks and fresh air were great. If your friend is at the end of chemo, some extra hands around the house, and fresh meals would probably go down a treat. It's important to nourish and hydrate well after surgery and chemo, so some homemade soups, herbal teas and fresh juices will help the recovery process.

Depending on how your friend is feeling about her reconstruction options, one thing that could help to put her mind at ease/prepare her is suggesting an appointment at a good bra shop before the operation to get fitted with a comfortable post op bra and prosthetics (if she wants them). My sister who had immediate reconstruction found this really reassuring to know that she had a good selection for post op and felt better prepared for the op because of it. The best one for her was a zip front bra from the Anita care range which was super soft and they have a good store locator on their website which lists the stores that rate highly for breast care (they sell all types of bra, not only Anita range).

I hope this helps and I wish your friend the best of luck with her next steps! x