Mastectomy advice needed!!

Hey GingerLulu, thanks for your quuestion. I'm sorry to hear that you've not had great communication from your team. Have you been allocated a Specialist Nurse?

I had a mastectomy in April 2024. My hospital is similar.  I did call the MacMillan nurse helpline in my early days and they were really helpful in answering my numerous questions. 

I answered another post earlier today, there may be some bits that you find relevant. The link is below:

 https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/questions-about-diagnosis-and-treatment/289157/starting-to-feel-real-now/2114650 

I got my heart shape cushions here:

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://shop.cancerresearchuk.org/products/post-surgery-heart-comfort-cushion&ved=2ahUKEwi7wJyCgvSKAxXqWkEAHd3_DvQQFnoECBUQAQ&usg=AOvVaw2-d2C1PMHcWGi0M7WyEizz

I had one drain but each surgeon may do things differently, I think. I used a cross body bag to put mine in. You may already have something that you can use, I didn't buy one especially.

As for sleeping, this is what I found most uncomfortable in the early days after surgery. I found lying flat really uncomfortable.  I bought a wedge pillow from amazon, which helped. But next time, I'll definitely be sleeping in a reclining armchair in the early days.

Feel free to ask any more questions,  I'm happy to answer and I'm sure others will too.

Wishing you the best of luck with your surgery and beyond. Peace

Hi there have you had a pre op or nursing 121, I’m having a mastectomy next week and this week I’ve got the appts to go over everything. Might be worth phoning your bcn x

Thank you for the advice - very helpful! 

I’m not aware that I’ve been allocated a specialist nurse? I will phone to ask though. 

We don’t have a reclining chair so I’ll see if I can get a wedge cushion before Friday. 
x

Thank you - I’ll give the clinic a call now. Good luck next week x

Hi GingerLulu,

I had a mastectomy without reconstruction at the end of November. I didn’t have drains or dressings, just medical glue over the wound, and was back home mid afternoon on the day of the op.

I bought in advance a heart shaped pillow and a small cushion to go on the car seatbelt but honestly didn’t really need them (think I found them by googling ‘mastectomy pillow’). An ordinary cushion or puffy coat could protect your wound in the car instead.

I am normally a side sleeper but propped myself on pillows and cushions in bed for about the first couple of weeks. I did move onto our sofa bed but that was largely so I could listen to the radio/ podcasts or read without waking my husband if I was having trouble sleeping. Normally our cats sit on me in bed before we put the lights out. I kept them out of the room as I didn’t want the risk of them doing any damage to my wound. We all back in our normal positions now.

I’m doing well now and back to running (building back up slowly) and work.

Very best of luck for what is ahead!

Hi, 

Are you having a mastectomy with or without a reconstruction? I only ask because I had dcis and had a mastectomy and immediate reconstruction and have to say that most of my contact prior to the operation was with the plastics team who were doing the reconstruction rather than the breast cancer team. I think the mastectomy is much simpler for them than doing both at the same time. I echo the others and suggest contacting the team. Every time I've contacted them they have been great at quelling fears, worries and answering "silly" questions.

Have you had your pre op assessment yet? You will be given details then with the practicalities on the day. Also are you using the NHS app? I have found that letters and so on take a long time but everything is on the app along with appointment dates etc. If you have anything you would like to ask, please do. It is such a stressful time and the more you talk to people who have been through it, the easier it is. 

For me I only had one drain which was removed 3 days post op but I was in hospital for 5 days so I never had to worry about looking after it. I never had any special pillows or anything, just piled a heap up so I could sleep on my back and slightly reclined rather than flat. 

Hi gingerlulu

i had a right mastectomy on 13th Dec  the hospital gave me a bag for my drain also a heart pillow which was helpful for the car journey home . I bought just a couple of extra pillows for at home to keep me propped up in first few days . A lot my questions were answered at my pre op I’m assuming you’ve had yours as your op is v close now . Hope all goes well with surgery and you make a good recovery .

Hi I went for routine mammogram and called back for biopsy 12th December.  I gave DCIS and am having a mastectomy plus reconstruction on my left breast on Tuesday.  I have had lots of contact and help from the breast care clinic. They've been lovely and explained everything. 

I am so worried about the op though, crying my eyes out some days and then really positive the next.

Hi Moz61 

my operation was the same as what you are going to have it’s such a daunting time I was exactly like you good days bad days it’s such a rollercoaster but I’m sure all will be well I’m now 5 weeks on from op and healing well  but it’s certainly a working time your mind is just going mental well mines  was take care 

Hi 

Did you have reconstruction and does it look ok? I had to have a mastectomy as have small boobs!

How long before your drain was out, how long before you went out for a walk. I usually walk 3-5 miles every day and go to the gym a couple of times a week. 

Do you work - if you do how long did you need to take off - I work from home so was hoping to go back after a couple of weeks.

My head is a mess as been such a shock - and it's more of a mess I think as it's DCIS (high grade) and non-invasive. 

Thank you