Reconstruction cancelled

[ArtemisiaX]

Hi, like I said to the OP my reconstruction failed, I had to go flat, and like it! They don't tell you the down sides and multiple surgeries. I wish I'd skipped it. Dont know if this helps and sorry if it doesnt. Best luck.

[ArtemisiaX]

Hi, I had to wait to have my reconstruction UNDONE because of Covid, I just went flat after 14 years and the implant was ruptured. In the position of wishing I went flat in the first place! as far as what to wear check out Fantastic Flat Fashions on Facebook. It is a great group. There are other flat groups to encourage and support all of us who wanted or didnt want this. I am growing to like it. It is undoubtedly the healthy, quick healing option. Best luck.

[Sarahinleeds]

thanks, will check. Xx

[SB1610]

Hi Sarahinleeds

Just double check on when you need to start your exercises. I was told the day after surgery and this is what it says on the breast care leaflet I've been given too.  There are more strenuous exercises that you add in a week after surgery so maybe your friend has got mixed up. The exercises are to help make sure you don't get frozen shoulder or lymphodema further down the line.

Just want you to be safe.

Take care, Sue

[Sarahinleeds]

Hi, a similar experience here. Reconstruction wasn't an option due to the virus but for me the priority was the tumours being removed. On Wed I had a mastectomy on one side and lumpectomy on the other. Back in 2 weeks time for results of node biopsies. Nobody was allowed in the hospital with me and the theatre staff were all in protection gear which was a bit scary, but they had warned me. Myself and the other 5 ladies having surgery that day had all been called in 2 days before for covid test including a lung xray, so we had met before the day of the op which helped on the day, familiar faces in the same situation. I haven't got a drain so sound like I am carrying a hot water bottle about with all the swishing. There is no physio available but they have given me exercises that my friend says you start doing a week after surgery, will check this is correct. I may have reconstruction at some point down the line but the soft fake boob the hospital gave me is ok for the time being and I will look into a prosthetic in due course. Good luck to all in these strange and scary times. Xxx

[SB1610]

Hello Simmo and Hew

Sorry to hear about the situation you both find yourselves in. I too have had my mastectomy and immediate reconstruction cancelled but opted to have just the mastectomy on my planned surgery date with a reconstruction planned further down the line. My surgeon said that could take 6-8 months but I'm not sure if that time line is under normal circumstances or Corona virus circumstances.

So I had my operation last Monday - I was the only case through day surgery that day - and the staff had introduced new safety measures. My partner wasn't allowed into the day surgery unit - I had my temperature taken before they let me in and all staff wore gloves and masks. I was home the same day - I had my dressing off on Monday and my drain came out yesterday. And other than a bit sore around my drain wound and not quite the range of movement I'm used to in my right arm : ie I can't fully straighten it above my head - I'm feeling more or less back to normal.

Today I'm dressed in my usual clothes and thanks to a post surgery bra and foam prosthetic from M&S you wouldn't know I was one boob down or which one is the fake! 

Hew - if you are unsure as to what you might look like ask your BN if they can show you photos. At my hosp they had quite a portfolio of different situations and reconstructions. I also googled some images too - I know googling isn't for everyone but it might help set your mind at rest. Not having an immediate reconstruction wasn't my first choice and I do remember saying to my BN that 'I absolutely didn't want to look like' that as I pointed to a picture of a mastectomy patient I've actually come to terms with it and, for me, getting the cancer out was the absolute priority.

So I hope you get a date soon Hew and Simmo I hope ur treatment is side effect free.

Take care both of you

Sue x

[Simmo]

Hi Hew,

I can completely relate to your situation as the same has happened to me and I’m devastated! 😢 was meant to be having a mastectomy with immediate reconstruction on Tuesday the day before my 50th birthday.  It’s been cancelled and I’ve been offered a mastectomy only.  I’ve refused as waking up flat after surgery is just not an option for me.  I’m also terrified to have surgery in case I catch the virus and die.  Sounds dramatic I know but my surgeon couldn’t give me any guarantees.  So I’m starting hormone therapy for now.  I collected my prescription today.  Side effects sound grim! Hoping I don’t get them.  But fingers crossed it buys me some time until we are out the other side and reconstruction surgery recommences.  My bc nurse said while I’ve still got cancer it means I stay top of the list.  If I have mastectomy only I could wait years for reconstruction like my sister whose still waiting nearly 3 years! 
make sure you explore all options.  Wishing you best of luck

Simmo xxx

[Shi]

Sorry text gremlins out and about that should have said draped scarfs (after the patterned tops and dresses) bit of my original post 💕💕✨✨Shi xx

[Shi]

HEW, I’m sorry you find yourself on here, but glad you’ve reached out to the forum. I am sure others will be along to help ❤️ I had a therapeutic mammoplasty so currently one side smaller than the other and I’ve found the soft stuffing from a cushion is great, it’s not heavy and can be shaped well, also pattern tops or dresses have been good and a draft scarce ❤️But I do wear plain clothes too now, because unless you point it out to people they really don’t notice ❤️ It’s just obvious to us. I did look up a video of my op before it happened so I knew what would be happening during op, but that was my choice, googling things is not generally a good idea about bc, but that’s everyone’s individual choice. Please speak to you bc nurse you have been allocated, they are there to listen and support you every step of the journey ❤️And they will. 💕💕✨✨Shi xx

[HEW]

Hello,

I'm sat here hoping I get a call for surgery I don't want. It is such a surreal situation to be in.

I'm 34 and got diagnosed with high grade DCIS at the start of March. The plan was a mastectomy of the left breast with reconstruction at the same time. Now because of the virus I can't have the reconstruction and I'm on a waiting list of people needing surgery that gets discussed and prioritised weekly. No-one is monitoring me while I'm getting beaten to the surgery slots every week by people with a more pressing surgery need. I totally understand this but it doesn't make me feel any better.... how will anyone know when I become most urgent? Will I ever get the surgery? 

It was also hard enough processing having a mastectomy but now knowing I'll be flat on one side is heartbreaking. I can't seem to find photos of how it will look or what clothes I'll be able to wear.