Bilateral Mastectomy and reconstruction

Going through breast cancer treatment Surgery
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Hi my name is Nicki and I’m new to this forum.  I have just had a bilateral mastectomy and immediate reconstruction with expander implants with mesh and would like to share my story and hopefully receive some helpful advice for the journey I have ahead.

 

It is the second time I have had breast cancer. The first time was in 2003 and I had a lumpectomy followed by chemotherapy, radiotherapy and Tamoxifen drug for five years. My  second lump was found last July and I had a lumpectomy as scar tissue was suspected.  Sadly it was a new tumour and I was advised to have a mastectomy.  I had a genetics test as BC has been on both sides of my family.  Thankfully my gene’s had no mutations and were therefore negative. I was put on Leterozole drug as I’m post menapausal, but not sure if I will need to stay on it.  I won’t be having any chemo or radiotherapy this time.

I wondered if anyone has had the same op as me and what their recovery was like.  It has only been 4 days since my op and I am very sore and bruised and have swelling. My drains came out on day 3.  My expanders were filled with 300ml in theatre but look freaky and misshapen. I was pleased initially when I woke up in recovery to see I wasn’t completely flat chested. I will have a top up of saline in 6 weeks and the option to have softer silicone implants later which I think will be preferable.  

I’m a positive person and usually good at handling stress but what I didn’t factor in for after my op was how emotional I would feel.  I couldn’t even pinpoint any one reason for feeling sorry for myself.  Is this a normal occurrence after this type of invasive surgery? Also does the tightness subside?  It feels like I’m wearing a really uncomfortable tight bra and want to take the damn thing off lol.

 

In fact I’m not sure whether i should be wearing a sports bra and if so how soon should I start wearing it?  

Any advice would be welcome.

 

kind regards Nicki

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Hi Nicki

 

I had a mastectomy with implant recon on my right breast Thursday, I was discharged Friday morning. I have pain in my breast bone when I’m getting up or down. I’m taking  2 x paracetamol at 6am if needed followed by one ibuprofen mid am, repeated like this until bedtime, this is working for the most part for me. I brought post surgery bras from Asda in size large, I’m a small 16, my surgeon said these were a good bra to wear and I have to wear one for 24hours for 4 weeks. I’ve been trying to move around most days, but nothing too strenuous- I was pleased I managed to fully dress myself today.

 

my husband looked at my new breast yesterday, he said it looked good, I’m still yet to dare to look.

 

I would say how you’re feeling is totally normal, I too am like you normally positive, but I don’t think I’ve ever cried so much in a short space of time.

 

I’m hoping for my drains to come out Thursday at the moment I’m at around 45/50mls over 24 hours, your drains came out quick, I’m assuming the level was down enough? 

Wishing you a speedy healing process.

 

sorry if I’ve been of no help, I’m new to all this.

 

Rachel

x

 

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Hi Nicki - I just finished doing a long reply to you and its disappeared! So I’ll try again and hope my original reply doesn’t somehow end being posted so you’d have 2 for the price of 1. ?

I was diagnosed with IDC and DCIS of my right breast in August 2018 and had a right sided mastectomy at the end of September 2018 with a tissue expander implant. Like you there was a small amount of saline inserted in the expander in theatre. I then had weekly ‘fills’ of 50cc of saline each appointment for 6 weeks, until it reached the appropriate size.

At each fill as the skin was being stretched it did feel sore and uncomfortable for a few days, but I only needed to take a couple of paracetomol, and they did the trick.

I had my last ‘fill’ in November 2018 and then had to wait for 3 months for it all to settle into place and went back in February 2019 to see the consultant, at that point I was put on a waiting list to have the exchange surgery - to get the expander exchanged for a more softer natural silicone implant. I was told it would be 3 months to wait for the op but it ended up 6 months! I was at my wits end by this point as the expander never really felt comfortable, it always felt hard and the port was sticking in me and I was aware of it constantly.

I was phoning the hospital every few weeks to see if I was any higher up the list to get the exchange done - but as it wasn’t seen as urgent I was told it would be when it would be. It was only after I had a complete melt down on the phone that things got moving and i had the exchange surgery in August last year.

I was so relieved to have the expander gone and the new silicone implant is much better, softer and more natural The breast still doesn’t look too great in my opinion, as I have a lot of puckering and large dent in it - but its better that still having cancer, so I’m grateful for that.

I have an appointment next Wednesday with the cosmetic surgeon to see about having a reduction and uplift of my left breast, which will hopefully give me some symmetry - as I’m VERY lopsided at the moment, he might even be able to do something about the puckering and dentin my ‘new’ breast if i’m lucky.

I also want to eventually have a new nipple created or tattoo’d or something - but I’m taking one step at a time.

I’m on letzerole, too, and will be for 5 years (well another 4 years for me now - 1 year down and 4 to go?)

It’s perfectly normal to feel sorry for yourself - I still get periods like that now - so if you need to cry or rant - go for it - you’re entitled to it I reckon.?

I feel like its all taking forever, but I’m getting there. If I can help any further let me know and keep us updated with your progress.

Take care and stay strong.

Lots of love

Helen?

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Hi Nicki

how are you doing?

i haven’t had your surgery but I am post op 3 days from thearapeitic mammoplaysty and sentinel node bx

i am also sore and feeling quite emotional.

re the bras I was told to wear mine for the next month day and night.

Could you ring your breast care nurse?

hope you have plenty of support at home.My husband has been amazing and we have our gorgeous little boy he is only 5 but he’s been looking after me.So hard with him being so young.

i think what I’m finding is just to go with however you’re feeling and take one day at a time anything else is just too much isn’t it.

hope you feel better and recover soon lovely x

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Hi Nicki, hope you are feeling a bit better, you sound a strong and positive person. I’m not in same position as you, but I am considering mastectomy after chemo finishes as opposed to radiotherapy. Had lumpectomy last August. Given your experience would you have considered a mastectomy as opposed to lumpectomy if you were given the choice?

Thanks

Michelle 

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Hi - I had my bilateral mastectomy surgery two weeks ago in Seattle - and have been wondering some of the same things! My chest feels tight like -like I have a tight wired bra - and i’m still swollen in spots, and under my arms where drains came out on Day 10. I’m wearing supportive sport bras most of the time (36A before surgery) since I had expanders placed during same surgery. They were filled with 100cc of saline, so I have a bit of a breast, but saggy skin too. Nipples saved. incision is underneath. Really worried that the longer I wait to fill, the more likely the expander will slip under my arm. With the virus situation, I doubt my dr. at Swedish will be able to do a fill next week. Anyone else worried about having to keep the expanders in for months and months?